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Postural Orthostatic Tachycardia Syndrome

This section of our website contains a series of short pieces and articles of information that focus on the topic of postural orthostatic tachycardia syndrome (POTS), orthostatic intolerance (OI) and neurocardiogenic syncope (NCS). These three conditions are troublesome and annoying and lead people to seek consultation in this office. If you are one of those people, you should know that the evaluation will consist of these three parts:

1. Determination of cardiovascular status, to be sure there is no significant underlying heart disease.

2. Assessment of autonomic nervous system function, to be sure there is no degenerative condition involving the autonomic nervous system.

3. Development of your individualized program building on your clinical presentation, your past experience with treatment programs and a discussion of what may work best for you.

You are encouraged to read through the rest of this section. It contains articles specifically written for patients and answers to questions that they posed during office visits. It also includes a summary of information gained from participation in educational programs devoted to these topics.  

  1.  A Practice Philosophy.

There is a wide divergence of opinion about how to evaluate and treat patients who have postural orthostatic tachycardia syndrome. This section describes the practice philosophy that we follow here at Downriver Cardiology Consultants.  

  1.  Autonomic Dysfunction: An Everyday Occurrence.

So many aspects of our daily lives are under the control of the autonomic nervous system that all of us experience some manifestation of dysfunction virtually on a daily basis.   Typically, we just accept this as one of the annoying features of our daily lives such as blushing when we are embarrassed, or having our heart race when we get nervous.   This section emphasizes how normal it is to experience these things.  It also introduces the Relaxation Response, one technique for reducing muscle tension and helping to normalize the autonomic nervous system abnormalities.  

  1. Insights with POTS. 

Many people who have POTS become so frustrated with the condition that they don’t know what to believe.  Is this a devastating, life-threatening illness?  Or, is this all in your head?  This section looks at the scientific approach to these and other topics.  

  1. What’s New with POTS: 2009?   

Here we will review the important medical publication and research reports in 2009.  Most of the research reports come from the meeting of the American Autonomic Society held November 11-15, 2009.  

  1. What’s New From The Autonomic Society, 2012    

The American Autonomic Society met from October 31 to November 3, 2012. There were several research presentations that touched on postural orthostatic tachycardia syndrome (POTS) and orthostatic intolerance (OI).   

  1. Additional Resources, 2013    

  

A Practice Philosophy

Postural orthostatic tachycardia syndrome (POTS) is a medical condition that is relatively new in terms of a description and understanding. As a result, we do not have a lot of clinical experience or medical evidence concerning its diagnosis, treatment, and prognosis. In fact, many patients with POTS are discouraged to find that their primary care doctor has not heard of the condition. Patients frequently undergo a lot of testing with very little to show for it. This statement represents my personal perspective on POTS gathered from several years of patient care and my understanding of the medical research.

Here is how I understand postural orthostatic tachycardia syndrome. Most people in the world are going to have at least one fainting spell. The fainting spell may occur in the typical situation of someone is standing at the back of a hot, crowded room. They feel the episode coming on and they fall to the floor. Typically, there is a drop in their blood pressure or fall in their heart rate, or both. I consider POTS to be the body’s attempt to respond to that type of situation in a different manner. When the blood pressure starts to fall, the patient feels like they might faint, and the heart rate increases dramatically in order to keep the circulation of the blood at a high enough level that fainting does not occur. (This is how it got its name: racing heart beats (tachycardia) when a person stands up (orthostatic). That is the good part about POTS. Fainting spells usually represent just a small part of their collection of symptoms. The bad part about this reaction of fast heart rates in the upright position is that the person who has this problem often has prolonged periods of time with a racing heart rate during minimal activities. As a result, the heart races so much that it is like walking on a fast paced treadmill. After a while, chronic fatigue may set in. With that come symptoms of difficulty with concentration, brain fog, palpitations, nausea, indigestion, cold hands and feet, and a variety of other symptoms.

In my experience at least 50% of people who have POTS are able to identify when the problem began. Of those, a substantial number are able to identify the event that triggered their problem. Often, it is something like surgery, or an injury that calls for bed rest, some kind of illness or a very stressful situation (this could be emotional, physical or psychological stress).

One theory about POTS is that it represents an exaggerated form of deconditioning. Think about this, who has the worst postural orthostatic tachycardia? The answer is the person returning from the space station after several weeks or months at zero gravity. The people selected to be astronauts are among the most healthy, physically fit people in America. And yet, have you ever wondered why that space capsule would land and the astronaut did not fling the door open and wave to the television cameras? The answer is that zero gravity for several weeks created such severe POTS that they would be lucky to pick their head up, much less stand and wave. Because of zero gravity for weeks, they develop extreme orthostatic intolerance (inability to be upright). They need to embark on a program of physical therapy and reconditioning in order to regain their previous status.

So, this theory of exaggerated deconditioning goes like this: the person with POTS will have an illness, surgery, injury or some other problem that causes them to be at significantly reduced activity levels, if not bed rest, for just a few days. Perhaps because of some genetic predisposition, they develop this change of deconditioning in which their heart races when they are upright and they tire excessively with minimal activity. The solution to this is just the same as it is for an astronaut returning from an extended time on the space station: reconditioning exercise, and rehabilitation.

If you have read this far, you probably also have enough tolerance for bad things that can happen to people that you know this too: life is not fair. Some people develop medical problems that would not affect other people. POTS causes extreme exercise intolerance and the recommendation for the person is that they start to exercise! It is my philosophy that exercise in the only thing that is really helpful to speed up the time course in which patients recover from POTS. Medications can be used in the meantime to help control symptoms, for those patients who need them.

The type of exercise that POTS patients should do is based on what they are able to tolerate. Swimming is an ideal exercise because the patient can be horizontal as they swim through the water and they can get good exercise that way. Also, if the patient is standing up in the water, the water presses against the legs and their trunk and helps return blood to the heart, reducing the effects of gravity.

For a variety of reasons, some people just don’t take to swimming like a duck to water. If they don’t know how to swim, don’t feel comfortable about how they look in a bathing suit or hate the smell of chlorine, they need some other type of exercise. One good exercise is to use a recumbent bicycle. Here the person gets the advantage of exercise, but they are leaning way back so there is much less gravitational stress.

Another form of exercise is controversial because the medical research is split on its effectiveness. That exercise is tilt training. If you have had a tilt table test, you remember you were asked to be almost completely upright, but not move your arms and legs to speed up the return of blood back to your heart. That test then focuses on the small blood vessels that are the ultimate step in terms of blood pressure control. With tilt training you duplicate that by leaning back against the wall, keeping your feet about 18 inches from the wall. Some patients with POTS can do this very easily, and others can only tolerate one or two minutes before they need to move about.

With all of these exercises, the trick is to find out what works best for you and do it to tolerance. That is, don’t try to push too hard but try to extend your effort on a regular basis.

I think there is very good news for patients with POTS. Nearly all of them are people who are young and completely healthy at the time their problem began. Nearly everybody in this category will recover completely from POTS. Exercise helps speed up the time to recovery and medications can provide relief of or improvement in symptoms in the meantime.

Patients with POTS should also be reassured that we may not be able to explain all of the details about why POTS occurs but we do know this important fact: these symptoms of POTS are much more annoying than anything else. They are not the sign of a serious medical problem such as cancer, heart failure, warning of stroke, or the sign of some serious endocrine problem. Many patients with POTS get tested for these things by well meaning physicians. Unfortunately, this plants the seed that this condition is serious and that concern acts as a magnifying glass to make everything seem worse. Consider the analogy to a tension headache. Sometimes we can identify why it happens and sometimes it is related to stress. The patient can feel pretty uncomfortable, if not downright miserable, but it is not dangerous and there is no need for the patient to be concerned about their long term health.

There are certain experts on POTS who will try to identify each of the symptoms that might be present and then see if they can find a specific medicine for each one of those symptoms. Sometimes that means 3-5 medicines. These medicines also have a pretty good likelihood of causing side effects so these doctors are prepared to provide additional medications to counteract these side effects. Although several of these doctors are world famous for their treatment of POTS, my philosophy is the exact opposite. It is based on my understanding that this is a temporary condition that affects people who are completely normal and healthy. It may be triggered by surgery, an injury, bed rest or a stressful situation and then represents exaggerated deconditioning. Patients should do remarkably well and recover. Typically, this recovery takes months and sometimes a few years.

The issue of POTS as a complication for a patient with multiple other medical problems reminds me of a question I fell for during my first year in practice. Years ago, we used to do a heart catheterization by making a cut in the arm and using the artery by the elbow. Some patients found this very frightening, so we had to take pains to reassure them. One person asked me if he would be able to play the piano after this procedure. Of course, I reassured him. With a twinkle in his eye, he said “great because I can’t play at all now.” For the patient who has POTS as a complication of other multiple medical problems, I am also confident that POTS will be a short-lived aggravating medical issue but it also will resolve. Unfortunately, these people don’t return to the prime of health, but to their baseline state that they experienced prior to the development of POTS.

There are several websites that patients turn to for information about POTS and there are printed materials available from national centers such as the Mayo Clinic and Vanderbilt University. Please be reminded that this material represents my own practice philosophy. It is based on my experience with what seems to work. I have lots of satisfied, happy patients who have been able to work through and outgrow their symptoms of POTS. I hope you are one of those as well.

Felix J. Rogers, D.O. March 21, 2009
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Autonomic Dysfunction: An Everyday Occurrence.

The nervous system of a human being is one of the most complex, intricate and mysterious things in all of nature. We rely on it to tell us what is happening in our environment, to allow us to move about, get a job, chat with a friend, accumulate memories, experience emotions and to solve complex problems. Within this nervous system is a subdivision called the autonomic nervous system. This was previously called the vegetative nervous system because it plays a major role in the day-to-day activities of our body including digestion, response to stress, regulation of body temperature, and all sorts of things that might be considered part of the “housekeeping” function of the body we inhabit.

People with postural orthostatic tachycardia syndrome (POTS) are described as having a disorder of the autonomic nervous system. There is one important distinction between this and other autonomic nervous system problems such as pure autonomic failure, Shy-Drager, and diabetic neuropathy. Those problems are all serious, degenerative and progressive abnormalities of the autonomic nervous system. In contrast, POTS is a temporary problem and it may be considered to be an exaggeration of normal body function.

Abnormalities of autonomic function occur with all of us, on a daily basis. Sometimes these are annoying, they may be chronic, and they are rarely amusing. They are triggered by events that happen around us and often by our psychological state.

Here are some events that occur in our body because of the way the autonomic nervous system is affected by our psychological state:

rapid breathing (hyperventilation)                       Perspiration

racing heart                                                           goose bumps

fainting                                                                   brain fog

sweaty palms                                                        difficulty in concentration

dry mouth                                                              crying

urinary urgency                                                    stomachache

blushing                                                                 muscle tension

insomnia

 

Here are some things that occur for which we have conscious control:

Breathing rate

Muscle tension

Breathing patterns and muscle tension, for all practical purposes, are the only things that are under dual nervous system control. If we don’t think about it, we just go on breathing. If we do give it some thought, we can hold our breath to swim under water or we can speed up or slow down our breathing rate. Likewise, our muscles tense and relax as we move about during the day, without the need for our attention. However, if we choose, we can isolated an individual muscle group and tense or relax that muscle.

In contrast, nearly all of the other manifestations of autonomic nervous system function are not under our control. For example, organizers of athletic events and music concerts know to place a bathroom close to the area where performers warm up. They know that competition leads to increased levels of adrenalin, which in turn causes an increase in urinary output. However, we all know that we can’t just sit quietly and ask our kidneys to produce 10 ml less urinary output per hour, even though that would be a great advantage on those long car trips. Most of us put up with these alterations in autonomic nervous system function and accept them as part of life’s burden. For example, we blush when we are embarrassed, we get a dry mouth when we speak in public, and we get goose bumps when something really gets our attention. A change in autonomic function becomes a disease state that affects our quality of life or when it interferes with our ability to do the things that we enjoy or need to do. There is something we can do about this. We can take advantage of the fact that breathing and muscle tension are under voluntary and involuntary control. Not only that, these functions have influences on all of the other aspects of the autonomic nervous system as well. Let’s just focus on POTS for a moment. The major abnormality is a racing heart rate, which occurs because of increased activity of sympathetic nervous system which produces adrenalin, the stress hormone. The question arises, can we reduce the sympathetic nervous system activity, and reduce the production of adrenalin? The answer is yes. There are specific things that increase the parasympathetic nervous system, the brake, which opposes the sympathetic system, the gas pedal. Slow regular breathing at 6 breaths per minute has been shown to increase the level of parasympathetic nervous system function and restore a more normal heart rate pattern. It is also helpful in relieving and reducing muscle tension.

This has been studied scientifically, and reported by Herbert Benson, Ph.D., at Harvard University. He calls his technique “the relaxation response.” Here is a short summary of this method:

  1. Sit quietly in a comfortable position.
  1. Close your eyes.
  1. Deeply relax all your muscles, beginning at your feet and progressing up to your face. Keep them relaxed.
  1. Breathe through your nose. Become aware of your breathing. As you breathe out, say the word, "one"*, silently to yourself. For example, breathe in ... out, "one",- in .. out, "one", etc. Breathe easily and naturally.
  1. Continue for 10 to 20 minutes. You may open your eyes to check the time, but do not use an alarm. When you finish, sit quietly for several minutes, at first with your eyes closed and later with your eyes opened. Do not stand up for a few minutes.
  1. Do not worry about whether you are successful in achieving a deep level of relaxation. Maintain a passive attitude and permit relaxation to occur at its own pace. When distracting thoughts occur, try to ignore them by not dwelling upon them and return to repeating "one." With practice, the response should come with little effort. Practice the technique once or twice daily, but not within two ours after any meal, since the digestive processes seem to interfere with the elicitation of the Relaxation Response.

 

I would recommend that you try this at least once, but preferably twice a day. I think you will find the benefits will be significant. Incidentally, exercise also increases parasympathetic nervous activity. That is one reason why an athlete has such a slow resting heart rate.

Felix J. Rogers, D.O., June 2009

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Insights with POTS

Postural Orthostatic Tachycardia Syndrome (POTS) has been discovered only recently. Therefore, the research into this condition is new and usually involves small groups of people. The American Autonomic Society focused on research in the 2007 Streeten Lecture in Vienna, Austria. The overall goal of that presentation was to compare and contrast POTS with physical deconditioning. Individuals interested in POTS might find my review of that presentation to be interesting.

What is POTS? POTS is marked by normal heart rhythm at rest with no evidence of underlying heart disease, but with a sustained increase in heart rate of more than 30 bpm with 10 minutes of upright posture. However, there is no sustained or marked drop in blood pressure in this upright position. Even with normal blood pressure, patients frequently complain of lightheadedness, weakness, palpitations, blurred vision, breathing difficulties, nausea and headaches. These symptoms resolve when they return to the supine position.

Is POTS psychogenic? Because doctors can’t find anything “obviously” wrong with patients who have POTS, they may conclude that this problem is psychogenic (all in your head). To study this more completely, investigators from the Mayo Clinic did careful research evaluation of 14 patients with the diagnosis of POTS. When patients have a tilt table test, gravity pulls blood to the legs when patients are upright. In order to mimic these changes, special trousers can be placed on a person and then subjected to a vacuum. This is called lower body negative pressure (LBNP). Patients with POTS showed exactly the same response to LBNP as they did with being tilted upright.

Then, to test if this might be psychologically induced, the investigators tried to trick patients by telling them they were going to turn on the vacuum and create negative pressure but in fact the machine created its typical sound, but no vacuum was created. None of the patients had an increase in their heart rate. In addition, these patients did not have an excessive heart rate response to mental stress. There is no doubt about it: for patients with POTS, this increase in heart rate is the real deal.

POTS and the perception of discomfort: On the other hand, this testing of the psychological aspects of POTS also demonstrated something else. That is, patients with POTS are much more sensitive to things that happen to their bodies and they report it in a much more dramatic way than other people do. This is called somatic hypervigilance. For example, when tested for their pain threshold, individuals with POTS have a tendency to report their response more intensely than other people. This includes both their sensitivity to anxiety, and how much they notice changes within their body. The most dramatic increase for POTs patients was their tendency to consider an event to be a catastrophe when compared to control patients.

Are the changes of heart rate and venous pooling really abnormal? One problem that patients have with POTS is that they learn it is related to the autonomic nervous system and then they go to the Internet. When they look up autonomic disorders, they find postural orthostatic tachycardia syndrome. Nearby, either on the same page or with a link, they may find other things like pure autonomic failure (PAF). Unlike POTS, PAF is a horrible disease with relentless disease progression and agonizing clinical problems for which there is no effective treatment. So, are the changes with POTS really abnormal? Does this bear any similarity to other diseases of autonomic dysfunction?

Meticulous research in POTS patients has determined that there is only one group of people who respond in exactly the same way. Those are astronauts who were studied prior to space flight and on the landing day. Their responses are nearly identical.

Space flight gives us a unique opportunity because we can study people before and after the situation occurs. Most POTS patients are running around enjoying life before they develop their problems, so we don’t have a “before” and “after” evaluation. What we have learned about space flight is that lack of gravity causes the amount of blood volume to be reduced and it causes the heart to get smaller. This is characteristic of deconditioning. It supports the idea that POTS is a manifestation of exaggerated deconditioning. It also gives us a clue as to why certain drugs may be effective. The medicine Florinef helps to increase the blood volume. Midodrine helps to improve the blood pressure in spite of the low blood volume.

So, what is the next step? This research leads us to several conclusions. First, POTS is not psychogenic. That is, it is not “all in your head” but this racing heart is the real thing. At the same thing, the perception that patients have is likely to be exaggerated compared to that of another person who might have a similar increase in heart rate. We do have considerable control over this aspect of things. Usually, when people tell us to “chill out” they do so because we have become excessively concerned about something going wrong in our lives. We know is it difficult to control our responses at these times, but it is possible and sustained daily effort in this regard might be beneficial.

Second, it should be very reassuring for everyone who has POTS to know that this is not a major medical problem, and it holds nothing in common with the serious disorders of autonomic function that are described on Internet websites. In fact, the only thing it really resembles is the change that occurs in astronauts who have been subjected to zero gravity.

Although we haven’t been able to do much research for patients with POTS, we have poured billions of dollars into the space program, so we know a lot about astronauts. We know that space travel is associated with a loss of blood volume and with decrease in the size of the heart. We also know that the only truly effective treatment for this is exercise. For astronauts, just being back in the influence of the earth’s gravity represents a form of exercise. It turns out the same thing is true for people with POTS. Some find that raising the head of the bed just a few inches provides just a little extra gravitational stress and helps relieve symptoms. The most important aspect of our understanding of POTS is that symptoms can be dramatically improved by endurance exercise training. Patients with POTS will exercise and have an exaggerated sense of fatigue afterwards. First of all be reassured that is completely normal. Secondly, use that to adjust your exercise intensity so you can do this with common sense.

Final statement: It is very important that patients who have POTS understand that physicians have worked hard to learn more about this syndrome and that the medical community now has a major understanding of this problem. The most important facts to emerge from scientific study are that this problem is typically temporary, that it is not truly a disease state like the other autonomic abnormalities, and that it will definitely get better with exercise and attention to fluid status. For some patients, medications may be helpful during that reconditioning program.

Felix J. Rogers, D.O. June 9, 2009

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What’s New with POTS: 2009?

What’s New with POTS: 2009. Nearly half of the 20th Annual meeting of the American Autonomic Society was devoted to research presentations on the topic of postural orthostatic tachycardia syndrome (POTS).  This is clearly an area of active research and investigation.   One advantage of information like this is that it is the most current, cutting-edge research. The disadvantage is that these reports are based on small research studies typically involving just 10-20 patients.  That is a long way from presenting research information on hundreds or thousands of patients in which diagnostic or treatment approaches are studies thoroughly, with reliable accuracy. 

One thing that emerges from a series of research presentations on POTS is an understanding of how complicated this is, and how many aspects there are to this clinical condition.  The patients who have POTS should read through this material and determine if the subject at hand properly addresses considerations that are important to them.  This is not a situation where “one size fits all.”  

At the 2009 meeting of the AAS, there was one new emphasis.  POTS was defined as a condition in which the heart rate increases by more than 30 bpm when a person stands up, or when they are tilted up during a tilt table test.   In addition, they do not have a fall in their blood pressure which typically is associated with other people who have fainting spells.   The new area of emphasis was to make clear that the diagnosis of POTS is not made until the patient has been symptomatic for more than six months.   One implication of this is that changes of a fast heart rate on standing are normal responses to bed rest following an injury or illness or to deconditioning.    It doesn’t become the clinical entity of POTS until this has been present for at least six months.  

New Medical Treatments for POTS.    POTS is a medical condition in which there is an excessively fast heart rate when a person is standing upright.  It was always felt that drugs which would slow the heart rate would make this condition worse.  That is, if a fast heart was the body’s compensation to the stress of gravity, drugs that would slow the heart rate would drop the cardiac output (the amount of blood pumped by the heart) and the patient would feel worse.  

This issue was finally subjected to scientific study in a report published in 2009.   Contrary to popular belief, beta blocking agents slowed the heart rate of patients who have POTS and made a substantial contribution to an improvement in their symptoms.   Interestingly, the dose of the medication is much less than it is when beta blockers are used for the treatment of high blood pressure or hardening of the arteries.   The lowest possible dose of 20 mg of Propranolol was much better than the standard dose of 80 mg daily.  This research trial only looked at Propranolol (Inderal) which was the first beta blocker introduced.  Preliminary studies show that Carvedilol (Coreg), the most recently introduced beta blocker could have beneficial effects in POTS.  However, it has not been evaluated in a research trial to determine if it leads to an improvement in how patients feel.  

Since beta blockers slow the heart rate, another research trial was conducted to evaluate the benefit of Indomethacin.  This is a non-steroidal anti-inflammatory drug much like ibuprofen.   Besides reducing pain and inflammation, the most common effect of these medications is to cause retention of salt and fluid, and to cause an increase in blood pressure.  It would make sense that these medications could be beneficial for patients with POTS.  At the November meeting of the American Autonomic Society (AAS) research scientists reported on the benefit for Indomethacin for the treatment of patients with POTS.  Uniformly, they all experienced a major benefit in terms of their fast heart rates.  However, it was very disappointing that none of them felt any better. This helps to clarify that there is much more to the condition of POTS then just a fast heart rate! 

Anemia and POTS.  One of the theories about POTS is that it represents an exaggerated form of deconditioning.   That is described in other sections on this website.    According to this theory, patients who have POTS also have a smaller heart, and a lower cardiac output.   Recent research studies show additional features of POTS patients which may be related.  Patients with POTS also have a lower blood volume (that is, they have less blood in their bodies to be pumped around every minute).  In addition, they tend to have a slight decrease in their blood count.  Although this does not reach the threshold that they would be classified as having anemia, it does appear to be related to other medical features that contribute to the overall symptoms of these patients. 

In particular, adolescents who have POTS describe fatigue 75% of the time.  On careful testing, most of them have low levels of iron stores.  This may represent the first step toward the development of iron deficiency anemia.  The perplexing thing is that they don’t actually have anemia, they just have low levels of iron and ferritin, the compound that carries iron.   Whether iron supplementation would be of benefit is not known.  

POTS and the Menstrual Cycle.  More than 80% or 90% of people who have POTS are young women.  Many of them have reported changes in the severity of their symptoms depending on where they stand in their menstrual cycle.  Research now gives us some clues about this, but, like everything else here, it also opens the door to more questions.  

A scientific study was performed to test the severity of the heart rate and blood pressure changes in two phases of the menstrual cycle.  On days 1-4, levels of both estrogen and progesterone are low in a woman’s blood stream.  On days 19-20, both of these hormones are at their high level.  Estrogen is a hormone that dilates blood vessels, which would magnify heart rate responses upon standing.  On the other hand, progesterone is a hormone that tends to cause fluid retention.  This would increase blood volume and minimize the effects of standing.  The manifestation for each individual patient is probably based on the relative predominance of one hormone or the other in that specific individual.  This might be a useful topic for individual evaluation by young women with POTS.  As you learn more about your own individual responses to your life events, this could help explain some of the things you experience on a regular basis.  

Blood Pressure Regulation with POTS.  One of the characteristics of normal blood pressure regulation is that our blood pressure “dips” at night while we are sleeping.   This is true for more than 85% of the general population.  When people who have high blood pressure develop a form that is difficult to treat, their blood pressure no longer dips during sleep.  We describe these people by the scientific term “non-dippers.”  Remarkably, we discover that the majority of people with POTS are also “non-dipper.”   Paradoxically, it may be for the opposite reason.   More than 50% of individuals with POTS do not show a drop in their blood pressure during sleep.   Almost all of these people also have lower blood pressure when they first get up in the morning.   It may be that they do not show a dip in their blood pressure because they already start out at a lower level than otherwise normal people do.   These might be the type of individuals who would benefit more from efforts to increase their blood volume with lots of fluid, plenty of salt, and maybe even support stockings.   

Miscellaneous interesting facts. At the general session of the American Autonomic Society, one research scientist asked an open question of the audience.   In a room filled with people who specialize in the management of POTS, he asked if anyone found a treatment for their patients that was beneficial, besides this new information about beta blockers.   No one had anything to volunteer.  

Another scientist had an interesting observation:  when people have fainting spells under age 40, it is much more common in women.   Between the ages of 40 and 60, fainting spells are distinctly rare.   Over age 60, fainting spells are much more common in men.  Why these findings occur during these three phases of life is completely unknown.

Finally, several research presentations addressed the topic of how our body regulates blood flow in the brain.   Since patients with POTS do not have a drop in their blood pressure when they are upright, and, as a general rule, do not have fainting spells, why would they experience brain fog?  First of all let me say I am indebted to my younger patients to learn the two phrases “brain fog” and “head rush”.  Both of these are reported so frequently by young people that it is pretty clear that it is part of their normal vocabulary and, part of the description they use to report on their every day events.   Of course, individuals with POTS have many more instances of brain fog and head rushes then do the general population.   Difficulties in concentration are one of the characteristics of this condition. 

All of the research presentations at the 2009 meeting showed preliminary information.  The bottom line is that we don’t know how and why the body controls blood flow differently in patients who have POTS and in those with fainting spells.    It probably doesn’t represent much consolation to know that this is a topic of active scientific study, but one with little definite information.  

What’s New From The Autonomic Society, 2012

Master and Commander

The understanding of how the body controls heart rate and blood pressure has been based on our understanding that reflexes arise from the heart, are processed centrally, and then nerve fibers go to the heart and to the blood vessels. Utilizing the new technology of functional magnetic resonance imaging (fMRI), Vaughn Macefield, a scientist from Australia, reported on the central role that is played by the brain in blood pressure and heart rate control. Some of these features are long term and may explain the relationship between obesity and high blood pressure. Likewise, this research shows why some things may not be connected: why nerve fibers going to blood vessels in our muscles can be excited and at the same time, the nerves that go to the sweat glands in our skin are inhibited. Patients with heart failure, emphysema and obstructive sleep apnea have chronic increases in the nerve firing to the blood vessels in their muscles. The exciting consideration of this top-down control is that we might be able to learn ways to modify our physiology, according to the behavioral or cognitive (thinking) tasks. When people say “it is all in my head” they should say so with respect!

Genetic Causes of POTS

Many people are suspicious that there is a genetic predisposition that makes some people develop the clinical syndrome of postural orthostatic tachycardia syndrome and other people placed under the same stress or exposed to the same virus do not develop this. Research has recently focused on two genetic mutations, but without defining a clear cut answer. Information about activity in the sympathetic nerves is received by the beta 2 adrenergic receptor. Two areas that have been identified that are associated with mutations in this gene. One involves arginine on position 16 and glucose on position 27. Careful investigation of patients with one or more copies of these abnormal genes only shows a weak correlation. At the present time, it is fair to say that a genetic cause for POTS has not been defined.

Another concern involves whether there is direct injury to nerve fibers that can be associated with POTS. Two subtypes have been defined. In one case, a skin biopsy shows a decreased number of small nerve fibers. Patients with this condition are described as “neuropathic POTS.” Paradoxically, patients with neuropathologic POTS have less severe symptoms and less pronounced abnormalities of heart rate than do patients with non-neuropathic POTS. Likewise, a subtype called “cholinergic POTS” doesn’t seem to have any clinical significance. In these patients, abnormalities in sweat glands seem to have no correlation with the rest of their symptoms.

Kids with POTS- and Their Parents

The Mayo Clinic is engaged in a multi-disciplinary approach to taking care of children and adolescents who have POTS. They have found the greatest success occurs when they work with the parents as well. The starting point is that they look at people with POTS in the same terms as someone with chronic pain. After all, a lot of people who have POTS have pain as well, especially headache and abdominal pain. What they noticed at the Mayo Clinic was if parents attribute a higher level of pain to their children, children with chronic pain are more likely to have functional disability, more likely to be anxious and more likely to have depression. For kids with POTS, there is an increase in functional disability and anxiety but not depression.

But, the Mayo Clinic researchers agree POTS is more than just a relationship between a child and their parents. They have applied best practices to a multi-disciplinary approach. They have aimed it for that 10% or 20% of kids who have POTS which causes them to miss school or to withdraw from social and family activities. They have constructed a lifestyle model that focuses on exercise, nutrition, sleep, plenty of fluids and salt. The goal is to increase the functioning of the children, not so much to try to reduce their symptoms. In other words, they accept the fact that the best we can do is to reduce but not eliminate symptoms. On the other hand, if a person can be restored to being fully active, and take back their life in terms of everything they do, that is a worthwhile goal.

AAS, November 3, 2012.

Additional Resources, 2013

Research studies have been conducted to define effective types of exercise for patients who have POTS and orthostatic intolerance (OI). Because those are research studies, they often begin with testing that is not going to be performed if someone wants to start exercise on their own at home. The material that follows is adopted from the exercise program implemented by Dr. Benjamin D. Levine, M.D. at the University of Texas, Southwestern Medical Center in Dallas, Texas.   

The patients in Dr. Levine’s study underwent a treadmill exercise stress test to determine their peak exercise capacity before they began the training program. To begin training at home, the target heart rate can be estimated accurately by subtracting your age from 220. So, if you are 30 years of age, the maximum peak heart rate that you could achieve with exercise is estimated to be 190 bpm. For most of the training sessions, especially in the early phase, a base training pace would be a heart rate of 75% to 85% of this maximum predicted heart rate. So staying with our hypothetical 30 year old person, with a maximum predicted heart rate of 190 bpm, that person should exercise at a heart rate of about 140 to 160 bpm. You don’t need any fancy equipment. During exercise, just stop periodically and count your pulse rate for 15 seconds. Multiple that by four and you have your heart rate. Most people with POTS will have no difficulty in reaching this target. The main value of this is for people who are not actually working hard enough and this target heart rate tells them they can push themselves harder to get into that training range.

Initially, aim for exercise sessions that gradually will represent 30 to 45 minutes of exercise, 2, 3 or 4 times a week. Dr. Levine found that using a recumbent bike, rowing machine or swimming was a critical strategy. It allows patients to exercise while avoiding the upright posture that causes their symptoms.

As you become more physically fit, the duration of the base training period can be prolonged. Later, add sessions of increased intensity (for example, exercising so vigorously that you reach your maximal heart rate) first once and then twice per week. This always needs to be followed by a recovery session. Upright exercise can be added as tolerated, although usually not until the second or third month.

By the end of the training period, Dr. Levine’s patients were exercising 5-6 hours per week and they were encouraged to use an upright bicycle, to walk on the treadmill, or to jog. In addition to the endurance training, resistance training such as weight lifting was also used.

Weight lifting was started once weekly at 15 to 20 minutes per session and then gradually increased to twice weekly up to 30-40 minutes per session.  

Throughout, patients are encouraged to increase their daily salt intake to six to eight grams per day and the water intake to 3-4 liters per day. Elevating the head of the bed during sleeping at night also is beneficial.

In another publication, Dr. Levine commented that rowing was absolutely the best exercise. Not only does it involve a lot of muscle groups, while the patient is recumbent, but weight lifting causes a significant increase in blood pressure. The combination of high blood pressure and increased Exercise Training for the Treatment of Postural Orthostatic Tachycardia Syndrome (POTS) and Other Types of Orthostatic Intoleranceheart rate really helps the heart muscle to grow and respond to exercise. This seems to be the key to eliminating the symptoms of POTS.

Dr. Winter, in another publication, reported about endurance exercise training in members of the Austrian Army who had orthostatic intolerance. These were all men and their fitness levels were considerably higher. They did not have POTS but instead orthostatic intolerance in which they were at risk of fainting on the parade grounds. This affected 36 out of 2768 soldiers. With a regular jogging program 10 out of 16 patients were cured of their orthostatic intolerance. In contrast, the 11 patients who were randomized to control treatment (no exercise) showed no improvement except for one person.

Dr. Levine’s study was published in the Journal of the American College of Cardiology, June 22, 2010, volume 55, page 2858-68. He coined the term Grinch Heart, because the hearts of patients with POTS were smaller than those of unaffected people with the same body size.

Definative Report on POTS

 

Definitive report on POTS by Eduardo Bennaroch, Mayo Clinic Proceedings, Volume 87, Issue 12 , Pages 1214-1225, December 2012 Click Here

Pain and the Buddha

Thich Nhat Hanh is a Vietnamese Buddhist monk. The following is taken from his collection, “Your True Home: A Collection of Daily Readings.”

The Buddha speaks about the second arrow. When an arrow strikes you, you feel pain. If a second arrow comes and strikes you in the same spot, the pain will be 10 times worse. The Buddha advised that when you have some pain in your body, or your mind, breath in and out and recognize the significance of that pain but don’t exaggerate its importance. If you stop to worry, be fearful, protest, be angry about the pain, then you magnify your pain 10 times more. Your worry is the second arrow. You should protect yourself and not allow the second arrow to come, because the second arrow comes from you.

Thich Nhat Hanh refers to pain in its broadest sense including the pain experienced from some emotional event, something hurtful that has happened to us. It also applied to our physical pain. There are times when pain cannot be completely relieved. In these cases, we are advised “don’t exaggerate its importance.” That is easier said then done, but our lives would be better if we are able to do this.

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RESOURCES FOR PATIENTS

POTS - A Practice Philosophy

Autonomic Dysfunction - An Everyday Experience

Insight With POTS: Practical Application

Orthostatic Intolerance Severity Symptom Score

Orthostatic Hypotension Daily Activities Scale