0001
03/06/2010 - 10:53 am
What is your gender: F
How old are you: 24
At what age did you notice the change in your sense of smell: 20
What country do you live in: Ghana / Northern Region
What is your race/ethnicity: my race is help me
[...] am having a big problem which I want you to help me up. Please my problem is that, I don't
have sense of smell since 2006. and i have been sent to Hospital for that, and the doctors told
me that is natural. That is not a sickness. So up to now I don't have a sense of smell even if I
entered in to toilet room I don't here the sense of toilet.
Please, I want you to help me how to do so that I can also be hearing smell
0002
08/21/2010 - 3:06 pm
What is your gender: M
How old are you: 33
At what age did you notice the change in your sense of smell: 0
What country do you live in: USA
What is your race/ethnicity: Caucasian
As far back as I can remember, nowhere does a memory exist regarding smells or scents. As an
infant/todler, I did receive a head injury, so that should not be ruled out entirely. Up until I was
about 8 or 9 I would lie about my disability, since what kid wants to be different? Smelling
seemed to me like religion, you just had to have enough faith to make it true. I have never had
any tests or received any treatment. Whatever is out there is probably more expensive than I
can afford, so I never gave it much thought. Besides people seem to complain more about the
bad smells than they like the good. I am still a decent smell lier. Darling, what is that perfume
you are wearing? It smells intoxiating! I read an article recently where this guy with no smell
could not taste the difference between mint, peanut butter, or cherry icecream. I can easily
taste the difference between each, but would have no sensation if each were placed infront of
my face. I have always assum!
ed that my tastebuds became more accute to make up for my faulty snifter. So obviously
tecture also plays a major role. I have never been able to receive any sensation from smelling
things. I do notice gasoline if it were nearby. The vapors feel differently when I breathe.
thanks and good luck with your research!
0003
08/21/2010 - 7:49 pm
What is your gender: M
How old are you: 68
At what age did you notice the change in your sense of smell: 43
What country do you live in: Great Britain
What is your race/ethnicity: White, british
The following facts should be of great interest to you as I have discovered ways of regaining lost
sense of taste & smell. I lost my sense of taste & smell in 1985, at the time I was living in a 150
year cottage where there was evidence of damp mould - my doctor thought that this was the
causative factor.
In 1989 I was diagnosed with nasal polyps, these were removed by surgery the same year - no
return of senses.
In 1999 again polyps were removed by surgery ( but I was informed by the surgeon that as
surgical techniques had improved, greater success was expected. The very same evening after
the operation my senses had returned. Since then my senses have been good, fair & nonexistant.
During a time when my senses had disappeared I developed Polymyalgia
Rheumatica (quite severe) and was treated with Prednisolone - started on 15mg, I have
managed to reduce the dosage to 2mg. The strange thing was that my senses re-appeared &
have been fairly reliable since.
Earlier this year they disappeared again, but immediately came back again following a game of
tennis - I have been convinced that lack of circulation could be part of the problem.
Just over a week ago my senses disappeared & coincidentally my PMR flared up - I took 15mg of
prednisolone at 9.30am & my senses returned at 4.00pm the same day.
I hope that this information will help you to shed some light on this dreadful infliction.
0004
08/22/2010 - 7:59 pm
What is your gender: F
How old are you: 36
At what age did you notice the change in your sense of smell: 29
What country do you live in: United States
What is your race/ethnicity: Caucasian
I never had any allergies or symptoms of such until I gave birth to my first daughter at age 24. I
had her uneventfully at a freestanding birth center with no medication, so as I was being sent
home eight hours later they gave me a huge pill (I think 1000mg) of ibuprofen. While driving
home I noticed that it seemed difficult to breathe, but didn't think anything of it because in late
pregnancy my nasal membranes had been swollen anyway and I thought it was just the same
thing. An hour later I was rushing to the ER, completely unable to breathe. Turns out I had
developed an allergy to ibuprofen sometime during the pregnancy (I had taken it once in
second trimester during a fever without incident).
As it turned out, a whole spectrum of allergies seemed to have emerged during my pregnancy
because I was miserable for the first few months of my daughter's life... but I can still
powerfully remember her baby smell so I know I still had a sense of smell then. I finally
consulted with an allergist and was diagnosed with a number of allergies, as well as allergic
asthma, and started a course of medication that I've had to stay on ever since. This included a
nasal spray steroid, among other things, but I didn't end up using it very much because I didn't
understand the purpose and was concerned about taking so many medications after being on
none whatsoever. Sounds stupid, but it's true.
Four years later I had my son, and this is what I remember. When he was about five months old
there was some reason that my asthma was particularly troubling me, so my allergist put me on
a course of systemic steroids for about a week. On the second or third day as I picked up my
son, I realized that I could SMELL him, which immediately caused me to burst into tears because
I realized that I *hadn't* been smelling him all along! I went back to the allergist and explained
this, and when he examined my nose he called in two NPs to show them the polyps in my nose
because they were so conspicuous. I didn't want to remain on a continual course of prednisone
because of all the side effects, so within a week my sense of smell was gone again. I spent
ridiculous amounts of time every day with my nose to my son's little head, just inhaling his
smell. I don't know if anyone can comprehend what it's like missing that primal connection to
your child. There is something profound and powerful about a mother SMELLING her baby that
I cannot explain, but it is viscerally important.
So I don't know when I ceased to smell, but it was gradual enough that I didn't notice. That said,
the absence of smell is unspeakably painful. I am not a tearful person, but thinking about how I
was unable to smell my second and third children I feel something I can only describe as
mourning. It is equivalent to missing out on important stages of their development, like first
steps.
I have always loved to cook, but since I cannot taste food... can you even comprehend what this
does to a cook? One of the things that gave me greatest joy in life was cooking for my extended
family, and now it's nearly impossible to do so. I haven't stopped trying to learn new techniques
and trying new recipes, but I'm utterly beholden to others' opinions now and can't ever
improvise! Perhaps this sounds strange, but I ended up gaining almost twenty pounds before
realizing I was consuming more of every food in an effort to *taste* it. Because I loved to cook
(and eat!) before I lost my sense of smell I have strong memories of taste that are evoked by
texture and other sensual aspects of food, but it takes a while for them to unfold... hence I find
myself eating more. I also find that since I can only taste salt or sweetness, I gravitate toward
salty or sweet foods (perhaps this is very obvious, but it greatly changed the way I eat!). A salad
is no longer appetizing be!
cause the subtle flavor of the greens is gone, as is the complexity of any dressing, so it is like
eating paper with glue. Creamy textures are more satisfying somehow, but on the rare, perhaps
biannual occasions on which I've had to take systemic steroids to control my asthma, I have
ended up looking at them as holidays during which I try to schedule nothing else but interesting
meals and time to smell my children. I always find myself telling people ad nauseam during
these anosmia vacations that they cannot possibly comprehend how lucky they are to be able
to taste the pepper in food, the flavor of sherry in chowder, etc. etc. etc.
Quite apart from my own interests, it seems that every social occasion revolves around food or
drink. It's embarrassing to be asked to comment on this or that dish at a dinner party, for
example. I've just moved to wine country in California and can't taste wine. I've found myself
feeling quite depressed about my inability to take part in social events like wine or whiskey
tastings -- I mean, I do know how spoiled and privileged this makes me sound, but it's a real
detriment to me and really limits the social occasions I can attend. We've moved twice in three
years, and I swear that unless you're anosmic you don't realize that most opportunities to meet
new people involve tasting something and then discussing it. I've ended up just avoiding these
occasions altogether.
The other thing I've noticed during my anosmia vacations is just how rich the world becomes
when you can smell. The rich smell of the earth after a rain, the offensive smells of cow manure
or diapers, the smell of exhaust from other cars. Another embarrassing thing I've run into was
when my last two children were babies -- I wouldn't notice that they had a dirty diaper, of
course. I had to set an alarm to check my third child's diaper every 30 minutes because I never
knew when she was going to be dirty, and she was very susceptible to rashes. I've also had a
number of embarrassing situations that involved people having to either inform me or inquire
of me whether I planned ever to change the baby's diaper; I remember two different mothers
who treated me with great disgust, as if I didn't care about my child or hygiene, almost as if I
were abusive. I had another horrible experience when I apparently left a load of laundry in the
washing machine for too long. The head of the daycamp where I was sending my daughter took
me aside on the third day of the week and asked why I was sending my daughter to camp in
clothing that smelled of mildew, and if there was some problem at home, etc. It was absolutely
mortifying. My daughter was too young to say anything about it, so there I was. I've had similar
incidents during the entirety of my motherhood (another time my son apparently wore
underpants to school in which he'd peed the night before, and I had no idea) and I always take
precautions to prevent recurrences of those things, but even as I write this I realize I'm always
just bracing myself for the next thing I do that makes it seem like I'm neglecting my children. It's
a source of enormous anxiety for me. People simply don't believe you when you say you have
no sense of smell! They assume you're making an excuse, or hyperbolizing.
Speaking of hygiene, this is another horrible handicap of anosmia. This is so embarrassing that
it's very difficult even to write it. Of course I always use deodorant, but I literally cannot tell
when I smell and need to take precautions to make sure I'm not offending others. I've realized
that it's much easier for me to forget to put on deodorant now, and also to brush my teeth. I
always notice during my courses of prednisone that I need to brush my teeth three times a day,
whereas I probably only brush once a day when I can't smell. The same is true of my hair -- I
find I will wash it more often when I can smell. I know this is difficult to believe for others, but I
don't think people realize how closely tied hygiene and smell really are in terms of actual selfcare.
I've also found it difficult to protect my children from some dangerous situations. First, I cannot
smell the exhaust from other cars pervading my car. As my oldest has gotten older, she's been
able to tell me better when there's a bad smell, but I often have to drive with just the younger
children in the car. I'm always trying to guess if the old-looking car in front of us might be
spewing hydrocarbons into my ventilation system. Second, when I was pregnant once I was
cleaning our bathroom. I noticed I was feeling a little light-headed but attributed it to the
pregnancy and carried on. When my husband returned home and came into the bathroom, he
immediately rushed me out because the smell of whatever cleaning product I was using was
apparently so strong that he was worried... rightly so, evidently, because I was no longer lightheaded after leaving the room. We have recently moved to a house that does not use natural
gas, something for which I have been waiting for t!
hree years because I live in fear that there will be a leak that I don't smell.
During my last course of steroids a few months ago, I went to a boutique store that lets you
create your own scent of hand lotion, etc. They have a bar of something like 200 scents you can
add. I was probably the only person they've ever had who took the time to smell every single
one, and I'm quite sure I was the only one who intermittently cried. For instance, when I
smelled a scent called "dirt," the memory of my great-grandfather's dirt-walled cellar was so
strong I could remember features of his face I haven't in years. He died when I was six, but that
smell brought back his face in a way that nothing else has.
I don't care as much ultimately about what the public awareness of this condition is; I'm
resigned to anosmia being a joke for those who don't have it. I do wish that doctors took it
more seriously. I have talked to too many doctors in the course of all our moves who literally
DID NOT BELIEVE that I cannot smell. Some want to blame me, saying I'm simply not taking my
nasal steroid properly or often enough. (I have gotten quite religious about it, but it works only
intermittently and never to the extent of the systemic prednisone.) One especially ignorant
fellow just didn't believe that I'm unable to smell anything at all and treated me as if I were
some hysterical female, telling me it was entirely psychosomatic. This needs to change, and this
is why I've just spent the last 45 minutes pouring all this out for you. Best of luck with your
research.
0005
09/14/2010 - 8:56 pm
What is your gender: M
How old are you: 50
At what age did you notice the change in your sense of smell: 44
What country do you live in: USA
What is your race/ethnicity: White
For at least 20 years, I have had seasonal allergies. When affected by the allergies, I often
suffered from a diminished sense of smell -- but only temporarily. The sense would return,
much like many people encounter when hit with a common cold. Then about six years ago, I
noticed my sense of smell wasn't bouncing back as quickly or as completely when my allergies
subsided. At first, the difference was barely perceptible. Eventually, the bounce back never
really happened. My sense of smell just kind of faded away. Other than very minor hints of
smell/taste that on rare occasion occur first thing in the morning, my sense of smell has yet to
return after six years. Years ago, I went to an ENT, and had a CT scan to look for any blockages.
Nothing. I exchanged several emails with Richard Doty, Ph.D. at Smell & Taste Center at the
University of Pennsylvania -- he was very gracious responding to my inquiries -- but, alas, he
was unable to offer much in the way of encoura!
gement. I went to a Neurologist. He was utterly unprepared to deal with the issue. He actually
started searching the web for information on anosmia while I was in the office!
All in all, I'm lving with the affliction okay. I have a wife and kids in the house to tell me if they
smell gas, or if the milk tastes funny. But it's a huge loss. I fully understand the risk of
depression from this condition. Besides the loss of smell, I've suffered a complete loss of flavortasting ability. That is an immense loss as well. Even more so is the loss of memories that smell
used to so vividly unlock. I so miss the fragrance of a pine forest to take me back to my
childhood camping in the mountains. I want to smell the turkey cooking on Thanksgiving. I want
to smell the chocolate when I walk into a See's Candy store!
It's a weird affliction. People don't really get it. They think its not as big a deal as it is. After all,
they figure anosmics aren't disabled. We don't need seeing-eye dogs or sign language to
interact with our environment. And they are right -- partly. We can function without drawing
attention to our plight. We can do virtually everything we could before we lost our sense of
smell, except enjoy the immensely important aspects of human life that most people take for
granted.
0006
09/15/2010 - 1:42 am
What is your gender: F
How old are you: 65
At what age did you notice the change in your sense of smell: 55
What country do you live in: australia
What is your race/ethnicity: caucasian
about ten years ago i started to react to different smells, particularly chemical types although
spearmint is also bad, i noticed after using a spearment perfumed dishwashing liquid it stayed
in my head for days. then something i dont know what is ,i noticed in church so i had to sit at
the back to make a quick getaway if needed and the same smell in a public toilet, so i am
guessing its a cleanng agent of some kind. i can go for weeks ok then it hits me again , i usually
sleep with the fan blowing on my face and vicks pluged up my nose. i havnt told my doctor as i
have always thought i was alone in this. [...]
0007
11/22/2010 - 4:21 pm
What is your gender: F
How old are you: 49
At what age did you notice the change in your sense of smell: 48
What country do you live in: USA
What is your race/ethnicity: causian
For about a year maybe a little longer i get these clouds of smell i call them.. no one else smells
them.. But they are very real to me.They are very different and then at times all the same.. At
times it is like the room if filled with ciggerette smoke so full it burns the back of my throat..
and yet no one in our house smokes.. No one else smels it. Cherry pipe tobbacco..really strong..
Brick masonry.. Really strong.. the smell of brick being cut with a brick saw.. odd i know..
jasmine.. a smell i dont know but so sweet it makes me sick.. ok all body washes shampoos
make me sick they smell like poop.. i know that sounds crazy.. but for real.. they smell loke
crap.. some food asian food mostly just reeks like an out house.. My meds are trileptal and
topamax.. of which i take for Trigeminal neuralgia.
0008
03/10/2011 - 3:19 pm
What is your gender: F
How old are you: 27
At what age did you notice the change in your sense of smell: 18
What country do you live in: United States
What is your race/ethnicity: White
In May of 2002 I was in a serious car accident, involving two cars (other than the one I was in). I
hit my head in two different places. Above my right eye, very close to my temple, and the left
side of the crown of my head. In the hospital, I realized food tasted differently, but I thought
that it was just because it was hospital food. When I got out of the hospital, it took maybe a
week or two for me to realized I couldn't smell anything. The day I finally did realized, I walked
in the kitchen where my dad was cooking something with garlic (which I couldn't smell),I
hugged my mother and couldn'y smell her perfume. I said to her "mom, why does everything
smell the same?" and when she asked me what everything smelled like, I said "nothing". All I
could taste was salt and sugar. and I sometimes thought i could smell lemons. When I went to
the doctor, he sent me for a special CAT scan. And after he read the results he informed me
that my brain had sheered the olfactory nerves completely, and that I would never smell again.
It took a long time to stop feeling like a freak. But now, almost 10 years later, people still don't
understand what its like for me. I'm constantly asked to smell things, by people who know I
can't smell, but forget. Some people don't believe me and try to force me to smell things. I have
a two year old daughter and I've never been able tpo smell her, or my fiancee. I miss the smell
of pickles, and early september mornings. The ocean and gasoline. Matches and garlic. My
mothers perfume and the smell of my best friends bed room. puppies and cakes and cinammon
and roses...I could go on and on. I wonder sometimes if there was a way for my smell to come
back, if I would be sick. All the smells of the world coming back at once? But I'd take the
headache and the nausea. I woul do anything to stop having to fear smoke or fire or spoiled
milk. To feel like a normal person again. There isn't anything I wouldn't do.
0009
03/16/2011 - 12:04pm
What is your gender: M
How old are you: 52
At what age did you notice the change in your sense of smell: 7
What country do you live in: usa
What is your race/ethnicity: white
At an early age, I realized I couldn't smell. my parents were skeptical about it when I reported it.
They/I didnt follow up. I pretended to be able to smell, rather than tell people. I was like a point
of shame, oddly. I used to pretend I could smell, mimicing disgust when bad smells were
detected by my friends. I couldnt smell nice smells, but ironically, I also couldn't detect bad
odors. Like diapers. or spoiled food. I have come to rely on my vision, and taste to detect food. I
have been fooled, and gotten sick a few times, however. I have managed to compensate for the
lack of a working nose. But several occassions have taken place that were dangerous. Once, our
kitchen stove caugt fire, I was in the next room, but didnt know anything was wrong until my
wife came into the house screaming. Another time I entered a house with a bad gas leak, and
was unable to detect the irritant placed into the natural gas. Others did, and I ventilated the
basement where I was. I detect amonia, and very strong cleaners, but mainly from the effect of
the vapors which invade my mouth, rather than my nose.
I visited an EnT who examined me a few years back, but never went back to him for a followup.
I was a little embarassed to go back, and he never contacted me with any information about my
visit/condition. He didnt describe my condition with a diagnosis.
A co-worker went to an ENT recently, and endured a surgical procedure which restored her
sense of smell.
she loves smelling cooking, and flowers, etc... But she complains that she is overwhelmed by
really bad smells, like rotting garbage, etc....
I listened to her with interest, but never made the choices to follow her decisions for myself..
I am concerned, now that I am well into middle age, that my lack of smell may now contribute
to a degeneration of my mental faculties in later years. My mother has Alzheimers. I also have
been made aware that people who experience hearing loss also suffer from cerebral shutdown
in important cognitive areas of their brains. I am wondering if such a phenomenon can occur
due to the lack of olfactory abilities?
I think I loof for a better ENT. [...]
0010
04/24/2011 - 2:33 pm
What is your gender: M
How old are you: 53
At what age did you notice the change in your sense of smell: 18
What country do you live in: Canada
What is your race/ethnicity: Acadian/French
Suffered from a broken nose when I was about 17 and subsequently have broken it several
times - the most recent 2 years ago. I do not have any idea when I actually lost my ability to
smell but first noticed it when I was about 20. No real memory of odors actually exist in my
mind so onset is hard to pinpoint. It has definitely effected my taste. All food is bland (unless its
salty, bitter, sweet or sour). It is hard to describe its effect on my eating. My enthusiasm for
food has almost vanished with the exception with my unhealthy love of very salty food. I have
recently been diagnosed with hypertension so I'm off salt which makes things very difficult.
Conversations about food is weird and I often pretend to taste things. My wife is aware of my
disability but she can't quite understand the repercussions. My sleep is impaired sometimes
because I wake up fearing a house fire and can sometimes convince myself that I can see
smoke. I often need to get up and check the house for fires or gas leaks. I cannot eat leftovers
unless my wife smells them first and when I cook meals I am usually guessing with many of the
ingredients and sometimes overdo things. I have not found anyone else who has this problem
and have not been able to talk about it with others. Its good to write this at least. Thanks for
the opportunity. [...]
0011
03/28/2010 - 7:18 pm
What is your gender: M
How old are you: 48
At what age did you notice the change in your sense of smell: 42
What country do you live in: United States of America
What is your race/ethnicity: Caucasian
About 6 years ago I noticed that many smells were becoming more intense. Unfortunately this
only occurred with unpleasant smells. Nearly all of my wife's beauty products became nearly
unbearable and my wife's breath took on a deeply sour note (that only I can smell.) Many foods
are now too intense to be around. I have become depressed since I can rarely escape bad
smells in many places and have researched methods to desensitize my olfaction. I have gone so
far as to attempt to self-induce anosmia. My relationship with my wife has degenerated since I
cringe when she comes within smelling distance. My wife is not the only source of these
unpleasant smells (I even went to therapy about it, in case it was hypochondria.)
0012
05/30/2011 - 5:09 pm
What is your gender: M
How old are you: 64
At what age did you notice the change in your sense of smell: 59
What country do you live in: USA
What is your race/ethnicity: white
I lost all sense of smell about 4 years ago.
No head trauma, no illness, no allergy to anything or any drug, no specific exposure event that I
can recall.
I don't know if it was sudden or not.
I didn't notice myself, people would tell me they smell things and I just wouldn't.
I was unaware of any changes to taste of food, etc.
Now, however, I realize that I cannot smell any food, but things taste normal enough not to
notice or care. (More on that below.)
I manage an apartment building and tenants would sometimes come to me saying things like "it
smells bad in the laundry room, like a dead animal" but I would smell nothing. I would search
the corners and find nothing, and tighten the gas connections, and they would say it was fine
now. Then they would say there's the strong smell of gas around the BBQ grill. I couldn't smell
anything but I would notice that the gas was on with no pilot light and turn it off.
They would comment on the smell of roses and jasmine in the garden but I couldn't detect it.
Didn't know I had a problem.
At some point I realized I could not smell coffee grounds or coffee brewing, nor toast starting to
burn when it would set off the smoke detector.
Once I realized I could not smell I tried everything, newly opened spice jars, pickles, rubbing
alcohol (careful not to inhale, but it used to gag me right away), every sort of strong food odor,
etc.
I could no longer smell soup simmering or hamburgers frying.
Zilch. Not a hint of odor of anything.
But I can still taste all I need to. All fruits taste different, as do all cold-cuts. I can taste various
condiments and distinguish brands of salami and types of cheese. So lack of smell does not
really make me despair about diet. But then, I never was a foodie. Never could get interested in
cooking or fussing about savoring foods in restaurants.
I then went to Kaiser medical and told the GP, who did not know such a symptom existed. He
was literally stunned that this could happen and stuck a couple things like coffee under my nose
to test me.
He's not a great doctor, and didn't even look up my nose with a light, much less a scope. I felt
sure he'd never looked up anyone's nose, wouldn't know what to look for.
When he found out it had a name, anosmia, he looked up possible causes in their computer and
decided that he should test things (he liked tests, because it required nothing from him. So to
test for brain tumors and nasal malformations, so he sent me for an MRI and a CT scan. Those
came back "no abnormalities, no sinusitis".
But he refused to send me to an ENT specialist because "I cannot send you unless I first
diagnose a condition they can treat, like sinusitis"
Bureaucracy. I could see he was a wimp, scared of the older bully woman doctor who was
always shouting and ordering people around the clinic.
I wasn't up to confronting her either.
I checked the web and could find no hope of treatment anywhere.
So I gave up.
For years.
Then just a few weeks ago I found a book review of "Navigating Smell and Taste Disorders" and
it started me looking again.
It said the cells regenerate, so there is hope.
It said I should test for B12, thyroid hormone and zinc levels. So I plan to insist Kaiser do that
much. If they refuse I will get another doctor.
I will also try again to see a specialist, perhaps write to one asking for him to get me a referral.
And the book mentioned using a "sodium citrate buffer" nasal rinse, so I might try that on my
own if I can figure out the correct dosage.
In terms of what might have caused it, since it was not noticed at the time I can only guess it
was one of many things I've done over the years that required ventilation. That includes using
spray paint (including staincover with zinc, a chemical with nasal implications),
hooking up a dryer, where I may have been exposed to natural gas, using spray mold killer spray
in confined bathtub areas, spraying for wasps and flies, spray lubricants like WD40. A lot of
different sprays used over the years. Needless to say, I'm avoiding all of those things now.
Also, there's the possibility it's something I ingested, a medicine etc., or it might have been a
drugstore item.
During the time before I lost my sense of smell, I had bad reactions to Levitra and Viagra and a
niacin pill. In each of these cases, my face got very red. I tried each of these on two occasions
but threw them out as clearly dangerous. I know ED pills can affect hearing and vision, so that
sounds an alarm of sorts.
I also took a prescription oral antibiotic for an infected scrape on my leg that gave me diarrhea,
but that was predicted on the warning label.
In terms of over-the-counter stuff, I used JustForMen hair dye to cover gray. I don't think it has
ammonia or bleach but would smell up the bathroom. I also tried tooth bleaching tapes and
gels, but not for long. And I used a toothpaste with all sorts of whiteners and anti-tartar
chemicals that now scare me, as I'm sure nobody ever tested them with smell in mind. Needless
to say, I'm avoiding all of those now.
I recently realized there are two things I can smell, but now learned they are probably not being
smelled by my main smell organ. Still, it was news.
I could smell "locker room mildew" in a pile of rags that sat on the patio for a week. But when I
tried to repeat the smell I couldn't. Perhaps I broke up the scent when first disturbing the pile.
Then yesterday I smelled a diesel truck that had just come to a stop. But again, when I tried to
repeat it the smell was gone. I don't think these smells were "Pavlovian memories" because
they took me by surprise when I hadn't seen the source first.
I'll try to run into them again, but I'm not sure what that would prove.
If you think I should be doing something specific, please let me know.
Thanks.
0013
02/07/2010 - 8:01 pm
What is your gender: M
How old are you: 69
At what age did you notice the change in your sense of smell: 55
What country do you live in: Scotland
What is your race/ethnicity: irish/scottish
I had a good sense of smell and had been able to identify many wines by taste/smell. Then
found that my sense of smell was disappearing.
During this period I found that when I was exercising - mostly running - I could regain my sense
of smell. During a dinner party when a good wine was served I would excuse myself from the
room and run up and down the stairs several times. This restored my sense of smell for a
period.
But eventually I stopped smelling entirely. I visited the doctor to enquire and was referred to a
ENT specialist. He suggested that it was possibly due to "polyps" in my sinuses. I was operated
upon but it did not help.
When I requested more help a further operation to clear polyps from my sinuses was
performed but this also failed to restore any sense of smell. Various nasal sprays were
prescribed but to no avail
I abandoned further treatment but then read in the New Scientist about a treatment using
"Theophyllin" which had been found to sometimes restore damaged smell receptors. After six
months of treatment by inhalers I again gave up as I had not experienced any improvement.
However a couple of months later I went to Australia and went scuba diving on the Barrier reef
and after a very slight nose bleed my sense of smell reappeared dramatically and I could smell
strongly and it stayed there for almost a month. It was an very enjoyable period and meals
were like eating in "technicolor"
After returning home I revisited the doctor and told him of my experience. After almost a year I
was referred, last summer to an ENT specialist again. The specialist said that he could observe
polyps again and prescribed an inhaler but my sense of smell still did not return so I was given a
short course of strong steroid tablets and my sense of smell again returned last August. The
specialist said that it was not advisable to continue on such steroids for a prolonged period.
Shortly after stopping the steroids the sense of smell again disappeared.
Since then I have been using Flixonase "nasules" which I gather was a weaker but more
localized steroid. This enabled me to breath much more easily through my nose. The specialist
said that the polyps had disappeared and recently changed me to a nasal spray called Avamys.
But smell apart I am in excellent health and able to play squash and go the gym regularly
although I have given up my running. I have put on weight recently since I stopped running I am
6 ft and 90 Kg
0014
07/04/2011 - 11:20 am
What is your gender: F
How old are you: 62
At what age did you notice the change in your sense of smell: 13
What country do you live in: United States
What is your race/ethnicity: Caucasian
When I was four, I had a head injury. The local fire hydrant was opened for all the
neighborhood children to cool off. During one of these times, I slipped and hit the left side of
my temple against the street curb. This may have caused my anosmia.
It wasn't until years later, at thirteen my family realized I couldn't smell. I was told I could have
a pet cat as long as I took care of it and one of those responsibilities was to change the cat box
as soon as I smelt it. Needless to say I was in constant trouble and was thought to be
irresponsible and lazy. Eventually I was able to convince others that I just couldn't smell.
We were a poor family of five children and only one income, so my problem was put on hold
and I learned to just get on without it.
At 18, I married and moved to London, England. I began to persue this issue after the birth of
my first child and the need to be able to smell became more important. A London doctor began
to help me. He asked me to smell from a jar he had in his office. He placed it under my nose to
smell, but of course I couldn't smell it. He told me it was ether. Unfortunately, I never persued
this issue and returned to the States.
Since then, I just coped without it and conscentrated on raising my family. Whenever I tried to
inquire about it Stateside, Doctors here would tell me to forget about it since I had learned to
live without it all these years. I had health insurance, but they would tell me I was lucky and
that I should be glad I couldn't smell most things.
Life is not easy without it though.
For example: I am still surprised when people say things like "don't you love walking into a
florist shop?" "Because of how pretty the flowers are?" I would ask. "No, because of the
smells." Never realized flowers have different smells, and not just roses which I have often
heard people comment about.
I wear perfume to please the people who buy it for me, but I am never sure how much to use
unless I ask someone to "smell me to see if I'm okay".
I am constantly worried about offending people around me by body odor, especially people I
have just met or am trying to make a favorable impression. If you're blind, people forgive you if
you are wearing mismatched socks, but they can't see if you have anosmia and therefore a
reason why you may have undetected body odor. (Please do not feel that I am understating the
problem of being blind)
I am now 62 and retired. I don't socialize too often although I have always had an outgoing
personality and love to be with people. Ihave often heard people say to "take time to smell the
roses" and before I die, I wish someday I can.
Thank you for letting me tell you my story.
[...]
0015
08/18/2011 - 8:39 am
What is your gender: F
How old are you: 64
At what age did you notice the change in your sense of smell: 50
What country do you live in: England
What is your race/ethnicity: white British
I have suffered with nasal polyps since 1972 when I had a polypectomy. My sense of smell was
intact after the operation. I had a further operation on my nose in approximately 1979/80 as
the polyps had returned and I also had a piece of bone removed to make my breathing easier.
My sense of smell was intact after this operation. I have always suffered with mild asthma
during my adult life and have taken antihistamine tablets continuously to prevent chronic
rhinitis.
As far as I can remember my sense of smell must have deteriorated so slowly that I did not
realise that it had gone until it would return very occasionally, sometimes only for a couple of
hours. This was noticeable since I was about 50 years of age or thereabouts. It often returns
with no warning and it is as though someone has turned my nose on with the flick of a switch
and it disappears again just as quickly.
I am at present taking flixonase nasal spray daily and one antihistamine daily which keeps my
nose clear. The strangest thing is that following a long haul flight my sense of smell returns
sometimes. We travel to Kenya frequently and after the last three visits my sense of smell
returned. The first time it took a week after landing in Nairobi to return. The second visit it
returned within two hours of landing in Nairobi and on the third visit it returned within 20
minutes of us landing back in the UK having been in Kenya for one week. After these visits my
sense of smell has stayed with me for about 6 weeks and then gradually disappears again. It
also returned about 8 years ago after landing in Boston, USA but disappeared again as soon as
we got home. I remember a trip to Hong Kong ten years ago and, again, it returned for a while
only to disappear on our return to the UK. It does not always work after a long haul flight as I
make many trips to Hong Kong and it does !
not come back on every trip.
I have asked my Doctor if anything can be done about the loss of a sense of smell and he said
no. I have had a recent scan and I have some more nasal polyps on the left side but they are
being kept in check with the nasal spray and do not need surgery at the moment.
I would be very interested to know if anyone else can recount a similar story.
0016
08/18/2011 - 9:29 pm
What is your gender: M
How old are you: 58
At what age did you notice the change in your sense of smell: 48
What country do you live in: Australia
What is your race/ethnicity: Caucasian
I was working in the IT industry. I regularly travelled across SE Asia, India and the US. I was
probably flying every couple of weeks and did about 4 round the world trips annually.
I started getting a lot of colds and sinus infections. These seemed to be aggravated with the
flying and I never seemed to get over one infection before I got the next. I have always been
fairly active and have no weight issues or other medical problems. I was however under a lot of
work related stress.
The sinuses got so blocked that I was referred to an ENT surgeon and I had a FESS and grommet
inserted in my right ear (2002). This cleared the sinus but about 3-6 months after the op I
started to notice periods were my sense of smell and taste was compromised. The periods
would be for a couple of days My ENT surgeon showed a complete lack of empathy and said
this sometimes happened. Over the next couple of years I saw 3 other ENT specialists but
noone could help.
At the end of 2002 I lost my IT job and in 2003 started a small business with a colleague - we are
still running that business today and there is virtually no travel involved.
Two years ago my loss of taste and smell was almost permanent, I would regain it every now
and again but only for hours up to a day or so. I decided to see another ENT specialist.
Again I needed a FESS but this was required because he had detected a mucosil which was
putting pressure on the back of my eye. I had the op and after the swelling etc had gone down I
did have a slight return of smell and taste but once more this dissappeared shortly after. Since
then I have been seen him on a regular basis and have also seen an immunologist. Nothing has
really worked but oddly when I have the endoscopic examination, after the anaesthtic has worn
off I have had recovery of taste and smell. Out of the last 5 examinations I have regained the
senses on 4 occasions. It comes back suddenly - like someone has flicked on a switch. The last
time I had my sense of smell and taste only for about an hour... the prvious time it laste about a
month. My ENT guy cannot explain it and he does not know why it should be happening. He
had told me that the sense of smell is a use it or lose it type of function but I tell you when the
sense comes back it is full on.
I would love to get my sense of smell and taste back but at the moment I have no clear way
forward on how to achieve this. I'm sure it is a physical thing, I mean basically shoving a rod up
my nose and wiggling it about (the endoscopic procedure!!) seems to have an 80% chance of
restoring my sense of smell albeit temporarily!
My ENT guy says my sinuses are completely open and currently I have no infection. I use
nasonex spray daily to keep the polyps away so that's were we are at...
0017
09/23/2011 - 5:53 pm
What is your gender: M
How old are you: 67
At what age did you notice the change in your sense of smell: 67
What country do you live in: USA
What is your race/ethnicity: Caucasian
About a month ago I began to sense a constant odor --- not sweet, not sharp, not foul. I had
never smelled it before. It is dull, most like a medicine smell. It is constantly with me. If I hold
my nose I do not smell it.
I've thought about seeing an ENT, but in reading up on the net many folks with a constant smell
sensation have found a visit to the doctor unhelpful.
During the day when I am focased on other matters I am not bothered by it.
0018
10/29/2011 - 2:25 am
What is your gender: F
How old are you: 65
At what age did you notice the change in your sense of smell: 55
What country do you live in: usa
What is your race/ethnicity: caucasian
i first noticed a distinct unpleasant smell rather like smoke when no one else did and I found
the smell of grease very unpleasant as i drove past fast food resaurants with fryers.
Now, I think this was the first symptom as the olfactory nerves were dying and my sense of
smell became less acute from that point on. Now, I have largely lost the ability to smell certain
kinds of things, not all bad since i can't smell most unpleasant biological odors - changing the
litter box or cleaning up vomit no problem, for example, but dangerous since i don't smell
smoke unless it's quite concentrated or the additive to natural gas. I do smell mints, many
herbs, fruits and a variety of things, albeit less intensely. It seems to have stabilized, if that
makes sense.
I did have diabetes type II diagnosed at 50 but after bariatric surgery in 2000 and major weight
loss, i have been symptom free for nearly 12 years. I saw a specialist who said the cause could
have been anything including diabetic neuropathy. I had been thinking perhaps it was the result
of the surgery in some way - anethesia, whatever, since it more or less coincided with that
event.
Unfortunately, I do read research and have followed the emergent studies concerning smell
disorders and onset of Alzheimer's and Lewy Body dementias and Parkinson's, so I find it
disconcerting that in ordinary medical practice, physicians appear to be unconcerned as the
specialist I saw and that routine physical exams of elderly people like me don't even include the
question.
Actually, I would very much like to find and participate in a clinical study that would either
inform me about the cause and rule out or give warning in advance of incipient dementia.
that's my story. hope it helps your study. If you network with other researchers building studies
on the subject, i would be happy to participate, [...]
0019
11/01/2011 - 1:02pm
What is your gender: F
How old are you: 31
At what age did you notice the change in your sense of smell: 30
What country do you live in: U.S.
What is your race/ethnicity: White
I lost my sense of smell after suffering a concussion due to a fall. I didn't realize it was gone
until the day after my injury. When I started to become aware of the fact that I could not smell,
I went around my home, trying to smell anything-coffee, perfume, lotion, cat litter. I was quite
surprised. I did not know it was possible to lose one's sense of smell, and no one in the
emergency room had warned me that it was a possibility.
The loss was very hard to take. Not only had I completely lost my sense of smell, but I could not
distinguish flavors in food. Going from a world of smell to a world without smell overnight is
quite devastating. Without any fragrance, my days felt artificial. I felt a bit like I was acting out a
holodeck program.
But I think the most painful part of the loss was the total lack of compassion from others. The
doctors that I visited told me coldly that my sense of smell may return or it may not, as if it
were a trivial matter. Colleagues and acquantances joked that I wouldn't have to smell my
daughter's dirty diapers anymore. A family member, upon hearing of my loss, asked me to give
her all of my bath soaps.
It has been about 5 months since my injury. I've had the phantom smell, sometimes constantly
and sometimes intermittently, for over 3 months (none of the doctors warned me about that,
either). I've adapted to the loss; I no longer feel like I'm trapped in an artificial world. I've found
foods that I can enjoy, and stopped drinking soda, which now tastes metallic. I have some hope
that my sense of smell will return.
I have been greatly disappointed with the information provided to me by doctors since my
injury. I have gathered most of my knowledge on head injuries and anosmia from books,
articles, and others with similar injuries. The medical professionals seem either clueless about
this condition or completely unwilling to offer any information or advice.
0020
05/24/2010 - 7:06pm
What is your gender: F
How old are you: 25
At what age did you notice the change in your sense of smell: 12
What country do you live in: USA
What is your race/ethnicity: White
I had a head injury in a car accident when I was 12. I woke from my coma without a sense of
smell. I could not smell anything for 11 years, really forgot what "smell" meant not too long
after losing my sense of smell. I started taking Depakote a couple of years ago to treat
migraines/seizures from the head injury. Sometimes, since I started the Depakote, I perceive
scents. I've "smelled", I think, pizza, coffee, laundry from the dryer, Buffalo sauce and a
cigarette. The smelling sensation is very rare but I haven't had anything like it since pre-head
injury. People always ask me about taste. I think I taste quite a bit. I have a hard time naming
the flavor of something if the choices are in the same family (i.e. which fruit flavor an unmarked
candy is). But I know which ones I like and don't like. I know I like certain brands of coffee and
not others. Lack of smell does not decrease my sex drive at all. I worry about smelling genetic
differeces but that's the only sexual hindrance. I get the feeling that people think I am lying
about my smell a lot; especially once they see me enjoy food. That's pretty aggravating. When I
was 12 and first told my doctors I couldn't smell anymore they acted like it was impossible. I
eventually met a number of other people who lost their smell after a head injury. It didn't make
us friends but it helps knowig they're out there. I feel paranoid about how I smell often. Often
when people say something smells bad I wonder if they mean me. In fact, my friends tell me I
wash clothes too much; that my clothes smell like laundry detergent. I still wash them a lot. I
stay away from wearing fragrance. I use scented body wash and only Dove and unscented
everything else. The only things I get really sad that I can't smell are Yankee candles. They have
such pretty pictures and colors. I worked at Hallmark at one point and looking at the Yankee
candle display could make me cry every now and then. I do get angry that people don't treat
anosmia like a real problem. There is very little awareness or acceptance or understanding from
many.
0021
11/07/2011 - 5:13am
What is your gender: F
How old are you: 25
At what age did you notice the change in your sense of smell: 12
What country do you live in: maldives
What is your race/ethnicity: maldivian
while i was 12 my nose hit with a chair and lot of blood came from my nose doctor said that
nothing happened to my nose but from that day onwards i can just smell very few things. if
even the smell is very strong also only few times i'm able to know it.because for this REASON
ITS DIFFICULT FOR ME TO live with people arund with me as they smell i don't smell and if
ppeaple ask me i feel shy
0022
06/01/2010 - 10:21 pm
What is your gender: M
How old are you: 6
At what age did you notice the change in your sense of smell: 6
What country do you live in: us
What is your race/ethnicity: white
My son, who is 6.5 years old, starting asking me this school year how to smell. He is a bright
child and I couldn't understand how he didn't know. I told him to just sniff in through his nose
and smell will happen. Well, this was the beginning of many "smell tests" that I created. He
apparently has no sense of smell at all. Interestly, the biggest (and only) issue I've had with him
is his eating. Being a Speech Language Pathologist, I tried so hard to find the root of his
extremely picking eating. I thought he might have sensory issues because he focused so much
on what foods look like. THe sensory thing never made sense because he loved all sorts of junk
food despite texture. Turns out, he loves sweet and salty. I even remember noticing he never
commented on smell and at the time, wondering if that was part of this so called sensory thing
that didn't add up with him.
So after a year of feeding therapy in which the therapist really just tried to break through some
fears of food, it turns out that he has anosmia. I doubt the connection is a coindence.
Unfortunately, I have no idea if/what to do at this point. He recently got an MRI that showed
nothing. Wasn't a great one bc he was moving a bit but I was advised to let it go bc there are no
large tumors or masses.
I don't know if this is interesting to you or not because he never had a sense of smell so it may
not be relevant, but I thought I'd share.
[...]
0023
12/29/2009 - 11:13 am
What is your gender: F
How old are you: 52
At what age did you notice the change in your sense of smell: 50
What country do you live in: USA
What is your race/ethnicity: Caucasian
Head injury almost 3 years ago. Sheared my olfactory nerves. No chance of smell or taste
returning. Very depressed. Saw a psych but, with no experience in this condition she wasn't
much help. No attitude advice - just medication. Cannot seem to accept my fate. Not a terrible
cross to bear but cooking was my hobby. I'm beginning to just eat the cheapest most nutritious
foods but husband is worried that I am purposefully denying myself pleasure. He, like most
people, cannot understand what isolation this condition contains. I'm a cheap date but not so
much fun. Recently turned down a prized invitation to attend a wine and food festival
sponsored by premier restaurants in Atlanta. Couldn't get into it. Is this some sort of
punishment for past behavior? That seems like a very unhealthy attitude.
Questions and comments:
How do victims that have no hope of taste and smell ever returning cope?
0024
01/01/2010 - 4:50 am
What is your gender: F
How old are you: 40
At what age did you notice the change in your sense of smell: 33
What country do you live in: United States
What is your race/ethnicity: white
I had a golf ball sized tumor removed from the pocket in my forehead. The tumor being
wrapped around my 'smeller' resulted in it also being removed. I feel fortunate to have had this
sense for 33 years but am unsure how best to accommidate a daily routine without it. My
tastes consist of: sweet, sour, salty and spicy. Food in general is completely unappetizing and
withing 6 months after surgery I lost almost 20 lbs (I've always been tall and skinny anyway) and
my hair began to fall out, I assume because of the drastic weight loss. I'm currently coping by
relying heavily on my family, to 'be my nose', and I put a more than average amount of hot
sauce and/or salt on just about everything I eat. I feel stressed about not knowing..not knowing
if there's a garbage can in the house that needs attention, or if the cookies in the oven are
burning, or if the house smells like 'dog', or if that yogurt or sour cream is still good. However,
getting satisfaction from food and keep!
ing weight on seems to be the most challenging task for me.
Questions and comments:
Could stem cells be the answer to a situation such as mine, where the organs no longer exist? I
would be more than pleased to answer any questions or participate in any research activity if
you request. Any suggestions, tips, hints or links would also be helpful and greatly appreciated.
Thank you
0025
06/07/2010 - 4:55 pm
What is your gender: F
How old are you: 69
At what age did you notice the change in your sense of smell: 63
What country do you live in: england
What is your race/ethnicity: northern european
I had an extremely well developed sense of smell all my life but lost it suddenly after
contracting a flu like upper respiratory tract infection in May 2004, characterised by high
temperature and burning sensation in my nose and eyes. I was diagnosed as anosmic by an ENT
consultant after brain scans and taking an UPSIT test about 6 weeks later and told that I was
unlikely ever to recover my sense of smell.
My sense of taste in its strictest definition ie sweet,sour,salt,bitter and umami was unaffected
but I was unable to identify anything I was eating other than by texture(eg All cheese whether
cheddar or roquefort just tasted 'salty',all cakes/biscuits/puddings just tasted 'sweet' ,eggs
,cream,milk had no flavour at all,) and I couldn't cook with any confidence.
Equally distressingly I could not smell anything at allflowers/perfume//coffee/petrol/garlic/rotten fish/smoke/human or animal odours (good or
bad) Curiously ,although I couldn't identify any 'complete' smells, after a few weeks I began to
detect a very few single odour 'elements' - which I had never smelt in isolation before.The first
one I noticed was something present in the peel of citrus fruits ( which I normally love) which
made me feel sick- I was so sensitive to this that on one occasion I touched an orange at about
9 pm,washed my hands ,washed them again before filling a glass of water to put by my bedside,
woke at about 2am and took a sip of water and could still smell the 'orange' element on the
surface of the glass-5 hours after touching the fruit The second element I noticed was
something which must be present in the base of a number of household cleaning products and
toiletries- again a chemical smell which I had never smelled in isolation and found hard t!
o describe but which was very unpleasant to me and seemed to be everywhere. The third smell
was something in the skin of cucumber which made me feel nauseous.Although I really disliked
all these smells I was somwhat reassured because it suggested that something must be still
working in my olfactory system .
I was very disturbed and depressed by how much I was affected by my anosmia, I lost my
appetite, became very cautious about eating away from home because I knew I couldn't detect
meat or fish which was off, was worried that I might have left the gas on or set fire to
something without knowing it, felt extremely anxious in company unless I had just washed ,
cleaned my teeth and was wearing fresh clothes as I could not tell whether I had BO or not and
felt strangely distant from my family because I couldn't 'smell' them.
After a couple of years I gradually became aware of two more 'single' odours which were
'aromatic' in nature-something common to cedar and sandalwood( and petrol) and ,something
common to lavendar and rosemary but I still couldn't smell any 'whole' smells-just these faint
strands .However, using this limited smell vocabulary, I learned to identify more and more
things -so ,for example although i couldn't smell petrol I learned to detect the aromatic in it ,I
couldn't smell paper burning but I could detect certain kinds of wood smoke and incense. I was
so delighted to smell something nice that I sniffed everything eagerly for even a hint of a smellpencil sharpenings, leaves,tomato stalks,old books-at first the smells would fade after a few
seconds but gradually persisted for a few minutes. I also began to be aware that there were
smells around that I couldn't actually perceive but which seemed to be pressing on an olfactory
threshold- I could 'feel' they were present (just!
outside the 'smell' door) but had no idea what they were ,for example someone might walk
past me and I could tell they smelled of something but couldn't tell if it was perfume or BO, or I
might be in a particular aisle in the supermarket and be aware that it had an odour but without
looking not know if it was petfood , vegetables or toiletries.When I asked other people who
were with me about it they would confirm there was a smell but often that it was very faint- it
was as though, in my smell deprived state, I was becoming hyper-sensitive to the very existance
of odours even when they did not contain any of my recognisable palette of single elements .
In November 2008 I amazingly experienced my first proper recognisable 'whole' smell- I was
visiting an 18th century house which had been preserved completely untouched in it's original
state-no electricity,no modern materials or substances of any kind ever present in it,bare
floorboards, lit by beeswax candles and heated by wood fires- I entered the sitting room and
suddenly experienced the smell of 'an old house' - not individual smells but a rounded
,integrated,complex smell that had real meaning- I burst into tears because I had been longing
for so many years to smell something that had emotional resonance- it was a truly joyful
Proustian moment i will never forget.
Sadly I haven't experienced many other whole smells since but I have gradually found I can
detect more and more recognisable, mainly organic, odours -e.g.elements of lily of the valley,
hyacinth, (but not roses)chrysathemums,pine sap,box leaves,cigars,onions,thyme,etc) this has
made a huge difference to me - I have regained much of my appetite for food, I drink wine
again ( though my appreciation of the subtle differences has not returned) I enjoy gardening
more, I rejoice whenever I detect some new odour and ,in general, feel much more positive
about life.
Unexpectedly,and against all scientific reason, much of this recent improvement has taken
place since I started smoking again in response to a family trauma ,after several years of
abstinence - everyone warned me that this would set back my progress on the smell front but I
am still becoming more aware of new odours every day and getting closer to more recognisable
'whole' smells. The best aspect of my progress is that I am appreciating 'pleasant' smells with
increasing sensitivity and delight- though inexplicably I still can't smell any bodily odours at all my own or anyone else's- not BO ,nor bad breath ,cat's urine, dog faeces,smelly feet etc which
,in evolutionary terms ,might be expected to be the first to return.
I have written at some length here because there seems to be a total lack of interest in the very
distressing condition of anosmia - most peole dismiss it as a joke eg 'aren't you lucky you can
change babies' nappies without noticing' whereas if I had gone blind or become deaf everyone
would be sympathetic. I have learned not to mention it anymore and work my way around it
without letting anyone know- and there seems to be very little helpful research available so I
am very grateful for the opportunity to describe my personal experience to people who may be
interested.
[...]
PS I would be very willing to take part in any projects/ report more fully on any aspect of this
invisible and largely neglected condition
0026
06/24/2010 - 2:55 pm
What is your gender: F
How old are you: 52
At what age did you notice the change in your sense of smell: 49
What country do you live in: USA
What is your race/ethnicity: White
When I would smell this strange smell years ago I thought it was real. I would say don't you
smell that? My family would say no, I thought they just couldn't smell it. As this problem began
to occur more frequently, I began to wonder why only I can smell it. I investigated it on the
internet and found out my brain is making a phantom smell, it' s not in the enviroment so that
is why no one else could smell it. I haven't approached a Dr. about it, maybe fear, maybe
because I don't want a label. Now the smell comes at least monthly and it can linger for a day or
up to a week. I cannot identify the smell, I try to associate it with something but I come up
empty. So thats it, I have it and I don't know what is causing it.
0027
01/02/2010 - 8:37 pm
What is your gender: F
How old are you: 58
At what age did you notice the change in your sense of smell: 57
What country do you live in: US
What is your race/ethnicity: Caucasian
I suddenly realized that my sense of smell had changed when I could not toleratecertain smells
that are usually pleasant, i.e., coffee brewing, cut grass, celery (absolutely the worst), butter
(especially buttered popcorn), apples, peaches, cucmbers, melons, perfumes, shampoos, soap,
grilled meats and poultry, etc. I also discovered that I could no longer stomach certain related
tastes, such as V-8 juice, carbonated beverages - especially colas, orange juice, red wines,
anything melony, pretty much anything that smells bad to me I cannot stand to taste. I can
drink coffee as long as I don't have to smell it brewing. This happened to me over the past eight
months or so (today is 1/2/2010. I have had an MRI, ENT scan, and have been tested for
autoimmune. No relief and no diagnosis. Still having problems and my quality of life is suffering
badly. No one can understand how badly this this weirdness affects me and how miserable I
feel.
Questions and comments:
What cuased this?
Is there any treatment?
Is this indicative of any kind of serious illness?
0028
06/30/2010 - 7:36 am
What is your gender: F
How old are you: 63
At what age did you notice the change in your sense of smell: 58
What country do you live in: United Kingdom
What is your race/ethnicity: Caucasian
I had been walking my dog, who was unreliable with other dogs, on a long, flexilead back across
a concrete car park above a beach. The last thing I remember was hearing a dog barking in the
distance, possibly down on the beach, out of sight.
The next thing I remember was lying on the ground with a blue Ambulance light flashing above
me and a voice asking me if I could hear them. My friend, who had been walking slightly ahead
of me didn't see me fall, but heard the crack as my skull hit the ground. We suspect the dog on
the beach had come up the slipway behind us and that my dog had charged back past me
causing me to 'bascule' over backwards, landing on my head. I was unconscious for around 20
minutes.
Apart from a slight cut and lump on the back of my head, I felt ok and was released from
hospital a few hours later. About 2 weeks later, I started to notice a weird smell around my
house, like nothing I had ever smelt before; slightly aromatic and pungent. However, as I was
busy getting ready to go away for a couple of weeks, I didn't pay too much attention to it. A
couple of weeks later, I then went to stay with my brother, who apologised for the very strong
smell of currry as I walked into his house - I could smell nothing!! He was disbelieving, thinking I
was pulling his leg but then realised I was distraught as I didn't understand what was wrong.
Being, by this time, almost a month since my accident, I didn't link either the smell in my house
or this lack of curry smell to my fall.
For some weeks, all I could smell was the weird pungent smell - it drove me nuts. I would wake
up with it and go to sleep with it but, at this stage, I still didn't realise I was also losing my sense
of taste. When I returned home from my holiday I got referred to an Ear, Nose & Throat
Specialist who explained what had happened inside my skull when I hit the ground. He also told
me the strange smell usually kicks in almost straight away and forewarned me that it was
unlikely I would ever regain my senses.
In the ensuing months I came to realise how serious this condition was. I tried acupuncture and
chinese herbs to see if they would trigger some reaction (cost me over £1,000 which I could ill
afford but I was desperate). One day, when I was cooking the herbs (had to simmer for 20 mins
after coming to the boil), I forgot to turn the heat down to simmer and was working in my office
next door to my kitchen. I suddenly was aware of a film coming over my eyes and went into a
panic as I truly thought I was going blind. When I went into the kitchen I found my pan
blackened with the herbs burnt to cinders; the film was thick smoke which I could not smell.
On another occasion, I was told that there was a very strong smell of gas in the neighbourhood
which everyone was worried about; again, I could smell nothing. I immediately had smoke and
gas alarms fitted throughout my house. I am unable to tell if food is rotten (other than by
appearance) and one day ate a large bowl of prawns which my partner, as soon as he started
eating them, told me they were bad. The only enjoyment I get from food is if it is highly spiced,
i.e. with chilli, horseradish, tabasco, etc. I am unable to differentiate between types of meat so
have to rely on texture, if possible. I get some tang from strong, blue cheese.
The sad thing, I find, is not being able to appreciate the everyday smells which we take for
granted: perfume, freshly mown grass, freshly baked bread, scent of bluebells/roses/flowers in
general. Living by the sea, I used to love the smell of the seaweed around the rockpools. The list
is endless.
This is my story
0029
07/13/2010 - 2:12 pm
What is your gender: M
How old are you: 48
At what age did you notice the change in your sense of smell: 38
What country do you live in: uk
What is your race/ethnicity: white
i got a cold and it never came back in the past 10 years Ive had 2 sets of polyps removed my
sinus holes enlarged rhinoplasty all to no avail my life can be hell sometimes but no one seems
to take it seriously as its a disablement you cant see people are always saying smell that taste
this its so annoying you wouldn't tell a blind man to look at the lovely scenery would you Ive
tried everything at the moment I'm trying zinc been on it a week nothing yet
0030
01/07/2010 - 4:18 am
What is your gender: F
How old are you: 60
At what age did you notice the change in your sense of smell: 60
What country do you live in: UK
What is your race/ethnicity: White British
I developed anosmia after suffering from severe nasal congestion about six months ago. The
medical profession does not seem to think that this is a significant problem and offers no help
or suggestions as to how or indeed if it can be treated. The worse thing is that, as a keen
amateur cook, I can no longer tell how food tastes or smells and need to rely increasingly on my
partner to help me. The loss of two of the five major senses is a strange phenomena and puts
you apart from others. Taste and smell seems to be replaced by texture in finding foods that
satisfy - this may be a great thing as I no longer have sweet cravings and would now prefer food
such as celery, toast and crunchy nuts than sweeter foods. So perhaps this is a blessing in
disguise. Roll on a dropped dress size!!!
0031
01/09/2010 - 5:53 am
What is your gender: M
How old are you: 39
At what age did you notice the change in your sense of smell: 6
What country do you live in: New Zealand
What is your race/ethnicity: European
My first recollection of not being able to smell was at about the age of 6.
I would often react the same as friends and family at their reaction to bad smells e.g.flatulence,
but could never detect the smell.
Later in life I discovered that head trauma could often cause the loss of smell and was told that
before the age of 5 I was almost knocked unconscious by a blow to the head by my brother.
Throughout my teenage years the inability to smell would often cause angst with me as I was
unaware of my body odour as a result of exercise or perspiring.
Equally, I can also recall a number of occassions throughout my younger years whereby I made
myself physically ill from overexposure to chemicals, glues and cleaners.
As I've grown older the anosmia has been the subject of conversation a number of times with
friends and family and often leads to the subject of taste.
As reported in a number of related articles, loss of smell is directly connected to taste. I believe
this may be the reason for my fondness for very spicy foods. Should I have the full range of
taste, my palate may lead me to dislike a lot of the foods that I currently enjoy.
Of particular interest of late was the comment on Wikipedia re-anosmia being known to cause
depression.
I have been diagnosed in the recent past with depression and now believe my long standing
loss of smell may have been a contributing factor to my illness.
0032
07/29/2010 - 6:40 am
What is your gender: F
How old are you: 58
At what age did you notice the change in your sense of smell: 50
What country do you live in: Spain
What is your race/ethnicity: White Anglo Saxon
I had flu - undiagnosed by doctor but I was ill for over 2 weeks with typical flu symptoms. I
didn't notice that I couldn't smell anything for a while, perhaps a couple of months, just thought
I was still recovering from flu. When I did realize, I was aware that I could smell absolutely
nothing. After about four months I became aware of the smell of something which turned out
to be onions and garlic, not as I remembered them, I had liked both, but as an intense, horrible
smell that I did not want to be anywhere near.
After another 3 to 4 months I became aware of the fruity smell of a shampoo that I was using - I
named it chemical fruit, it was harsh but not unpleasant.
In the meantime things I had previously enjoyed such as wine and chocolate had become
completely unpalatable, vinegar and margarine tastes respectively. I didn't eat chocolate for
over three years and I still can't eat milk chocolate as sold in the UK i.e. very low cocoa solids.
About 18 months after the initial loss I was able to smell roses, which was wonderful, I could
smell a bar of rose scented soap as if a whole roomful of roses were present instead of a tiny
bar in the bathroom.
As each smell returns, I am overwhelmed by the intensity of the odour, when fish came back I
was unable to eat fish for a couple of years and I still find it a bit too strong.
Two and a half years ago, after a lifetime of drinking coffee, I found myself unable to even take
a sip of coffee and have been unable to drink it since, all I can smell is the burnt part.
I think of myself having a sense of smell a bit like a piano keyboard where some of the notes
don't work. If an odour is a tune then I can only hear certain notes of it, so sometimes I have no
idea what I am smelling.
I still can't smell smoke, gas, burning, manure, and probably lots of other things that I am
unaware that I am supposed to be detecting.
My husband has just walked in complaining of the smell of shit outside (we live in the country),
as usual I am blissfully unaware.
I have not consulted a doctor regarding my loss of sense of smell.
0033
07/29/2010 - 9:53 am
What is your gender: M
How old are you: 70
At what age did you notice the change in your sense of smell: 55
What country do you live in: usa
What is your race/ethnicity: white european
Periodically I would have what I refer to as a smell memory issue where I would have a
recurring odor/smell for days, and sometime weeks. Often it is the same smell but mostly not
so. I scrub daily and change clothes daily and change soap and shampoos. I have found that I
would not want to go out or socialize for fear of others smelling what I smell but have never
found friend or relative who admits to smelling the odor that I percieve. I am generally healthy
and never smoked.
0034
03/11/2010 - 6:21 pm
What is your gender: F
How old are you: 61
At what age did you notice the change in your sense of smell: 61
What country do you live in: US
What is your race/ethnicity: Caucasian
Within the last two weeks I smell a strong smell that no one else smells. The only way that I can
describe it is that it smells like a strong flowery, earthy smell , almost sickningly sweet. When I
am really busy doing something I don't notice the smell but when I am working alone or don't
have any other distraction I smell this same smell. It is now giving me a dull headache. I have
never experienced this type of thing before and am worried that there be some type of
underlying illness.
0035
10/17/2009 - 2:54 pm
What is your gender: F
How old are you: 36
At what age did you notice the change in your sense of smell: 34
What country do you live in: USA
What is your race/ethnicity: South Asian
[...] I was crossing the street using the pedestrian crosswalk and a car (also his right of way)
took a left turn and next thing I know I was on the hood of his car. Then I was in a lot of pain but
couldn't open my eyes or get up and then was in the ambulance. When we reached the ER they
sent me for CT scan and that is when I threw up but no one told me what was going on.
During my stay at the hospital my mom and friends had mentioned something smelling bad but
I didn't notice and thought it was because i was in a lot of pain (severe headaches), and when
my mom brought me food or a friend brought me something to drink it was horrible, not what
it was supposed to taste like, but again I thought it was because I was on a lot of meds and
maybe the meds were affecting my taste.
And then, when I was home a week later and my mom was cutting onions did I realize that I
couldn't smell anything, but only realized this because my eyes were burning. It all made sense
but it is sad that doctors don't think about your sense smell or see if you've lost it while in the
hospital. It was only when I was in for a follow-up exam that we confirmed I had indeed lost my
sense of smell.
A month after the accident I returned to work but then started have horrible phantom smells so
awful that I couldn't eat and was feeling horribly nauseaus most of the day; commuting by
subway was especially difficult for some reason. In a few months I had lost 30 lbs because I
wasn't eating. Since the horrible phantom smells have for the most part have passed I regained
the weight because I'm eating again but still have the phantom smells; somedays they are
pleasant and some days awful. You can't move or run away from them it's a constant and that
has been frustrating.
From my experience the medical community doesn't take the loss of one's sense of smell
seriously. I know I am lucky and am grateful that I am alive but it is distressing to not smell a
baby, my favorite perfume, the man in my life, enjoying eating out at restaurants with friends.
0036
10/17/2009 - 3:42 pm
What is your gender: F
How old are you: 61
At what age did you notice the change in your sense of smell: 60
What country do you live in: usa
What is your race/ethnicity: caucasian
I lost my smell completely during the worst virus of my life. I had nothing for about two weeks
except that many things smelled and tasted like ammonia for the first week, then nothing.
Gradually I began to get whiffs of certain things. One evening I had cooked salmon which I
could not taste and then when I went back into the kitchen later I distinctly smelled salmon.
Smell came back very gradually over several months, I think it was still coming back some a few
weeks ago and I would say it was 70 - 80% returned. I still occasionally had an ammonia-like
smell, especially when I ate certain foods like peanut butter. Also, I could tolerate rancid foods
much less. For example, previously I could eat some old potato chips without it bothering me,
but since I lost my sense of smell they taste really rotten. Interestingly, noxious smells in some
ways became worse, I can't understand that. I could taste pepsi but not coke. Eventually I could
taste most things, at least for a!
little while. I had not been sick for 1.5 years since I lost the smell. When I became sick again I
had no smell at all for two days even though my nose was no longer blocked. It came back fairly
quickly, but I don't think it is back to where it was before I became sick the second time. That
was two weeks ago.
It was extremely depressing to have no sense of smell at all. You realize that rooms have smells,
water has a taste, etc. I am grateful that it has returned as much as it has.
0037
01/13/2010 - 2:35 pm
What is your gender: F
How old are you: 41
At what age did you notice the change in your sense of smell: 41
What country do you live in: United States
What is your race/ethnicity: White
Had a persistent head cold for two weeks and was told I should try to irrigate by sinuses. Used a
product called Alkalol. On the third or fourth use, I had a severe, sharp pain in my sinuses that
radiated throughout my head. From that moment on, I have not been able to smell anything. I
cannot even smell ammonia. I used to have a very sensitive olfactory and could smell a package
of bubble gum being opened in the next room. Now I can't smell an onion under my nose...
0038
08/30/2010 - 10:43 pm
What is your gender: F
How old are you: 58
At what age did you notice the change in your sense of smell: 52
What country do you live in: Australia
What is your race/ethnicity: English/Irish extraction
I was renovating a house and at the time caught a cold which developed into a chest infection.
My wife doesn’t believe in doctors, and every time I mentioned that I needed to go she
discouraged me. My cough and nasal discharge never really cleared up over six months or so,
but keep in mind I was in a dusty environment at the time. I was constantly coughing, sneezing
and had a runny nose.
Even after the house was finished and sold, this never really cleared up. Over this time I had lost
my sense of smell (and taste). My wife sent me to a naturopath, but it was fairly obvious he had
no idea how to treat me, as he kept changing the treatment. I persisted with a couple of visits a
week for a few weeks (at great cost). It was a couple of years after the onset of the problem
before I eventually went to a doctor. I was diagnosed with a chest infection, asthma and a nasal
infection and given antibiotics for the infection, a ventolin inhaler and Prednisone tablets for
the asthma. The prednisone to be taken after the antibiotics did their work. The antibiotics
cleared up the cough in a few days.
The cough had cleared up, but the blocked nose and sneezing continued, so I was given a
topical steroid nasal spray to ease the sneezing. I noticed that when the asthma was really bad
and I had to take the prednisone my sense of smell returned (as long as my nose wasn’t too bad
at the time). After a few days from stopping the tablets my sense of smell would gradually fade.
It was only a couple of years ago that one of my doctors actually had a look up my nose! He saw
that I had nasal polyps and referred me to a specialist who operated to remove them. My nose
has been clear since then – apart from a couple of colds. But my sense of smell only returns
after taking the tablets. Because of the side effects I am reluctant to take them for more than
the recommended three days. In fact, during a trip to the US, I went to a doctor to get a refill on
my prescription and he was horrified at the dosage I was taking (25mg over three days). The
nasal spray doesn’t seem to make any difference and I no longer use it as I don’t have the
sneezing.
I am contemplating going back to the specialist I saw for the polyps, but the info available
seems to indicate that there is not much in the way of treatment apart from what I am doing.
One thing I may try is acupuncture. It may be that a stimulus could kick start the sense?
In the meantime, because of the loss of smell and consequent loss of taste, my diet consists
mainly of highly spiced foods – Indian, North African and Thai. Not that that is a problem, I have
always liked those cuisines.
[...]
0039
09/03/2010 - 8:29 am
What is your gender: F
How old are you: 82
At what age did you notice the change in your sense of smell: 20
What country do you live in: us
What is your race/ethnicity: caucasian
i was exposed to laquer and acetone at age 17 since then everyting bothers detergents
perfumes any chemicals curently I moved into an older home and have a terrible smell that I
cnnot seem to figure out where it originates I am wondering if it might be from lead in the
drinking water I have over cleaned everything in the house sent rug to cleaners vacuum the
couch and chairs several times but not relief however there is mold in the cellar the odor gives
me a headache and I feel dizziness I went to the
ER and all they said was to use Benadryl I have windows open in the cellar and run a fan I am
buying a dehumidifier this smelll is acrid and really gets to me so much so I have Pity parties by
myself and cry fat lot that does but what else is there can you help me?
0040
10/17/2009 - 4:25 pm
What is your gender: F
How old are you: 57
At what age did you notice the change in your sense of smell: 55
What country do you live in: USA
What is your race/ethnicity: Caucasian
I have parosmia. It began about a year and a half ago. The first thing I noticed that didn't smell
right was my body. Several days later I noticed that the strawberries we had didn't taste right
and I thought there was something wrong with them, but my husband said they tasted normal
to him. Within a few days, nearly all cosmetics, bath products, and household cleaners took on
the same unpleasant odor - the smell was sort of a mixture of rotten oranges and Lysol. Each
day there seemed to be another group of things that didn't smell the way they should. At the
end of three months, there were four distinct distortions that emcompassed nearly every odor
and every flavor. Life became very unpleasant. I couldn't distinguish newly mown grass from
gasoline or dish detergent.
Because the perception of flavor is so heavily dependant on our sense of smell, parosmia has
raised havoc with my diet. Nearly all food smells and tastes unpleasant. I eat no meat, no
seafood, no poultry, no fruits (except lemons and some red grapes) and no vegetables except
lettuce and mushrooms. I drink no soda, alcoholic beverages, or fruit juices. Not being able to
enjoy foods is the most difficult aspect of this disorder for me because eating is one of the
greatest pleasures we have in life.
I've been to the [...] and have been thoroughly tested, but there really hasn't been anything
anyone can do for me. I have been lucky enough to find the Yahoo parosmia group, where I've
found tremendous support.
Parosmia has changed who I am. There is a level of dispair that never leaves me. In the last few
weeks, however, I've begun to see some glimmers of improvement, so I'm hopeful that I may
not be like this forever.
0041
10/17/2009 - 10:16 pm
What is your gender: F
How old are you: 57
At what age did you notice the change in your sense of smell: 52
What country do you live in: United States
What is your race/ethnicity: Caucasion
After using a popular over the counter nasal sparay I experienced intense burning in my nostrils
and sinuses. It felt as if I had sprayed acid up my nose. I frantically tried to blow it out and even
tried rinsing with water. The burning lasted for approximately 2 days with continued sensitivity
for several works. After some time I realized I could no longer smell. Anything. I tried vineagar,
ammonia, garlic, even dog feces. Nothing. Over the next few months I would once in a while
"smell" a very unpleasant chemical smell much like insecticide, and several times something
similar to hair burning. After visiting a ENT who put me on steroids and a cortisone nasal spray
with no results I had to accept the fact that my condition was probably permenant. I am a
professsional cook and this was devastating. I went into a profound depression and even
attempted suicide.
That was 6 years ago. I have learned to live with my condition and made allowances. There are
smoke detectors in nearly every room in my house. My personal hygiene tends to border on the
obsessive, and my poor dog runs at the sound of water.
I think the most difficult part about my condition (apart from no longer being able to enjoy the
foods I love) is that very few people understand the depth of my loss. They make jokes about
how lucky I am that I can't smell some things. It doesn't occur to them that the loss of one
sense is bad enough, but I have actually lost 2 senses as I can only taste a few flavors such as
salt, sugar and vineagar. Anything else is blah to me. As a chef, to not be able to taste garlic or
herbs breaks my heart. People think, wow big deal, you can still see, communicate. They don't
understand that cooking was one of my ways of communicating. It was everything to me.
I eventually ended up divorced because my husband had so little sympathy for what I had lost I
realized how little he actually cared about my feelings.
The odd part is I still can smell in my dreams, and when I wake up and realize it was just a
dream I grieve all over again.
Friends were always amazed at the fact that I could cook ANYTHING. All I had to do was taste it
once, smell it and I could duplicate it. We entertained often and I loved cooking gourmet meals
for my friends and family. That is lost to me.
I am in a new relationship now and I have no idea what my lover smells like (although he looks
respectable LOL). I had not realized it but even lovemaking is affected by my lack of smell and
taste.
My grandchildren are a joy to me, but I cannot hold them and smell their sweet smell the way I
once could.
I had quit smoking for 5 years but began again under the stress, I figured what the hell can't
taste or smell anyway.
Losing you sense of smell is no less devastating then losing any other of your senses. You go
through all the same emotions. Anger, denial, resentment, depression and eventually
acceptance.
I wish people could understand that and be more sympathetic. I hope your study will make
people more aware. Especially doctors, who I have found are the worst ones to say "It could be
a lot worse". Thanks that makes me feel Sooooo much better.
0042
09/22/2010 - 8:22 pm
What is your gender: M
How old are you: 70
At what age did you notice the change in your sense of smell: 65
What country do you live in: usa
What is your race/ethnicity: black
where ever i go or live, i am overwhelmed fron very strong oders.
it comes from my clothes, furniture, my new apartment. i have given
most of my clothes away and have given my furniture away. the disorder seemed to lesson but
now has come back. i can not sleep most of timesand where ever i go, the strong odors from
homes, furnitur and even my friends home or childrens home. What kind of specialist do i see ?
0043
09/24/2010 - 11:45 am
What is your gender: F
How old are you: 38
At what age did you notice the change in your sense of smell: 38
What country do you live in: india
What is your race/ethnicity: india
I was suffering from fever for 10 days and i am getting a rotten smell when i breath. In curries,
in perfumes, in malls, etc... wherever i go i get rotten smell. By this im not able to eat any kind
of food. When i consulted a doctor , he told that it is just a psychological feeling. But, why will it
be psychological feeling. coz i dint ate food properly for more than 10 days, atleast after that i
should feel hungry n eat, but im not at all able to eat with that rotten smell. What is the
solution for my problem....
0044
10/01/2010 - 11:56 pm
What is your gender: F
How old are you: 40
At what age did you notice the change in your sense of smell: 37
What country do you live in: usa
What is your race/ethnicity: white
I started losing my sense of smell in Oct of 2007. I noticed I was not smelling things others were.
I would have to really breathe in deeply through my nose and maybe catch a hint of what they
were smelling. I went to an ENT( Jan 2008) that said nothing was structurally wrong with my
nose and prescribed steroid nasal spray with no results. went to another ENT april 2008 who
said I must have had a virus that killed my olfactory nerve and there was nothing he could do
try taking oral zinc as some people had results with it> tried it with no results. Went to
neurologist Fall 2008 after discussing it with my family doc. Had full history taken, MRI, all tests
were OK. Decided to live with it. Was very sad and felt like I was "missing out" on so much.
Tasting food, smelling good smells as well as dangerous ones ie. spoiled food, gas leaks,
burning. Decided to give it one last try as I did not know where to turn. Went to the head of
ENT at Clevelnd Clinic in July 2009. I was put on!
Prednisone 60 mg a day for 6 days. Had ct scan. Nothing was found. Decided to live with it> I
have no choice. Went to allergist June 2010 with script for allergy meds and more steroid nasal
spray with no results. Would give anything to smell again. I have lost one of my five senses! I
get from others at least you are not blind or deaf. Well yeah I guess so but would still like to
have my smell back!
0045
10/05/2010 - 4:00 pm
What is your gender: M
How old are you: 42
At what age did you notice the change in your sense of smell: 41
What country do you live in: UK
What is your race/ethnicity: White British
I had a head injury, which caused a linear skull fracture, bilateral frontal contusion and a
subdural haemotoma. Several weeks afterwards, I noticed that I had lost my sense of smell and
taste. However, I can now tell whether something is sweet or sour, and feel the heat from chilli.
Several months after the accident I developed an aversion to certain foods, as they smelt and
tasted of something I had never smelt/tasted before. It was the same smell and taste for all the
foods and it is not something that I can identify. This has now lasted for 10 months.
0046
10/10/2010 - 9:24 pm
What is your gender: M
How old are you: 59
At what age did you notice the change in your sense of smell: 59
What country do you live in: USA
What is your race/ethnicity: European
I had bone surgery on my left femur 3 weeks ago. Soon afterwards while still in rehab I noticed
a loss of apetite, mild nausea, and loss of enjoyment eating foods I used to like. I soon realized I
had a diminished sense of smell and taste. What happened during surgery or recuperation that
could have caused this? Was it the anesthesia? Was it the pain medicine (percoset)? I used to
have an excellent apetite and would usually clean my plate at meals. Now I frequently
experience revulsion after only a few bites of what I used to consider a tastey meal. This has
had a profound affect on my life causing depression and general disinterest in many things that
used to be rewarding. I never realized how much the enjoyment of food was to my pychological
wellbeing. I have lost about 10 pounds since surgery and I expect to continue losing weight
since I do not eat much. Fortunately I am still about 15 pounds above the ideal weight for my
height. I continue to try to find nutritious food!
s that I can tolerate. I am surprised that my loss of smell and taste could cause me to feel
nauseous at the thought of eating something I would otherwise be hungry for if I could smell it.
One more thing. During the last 4 or 5 days of my 13 days in the hospital, I experenced extreme
revulsion at the smell of a cleaning agent, "Wex-cide", used heavily throughout the hospital.
The continual smell of it night and day began to make me feel so nauseous, I did not want to
eat any more meals.
I can only hope that my olfactory function will gradually return but from other accounts I have
been reading about post-surgical loss of smell/taste/appetite, I am worried it will never return.
If that happens, I hope I can overcome this depression and live a normal life again.
0047
11/12/2010 - 6:34 am
What is your gender: M
How old are you: 54
At what age did you notice the change in your sense of smell:
What country do you live in: Australia
What is your race/ethnicity: Aussie
About three months I started smelling exhaust fumes and i thought the window in my bedroom
wasn,t sealed so i had it changed. The smell didn,t subside so i went to the doctor who referred
me to an ENT Specialist. I have a perforated septum about the size of a wedding ring and have
had two operations, one being a silicone button the other a skin graph with skin being taken
from my buttocks. The skin graph lasted a month and the hole was back. The ENT doctor
treated me with antibiotic cream and took a swab together with a biopsy that came back as
golden staph. Three weeks later the staph has gone but the smell remains and i have resorted
to eliminating smells one by one. My two office girls dont wear perfume and that hasnt helped.
I thrown out the toilet smelly thing and that hasnt helped. It seems worse when i lay down at
night and my eyes sting, my throat stings and all i can smell is exhaust fumes.
This has to be the most frustrating illness i have ever had and the doctor has told me there is
nothing more he can do.
I am open to any suggestions, i even asked the doctor to cut the nose off, no sense of humour
my doctor as he went into the reasons why i shouldnt have a noseadectomy. For that split
second when i was taking the piss the smell disappeared but it returned the second doc realised
i was serious about the noseadectomy.
Please help as this is killing my sex life because i ask "can you smell that" my wife thinks i am
referring to her.Please help
0048
11/14/2010 - 3:28 am
What is your gender: F
How old are you: 37
At what age did you notice the change in your sense of smell: 17
What country do you live in: USA
What is your race/ethnicity: Caucasian
I didn't notice any particular dulling of my sense of smell until my later teen years, I remember
when my grandmother was making pizza and complaining about the intense stench of
parmesian cheese, which I couldn't detect at all (I did open a window for her). Shortly after
starting university, I found that my sense of smell was actually fading very quickly. It caused me
to lose weight my first year, because I lost so much interest in eating food--I tended to fixate on
textures a lot as the flavors seemed to disappear, and ate very few things as a result, sticking
mostly to foods I could 'remember' the proper taste of. I was living in a dorm, and none of the
girls thought this was normal, so I didn't seek out medical consultation.
I also wasn't completely surprised, as I have a great-uncle who lost his sense of smell before he
reached adulthood, and a cousin on that side of the family who was much the same, so no one
in my family really remarked on it being too odd, but I look back now and realize I should've
done more about this condition at the time, but I lacked the self-confidence and self-possession
to take charge of that part of myself. A few years earlier and my grandmother would've taken
me to the doctor, and a few years later and I would've known better.
The last thing I remember smelling was when I was 19 years of age. I was driving with a friend
past an open sewer. While she fought not to vomit, I was sure I could smell pea soup. I
remember that moment clearly, though I didn't know at that time it would be the last thing I
ever smelled.
A lot of people think that this is a blessing, I can't smell fouled cat litter or baby diapers or
skunks, I'm obivious to people with bad breath or BO. But I also miss out on the smells of food
and cooking, I miss out on the smells of nature, and of course there's the fear factor. I spent
years being quite paranoid about fires and smoke dangers. I also almost made myself very ill at
work once when a sewage leak happened in our office building. I stayed at work on the phone
while other people were fleeing with extreme nausea, but it's not just the smell that's bad, it's
the actual fumes that can do you harm. I ended up being much more sick than if I'd just left
with my colleagues at the start.
Plus, there's the ostrasizing that can happen. No one really knows about anosmia, I've had
people react oddly to it (though most adults take it in stride). It's not an obvious disability like
being blind or deaf, there are days when I feel like I'm normal, and days when I wish people
could be understanding. It's a regular occurrence for even long-term friends and family to ask
about how something smells, or to check on something by smell. Oftentimes I just go 'oh, that's
great' rather than make waves, or have to launch into an explanation, or remind someone. It
doesn't make for great dinner conversation to explain that I don't get the same flavor
sensations from food that they do, or that textures still give me some hangups to this day.
I've often wondered if this is genetic, which is sort of what my family had assumed all those
years ago, or if it was somehow due to my grandfather's heavy smoking (though I'd suspect
anosmia would be far more widespread if second-hand smoke caused it!) or stress from losing a
family member at the end of the first semester of university (the smoking grandfather). I also
wondered if it was some sort of brain trauma, I'd been smacked in the back of the head with a
brick when I'd been about 8 years old, hard enough to black out, and had never been examined.
But at this point I don't even know what I would do if my sense of smell came back. Would
everything overwhelm me or disgust me? It's probably a moot point, but I guess I'll think about
it for the rest of my life.
0049
10/18/2009 - 6:34 am
What is your gender: F
How old are you: 64
At what age did you notice the change in your sense of smell: 60
What country do you live in: USA
What is your race/ethnicity: Caucasian
Even though I'm a senior citizen, my senses of smell and taste were just fine until the accident. I
received a concussion (blow to my forehead and back of head) in an auto accident almost four
years ago. Since then, I cannot smell or taste anything. I was well-known for my cooking and the
recipes I created.One of my greatest pleasures was cooking for friends--having them over for
dinner. Now I can't do that because I can't season the food.
When I eat, I try to remember what each food tastes like as I take each bite or sip. But I can't
taste anything. The only reason I eat now is to relieve hunger pains. I get NO enjoyment from
eating.
I can't smell rain or snow, or my flowers, or my dog. I can't smell clean laundry or fabric
softener. I can't smell hairspray or permanent solution. I don't know whether my house stinks,
or whether I stink. I can't smell chemicals, except once in a great while, I get a whiff of chlorine
when I turn on the tap. (It must be the day or day after the village officials add chlorine to the
water.) One good thing about losing my sense of smell: I don't smell dog doo when I pick it up!
The three worst things that have happened were potentially very dangerous. First, I had a
strange visitor one Sunday. She kept telling me she smelled gas, even on her way out the door.
Because she was such an odd person, I thought she was nuts. But the next day, I decided to
have it checked. I had a HUGE gas leak. The leak was just outside my door, but it was so bad the
fumes were coming inside (it was summer and the door and windows were open).
Another time, I put a large pot of water on my gas stove and turned the burner on. I thought I
heard it light. But it didn't. I never smelled the gas. I only discovered it when I checked the pot
10 minutes later to see if the water was boiling. When it wasn't, I tested it for heat and it was
cold. THEN, I looked at the burner and didn't see a flame.
My right hand was injured in the same accident. I had surgery, which left my thumb partially
numb from nerve damage. While trying to rotate a casserole in the oven, my right thumb was
touching the element at the top of the oven. I couldn't feel it because of the nerve damage, and
I couldn't smell my flesh burning. It was only when I pulled my hand out that I could see my
flesh smoking and see the burn.
So much pleasure is lost when one loses his/her sense of smell. I used to love to smell the
coffee brewing in the morning, or apple pie baking. I love the fragrance of the flowers in my
garden, or the "smell"of autumn in the air. I can't smell freshly cut grass or hay. I used to be
able to smell an approaching snow storm. There's a difference in the fragrance of impending
rain and snow, and I could smell that.
Questions and comments:
WHAT is being done to restore the sense of smell? Is there any hope?
0050
11/28/2010 - 7:36 pm
What is your gender: F
How old are you: 58
At what age did you notice the change in your sense of smell: 56
What country do you live in: US
What is your race/ethnicity: Caucasian
This typically happens when I am NOT active - watching TV or sitting at the computer. I smell
cigarette smoke and it makes my throat tighten up just as it does when exposed to the real
thing. I was even thinking there must be a homeless person hiding in my basement (not really)
but it was the only explanation I could come up with. I do not smoke - nobody I live with
smokes - I do not have friends who smoke - it's a mystery for sure. I have not seen a doctor for
this yet - but plan to soon. Sometimes, this goes away for weeks at a time....and then it returns
and I don't think there's a "trigger" that makes it happen.
[...]
0051
11/30/2010 - 4:17 pm
What is your gender: M
How old are you: 38
At what age did you notice the change in your sense of smell: 30
What country do you live in: Chile
What is your race/ethnicity: Latinoamerican
Well i used to work on guitar repair shop in , spray painting guitar bodies , finishing wood
sanding, and using lots of methacrylate to glue different broken parts from instruments, added ,
have to say i was consuming a lot of alcohol, tobacco and cocaine at work and while playing
with several bands. Musician and repairman but addict. I'm no proud of that but i can walk very
prod today because since 2004 i have no drugs, no tobacco, no alcohol in my life, i'm proudly
straight an healty.
I loss olfactory functions due to my drug addiction, in a show in great venue in santiago, the
dealer was not available and everybody was nervous an anxious about that,there was a security
guy with a little cocaine bag and he said im not a drug dealer but if you want to get high i can
geve you a couple of lines ...and he said "ok dude ...quick quick ..sniff " and he used another
bag...not the normal bag he has in hand ...but other from other pocket.
the guy was finishing his work day and say bye and walked way home,I remember felt nothing
but itch in my nose...after that mucus start to flow out of my nose and 15 minutes after that ,
an incredible pain in my upper nose...was extremely painful..same sensation as alcohol in a
open wound.
3 days of that ... pain and mucus..all my nose was red and i couldn't breathe normally.
at 5th day i was better and felling betrayed and very angry for my naive behaviour 4 night ago.
a couple of months later,\my fioncee now my wife noted i couldn't perceive any odors..many
flowers are odorless for me...meat cooking in oven i can't enjoy that, many things changed in
my life.
Now i don't play music,don't drink alcohol, and don't use drugs.
I learn the lesson hard way, but here i am ...after the battle i lost 60% smell capabilities ..a
cheap price compared to lost a life in drugs. Fortunately i have a family... 2 beautiful girls........
11 and 2 years old and a very supportive wife.
thanks for your time and please forgive my grammar ....im not good in english.
[...]
0052
12/01/2010 - 2:25 am
What is your gender: F
How old are you:
At what age did you notice the change in your sense of smell: 59
What country do you live in: USA
What is your race/ethnicity: caucasian
My sense of smell within a few months time period turned to always smelling a bad distasteful
smell. I first noticed it in my bedroom and then began to associate the smell with my husband
first and then myself I have washed everything and cleaned, changed soaps done everthing I
can think of but the smell seems to now follow me around and I hate it! Even when I use
perfume I can still smell it. I am not on any medications and my husband and I have a good
relationship. I have this nagging feeling that I am sick and that is the reason I have this bad
smell around me, but I have no basis for it. I have heard stories that dogs can tell when their
masters are sick by their smell. I think that is why I think this.This has been going on for over a
year. I have not told my husband because I did not want him to think he smells bad to me and
he has never mentioned that I have a different smell either. I am hoping no one else can smell it
but I am not sure. It is starting to drive me!
a little crazy. When I try to look things up about it I can only find things on losing your sense of
smell or being overly sensative to every smell, which is not my case.
0053
12/04/2010 - 3:26 pm
What is your gender: M
How old are you: 60
At what age did you notice the change in your sense of smell: 45
What country do you live in: USA
What is your race/ethnicity: White
I have been a welder with the rail road for 37 years and I have noticed several other coworkers
that have lost there since of smell. I am thinking it was from my work environment diesel,
welding fumes and grinding partials in the air. I start loosing my sense of smell about 45 and
now I can hardly smell at all with very little taste
0054
12/05/2010 - 10:27 pm
What is your gender: F
How old are you: 45
At what age did you notice the change in your sense of smell: 44
What country do you live in: US
What is your race/ethnicity: Caucasian
On October 3, 2009 i was hit by a truck. Police report indicates driver was doing 5 miles an
hour. i don't believe that because i landed up in NICU for a few days and don't remember much
about the following 3 weeks.
According to the medical documentation: Clinical Indication: Trauma. No evidence of acute
injury to the chest or left hip or knee. Scalp hematoma and emphysema. Nondisplaced
nondepressed fracture. Cortical contusions. Subarachnoid hemorrhage.
It was only later that i was diagnosed with anosmia. No one has attempted treatment. i had an
MRI of my face, though. i was told that unless the nerves regen on their own...there's nothing
that can be done.
i would love to know if there's something that can be done. My faith in the medical profession
has been damaged. Not one doc seems to take my loss seriously. Even the Neuropsychologist.
So far all i've heard is 'if you have to lose one sense, smell is the easiest.' But i feel like someone
who is dealing with an invisible disability. i even saw a psychologist and he told me that i should
join a support group. No, he didn't know of one. No, he really couldn't help me.
And, having been an herbalist, you can imagine how devastating this is for me.
0055
12/06/2010 - 1:05 am
What is your gender: F
How old are you: 49
At what age did you notice the change in your sense of smell: 48
What country do you live in: US
What is your race/ethnicity: Causcasian
The first issue I noticed came up a little more than a year ago when I used Flonase nasal spray.
The strong odor was very irritating to me so I stopped using it after a couple of doses. I
continued to smell the medication for several weeks on a regular basis, then went on to smell it
occasionally for many more months. It smelled like a pungent burst broke loose in my sinuses.
A while later I began smelling a sickly sweet chemical smell on and off. At first I attributed it to
the HVAC at my work place, but I smelled it many different settings. I thought I was somehow
carrying it around on my clothes or body. Later when I no longer worked there it finally dawned
on me that it couldn't be my office.
Next I thought it was my refrigerator motor, again with my clothes picking up the stench. At this
point the odor took on a smokey quality. When I asked my family if they smelled it they would
say they could smell something slight coming directly from the motor component, then they
would say I was REALLY sensitive to smells.
I was concerned for the refrigerator, so I called a repair man. I don't think the refrigerator repair
person appreciated my request to figure out what the cause was. He couldn't smell anything
out of the ordinary.
About a week later I went to a perfume store and found that all the scents smelled exactly the
same, and very toxic, a cross between ammonia and alcohol. I also noticed that I seemed to
have a very reduced sense of smell in general. For example I tested eating a bite of raw onion,
something that I normally would never eat alone. It tasted watery and only slightly like onion
and had no strong odor.
With this new stuff I finally figured out that the fake smells must be me, not something in my
environment, and that something is up. An email to my PCP wound me up in the office of an
ENT doctor. He suggested it could be fungus in my sinuses, brain tumor (not likely since I have
no headaches), reflux, or a host of other conditions. We are trying saline rinse, reflux
medication and modification of my diet to remove foods that might cause reflux. (I don't think I
have this problem, but perhaps I just don't know I do???)
My sinuses seem dryer than before. Its only been a few days, but I still have the same situation.
0056
09/02/2011 - 4:45 pm
What is your gender: M
How old are you: 42
At what age did you notice the change in your sense of smell: 41
What country do you live in: India
What is your race/ethnicity: Asian/Indian
Being a smoker for more than 20 years, when I gave up smoking - within a month I had seen
remarkable difference in my sense of smell. In fact sense of taste and smell were fantastic.
0057
01/25/2010 - 4:22 am
What is your gender: M
How old are you: 52
At what age did you notice the change in your sense of smell: 52
What country do you live in: United States
What is your race/ethnicity: Caucasion
Within the last 6-8 months I have noticed that the air smells like ash... somewhat like a
cigarette ashtray. I quit smoking 2 years ago. Iat first I thought it was the fireplace that needed
cleening but after it was cleened the whole house smelled "ashy" . Next I noticed the outside
air smells "ashy" as well. I have since been diagnosed with Prostae Cancer and Parkinsons
disease. I cannot explain this( the sense of smell changing). I have not told my doctor because
frankly I have a lot on my plate.
0058
12/26/2010 - 1:49 am
What is your gender: F
How old are you: 52
At what age did you notice the change in your sense of smell: 49
What country do you live in: usa
What is your race/ethnicity: caucasian
Lost sense of smell and taste gradually throughout the year (2007).
I was using Wal-four (Walgreen's brand) nasal spray for congested sinus at the time. I do smoke
cigarettes (doctors have said this is the reason for anosmia in my case, but I've been smoking
since I was a teenager and was always able to taste and smell.) I've been to clinic doctor, family
practice doctor, ENT doctor, even a dermatologist and oral surgeon (I've also bumps on my
tongue): I get different answers and treatments, if any doctor decides there's a problem in
his/her opinion; needless to say, it's 2010 and I remain with this condition that really has
messed up the quality of my life: Imagine not being able to smell a delicious meal, or the lovely
scent of morning/the ocean breeze/mowed grass. Maintaining regular meals is the most
difficult, as is the depression that accompanies a poor diet. I never considered losing the senses
of smell and taste would have such a debilitating effect, but it certainly does. Thank you for
your work and this opportunity to tell my story. [...]
0059
01/03/2011 - 12:30 am
What is your gender: F
How old are you: 45
At what age did you notice the change in your sense of smell: 44
What country do you live in: United States
What is your race/ethnicity: Caucasian
I was involved in a auto accident in August of 2009. I suffered a traumatic brain injury and have
since lost my sense of taste and smell. This has affected my life dramatically. I no longer enjoy
cooking, eating out with friends and numerous other things. I've become extremely depressed
and I would do anything to get it back. If you are aware of any new treatment or cures please
let me know, as I'm desperate and my quality of life has been greatly affected.
0060
01/07/2011 - 2:03 pm
What is your gender: F
How old are you: 58
At what age did you notice the change in your sense of smell: 58
What country do you live in: US
What is your race/ethnicity: Caucasion
2 months ago I was involved in a car accident. Broken sternum, ribs, and fractured ankle. About
5 weeks ago I starting experiencing a weird smell.... out of the blue. I'm not sure that I've
correctly identified it, but I think it's the odor of the gray smokey powder that filled the car
when the airbags deployed. Several times each day the smell fills my nose, without any
particular thought or activity. I might be reading, watching TV, doing things around the house. I
am curious to see if this continues when I return to work next week after my medical leave. I
did not have a head injury, although my neck was achey for some time after the accident. It is a
disconcerting thing!
0061
01/27/2010 - 8:10 pm
What is your gender: F
How old are you: 60
At what age did you notice the change in your sense of smell: 59
What country do you live in: United States
What is your race/ethnicity: Caucasian
On July 14, 2009, after enjoying a barbecue with friends during which everything smelled and
tasted just as it always had, I was watching a movie when I thought I smelled smoke - to the
point where I went outside to see if the grill had been properly distinguished. The smokey smell
came and went over the next 24 hours, and when it was finally gone, so was virtually all of my
sense of smell.
When, after a month, it hadn't returned, I saw my doctor. She diagnosed a lingering low-grade
sinus infection (I'd had a terrible, unusually long head cold that spanned the late spring and
early summer) and prescribed antibiotics, which did clear my nose but did nothing for my sense
of smell. She referred me to an ENT for further examination and a head scan, which ruled out
tumors or other obvious organic problems. He pointed to two factors: A lifetime of smoking,
and the fact that during the cold, I'd used a *lot* of Afrin nasal spray, which is known to cause
anosmia. I was advised to wait and see if my sense of smell returned - and warned that the
odds of that happening weren't all that great.
I'm not entirely without a sense of smell; I get occasional whiffs of actual things in my
environment - my shampoo, food, that cat's litter box - but they come and go, and even when I
can smell things, they don't smell right. Citrus, for instance, all smells vaguely chemical;
anything cooking smells like toast. I can tell when I'm smelling perfume, but not what scent it is.
Other smells, even strong ones - garlic, for instance, or bleach - are completely absent.
As someone with a lifelong love of cooking and eating, I've experienced this as a serious loss.
My appetite has dwindled, and I've lost about 20 pounds since last summer; I've had to refocus
my cooking on the tastebud flavors (sweet, sour, salt, bitter, umame) and the painful ones
(cayenne, horseradish, etc.) to find anything appetizing at all. I wind up throwing a lot of food
away because I can't detect if it's spoiled. My previously healthy libido is also affected, and I've
found myself experiencing periods of situational depression (I have never been chronically
depressed.) All in all, it's not much fun, though I hate to complain when I'm otherwise healthy
as a horse.
I'm currently in treatment by a licensed acupuncturist who shares a practice with my MD; it
seems to be helping, slowly - although that could also just be the passage of time. They have
me on a high-dosage B vitamin combination to support nerve regeneration. I'm also signed up
for a smoking cessation class on the understanding that could help.
0062
03/08/2012 - 9:38am
What is your gender: F
How old are you: 62
At what age did you notice the change in your sense of smell: 61
What country do you live in: gt britain
What is your race/ethnicity: white
Last year i got the flu, since then i have had no taste or smell exept the taste and smell of metal,
i have had a ct scan and it was normal, the hospital say there is nothing they can do. I am
devastated and dont no whitch way to turn, everything i eat and drink tastes of metal
sometimes stronger than other times which makes me feel sick. I have never had an
antidepressant in my life but im thinking of seeing my doctor for some, i feel so depressed and
miserable.
0063
01/28/2010 - 1:59 pm
What is your gender: F
How old are you: 29
At what age did you notice the change in your sense of smell: 10
What country do you live in: United States of America
What is your race/ethnicity: White
I don't really ever remember having a sense of smell, but sometimes, I look at something and a
memory comes to me. I assume it is because I could at some point, smell. I can detect, by
memory; bananas, gasoline, and peanut butter, but not all the time, randomly and never by
force of will.
I can detect strong odors, however, they coat my mouth and I taste them. I could walk into a
perfume store and be hit with a nasty taste in my mouth, but never be able to say, "oh, that's a
vanilla perfume." And the odors must be very strong.
I suffer from allergies of all things, except for foods and mold. Upon a trip to the allergist, 20
years ago, I was told that nothing could be done to help, and have not sought out advice since
then.
Contemplating seeing if there is any change or possibly updated procedures that could help.
It is depressing, never smelling a flower, or my babies. It is scary, knowing there could be a fire
right under me and I wouldnt know until it was too late. It makes me angry to know that people
don't consider anosmia a real disability, people forget and shove things under my nose "Here,
smell this... oh.... yeah, oops". But alas, I have lived with this longer then I can remember not,
so I have come to accept it by now. Besides, what if I got my sense of smell back, and couldnt
stand the scent of my husband!!
0064
02/24/2011 - 12:11 pm
What is your gender: M
How old are you: 16
At what age did you notice the change in your sense of smell: 12
What country do you live in: Israel
What is your race/ethnicity: East European
Ever since I was born I noticed something is weird, I remember me as a four-five years old kid
going to say I cannot smell after an incident which proved it to me and not doing it eventually
for some unknown reason.
Many years have passed since I started to think about it again, I was always normal so I did not
believe I do not have this sense indeed, infact I even remember me pretending having it, again,
for an unknown reason.
Only when I grew up It started bothering me again, I remember perfectly that the first time I
heard about the word 'anosmia' (tatran in my language) was in a TV show. Since then all
became alot more clear, a few days after the TV incident I looked it in the internet, I even
remember me find this site but being too lazy to fill it up.
What finaly proved me for the first time I cannot smell was after talking with my brother, asking
him what has a very strong smell and trying it.
For now, as weird as it sounds, only my family knows about that, not even my closest friends or
extended family.
[...]
0065
02/25/2011 - 10:35 pm
What is your gender: M
How old are you: 56
At what age did you notice the change in your sense of smell: 56
What country do you live in: usa.
What is your race/ethnicity: white
I smell carmelized sugar. 3 months ago I was at a friends house while they were making fudge.
The smell of burnt sugar permeated the house. When I came home I continued to smell sugar. I
still have that sense of smell. It's not constant but at times its strong smell. I did have a cold
with weak flu like symptoms prior to that visit but was feeling good. The smell disorder does
mask some odors but I can smell coffee, soap, but most odors are barely recognized. It's
starting to get me concerned, what could it be? [...]
0066
10/18/2009 - 6:54 am
What is your gender: F
How old are you: 29
At what age did you notice the change in your sense of smell: 24
What country do you live in: englnd
What is your race/ethnicity: british
I totally lost my sense of smell 5 years ago and have not smelt anything since! I first went to the
Dr with a strong smell like Christmas! the Oranges and cloves thing mixed with mulled wine,
this was the middle of July 2004 so there was obviously something wrong, my Dr said it was an
infection and prescribed the usual basic antibiotics amoxicillin 3x a day for a week, this did get
rid of the smell but it was then i noticed i could not smell anything, i do not believe my loss of
sell was due to the antibiotics or the infection as later tests proved this not to be the problem.
it took me awhile as i guess you only really notice a smell if its something different from what
you expect? I used to work in a pub and was told it may be to do with the line cleaner or gases
used but tests at the hospital throughout 2004-2006 proved nothing was wrong with my nasal
passages or brain, MRI scan, cameras up nose, nothing wrong, no polyps, scarring etc just a
perfectly healthy nose with nothing wrong except it was not smelling!!! The Dr gave up on me
in Dec 2006, they have no answer for why i cant smell, with is pretty annoying as if there was a
valid reason they could at least try 2 fix it! I have since had 2 give up my job in The pub business
as i cant smell gas leaks, cigarettes still lit, food burning etc, i now work for Tesco supermarkets
and have changed job 2x as my lack of a sense of smell hinders me, i was a stock controller but
would miss the things gone out of date most people would smell as being bad or "off". I now
work on Fresh foods as i shelf filler as i have become paranoid about use by dates! many times i
have been ill with food that looks ok but is actually out of date or gone off, milk especially! I
have realized how much smell affects your daily life and cannot believe the lack of research into
it, considering it is one of the 5 senses it is defiantly the least understood, but probably one of
the most important, nowadays if you cannot see there are many aids out there to help you,
seeing eye dogs,braille, if you cannot hear there is sign language, hearing aids etc but for a loss
of smell there is nothing and despite the complications it has on every day life no help available,
i cannot get a job in so many fields because i cant smell, they do not specifically ask if you can
smell most of the time as it seems to be a given that "everyone" can smell and you show no
outward signs of the anosmic problem yet it is not recognized as a disability so do not get
support financial or otherwise? I have tried Zinc vitamins, cutting out various food groups and
nasal sprays with no result and feel i am at a loss as to what to do next! The Dr do not help as
they do not now how to and there is very little research on the problem! As long winded and
dis jointed as my story has been i hope it helps you in some way and possibly me and other
anosmics in the future!
0067
03/10/2011 - 7:34 pm
What is your gender: F
How old are you: 18
At what age did you notice the change in your sense of smell: 2
What country do you live in: United States
What is your race/ethnicity: caucasian
I've never had a sense of smell. When I was little I used to pretend that I was able to because I
thought I had to be able to 'learn' how and I just wasn't good enough at it yet. I recently took a
comprehensive smell test at the doctor's office and was diagnosed with anosmia. My identical
twin sister is not anosmic.
0068
03/09/2012 - 4:29pm
What is your gender:
How old are you: 68
At what age did you notice the change in your sense of smell:
What country do you live in: USA
What is your race/ethnicity: Hispanic
I have COPD, I have had a bad smell in my nose like a smoke or insecticide for about 3 months
now. It seems to be worse at night. I can go outside and the smell is not there, I sprayed bug
spray in my bathroom for ants and my oxygen concentrator was in there. I had it replaced but
the smell is still in my nose. Could that have done something to my nasal passages?
0069
03/25/2011 - 3:01 pm
What is your gender: F
How old are you: 56
At what age did you notice the change in your sense of smell: 53
What country do you live in: Ireland
What is your race/ethnicity: Caucasian
In Autumn/Winter 2008, I suffered a series of colds/flu/sinus infections. I noticed when these
alleventually cleared up, that my sense of smell and taste had diminished. In the following
months, the deterioration continued. I now have virtually no sense of smell and a very
dimininished sense of taste. I saw an Ear, Nose Throat specialist, had an MRI scan to rule out a
sinister cause, and was told, more or less, "tough luck, it is possible that your sense of taste and
smell might improve, but there are no guarantees and you may never get them back." When I
asked if there was anything I could do to improve the situation, I was told there isn't.
0070
03/28/2010 - 5:05 pm
What is your gender: F
How old are you: 60
At what age did you notice the change in your sense of smell: 59
What country do you live in: United States
What is your race/ethnicity: Caucasian
About a year ago I started smelling a strong unusual smell that I had never smelled before. At
first I thought it was my urine. Then I thought it was my cat who had an abscess. I started
smelling it more and more. I thought it was from the cat sleeping on the couch or my bed. I
bought a rug shampooer and shampooed my carpets, upholstery, and washed all the linen in
the house, but the smell continued. Then I started smelling it at work and on the bus; so I
figured it was me. Recently I had the nerve to start asking people if they could smell it on me.
No one could. I started researching olfactory hallucinations. I had an MRI showing nothing but
age-related changes (micro infarctions in the deep white matter and ventricles at the upper
edge of normal). This smell was also associated with the sensation of menthol in my nose prior
to the strong smell (but without the menthol smell). I have an appointment with a rhinologist in
several weeks. In the last two days I have noticed a !
loss of smell. Today I noticed I cannot smell perfume, lit matches, candles, basil or basically any
smell in my environment. If the strong smell that I originally smelled a year ago disappears, it
might not be all bad.
0071
05/01/2011 - 10:00 am
What is your gender: F
How old are you: 21
At what age did you notice the change in your sense of smell: 6
What country do you live in: Sweden
What is your race/ethnicity: Caucasian
I don't know if I've been anosmic from birth or if it's something that happened to me when I
was very young, because I can't myself remember any period of my life where I actually was
able to smell.
My parents never noticed that I couldn't smell, so I'm not sure if I pretended to be able or if I
actually was able.
However, when I was six years old I apperantly came home from school and asked my mother
how freshly baked cinnamonrolls smelled like. We'd baked in school, and everyone was so
excited about the smell when they were brought out of the oven and I instead got sad because I
couldn't feel it. My mother got surprised, because she had absolutely no clue about this
condition before that. We went to the hospital to check it out, but with little result. I was asked
to smell several differnet things while being blindfolded, and I couldn't smell anything. The
result was however that I was a stubborn child who lied, so not much more was done...
After that I've never been able to smell atleast. I'm 21 years old today and I get an itchy feeling
in my nose when I cut garlic for example. I can feel that it's a very very strong smell, but it's
more like it's a taste stuck in my upper mouth rather than a smell going through my nose. But I
can stand right next to a fire and wont be able to smell the smoke. I regularly both cook and
bake and besides onions and garlic I never pick up anything else. I grew up on the country side,
but I could never smell the fertilizing.
I don't know if this is any help at all, but since I myself really feel left out when other people are
talking about smell, and don't really have a clue about what's wrong with me, I just wanted to
contribute in any way I could.
0072
05/07/2011 - 12:26 am
What is your gender: M
How old are you: 42
At what age did you notice the change in your sense of smell: 32
What country do you live in: U.S.A.
What is your race/ethnicity: white
I was diagnosed with sinus problems at 16 or 17, this wasn't to bad until I moved to Colorado
from Tennessee when I was 30. After moving my sinuses improved for a short time and then
worsened. I was working construction and this was new for me, I had only worked construction
for a little over a year before. I was exposed to the usual air pollution, chemicals, etc.. I quit and
hiked the Appalachian Trail after 2.5 years. No sinus meds, I remember my sinuses would
sometimes bother me with congestion, poor smell. After that I went back to Colorado, worked
construction, married and my sinuses had become a serious problem, diagnosed w/ rhino
sinusitis, poor sense of smell, took singular, rhinocort spray w/ minimal improvement,
antibiotics and prednisone for sinus infections, allergy test allergic to dust mites and trees.
Sense of smell poor, I can only say I can not smell or taste almost all of the time and when I can
it is poor. Had surgery over a year ago to remove polyps, turbinate reduction. I also have a
deviated septum, left side of nose is more blocked, but surgeon decided not to fix during
surgery. After surgery I could smell and taste before I left the hospital, this was outpatient
surgery. I could smell and taste w/ the packing in my nose for three and a half days, then I lost
it, no smell or taste. One year later same as before surgery. I have been taking a medicine for
enlarged prostate for four years and it causes stuffy nose, stopped taking it a few months ago,
congestion is less, but I still can not smell or taste. Lost smell and taste approximately ten years
ago, also let me add I haven't worked construction in almost 2 years. I would say my sense of
smell and taste slowly disappeared. Also I was a light smoker, but quit one year before I hiked
the A.T.. I think this should be considered as serious as losing one of the other senses, but it is
not. It is so frustrating and how it has affected my life emotionally and the choices I !
have made has to be negative.
0073
05/25/2011 - 1:32 am
What is your gender: F
How old are you: 62
At what age did you notice the change in your sense of smell: 61
What country do you live in: United States
What is your race/ethnicity: anglo / american
A year a May 2010 I got the flu with sinus symptoms. As I started feeling better after taking
antibiotics, and my sinuses cleared up, but my sense of smell and taste didn't return. I had
surgery last september to remove a turbinate on the right side. There a times that I have
fleetings smells, and I can tell if something that I eat is menthol, mint, or salty, sour and sweet,
but I can't really identify tastes or smells. [...] I would travel to see a physician who treats
Anosmia, but I don't know of anyone who takes this condition seriously. [...]
0074
05/26/2011 - 9:49 pm
What is your gender: F
How old are you: 45
At what age did you notice the change in your sense of smell:
What country do you live in: united states
What is your race/ethnicity: caucasion
I have never really been able to smell, that i can remember. i can smell things like amonia and
bleach but it has to be right under my nose. its very frustrating not to have this sense. i dont tell
people outside of my family that i'm not able to smell. ( i feel embarrassed) i rely on my
husband and daughter. as a nurse i know this is probably more common then one would expect
but have to say it almost makes me feel ashamed and left out, of being able to smell what a
sugar cookie, BBQ or a rose smells like. my husband tries to describe different smells to me and
i just try to imagine. i have researched for a surgery to cure this but to no avail yet. i will just
keep the faith and i'm thankful for what i have. :)
0075
02/04/2010 - 3:57 pm
What is your gender: F
How old are you: 38
At what age did you notice the change in your sense of smell: 26
What country do you live in: scotland
What is your race/ethnicity: white /scottish
Have had sinus problems and allergies for a time before 1998 when I lost all sense of smell. I
was diagnosed with allergic rhinitis due to allergies but still maintained a sense of smell,
however, after the birth of my first child I had a sudden and total loss of smell. I had no cold or
other illness to prompt this and can think of no reason for this loss other than perhaps effects
of an epidural?? although I know this is unlikely but I did have a sense of smell the day before
my baby was born and none the day after.
Since this time I have constant irritation and pain from sinus infections etc.
I have tried many different nasal sprays and had allergies tested which showed nothing of any
consequence. I had a sinsus wash and removal of a nasal polyp. After this the irritation and
congestion in my nose has improved no end however my sense of smell has not returned.
The only thing which has ever had an impact on my sense of smell has been steriod tablets
which were prescribed for the asthma I also suffer from, but this relief is as short lived as the
prescription.
Now I continue to suffer from smells which I feel are "trapped " in my nose which change every
so often and this badly affects my sense of taste. These smells range from a "burning smell" to a
metallic smell".
I would badly like to recover my sense of smell which I feel is just lying dorment right now and
would gladly try anything new.
0076
03/12/2012 - 3:51am
What is your gender: M
How old are you: 72
At what age did you notice the change in your sense of smell: 71
What country do you live in: india
What is your race/ethnicity: hindu
I suffered from accute sinus for about 18 years and was taking nasal drops almost every two
hours, night and day. Suddenly, one morning about five years ago, I found that I was absolutely
cured. Till today I have had no problems whatsoever. For the past few years, I found that I have
lost my ability to taste or smell, - this would last for about two weeks and I would be back
tonormal. However, this time it has been more than seven months, and things are getting from
bad to worse. I cannot taste or smell anything at all, despite the fact that my sinus is totally
cured. I am a chain smoker and I drink about half a bottle of whiskey everyday. I do no exercise
- sleep late, get up late.
0077
04/10/2010 - 11:25 pm
What is your gender: F
How old are you: 18
At what age did you notice the change in your sense of smell: NA
What country do you live in: USA
What is your race/ethnicity: Caucasian
I have probably never been able to smell. When I was younger, I would pretend to be able to
smell, and when someone announced that they smelled cookies (etc), I would just go along and
say, "Me too." I had always figured a sense of smell was something that developed as you got
older. I remember telling my parents that I couldn't smell, however, in addition to the reasons
mentioned above, certain 'false alarms'(defined later) would cause me to actually believe I
could smell, (although I could never identify anything). As I kept going back and forth, my
parents attributed it to simply having a very bad sense of smell, and also the juxtaposition with
my sister's sometimes annoyingly good sense of smell.
(False alarms are things like the feeling of warm air in my nose when trying to smell warm foods
and beverages; this was misunderstood as a smell. I would also randomly get unpleasant
sensations in my nose that I attributed to my supposed sense of smell until around my senior
year when I was told during psychology class that the sense of smell is not actually felt that
way.)
I hypothesize that my difficulty in hearing (misleading: I can hear fine, but I don't always get the
words, I have processing difficulties) is connected to my lack of sense of smell. I was thinking
that perhaps the pathways necessary were not developed, or the nerve itself was not
developed. Just a guess though.
Recently, I put popcorn in the microwave for too long. when the timer went off, as I
approached the microwave, my eyes started to sting and I felt like coughing (as a side note, I
can 'taste' smoke, and I hate being in big cities because I get an unpleasant taste near the back
of my tongue. I opened the microwave, and smoke came billowing out (I managed to ventilate
the room safely). The issue is that I was two meters from the microwave at all times, (college
dorms) and other people in my hall asked the next day who had been burning popcorn.
I am worried about not being able to smell smoke. I also wonder what my sense of taste would
be like, if I could smell. I CAN tell the difference between an apple and an onion: onions are
more celery-like in texture. There are advantages, of course. Aside from pity and visually caused
disgust, there is no reason for me to take particular note of roadkill skunk; I have often heard
my family member complaining, and I'm sure whoever is reading this has experienced passing a
skunk while driving.
For the purpose of reference of possible connections and co-morbidity:
I have the primarily inattentive type of ADHD, and I process things at a significantly slower rate
than my peers, leading to delayed reaction to jokes, or belated understanding of the full import
and meaning of what people say, leading to an initial concrete interpretation, which is
responded to, despite understanding metaphorical or analogous intentions. Which sucks,
because then no one thinks I understand. I do make the connections, but I make them later. I
have difficulty talking to people, though I am surprisingly talkative on anonymous surveys like
this. Male teachers, no matter how nice and friendly they are, intimidate me, and
communication has grown significantly worse in the past year. Talking to a male professor is
like an unprepared oral presentation. My phobias have also gotten out of hand, and I have
spent more than 3 hours searching for a spider that I caught a glimpse of.
Not sure if any of the above is relevant, but it may be useful in determining causes, or not, in
which case you can ignore it.
Overall, I regret not being able to smell, although it makes for a good conversation topic when I
make a rare attempt to socialize.
These must be fun to read. Sorry if this doesn't help, great if it does.
OH yeah, about the 'NA' in the age of noticing change- it kind of stopped bothering me(the fact
that it wasn't there) until high school, but there was never any change in the actual smell, and I
have no memory of ACTUALLY being able to smell, other than warm feelings and unpleasant
feelings in my nose (near the nostrils).
0078
06/01/2011 - 3:36 pm
What is your gender: F
How old are you: 70
At what age did you notice the change in your sense of smell: 70
What country do you live in: u.s.a
What is your race/ethnicity: caucasian
my room mate burned a lot of plastic and computer parts in my burn barrel in the late
afternoon and left without telling me what he did. about midnight i noticed the smell of butning
plastic. it was horrible smelling. i and my dog went out and i immediately turned the hose on it
and of course, when the water hit it , it blew ashes and fumes into my face. i held my hand over
my mouth and nose as i tried to finish putting the fire out. my dog ran for the porch trying to
get away from it. i had to keep at the fire, because i live in the woods i had to make certain that
the fire was out and wouldn't re-ignite after i had gone to sleep. about i month later, i kept
smelling and like, tasting the smell of smoke and ash on my arms and in my nose. i had just had
a shower. of course that was the only body parts i could reach to sniff. i will tell you this,
although at 70, most people would laugh at me. it is true, i can put my foot,to my nose or the
back of my head for that matter. i always could. anyway now that you had your laugh, my feet
and legs also smelled like ny arms. i have developed a cough that wont go away and i use a box
of kleenex in a few days, especially when i am in bed. (at night)i spit up a lot of white foamy
mucus. my energy level has gone way down.(before this, i could match a young person on
energy. i seemed never to tire out. now i have to rest very often. i had to give up fishing (my
first love). too strenuous. i have been to my doctor many times. i also went to another dr. same
thing; all they ever do is give prescriptions, which have no effect. it has been 6 mos. and no
improvement. i have not been able to taste or smell since. to say i can't taste or smell, actually i
can taste and smell, but i can taste and smell, but nothing smells or tastes like what i am eating.
most things taste awful. i love twinkies, so i went and bought a whole box, thinking, if these
taste like something else, i know i am in trouble. to make a long story short, nothing tasts like
what it is. i know this is really strange and down right weird. whate do you you think. no i am
not a crazy old woman... i wish i were.
0079
04/13/2010 - 6:57 pm
What is your gender: F
How old are you: 39
At what age did you notice the change in your sense of smell: 39
What country do you live in: U.S.
What is your race/ethnicity: Caucasian + 1/16 Native American
I have always had an extremely heightened sense of smell, eg. I could not go to a friend's house
if (s)he had a cat because the smell of cat litter hit me as soon as I entered the front door, yet
no one else (including other friends visiting at the same time) even noticed. I have always been
able to smell things at levels that are undetectable to others (except the occasional pregnant
woman with heightened sense of smell). I could smell french fries in a car in front of me driving
65 mph down the highway in winter. I could smell cigarette smoke from 4 cars away, both
smoker's car and mine with all windows rolled up. I could smell subtleties in aromas (wood,
chocolate, carpeting, just about everything) that others couldn't smell unless it was
overwhelming.
All that changed 3 months ago. I had flu-like symptoms but without any nasal congestion or
stuffiness. I also had the worst headache I've ever had - it felt as though a football helmet 3
sizes too small had been forced onto my head. The pain did not lessen for 8 days. It then
diminished over days 9 and 10 and went away. I slept for most of that week with one exception
- the dr's appt. The doctor (M.D.) merely said "Oh, it's probably flu. Nothing you can do but
rest." and did not test for anything.
I can still smell very faintly some very strong odors: when my baby poops, I can no longer smell
it until I have actually taken off the diaper. And it's very faint. I used to be able to smell it from
another room. I can no longer smell aromas such as food cooking, pizza, flowers, spices and
others. I can no longer smell the mercaptan (gas-odor additive) when I turn on the gas stove. I
worry now about our safety.
I am in excellent health (I was a competitive triathlete until I had my baby), eat nutritiously organic whole foods (gluten-free, dairy/casein-free, homemade), red meat once a month, no
tobacco, effectively no alcohol (1 glass of wine 3 times per year when not pregnant or
breastfeeding), no drugs legal or otherwise.
My doctor first said "You're lucky! You won't have to smell the diapers!" When that upset me,
he replied that loss of the sense of smell was "no big deal" and I would "probably get it back in
a few weeks". That was more than a month ago and there has been no improvement. It is more
terrible than I could have imagined to have lost almost all sense of smell, especially since I had
had an incredibly sensitive and heightened sense of smell my entire life until 4 months ago. I
can no longer tell if food is spoiled, if there is a gas leak, if the pancakes are burning, if the
house is on fire -- not to mention all of the pleasant aromas that make life enjoyable!
I hope your research yields some useful results!!!
0080
06/17/2011 - 8:06 am
What is your gender: F
How old are you: 53
At what age did you notice the change in your sense of smell: 38
What country do you live in: Scotland
What is your race/ethnicity: White/British
I had become a grandmother at 37, and I was looking after my grandson, when my daughter
said, can you not smell his nappy, well that was the start of it, withing two years I would not
smell any bad smalls. I went to my doctor who poo pood it. By the age of around 45 I was
starting to lose some of the nice smells, such as mown grass and some perfumes. I went back to
my doctor at 48, by this time he had changed and been replaced by another doctor who said
that I should have had a brain scan, just in case it was caused by a tumour, this was not the case
and after some things being put up my nose to see if their was any physical evidence for the
lack of sense of smell, my sense of smell finally went a year after this. I am now 53 and cannot
smell a thing. I hate it because it is like living in a plastic bag.
0081
04/14/2010 - 1:57 pm
What is your gender: F
How old are you: 24
At what age did you notice the change in your sense of smell: 6
What country do you live in: USA
What is your race/ethnicity: white
I passed out from paint fumes when I was six. When asked why I didn't leave the garage when I
smelled the fumes, I told my parents I was "still working on smell." I thought it was something
you learned at school. Turns out, I'd always ignored unpleasant smells, and my parents thought
it meant I would be an easy-going child. They were wrong, but after a lot of tests in my small
town hospital, the doctors sort of threw up their hands and decided it wasn't life-threatening.
We assume it's congenital.
0082
07/14/2011 - 9:30 am
What is your gender: F
How old are you: 60
At what age did you notice the change in your sense of smell: 40
What country do you live in: uk
What is your race/ethnicity: uk
My sense of smell and with it my taste went very suddenly after cold like virus and a series of
violent headaches which I put down at the time - possibly wrongly - to blocked sinuses.
What also may be relevant is that at the time I caught the virus I was trekking in Bhutan and
was quite high - over 13,000 feet. I once had an extremely developed sense of smell and could
taste herbs and spices in food well enough to tell you what was in them. I also loved perfume. I
can no longer smell perfumes nor taste food.
I went to a specialist who did a lot of tests and then said 'you have completely lost your sense
of smell'. At this point I became extremely angry and said 'I know that, what cure is there?' and
he said 'none, try zinc' and that was that.
Losing my smell was a huge blow, smells evoke memories and enrich life.
Life seemed very empty when there was nothing there, like I was living in a box and looking out
at the world.
0083
07/26/2011 - 7:38 pm
What is your gender: M
How old are you: 82
At what age did you notice the change in your sense of smell: 79
What country do you live in: USA
What is your race/ethnicity: White
About 3 years ago I noticed that whenever my TV was on or whenever I was near a light turned
on or whenever my forced air gas furnace was on I had a smell of burned wood. The smell got
worse when I changed TV channels. My doctor prescribed neuronton(320 mg ) and the smell of
wood burning has decreased considerbly. If I decrease the neuronton, the smell gets worse.
0084
02/11/2010 - 8:33 pm
What is your gender: F
How old are you: 49
At what age did you notice the change in your sense of smell: 43
What country do you live in: USA
What is your race/ethnicity: White/American
2003/2004 relocated from mid-west to New England when it all began!
On occasion I would smell a bad odor. No evidence of a "real" odorant, as my family members
didn't smell anything.
I was very persisent in that it was something "outside" of myself that smelled bad. I had our
water checked, drains checked, changed laundry soaps, body soaps, etc.
The bad smell would come and ago until the summer of 2009. When "it" began to linger longer
and longer. Finally, in the fall of '09, "it" pretty much stayed. Now, the smell was worse than
ever. Warm aromas smell bad, the cold interior of the refrigerator, the freezer, the blow
dryer...UGH! And now, I cannot smell things I used to be able to smell i.e. peanut butter, coffee.
Then, it got worse! Sometime after Halloween, my sense of taste started to diminish. And by
December, my entire sense of taste was gone, and the bad odor persisted! I cannot taste sweet,
salt, bitter...nothing! Sometimes, I can detect a different taste between foods, but cannot tell
what it is I'm eating.
So, now it's January 2010, and between December '09 and January '10, I have lost 11 lbs (5'7"
133 lbs). The odor is so bad that it makes me nauseous at times, and I cannot taste anything.
My ENT is at a loss - my MRI was normal. No polyps, no tumors, etc. I did go on prednisnone
therapy for 10 days, but no results. I have no recollection of an upper respitory infection that
preceeded these symptoms, no head trauma, no allergies, no psychiatric illness...nothing that I
can tie in with my symptoms.
I am at my wits end! I have an appointment [...]
0085
08/10/2011 - 5:31 pm
What is your gender: F
How old are you: 26
At what age did you notice the change in your sense of smell: 26
What country do you live in: United States
What is your race/ethnicity: Caucasian
After a concussion resulting from a car accident, I noticed that my sense of smell and my
perception of what things I liked to smell and taste changed. I went from strongly detesting the
flavors of certain foods and flavors to enjoying them. Foods and drinks that I had liked the smell
of, but not the taste of, prior to my car accident suddenly became not only things I enjoyed
consuming, but my favorite things to order. When I go to Starbucks, they know right away to
make me a chai without my ever ordering it, because it's the only thing I get. I -hated- the taste
of chai before my accident. Smells that I did not like before suddenly seemed pleasant to me,
and some of my favorite smells from before were generally less appealing to me. I tossed out
some of my perfumes, and bought some new ones. I started trying new foods, and forgetting
old ones. Embracing these changes and looking at them as an opportunity to discover new
things to love was really the only way I could!
handle the situation without it upsetting or confusing me, since my brain checked out okay on
scans and my normal doctor did not really know what to tell me about it. Certain elements of
my personality have changed as well, but the one that has been the most quirky and the least
troublesome has definitely been the change in my senses.
0086
08/13/2011 - 2:26 pm
What is your gender: M
How old are you: 61
At what age did you notice the change in your sense of smell: 61
What country do you live in: United Kingdom
What is your race/ethnicity: White Englishman
I had a severe bout of flu with very heavy head cold etc. I took Beechams Ultra All-in-One
capsules and also visited a steam room and sauna whilst on the medication to try and clear my
head. This was some 6 months ago and my sense of smell and taste have not returned. I went
to the doctor after about a month who prescribed steroid drops to stop inflammation inside the
nose. The drops made me feel weird and made no difference to my lost senses, so I stopped
taking them; especially, since the information with the drops said they could destroy the nasal
membranes and kill sense of taste and smell - well really helpful - not!
As a cook of small talent with a nose for fine wine and a moderately convivial palate developed
over the years, I would be most grateful for any feedback on how this divine retribution for a
lifetime of over indulgence might be reversed. I have lost weight which is good but something
of the zest for life is lacking. Not that this would in any way interfere with a positive mental
attitude.
[...]
0087
08/16/2011 - 1:05 pm
What is your gender: F
How old are you: 35
At what age did you notice the change in your sense of smell: 14
What country do you live in: UK
What is your race/ethnicity: white
I lost my sense of smell during a school chemistry lesson when I was 14. Before this day I was
able to smell perfectly well. I can remember clearly working with potassium permanganate in a
science experiment and the chemistry teacher telling the class to be careful not to get too close
as the fumes could cause loss of smell. I remember being in good health- no colds or sinus
problems then and didn't think it was too serious, but sure enough the next day I developed a
heavy cold and my sense of smell went-literally overnight it just ceased. Initially I put the
anosmia down to having a cold thinking it would reappear within a few days but 21 years later,
it still hasn't returned, and I seriously miss it. My sense of taste is perfectly fine, although i did
try a taste test where my husband blindfolded me and told me to guess what 5 sauces he put
into my mouth were. I didn't get any of them right, yet I know what chocolate, coffee, lemon
and strawberries all taste like with my eyes open. What I did develop immediately after the
anosmia first occuring though was several years of serious sinus problems, chest infections,
asthma and eczema, snoring and not being able to breathe through my nose. It was like I had a
permanent cold and always had a tissue in my hand. As I was constantly blowing my nose, I
used to say that the reason I couldn't smell was because I had a cold. As a last resort I did have
an operation when I was 25 to trim away the nasal lining of my nose and this brought an
immediate cure to the asthma, eczema and sinus problems. So much so, I only have to blow my
nose now if I do have a genuine cold- maybe 2 or 3 times a year- and absolutely no more
eczema, asthma but the occasional bout of snoring when I've had a drink or two. But, sadly the
sense of smell hasn't returned.
There is definitely something socially embarrassing about anosmia and there really needs to be
more research done into it. What I would give to be able to smell again...There's definitely a
feeling of being ashamed because I can't smell and a fear that I myself smell and don't know it.
I'm forever using more deodorant, mouthwash, air freshener because I'm so paranoid that I
can't smell myself. My husband has to be the one to tell me if I do. Last week a pupil had left
raw chicken inside a locker outside my classroom in the heat of summer indoors festering away
and I couldn't smell a thing. Cue 2 days later when the cleaner is retching in the bin at the smell
outside my room and I am absolutely oblivious. I definitely felt embarrassed that I couldn't
smell anything but put on a pretend show that I could smell it . I used to be able to smell
everything and now I have absolutely no sense of smell whatsoever. I can remember some
smells but I truly miss being able to smell things like laundry, flowers, perfume, my husband,
bread baking or cooking smells. It made me sad that I couldn't smell the flowers at my own
wedding reception. Equally, it's a real pain when I can't smell nasty smells either. The number
of times I have to ask my husband if the house or my breath smells okay or he'll tell me that the
dog's messed on the floor and I've not realised it, or I've burned toast again because I haven't
picked up the first traces of smoke, leaking gas or the smell of sour milk or gone off food. It
worries me that one day if I have a baby I'll not be able to bond with it as I've read that the
smell of a newborn and mother is supposed to be integral in the bonding process or smell its
dirty nappies, although this may be a good thing. It may be of interest that no one in my family
has anosmia, as far as I'm aware, but I do have a congenital hearing defect too from birth and
have to wear hearing aids as a result which I have done since age 3. Could the hearing loss and
the anosmia be related?
I hope your research will one day (soon!) find a cure for this. I'd just love to smell the things
around me once again.
0088
05/09/2010 - 9:43 pm
What is your gender: M
How old are you: 23
At what age did you notice the change in your sense of smell: 9
What country do you live in: USA
What is your race/ethnicity: White
I'm not sure exactly when it was but some time in third grade I realized I could not smell
anymore. The only thing I can think might have cause it was a playground accident where I hit
the top of my head against a bar extremely hard; I remember having the worst nosebleed of my
life (my teacher later said it looked like I had been shot or stabbed) and feeling extremely
disoriented.
Interestingly I can occasionally smell things (1-3 times a month) but sometimes I smell odors
others assure me are not there. For example I recently smelled strawberries for several minutes
though no one else did and I could not find any evidence of strawberries anywhere nearbye.
0089
12/11/2009 - 5:48 am
What is your gender: M
How old are you: 38
At what age did you notice the change in your sense of smell: 38
What country do you live in: Australia
What is your race/ethnicity:
Around the time I was 35 I developed allergies and polyps. These were removed by an ENT and
for the first time in three years I could breath nasally. However I have no sense of smell - I
literally can not smell anything. But there are two exceptions. (1) I smell my body odor very
acutely and find it disturbing. I constantly wash myself and apply fragrances (although I can not
smell them), but despite these efforts I still smell myself. I worry others smell my body odor as I
do. (2) I experience snap shots of smells. For a very brief moment I smell something and
comment on it but then within and instance it vanishes. This occurs at odd times, for example if
I watch a cooking show on TV I will sometimes smell the cake being removed from the oven. I
know this is not possible and put it down to an olfactory mirage or memory. The experience is
vivid and enjoyable.
Questions and comments:
Will my sense of smell return to normal? [...]
0090
02/14/2010 - 8:59 pm
What is your gender: F
How old are you: 16
At what age did you notice the change in your sense of smell: 16
What country do you live in: usa
What is your race/ethnicity: cacation
My sense of smell is really bad. Always has been. However, I was burning hand sanitizer one
day and I could suddenly smell really well for a few days afterwords, and then it would go away.
I have done this a few times now and the result is always the same. Why does burning hand
sanitizer heighten my sense of smell? And why does it only last a few days?
0091
09/11/2011 - 8:00 pm
What is your gender: M
How old are you: 57
At what age did you notice the change in your sense of smell: 45
What country do you live in: US
What is your race/ethnicity: black
I am unable to smell or taste food! I did not realize how miserable it is not to be able to smell
odors or taste food. One of lifes greatest
pleasures is being able eat a great tasting meal. Taste and smell is two of the five senses of the
human body! I have felt like I am just existing and not really living! I would, if given a choice,
rather have this than to lose my sight or hearing or sense of touch! I am hoping to find a cure
for this problem. I seem to get glimpses of smell every now and then as well as taste. Even fowl
smells would be welcome. Sound desperate? Because I am!
0092
09/20/2011 - 3:32 pm
What is your gender: F
How old are you: 48
At what age did you notice the change in your sense of smell: 46
What country do you live in: us
What is your race/ethnicity: caucasion
I lost my sense of smell when I had a brain injury in 2009. I want it back so much, I cry ,
sometimes. I get bad tastes in my mouth too, especially after sleeping. what can I do or hope
for to have it back?
[...]
0093
05/11/2010 - 7:54 am
What is your gender: M
How old are you: 22
At what age did you notice the change in your sense of smell: ?
What country do you live in: Germany
What is your race/ethnicity: ...
My name is Phil,
and i live in Germany. I didn't remember when i lost my sense of smell. But i remember, even
when I was 13 years old, I could not smell. (I was on a birthday and walked through the forest
with 2 friends, and we talked about this.)
Problems:
- Sometimes its hard for me, when i wake up and want to go to work, i don't know how my
clothes smells.
Solution:
- I change my clothes usually after 2 days. And take everyday a shower.
I have no major limitations. It does not bother me really. If we can repair it, I would not do it. I
enjoy my anosmia really. :)
Sometimes my friends say to me, "oh it's stinks really hard here" and I say: "yes I've noticed. the
air is warm and it can breathe more heavily."
yeah thats a litte short form of my story.
sorry for my english. ;)
0094
09/30/2011 - 7:46 pm
What is your gender: F
How old are you: 52
At what age did you notice the change in your sense of smell: 52
What country do you live in: usa
What is your race/ethnicity: caucasin
Usually in the middle of the night, I smell something burning and I have to see if the house is on
fire. I also smell brewing coffee. I think my husband woke up real early to make it but he does
not. I have been smelling a sweet burnt smell on my body but if I put my nose to it there is no
scent. My husband smells nothing. Im not crazy.
0095
02/18/2010 - 3:28 pm
What is your gender: M
How old are you: 58
At what age did you notice the change in your sense of smell: 52
What country do you live in: usa
What is your race/ethnicity: white
post-prostectomy surgery
there was apparently some difficulty inserting airway tubes etc., just prior to surgery.
days after surgery I realized a clear change in my ability to smell and taste specific odors.
Citrics (orange, lemon, grapefruit) I now found very distasteful.
My favorite beer was Rolling Rock and I now found it distasteful.
I switched from Pepsi cola to Coke.
I could not smell distasteful locker-room odors (this was a good thing!)
Over tha last 5-6 years some of these have been slightly recovered.
0096
10/01/2011 - 4:13 am
What is your gender: M
How old are you: 55
At what age did you notice the change in your sense of smell: 55
What country do you live in: india
What is your race/ethnicity: Indian hindu
Iam 55 years. from last 6month I am smeling only like burn vegetable oil. The smell is so strong
that i use mask, but no use that happens all the time. i tride to smell assenc,purphums. kerosin
oil, nepthalin and lot of other smelling thing but thats all of no use i only smell that rotten oil
only no other smell good and bad but I am so hungry that i am not able to take any food even
without oil and a kitchen where no oil even i keep but no use all and every where i smell same
my life now a days a hell. I tested by ent speshalist doctars CT scan but they found nothing. [...]
0097
10/17/2011 - 1:14 am
What is your gender: F
How old are you: 67
At what age did you notice the change in your sense of smell: 64
What country do you live in: USA
What is your race/ethnicity: Caucasion
I've always been sensitive to strong perfume scents and have had bouts of sinusitis throughout
my life. Nothing serious and usually seasonal. My husband and I started a business in 2002
making and selling highly fragranced candles wholesale and retail. We both worked at the shop
and were surrounded by the fragrances daily for about 4 years. He passed away in 2006 and
about 2 years later I started complaining to my mom (who now lived with me) about strange
smells in our house. She never smelled them. Then I started noticing that my favorite perfumes
had were smelling bad and were irritating to my nose. They smelled okay to my mom.
Gradually, every scent in the house was irritating my nose and it was even hard to sleep at night
as these weird scents were assaulting my nostrils. The strangest thing I've found is that I can fry
chicken, steak, etc. and can't even smell it cooking. But I can still taste it and it tastes good. The
most irritating part is that when the distorted smells are the worst, I even seem to have an
unpleasant chemical taste in my mouth. My mouth is also always very dry and I constantly chew
gum for this or to mask the chemical tastes. I try to ignore these things but it does get
depressing, especially since I can't enjoy the scents of my favorite colognes or just the simple
smell of a rose or the baby powder on my grandchild. I have been to two ENTs in my area. One
had me get an MRI of my brain. No tumors were found. His only find was one slightly narrowed
artery on the right side of my head. The other ENT gave me two expensive nasal sprays but they
were of no help at all. Some days it seems worse than others. Going outside in the fresh air
helps but once I'm inside a building or around people, my nose starts picking up strange,
unidentifiable, irritating scents and the mystery continues!
0098
05/13/2010 - 5:06 am
What is your gender: M
How old are you: 68
At what age did you notice the change in your sense of smell: 67
What country do you live in: usa
What is your race/ethnicity: white
I had a knee replacement on march 15 of this year i cannot certain smells & i also have a slight
metallic taste on some things that i eat is this normal after surgery
0099
10/31/2011 - 2:53 pm
What is your gender: M
How old are you: 73
At what age did you notice the change in your sense of smell: 32
What country do you live in: england
What is your race/ethnicity: british
head cold 1970. no smell since.operation for nasal polyps 1978.nasal sprays and drops on and
off.two more operations in 2001 and 2003. no success. all this time my nose was blocked most
of the tlme.the only relief was when i was prescribed prednisolone.after a few days my sense of
smell returned and my nose was back to normal.because prednisolone is only prescribed for
one week in 5gm. tablets the effects soon wore off after a week or so. my nose has been
clearer for the last 7 years, but no smell unless i can beg my doctor to give me prednisolone
again.i smell nothing at all and can only taste very little.
0100
05/16/2010 - 10:38 am
What is your gender: F
How old are you: 38
At what age did you notice the change in your sense of smell: 25
What country do you live in: United Kingdom
What is your race/ethnicity: British
I was hit by a car whilst on a push bike 3 years ago. I hit the wing of the car with my body and
then bounced off the wing and back on to the road where I hit the back of my head. I first
realised 4 days later (after the shock and body bruising had subsided) that I could not smell
anything, when I was carrying a bottle of bleach and it felt damp, I assumed it must be water on
the bottle as I would have smelt it if it was bleach, but when I saw my coat was white where it
had once been grey I realised it was bleach and that I could not smell. Over the last 3 years I
have regained some of my sense of smell in that if there is a strong odour I will know that there
is an odour but not usually what it is and often it smells unpleasant. some odours i detect my
association (e.g. woodsmoke and coffee odours smell quite distinct, and unpleasant, but can be
assocaited with the same odour occuring where you expect to find these odours (near an open
fire, outside a coffee shop)).!
Taste has been dramatically affected and so my enjoyment of food and cooking. I am told that I
am now unlikely to get any further improvement. I have taken zinc piclolate to stimulate nerve
regrowth and also nasal steroids. My life is far less rich and my enjoyment of things (food, going
to the seaside, pretty much anything) is often greatly reduced. You don't know what you have
got until it has gone!