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Volume 17, Issue 5
Is a nonprofit, charitable organization
This newsletter is not intended as a substitute for your physician.
.
Always seek his/her medical advice.
The results of our survey:
Thanks to all who participated!
Families of subscribers
Families of subscribers
How many of you have been diagnosed
Have many of you have been diagnosed with MVP 35% with MVP 94%
MVPS 10%
MVPS 53%
GAD (generalized anxiety
GAD (generalized anxiety disorder 24% disorder 39%
Panic Disorder 22%
Panic Disorder 37%
Depression 32.5%
Depression 40 %
Social Phobia 17%
Social Phobia 12%
OCD 12%
OCD 6%
Agoraphobia 6%
Agoraphobia 10%
IBS 23%
IBS 45%
TMJ 12%
TMJ 42%
Thyroid Disorder 31%
Thyroid Disorder 22.5%
Endometriosis 11%
Endometriosis 13.5%
Lupus 6%
Lupus 0%
Fibromyalgia 22%
Fibromyalgia 13.5%
Bipolar 14%
Bipolar 4%
Migraines
Migraines and other headaches 31% and other headaches 40%
Scoliosis 19.5%
Scoliosis 32.5%
Chronic Fatigue 9%
Chronic Fatigue 30%
Sleep Disorders 39%
Sleep Disorder 28%
Interstitial Cystitis 4%
Interstitial Cystitis 11%

Our Thoughts
A Few Results From Our
Online Survey
Once again, IBS was the biggest problem .
IBS 38 percent
Thyroid disorder 25 percent
Fibromyalgia 13 percent
TMJ 13 percent
We were happy to see that 53 percent of you have actually been diagnosed with MVP Syndrome, or dysautonomia.
We did a survey several years ago, and we had about 2 percent diagnosed with the syndrome. So, we are getting somewhere with the medical profession.
Another surprise was that 32 percent of you have scoliosis, and 19 percent of your relatives have it. This is a huge number considering that only 2 percent of the normal population has scoliosis.
Here's more data. You can compare it with the numbers on the first page.
Normal population
• IBS
20 percent
• Thyroid 6 percent
• Chronic Fatigue 0.4 percent
• GAD (generalized anxiety disorder)
3-4 percent
• Fibromyalgia 3-5 percent women,
1-2 percent men
• Social phobia 7 percent
• Migraines 16-17 percent
• Tension headaches 30-90 percent,
(mostly women)
• Cluster headaches 3 percent, (mostly men)
• TMJ 8-10 percent
• Depression 16 percent
• Panic disorder 2 percent
The percentage for MVPS/D patients compared to the normal population is unbelievable. In fact the numbers are mind-boggling!!!
Now, we said it before, this is a very unscientific survery, and we are not doctors. But, we think this does help to understand how many symptoms people suffer from with the syndrome.
Different studies will have different results, but they are not usually that far apart.
Sources: Statistics for Calculations,
USChealth.org, Relieve Migraineheadaches.com, NIMH, American Health Society
Beverages with an
Unhealthy Boost
You've seen them in the grocery store refrigerated coolers with fancy names, like Red Bull, Monster, Full Throttle, and Rockstar. They're the so-called
"energy drinks" that come loaded with

caffeine, sugar, vitamins, minerals, and other ingredients. But are they really good for you? Johns Hopkins reviews the data.
The popular high-caffeine, high sugar beverage, typically sold in 8.3 oz. aluminum cans (two-thirds the size of a standard Coca-Cola), contains about seven teaspoons of sugar and as much as two to four times the amount of caffeine
(9 milligrams per fluid ounce) as Coke.
Caffeine is a drug and should be treated with caution. Some people are now suggesting that warning labels be placed on energy drink cans because of their high caffeine levels and their potential to raise blood pressure. Elevation in blood pressure was the point of a small study presented at a recent American Heart
Association meeting.
"While the increases didn't reach dangerous levels in the healthy volunteers, the increases in blood pressure and heart rate could prove to be clincally significant in patients with heart disease or in those who consume energy drinks often,” said James Kalus,
Pharm.D., senior manager of patient care service at Henry Ford Hospital in
Detroit, Michigan, who led the study.
"Individuals with high blood pressure and heart disease should be advised to avoid these drinks," he said.
Most energy drinks contain high levels of caffeine and taurine, an amino acid also found in protein-containing foods such as meats and fish. Both have been shown in some studies to affect heart function and blood pressure. In contrast, sports drinks like Gatorade and
POWERade are simply mixtures of water, sugars, minerals, and salts, without chemicals aimed at increasing energy or alertness.
The study found that heart rate levels increased in healthy adults who drank two cans a day of the popular energy drink.
People with MVPS/D really are not considered to have heart disease, however we do have fast and irregular heartbeats some of the time. We have always stressed the elimination of caffeine from our diet.
For us, caffeine also can cause anxiety and panic atacks. Caffeine is also a diuretic. People with MVPS/D already walk around with low blood volume; we don't need a diuretic to make things worse.
If you are on a beta- blocker, caffeine can alter the effectiveness of these medications.
Dear Bonnie: You answered all my questions and more. I want to thank you for your time and encouragement for me to start my lexapro. I wasn't sure if that was the solution to my symptoms, but after a few days on it, I already feel the beginnings of some improvement. My doctor told me my symptoms were all anxiety-related, but I was stubborn and

insisted I had nothing to be anxious about. Little did I know that my body chemistry had a lot to do with my symptoms and wasn't due to any exterior circumstances. Your web site helped me enormously. My husband and I were starting to think I was imagining all this, and he's probably thinking his wife was going crazy. My symptoms were affecting all areas of my life, especially my marriage, and my patience was almost non-existent with my kids. I was often irritable and moody, which is not typical of me. I spent hundreds of dollars and many hours in different specialists' offices, to no avail. None of them could pin down what was wrong, and I was becoming exasperated.
Stomach aches, chest pain, headaches, racing heart, fatigue, and PMS were daily issues for me. I had no quality of life anymore. Not one of the doctors I visited explained MVPS to me or even brought it up as a possibility . It was after researching on the internet that I put all of it together, and showed my husband all the info. I feel so validated!
To this day my doctor doesn't buy into the syndrome. He says it's just anxiety.
He doesn't relate any of these symptom tendencies to people with MVP.
Nevertheless, I am ready to start feeling better with the lexapro and learning to slow down, and trying to drink lots of water. My only fear is that one day the lexapro stops working. I have read that it can happen to some people. What is the best way doctors say to prevent this?
Does alternating meds help, or maybe taking a break from the meds from time to time to prevent your body from building up tolerance to the meds? What is your experience with this? Any info would help since this is a big worry for me. I don't like the idea of increasing my dose every time. Right now I'm on the smallest dose of lexapro, and I'd like to keep it that way. I will be signing up for your newsletter, as mine has expired.
If you have any back issues, I'd love to have them. Thank you so much. You are helping so many people, and I'm just one of them.
"While the body does develop tolerance to many drugs of abuse, it does not necessarily do that when dealing with prescribed drugs affecting the central nervous system. There are many people who have taken tricyclic antidepressants for decades without any need to increase the dose and without any fall-off in efficacy. Some people have taken SSRIs for nearly ten years with continuing good effects.
On the other hand, there have been a small number of people who do report that the antidepressant effects disappear after some time. Such people will nearly always do well if switched to an antidepressant that belongs to another class of drugs. If the second drug stops working, a switch back to the first will usually be followed by a good response."
Ivan Goldbery, M.D., Director of
Psychopharmacologic Institute, New York,
NY
Mine is an interesting case:
My MVP was discovered accidently in
1990 (I was 58 years old). A G.P. had

lowered my dose of Synthroid too much and too rapidly (I had been taking it since I was 23 years old) for hypothyroidism. I developed constant palpitations, my blood pressure went up, and I went to the ER. For the first time a
Dr. heard a "click" sound in my heartbeat, which could only be heard while I was lying down. An echocardiogram confirmed his diagnosis.
However, when I subsequently learned about dysautonomia from your mailings and several books, a lot of things that had happened to me before were explained! (Most physicians have never heard of it).
I was a classic case history: Female, slim, low blood pressure, low body temperature, migraine auras, IBS under stress, hay fever and many other allergies, cold hands, intolerance to heat, inability to perspire, tinnitus, occasional dizziness, skin rashes, occasional panic attacks, sensitivity to smells and sounds, intolerance for most medications, etc., etc.
I was (and am) basically a very healthy woman, believe it or not! I don't take any medications except Synthroid, calcium, and vitamin D (I do have osteoporosis), and a multi-vitamin 3 times a week. Once I learned that my hypersensitivity to so many things all had a root cause in my dysfunctional autonomic nervous system, I made sure my doctors were told about it so they wouldn't keep prescribing medications which would create even more problems for me. I upped my exercise level to a half hour or more a day; swimming, moderate aerobics, walking, etc. I drink
8 glasses of water a day. I try to do one meditation tape a day or do some
"reflective" activity, like sitting on the shore or watching a sunset. I am a church goer also and participate in good causes there. I have an active life.
Interestingly, my husband has MVP but none of the symptoms. He does exercise daily because of a heart attack (mild) 20 years ago and we both eat a hearthealthy low fat diet. We try to do fun things too.
Thanks for your great newsletter. It’s made life a lot easier for me.
From a Subscriber:
"I'm doing everything I can, and I'm getting worse.
Are there any stories of people getting back to normal? If so, what have they done to get well?"
We know there are many success stories out there. Our family has four of them.
Let's hear from you. We want to print these positive stories. We need before and after stories. You can email us, fax, or send your story to us by regular mail.
Names are not necesary. We never print them unless you request it. bonnie0107@aol.com
Fax 630-773-0478

Society for MVPS
P.O. Box 431
Itasca, IL 60143
Are you interested in joining a support group in the following areas?
If so, email these members:
Northville, MI area
Cindy: ggfrango@hotmail.com
Australia
Keysborough Victoria
Helena: revtalon@hotmail.com
Q&A With Dr. Watkins
Phillip Watkins, MD, is cofounder of The
Autonomic Disorders and Mitral Valve
Prolapse Center, Birmingham, Alabama
1-800-541-8602
Dr. Watkins will be back in the next issue.
Send us your questions.
PROLAPSE POTPOURRI
Does one develop a fear of certain things, like heights, driving on expressways, elevators, prescription medications, etc., or is one born with it?
The potential for fear is wired into our brains, so these things are natural.
When the fear escalates beyond reason, we call it a phobia, which is a type of anxiety problem. In a person with no tendency to anxiety phobias are more likely to be learned. But some people inherit a biological trait (involving chemical regulators of mood) that heightens their natural feelings of fear.
These people are prone to anxiety and more affected by conditioning, so they may develop phobias more readily than others. This certainly seems to be what's happening to many people with
MVPS/D.
Panic Disorder and Headaches
If you have panic disorder, you may be at increased risk for developing problem headache symptoms, including the severe symptoms associated with migraine pain.
About 50 to 66 percent of men who have panic disorder suffer from frequent headaches. And, people with panic disorder are up to seven times more likely to suffer the most severe of all headaches-migraine . One study showed that two out of three patients with panic disorder met the criteria for problem headaches, with migraine being the most prevalent form.
According to the National Headache
Foundation, there may be an association between headaches and food triggers. If you suffer from problem headaches or migraines, eliminating or limiting certain foods and beverages may help curb your headache symptoms. Since headaches may be a symptom in a variety of

medical conditions, you should consult with your doctor to verify whether or not there is a connection between your headaches and food trigger.
There haven't been enough studies to directly connect panic disorder and headaches. But it is quite interesting.
Source: Panic, about.com
Depression and Anxiety
Often Occur Together
Symptoms of depression and anxiety cooccur in certain disorders. In fact, according to the National Institute of
Mental Health, major depression often accompanies anxiety. Depression and anxiety have distinct clinical features, but there is some overlap of symptoms.
For example, in both depression and anxiety, irritability, decreased concentration, and impaired sleep are common.
It seems that some people have depressive symptoms and then begin having symptoms of anxiety. For others, the anxiety comes first. If you have both depression and an anxiety disorder, it's important to address both illnesses. The good news is that the usual treatments for panic disorder are effective for most people in treating depression.
Why You Should Talk to Your
Pharmacist
Developing a personal relationship with your pharmacist can yield many important benefits, especially if you take numerous medications . A survey commissioned by the American
Pharmacies Association found that people who know their pharmacists by name also tend to keep up to date on all the medications they take, read the labeling information on their prescription, know the active ingredients of their medications, and more often ask their pharmacists questions about their drugs.
The survey suggests that for many of us, pharmacists remain an underutilized resource. In fact, 58 percent of people who responded to the survey said they hardly ever, or never, asked their pharmacists questions.
Pharmacists oversee the proper dispensing of your medications. They are also experts on pharmaceuticals and, ideally, strive to provide you with comprehensive pharmaceutical care.
They know about the chemical composition of drugs, how they function in the body, the condition the drugs are generally used to treat, how drugs are absorbed and metabolized by the body, side effects, and worrisome interactions between them. It requires at least five years of study and clinical experience with patients to become a pharmacist.
He/she is one of the most accessible members of your health care team.
Issues the pharmacist can help you with:

The potential for harmful interactions between your prescription medications and over-the-counter drugs, such as dietary/herbal

supplements, foods, or alcohol.

Negative side effects and what you can do about them.

What you should do if you miss a dose.

How to store medications so that they retain their potency.

Ways in which you may cut your medical costs, such as switching to a generic.

Activities that might be a problem, such as involving sunburn or heat exhaustion, while taking certain medications.
NEW CHAT ROOM
It's now open. It's a great way to communicate with others who are experiencing the same symptoms you are. We hope you give it a try!
mitralvalveprolapse.com
Scroll down the menu on the left side of our home page. Click on "Message board" and "Chat room."
You will need to register the first time you
visit.
SUPPORT GROUPS
Centreville, VA
Elly Brosius
The Northern Virginia MVPS support group
Mind/heart discussion group is now meeting monthly by national teleconference.
There is no charge for the conference, but callers pay their own long distance telephone charges or use phone cards or free minutes. For conference details, how to sign up for call reminders:
mvps-d_oi_novaowner@yahoogroups.com, or call Elly Brosius at 703-968-9818 www.geocities.com/cfsnova/mvpsoi.
html. (teleconference)
Austin, TX
Mary Lou Dupuis
512-692-7631 mld@austin.rr.com
Margaret Hoffer
512-846-1854
Hoffer@austin.rr.com
Birmingham, AL
Christi Wilson
205-621-2055
CLW0073@aol.com
Arnold, MD
Toni Marshall
410-647-07578
Itasca, IL
MVPS Society
630-250-9327
Fax 630-773-0478
Bonnie0107@aol.com
Pasadena, CA
Catherine Thomas
626-798-3466

Lafayette, IN
Linda Webster
765-446-7898
LucyMVPS@hotmail.com
Australia, South
David gittinsd@hawkinsmedical.com.au
Germany: Frankfurt/Main bianca_mvps2000@yahoo.de http://www.mitral.de/
We need more support groups.
Interested? Contact us, we will help you start one. It’s really pretty easy.
PEN PALS
Barb Naomi
6 Prospect Hills
Apt 1B
Flemington, NJ 08822
Claudia Crandall
Las Vegas, NV
Jam546@peoplepc.net
Phyllis M. Swidorski
17888 36 th Street
Montgomery, MN 56069-4268
Pasmonty@frontiernet.net
Linda
Lafette, IN
Lucymvps@hotmail.com
Debbie Gregori
Santa Rosa, CA 95404 dlgregori@comcast.net
Barb Marler
Justme438@comcast.net
J. Schneider pearsch@sbcglobal.net
Jeanne Cummings
122 Millard Ave.
West Babylon, NY 11704 jeanneartie@optonline.net
Ellen Crouse
478 Slocum Dr
Folsum, CA 95630
Ellencrouse@sbcglobal.net
Ray McDonald fisemicr@yahoo.com
Suzanne Crossley maycross@comcast.net
Maria
Blueskyday1979@yahoo.com
Schalene Shea
Weshag2@yahoo.com
Wou ld you like to be a pen pal?
Contact us with the information you want to have printed.