MAYO CLINIC - PODCAST
Re: POTS
Vivien Williams with Philip R. Fischer, M.D.
VIVIEN WILLIAMS: Welcome to the Mayo Clinic Podcast. I'm Vivien Williams.
Thousands of teenagers have a hard time getting moving in the morning, but for kids with
POTS syndrome or POTS, the fatigue is debilitating. Here to tell us more about this
condition is Mayo Clinic pediatrician Dr. Philip Fischer.
Dr. Fischer, why don't we start out with a general explanation of what is POTS
syndrome.
00:00:27
DR. PHILIP FISCHER: POTS, P-O-T-S, postural orthostatic tachycardia syndrome. The
POT just means that when people shift from lying down to standing up and stay standing,
their heart rate goes way too fast. So postural orthostatic tachycardia means when people
stand up, their heart beats too fast to support their standing. The S means syndrome, so
it's not just the heart rate change, but it's a collection of other findings, other symptoms,
other problems that they have along with it
00:00:55
DR. PHILIP FISCHER: [Continuing] So POTS is a condition where people have a heart
rate change, but it's most characterized in teenagers by the syndrome, the rest of it.
They're usually fatigued so they've got chronic fatigue, and they've usually got headaches
or some other pain somewhere. They're often dizzy. They often have nausea and
digestive troubles as well. So POTS is a collection of findings characterized by a heart
rate change but seen with chronic fatigue and chronic pain.
VIVIEN WILLIAMS: And the heart rate change, does it speed up? Does it slow down?
What does that change mean?
00:01:23
DR. PHILIP FISCHER: Heart speeds up. So normally somebody lying down at rest is
going to have a heart rate of somewhere around 70 or 80. When we stand up, usually that
goes up by 10 or 15 beats per minute and then settles back a little bit. For people with
POTS it goes up by 30 or 40 or 50 or even more beats per minute so their heart rate
would go from 70 lying down to maybe 130 when they're standing up, a huge increase as
their body is off balance on controlling the blood flow.
VIVIEN WILLIAMS: So when they stand up, is that when they're feeling the symptoms
or do they feel the symptoms throughout life?
00:01:56
DR. PHILIP FISCHER: Good question. Most of the teenagers with POTS feel the
symptoms all the time. They feel the dizziness when they stand up and so that's the
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obvious part of it. But the other symptoms, the fatigue and the headaches, sometimes not
thinking clearly, those problems are present all the time. And it's a little tough to put it
altogether because the teenagers often are more bothered by the all-the-time feelings even
though we've named the condition based on what happens just when they stand up.
VIVIEN WILLIAMS: But that's the cause of the other problems, correct, the heart rate
change?
00:02:28
DR. PHILIP FISCHER: Ah, what's the cause of POTS? That's a tough one. POTS seems
to be caused by an imbalance of the nerve system's control over blood flow. The
messages coming from the autonomic or involuntary nervous system to tell the blood
vessels how tight or relaxed to be to control blood flow, that system is out of balance. So
the problem is that the blood's not going to the right place at the right time to do what the
body needs. So in fact, the heart rate change is probably a cause of some of the
symptoms, but really it's more a sign of what's going on and that the whole system is out
of balance.
VIVIEN WILLIAMS: That's a tough one.
00:03:06
DR. PHILIP FISCHER: It is a challenge. In fact, POTS was first described in 1993, so
before then nobody had actually recognized the condition. It was first described in
teenagers in 1999 so, in fact, we're just learning about what this is. And it was an easy -it was easy initially to put it together and say, oh, you have the chronic fatigue, you have
the dizziness and your heart rate changes. We could name the condition, but now as we're
learning more about it, it's tough to tease out how much the heart rate is just a sign and
how much it's related to the symptoms. And we're learning a lot. Year by year we're
learning lots more about POTS as it's been recently recognized and now being better
understood for the sake of kids hopefully that we keep learning.
VIVIEN WILLIAMS: Now, you're mention -- mentioned teenagers, but is this something
that starts in infancy and continues through adulthood or is it just in that age group?
00:03:52
DR. PHILIP FISCHER: It seems to start in the early teenage years. There are a few
different kinds of POTS, and it's a mix of a bunch of things. Adults do get POTS as well.
For them some just get it and they've got it for a long time. For other adults it's more like
it happens in teenagers. Typically it's near the beginning of the teenager years when
they're going through some changes in growth and changes in hormones and then
something happens, usually an illness like mononucleosis or some other illness with a
high fever. So they're coming into a vulnerable time of life with hormone and body
chemistry changes, then they get an illness, and somehow that tips them out of balance.
So typically POTS starts somewhere between 10 and 13 years of age, often triggered by
an illness, and then the person, rather than recovering, is left tired and dizzy and feeling
bad after that.
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VIVIEN WILLIAMS: So say a virus, the flu, a cold or something will -00:04:45
DR. PHILIP FISCHER: And it's usually a serious illness that pushes -- it's something that
lasts a long time like mono or something with a real high fever that lasts for a few day but
usually a virus kind of illness, usually more than just a cold. But some illness comes and
somehow the body's response to the illness somehow ends up tipping the body out of
balance so the autonomic nervous system doesn't control blood flow very well anymore.
VIVIEN WILLIAMS: Okay. Now, you may have mentioned this, but I'm not sure I'm
clear. If the onset is in the early teens or in the teen years generally, do they grow out of
it? Does it continue for the rest of their life?
00:05:19
DR. PHILIP FISCHER: That's the good news. Most teenagers that get this do grow out of
it. Adults that get it aren't so likely to outgrow it unless they get it the typical teenage way
of starting with a virus infection. But most teenagers, as they get through the teenager
years will get better. So it's a problem to have it and it messes up their teenager years, but
almost all of them do seem to get better and hopefully along the way we can do some
things to help them get better faster and help them deal physically with it along the way.
VIVIEN WILLIAMS: So if they start around 13, they might get out in their 20s? 30s?
19?
00:05:51
DR. PHILIP FISCHER: Yeah, usually by the end of all the body changes so somewhere
between 18 and 21 the body seems to be back in balance with them doing better. Some
people get better fairly quickly. A lot of them seem to take a few years, but usually by the
time they're about 20 they're doing a lot better.
VIVIEN WILLIAMS: And those years are so tender, you know.
00:06:10
DR. PHILIP FISCHER: Yes.
VIVIEN WILLIAMS: Around 10, 11, 12, 13 and then to have to be socked with this one
too is tough.
00:06:14
DR. PHILIP FISCHER: And it's really the prime of life in a lot of ways for education, for
relationships, for decision making for the future, and when somebody is too tired even to
go to school and have social interactions, it really puts a damper on the rest of their life.
VIVIEN WILLIAMS: So what can you do to help these kids?
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00:06:30
DR. PHILIP FISCHER: I think the biggest thing that helps in the sort term is letting
people know that this is a real condition. Many of them have seen a lot of doctors that
haven't been aware of this condition since it's relatively new, and many of them have
been led to believe that it's all in their head, that it's not a real problem that they have. So
we can validate the reality of what they're feeling when we can identify what's going on.
So I think we can help them cope with it just by letting them know that it's real and that
we care about them and that they'll probably get better over time.
00:06:58
DR. PHILIP FISCHER: [Continuing] We can also help them cope sometimes by having
psychologists that are good at working with children with chronic medical conditions to
help them realize that they will get better but to cope with it for the months or years that
they're bothered.
00:07:11
DR. PHILIP FISCHER: [Continuing] There are some medicines that can also help. We
can adjust what they drink and what they eat a little bit to help them so they'll feel better
along the way. But the biggest thing to actually help them get better is exercise, and it's a
little against what they feel like doing because most of these people are chronically
fatigued, they don't have energy, but the only thing that really makes them get better
quicker and actually recover faster is being on a regular exercise program.
VIVIEN WILLIAMS: Such as? What type of exercise are talking?
00:07:37
DR. PHILIP FISCHER: Usually it's aerobic exercise. It seems like it's best if they're
exercising in an upright position so they're not just exercising for health but it's to retrain
their autonomic nervous system to better control blood flow. So we like them to have
some sustained, somewhat vigorous but not too vigorous exercise on a regular, daily
basis as much as they can tolerate but gradually building that up even if they're just
starting at a few minutes, working up toward being able to exercise for about 30 minutes
a day
00:08:07
DR. PHILIP FISCHER: [Continuing] So for most of the teenagers it turns out to be
something like walking if that's not too boring for them; others would be bicycling. But
something upright so they can have some sustained exercise for several minutes which
will get their heart rate up a little bit, help their blood flow get going and hopefully retrain
the autonomic nervous system to get better.
VIVIEN WILLIAMS: Well, exercise, I mean, it's so wonderful. Not only does it help in
this case -00:08:30
DR. PHILIP FISCHER: Yep.
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VIVIEN WILLIAMS: -- it seems physically but also psychologically, I would imagine. If
these guys are fatigued, they might -- do they get -- tend to get depressed and things like
that or -00:08:36
DR. PHILIP FISCHER: Lots of these people do get depressed. Typically the people that
get POTS as teenagers are very high achieving individuals. They're typically the straight
A students that are involved in multiple sports or music or drama things so they are very
active, very high achieving, very successful, and they've got a lot going for them. But
after they've been tired and unable to keep up for months or years, many of them do end
up getting depressed because of what they've got going on.
00:09:03
DR. PHILIP FISCHER: [Continuing] There are benefits to the -- to the exercise. It helps
them feel better along the way, and when it's done right, they can see that they're making
progress and they're getting better. Where they used to be only able to exercise for seven
minutes, maybe they've worked it up to 15 minutes at a time so they can see that
progress.
00:09:20
DR. PHILIP FISCHER: [Continuing] The challenge though is if they exercise too much
they can push their body too far and end up dropping into feeling worse for several days
as they have to recover.
VIVIEN WILLIAMS: That -- that balance is -- is -00:09:32
DR. PHILIP FISCHER: Well, it's -- the real -VIVIEN WILLIAMS: -- tends to be something we have to be striving for.
00:09:34
DR. PHILIP FISCHER: The real issue for teenagers all the time and especially those with
chronic fatigue or POTS is balance. They need appropriate sleep, appropriate dietary
intake, appropriate exercise.
VIVIEN WILLIAMS: So -00:09:45
DR. PHILIP FISCHER: Balance is the key.
VIVIEN WILLIAMS: Yeah, so no caffeine, things like that, I mean, or -00:09:48
DR. PHILIP FISCHER: Caffeine makes the blood vessels twitchy which in a way would
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help because it tightens the blood vessels but, on the other hand, it makes them twitchy so
it ends up working against people with POTS. So people with POTS shouldn't have any
caffeine, obviously shouldn't have any alcohol, and they need extra fluids. Typically their
blood vessels are over-relaxed and they get floppy and so we need more fluids to help fill
up the blood vessels. But if we just give them more fluids to drink, they'll spend their
time in the bathroom, so we need to give them more fluids with a lot of salt and the salt
helps hold the fluids in the system to fill up their over-relaxed blood vessels so the blood
will be there to fill up the system and keep it flowing.
00:10:28
DR. PHILIP FISCHER: [Continuing] So we tell them to drink lots of fluids, eat lots of
salt, and then avoiding caffeine and alcohol and then trying to keep their weight in
balance so we're not overtaxing their body. If the fluids they add are all milkshakes, then
they're going to get overweight and have more trouble with fatigue.
VIVIEN WILLIAMS: I mean, all of those things sound like what you hear for healthy
living except for the salt intake.
00:10:49
DR. PHILIP FISCHER: Right. Yeah, the salt, we warn them. Once they get through their
POTS they need to go off the salt so they won't have high blood pressure as adults. But in
fact, a lot of the treatment of POTS is just returning to what would be a normal,
moderated, balanced lifestyle.
VIVIEN WILLIAMS: Okay. No medications?
00:11:03
DR. PHILIP FISCHER: Medicines do help for some people. The challenge we're doing
research on and trying to learn more is to figure out which medicines will help which
people. Since the blood vessels are floppy, sometimes we give medicines to block that
relaxation of the blood vessels. Sometimes we give medicines to help tighten up the
blood vessels and then sometimes we give medicines that just tend to smooth through the
nerve transmission between the involuntary nerve fibers and the muscles around the
blood vessels.
00:11:31
DR. PHILIP FISCHER: [Continuing] So there are three categories of medicines that we
use a lot, the anti-relaxers, the tighteners, and the smoothers to work through the system.
And other people have tried different medicines, as well, which might be useful for some
people. But our current challenge is finding the -- finding the right balance of medicine
for the individual patient, and that's tough sometimes because everybody's a little
different with the way their nervous system is.
VIVIEN WILLIAMS: It sounds like it -- it would be tough to diagnose. There's so many
different symptoms these kids can have. How do you know when it's POTS and how do
you know when it's something else?
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00:12:05
DR. PHILIP FISCHER: Very good question. The challenge is to think about it, first of
all, because if somebody comes in with chronic fatigue, especially following a virus
infection, maybe they already are depressed. There are lots of pieces going on, but the
key is to think about it and check their pulse, their heart rate when they're lying down and
then after they've been standing up for a few minutes. And when you see an excessive
change 30 or 40 or 50 beats per minute of a heart rate increase when they're standing up,
that would suggest that it really is POTS.
00:12:34
DR. PHILIP FISCHER: [Continuing] In addition, we also do some other tests of the
autonomic nervous system and others have even more severe changes of that. So the key
is to think about it and to test the heart rate in different positions to see if this is really a
POTS kind of problem or some different form of chronic fatigue.
VIVIEN WILLIAMS: Are there any -- I mean, is it dangerous at all? You said that it
usually resolves over time, but sometimes does it resolve or could it balloon into a
dangerous condition?
00:12:59
DR. PHILIP FISCHER: It does not seem to balloon into anything dangerous. POTS is
POTS, and that's dangerous on its own just because you're taking a high achieving
teenager and lopping out three or four years sometimes from their life right at their prime
of decision making and preparation for the future. So it's dangerous in terms of its
academic and social consequences, but it's not dangerous in the terms of being life
threatening.
00:13:22
DR. PHILIP FISCHER: [Continuing] Some of these patients will feel like it's life
threatening because when they stand up, their heart beats so fast and so hard they feel like
their heart is going to do something bad; they sometimes have trouble catching their
breath. So sometimes POTS can mimic more dangerous things, but POTS by itself does
not seem to be life threatening or dangerous. It's just life limiting along the way.
VIVIEN WILLIAMS: Now, if someone has POTS and it's kind of controlled and they're
able to participate, can they play sports where there'd be attacks? Can they play football?
Can they play volleyball?
00:13:52
DR. PHILIP FISCHER: The goal is to get people with POTS back to being able to be
involved in sports. When they're doing that well, then they're okay. Some people have it
more mildly. Here at Mayo we tend to see the people that have it more severely and they
haven't gotten better with other things that other people have done. But I've had some
people that are fairly mild and just with the fluids and the salt and the simpler sorts of
things they're able to return to sports and do well. So it is possible, and eventually they
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should be able to get back to full activity. And our goal along the way is to get them back
at least as much as we can to their high functioning, academic and athletic performance.
VIVIEN WILLIAMS: Okay. Do you have any idea how many teenagers have this?
00:14:31
DR. PHILIP FISCHER: I don't know. We wonder. Nobody's done good studies to see. It
seems like it could be as much as about 1 percent of the general teenager population.
People have done studies of teenage girls, in particular, to see how many have significant
problems with fatigue in their daily lives, and that seems to be about 30 percent, but that's
just fatigue. They feel tired while they're doing things
00:14:56
DR. PHILIP FISCHER: [Continuing] To have POTS with debilitating fatigue so they
can't go to school is probably down in the range of maybe about 1 out of 100. But one
thing we're looking towards doing is looking at a healthy school population to see how
many really have excessive heart rate changes and might either be suffering from POTS
or at risk of POTS but still trying to cope with it. So nobody knows from good
population-based studies, but it's probably in the range of about 1 percent of teenagers.
VIVIEN WILLIAMS: Okay. And just a question about fatigue. What is -- I mean, when
you say too fatigued to go to school, so they don't go to school, are they sleeping? Are
they that tired that they're asleep or are they just, you know, too wiped to -00:15:34
DR. PHILIP FISCHER: Yes to all of that.
VIVIEN WILLIAMS: Okay.
00:15:35
DR. PHILIP FISCHER: The typical person with POTS feels blah, lack of energy. Some
of them are sleepy tired, but usually it's more just fatigue, no energy, don't feel like they
can do anything sort of tired. So the typical person with POTS isn't so much sleepy as
just feeling unenergetic. At the same time though people with POTS seem to have a shift
in sleep cycle so it's very hard for them to fall asleep at night so they don't fall asleep
sometimes till the early hours of the morning. Once they fall asleep they often wake up
several times during the night and then by the time it's time to get up they really have
trouble getting up in the morning. But their body seems to be shifted so somewhere
around eleven in the morning till the afternoon, then their body is able to get up and get
going.
00:16:22
DR. PHILIP FISCHER: [Continuing] So for reasons we don't understand, people with
POTS seem to have the shifted cycle so the afternoons they're more functional; whereas,
mornings they're tired and having trouble getting out of bed and having no energy. But
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there seems to be a middle of the day to afternoon window where they might be more
functional.
VIVIEN WILLIAMS: Interesting.
00:16:39
DR. PHILIP FISCHER: So we send lots of people to -- POTS into altered school
schedules so they can start later in the day and then go through the afternoon and
concentrate their academic work when their body is at its best.
VIVIEN WILLIAMS: Okay. You mentioned that digestive issues were an issue but what
type of them?
00:16:55
DR. PHILIP FISCHER: Somewhere around a third or a half of people with POTS also
have digestive troubles and they can vary. The problem is that the blood flow doesn't
match the need, so the blood's not going to the right part of the intestinal system when it
needs to. So a lot of people with POTS have trouble with nausea. They've eaten food,
they've had something to drink, their stomach's ready for digestive action, but the blood
flow doesn't increase to digest the food so they feel nausea.
00:17:22
DR. PHILIP FISCHER: [Continuing] For others, less commonly, but some people with
POTS, the trouble is more sending too much blood to parts of the intestines that don't
have anything to do and then they start having cramping, colicky pains because the
intestines are trying to work on food when there's no food there to work on. So nausea
would be the most common digestive trouble, but sometimes there are crampy abdominal
pains or other abdominal pains that seem to be because the blood is either pooling or
flowing in a way that doesn't match what the intestines need.
VIVIEN WILLIAMS: Wow! So tell me kind of what you'd like parents to hear from this,
you know, if they suspect their child has some of these symptoms, what -- what should
they do? because again, I don't want to alarm people. Oh, my child's tired. She -- he or
she must have this syndrome. But when should you start being suspicious that it's more
than just, you know, typical teenage tiredness -00:18:10
DR. PHILIP FISCHER: Right.
VIVIEN WILLIAMS: -- and staying up late, that sort of thing.
00:18:12
DR. PHILIP FISCHER: It's a real challenge because POTS seems to be one end of a
spectrum and along the way people go from normal to a little bit tired to very tired to
tired enough to be missing school. But any teenager that's actually missing significant
amounts of school because of tiredness or pain certainly should have more evaluation.
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They should be checked out, and their physicians should be thinking about POTS, partly
to be able to help the POTS, but partly so they don't get too distracted looking for other
things.
00:18:42
DR. PHILIP FISCHER: [Continuing] Oftentimes as parents we have the idea that we
want to find it. We want to find the problem that caused this so we can attack the
problem. Many of these people started with an illness, but the illness is long gone and
sometimes we get too distracted looking for the illness that started it even though that
was just the trigger and the illness is no longer there.
00:19:02
DR. PHILIP FISCHER: [Continuing] So I think the messages for parents would be, first
of all, chronic fatigue is a real problem. It's fairly common. We need to take it seriously.
We need to evaluate people for other problems, anemia, inadequate sleep or other sleep
disorders, thyroid problems and POTS. So doctors need to be thinking about all the things
that could do it. And then once we've found out what's going on, we need to focus our
energies on what's actually going to be useful. Sometimes it's hard to get people to
exercise with POTS. That's the thing we know that's the most important, so we have to
tailor an individualized exercise program.
00:19:36
DR. PHILIP FISCHER: [Continuing] So what should parents know? Parents should
know that lots of kids are tired. There are lots of reasons for that, and most of those relate
to life balance and how much we're demanding from our teenage bodies. But besides that,
those that are missing school or having function problems of doing well enough in school
because of tiredness, those individuals should be checked out by somebody that's
thinking about POTS as well as all the other things
00:19:58
DR. PHILIP FISCHER: [Continuing] And if somebody has POTS, they can take hope.
They can have encouragement that the child probably will get better and that there are
some tangible things that can be done, partly medical but mostly by life style and exercise
programs, where the individual should be able to get better.
VIVIEN WILLIAMS: It is kind of hopeful because you hear so much now about, you
know, teen suicide and teen depression and if -- if this is something that will have an end,
boy, it's a lot better than -00:20:23
DR. PHILIP FISCHER: Right.
VIVIEN WILLIAMS: -- being in that other situation.
00:20:25
DR. PHILIP FISCHER: Right. There are lots of bad medical problems. This is bad when
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you've got it, but it's not life ending. It's something that should be able to get better so
people can return to a healthy life.
VIVIEN WILLIAMS: Do general pediatricians out there other than Mayo know to look
for this?
00:20:39
DR. PHILIP FISCHER: It's interesting. As we mentioned, it was only first noticed in
teenagers and recognized as POTS in 1999, so lots don't know about it, but with
increasing medical literature, more and more are knowing about it. So I've seen a change
where up to about a year ago when I found somebody with POTS, neither they nor their
doctors were very familiar with it. In the past year, I've seen more pediatricians and more
families who have actually heard about POTS before they get here. So there is an
increasing medical awareness and knowledge of the condition, and that's good. We still
have a lot to learn about it, but people are more broadly aware of it.
VIVIEN WILLIAMS: Now, one last question, does this syndrome put you at risk -- I
mean, are there any other things that go with it? Like if you have this odd regulation of
your blood because of the nerve situation, does that mean you're -- you are at an
increased risk for a stroke or heart attack -00:21:29
DR. PHILIP FISCHER: Right.
VIVIEN WILLIAMS: -- in the future? You know, is there anything else that goes hand in
hand with it?
00:21:31
DR. PHILIP FISCHER: As far as we know, POTS is POTS and does not give risk of
anything else in the future. In fact, it's not a heart problem; it's a control of blood flow
problem. The heart's actually very strong and doing well. There does not seem to be any
risk of heart attacks or anything else. The caveat in there would be that there are some
people that seem to have other family members with POTS, which would make us
wonder if there is some genetic influence. There are also some people that seem to have
built up antibodies against their nerve endings that make them not get the messages to the
muscles around the blood vessels very well, and we would wonder if some of those
people might develop other autoimmune or other antibody problems.
00:22:12
DR. PHILIP FISCHER: [Continuing] So we wonder a little bit about the genetics. We
wonder about the autoimmunity, but as far as we know, POTS is just POTS. It's not
associated with heart problems or lung problems or any other future disease. So once
somebody gets through POTS, maybe they'll be stronger because of it and do better as
adults and maybe that'll help them hang in there as they're going through the tough
teenager years with it.
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VIVIEN WILLIAMS: Thank you for joining us. For more information on the various
podcasts available from Mayo Clinic, go to mayoclinic.org/podcasts.
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