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Richard N. Fogoros, M.D.

POTS - Who's The Real Grinch?

By March 5, 2012

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Recently,  a few readers with Postural Orthostatic Tachycardia Syndrome (POTS) brought to my attention an article that was published a couple of years ago in the Journal of the American College of Cardiology on POTS. They are disturbed by the article's conclusions, noting that  it is hard enough to live with this condition without well-meaning academics inventing insulting names for them, and inappropriately suggesting that POTS sufferers have brought the condition upon themselves.  They asked me to comment on it.

Read all about POTS.

The article comes from the lab of Dr. Benjamin D. Levine MD, from the University of Texas Southwestern Medical Center. Dr. Levine's group studied 27 patients with POTS who had been referred to his center. In this meticulously-conducted study, the chief findings were: 1) None of these patients had measurable abnormalities in their autonomic nervous system. 2) Many (about 70%) of the the patients with POTS had small hearts and low blood volume, findings characteristic of deconditioning. And 3) On average, patients with POTS responded very favorably to a prolonged, graded program of exercise therapy.

The authors concluded that POTS is "per se" a condition caused by deconditioning and not dysautonomia, and subsequently promoted in several major media outlets the new name they proposed in this peer-reviewed publication for this already-well-named condition, to wit: Grinch Syndrome (because grinches, according to definitive sources, have small hearts).

My correspondents who have POTS do not argue with the study's results, but strongly object to the conclusions which the authors derive from those results. In addition to the obvious desire of not wishing to be referred to as grinches, they point out that attributing all cases of POTS to deconditioning (which the authors explicitly do) is not only wrong, but likely harmful to POTS sufferers.

A small heart and low blood volume are characteristics of deconditioning. If you take healthy young people and put them at bed rest for a week or so (or astronauts and put them in weightless space for a similar period of time) they will become deconditioned. They will often develop reduced heart size and blood volume, and symptoms very similar to POTS. And they also improve with graded exercise.

It is undoubtedly true that the vast majority if not all people with significant POTS are deconditioned. You would become deconditioned too if you could not stand up without becoming extremely lightheaded, or passing out. And it is indeed this fact which this study confirmed.

But the fact that patients with POTS might be shown to have deconditioning does not prove (and in fact, it does not even strongly suggest) that deconditioning is the cause of POTS, rather than the result.

And while this study did not find signs of dysautonomia in its patients, it must be noted that it was conducted in a single tertiary referral center - which typically means that referral patterns have been filtered by time, tradition and experience,  and it certainly means that its patients were screened (twice) prior to referral. In addition, the study explicitly excluded patients who had a diagnosis of autonomic dysfunction. Furthermore, the authors themselves note in their discussion that numerous other studies from other institutions have documented significant autonomic dysfunction in patients with POTS - an observation which seems not to square with their conclusions. It seems quite apparent that the authors, probably inadvertently, studied a particular subset of the broad universe of patients with POTS.

Further, the study fails to account for (or even address) the fact that POTS, as is characteristic of all the dysautonomias, often occurs in active, athletic people, and often has a very sudden onset, without any preceding period of prolonged inaction (or any inaction at all) which could produce deconditioning.

Finally, the authors do not comment on the fact that, whereas people with typical deconditioning respond quite rapidly to a graded exercise program (most often improving markedly over a period of a few days), those with POTS - even the ones who end up with a very favorable response to exercise - tend to improve at a relatively glacial pace, over a period of weeks or months. Similarly, once recovered, patients with simple deconditioning do not deteriorate with normal daily living; in contrast, those with POTS who improve with exercise often relapse quickly if they discontinue their program of frequent (usually daily) aerobic exercise.

It seems far more likely from the available data (including the data presented in this otherwise excellent study) that the deconditioning seen in POTS is most often a secondary phenomenon that will naturally follow from having POTS, instead of the thing that caused the POTS in the first place.

So why is this distinction such a big deal?

It is because people who are diagnosed with POTS already have an extraordinarily difficult time getting their doctors and families to take their symptoms seriously. They often go through a prolonged ordeal of being told by several doctors that they have anxiety or depression or some sort of conversion reaction rather than a true, physiologic condition. It is often weeks or months, and occasionally years, before some physician finally figures out the true diagnosis.

And now, even after the correct diagnosis is made, they face the prospect of being regarded as having brought the condition on themselves, due to "deconditioning," which is often medical talk for being too sedentary, passive, and lazy. And when their family is told that the problem is self-induced, via the mechanism of sloth, and is told this by a doctor no less, the amount of support POTS sufferers are likely to receive from loved ones, at the very time they are fighting to recover and are most in need of it, will predictably diminish.

And hence, the conclusion that POTS is caused by deconditioning is not only unsupported by the results of this study, but is also likely to be harmful to people who have POTS.  I have to agree with my correspondents that the authors indeed seem to have done their patients a disservice.

So who's really the grinch here?

Sources:

Fu Q, VanGundy TB, Galbreath M, et al. Cardiac origins of the postural orthostatic tachycardia syndrome. JACC 2010;55:2858-68.


Comments
March 5, 2012 at 9:51 am
(1) Wendy says:

My daughter was a healthy teenager playing a high level of hockey and exercising on a daily basis when she developed POTS shortly after a surgical procedure. I know she didn’t develop POTS as a result of being inactive and it surprises me that any research would draw that conclusion. Thank you for clarifying Dr. Levin’s findings and I hope that he will take some time to read this article and realize how he should have interpreted his data.

March 5, 2012 at 11:16 am
(2) Buffy Williams says:

I can’t thank you enough for this piece! POTS tore my life apart 3 years ago after a viral illness, when I was an incredibly active college senior. Since then, I feel that Levine’s study has done nothing but discredit me and the rest of the POTS community, especially since the media has chosen to shout his “findings” from the rooftops. I cannot convey how refreshing and helpful it is to hear from the medical community in rebuttal to his study!

March 5, 2012 at 11:22 am
(3) jennifer says:

I was a very healthy active 32 year old woman when I started showing symptoms of POTS during Pregnancy. I was extremly dissapointed by the recent coverage presented by the media. It takes some of us many years to find the right MD to diagnose our condition, that is why I feel some of us may show some sort of deconditioning…its not the cause…it’s the effect from POTS. It baffles me to see all of this taken out of context. Thank you for writing this above article

March 5, 2012 at 11:54 am
(4) Rachel says:

Thank you for your article. I have POTS as well and am an exercise physiologist. I ran college cross country despite pots and was told that when my symptoms worsened it as because I was deconditioned. I was one of the “deconditioned” study participants. The exersice program helped a little becuase it allowed me to slow down and rebuild my base. Thank you for looking into the data and not only the conclusion. It is much appreciated.

March 5, 2012 at 11:55 am
(5) Kim says:

I would hug you right now if I could. Thank you for bringing the correct info to the table. My teen daughter was definitely not de-conditioned prior to the onset of POTS. It took her down like a ton of bricks. She was an avid dancer, played softball & baseball. 4-6 days of the week were sports related & 1 day was girl scouts, and she attended school EVERY DAY. It has been 3 years & she is very symptomatic & has not been able to go to school for a full week, let alone try to play a sport. While she was highly athletic, she would started having bouts of chest pain, & then the rest of the symptoms came from there.

If only a news channel would report this right, I would be forever grateful. It is bad enough that these teens are not in school full time with their peers, now they see a story like the “grinch” story, and now they are seriously doubted. Shame on them & kudos to you.

Signed a MOMMY WARRIOR.

March 5, 2012 at 12:04 pm
(6) Yet another mommy warrior says:

My daughter began fainting at the age of 11 about 5-6 times a day. She was a competitive dancer, socially active, and had almost perfect attendance at school prior to this illness. It took us three years to find what was wrong with her. She was told many many times it was psychological. Thank God for Dr. Blaire Grubb at UTMC. He diagnosed my daughter with EDS which is causing the autonomic disorder of POTS. There are many POTS sufferers who have enough trouble getting a proper diagnosis and being taken seriously, they do not need the “grinch syndrome” theory added to the list. Hoping this study by Dr. Levine is not looked upon as valid by others in the medical profession.

March 5, 2012 at 12:07 pm
(7) Lauren says:

Dr. Fogoros,

Thank you for this very informative and well written article. My POTS symptoms came on abruptly during a time when I was very healthy and athletic. I went from snowboarding all week to bedridden and unable to stand up without fainting in less than 24 hours. My doctors, from one of the best autonomic labs in the country, have determined that I have POTS as a result of an autoimmune disease. I do not have a small heart. My cardiac MRI showed the opposite – a slightly enlarged left ventricle.

Exercise is a part of my treatment strategy, but by no means is a lack of exercise or deconditioning the cause of my POTS, nor will exercise ever cure my POTS. I wish it were that simple, but it’s not.

Thanks for putting this research in perspective.

March 5, 2012 at 12:32 pm
(8) Kristy Smith says:

Thank you so much!!!!!!!! I was a gymnast, cheerleader, tennis player and did martial arts. I still fight to exercise but have daily so much fatigue, and even though I can make it to know where I do not completely black out while standing my heart rate still doubles from sitting to standing. You article is MUCH appreciated.

March 5, 2012 at 12:43 pm
(9) Nicole Tomaschik says:

Dr. Fogoros,

First and foremost, thank you. I too was very healthy and active when my symptoms came on. I was a senior in high school-involved in softball, dance company and horseback riding. This theory is ridiculous and quite frankly insulting. Particularly when there are a host of other symptoms that often accompany POTS patients. To list a few:small fiber neuropathy, increase/decrease in sweating, visual disturbances etc. This is dysautonomia at it’s best or worst:( Clearly it isn’t just cardiac in nature-definitely not soley from a structurally “small” heart! It is a SECONDARY response to a more global, SYSTEMIC problem.

Much thanks and gratitude.

March 5, 2012 at 1:24 pm
(10) Kim says:

I literally cried the entire way through this article. FINALLY SOMEONE SUPPORTS US! For too long we’ve been shoved aside by doctors who don’t know how to handle us. The “grinch” label was extremely crippling for those of us just struggling to have our voices heard in the medical community. I was in fantastic shape prior to developing POTS….exercising frequently, running 5ks, keeping up with my toddler, etc. Exercising helped to “recondition” me after I spent a year getting bounced around doctor’s offices, tests, and days where I could only manage to crawl across the floor and not walk. But exercise hasn’t cured me simply because that wasn’t the cause to begin with. God Bless you for being a voice of support in our corner!

March 5, 2012 at 1:37 pm
(11) Jennifer says:

Thank you!!!! I wish articles like this would get more media attention! I have POTS and it is so frustrating when people think that all you have to do is exercise and you will be healed. All of my test results show that my hr and oxygen doesn’t respond right to exercise so it would be extremely difficult and possibly unsafe for me to do an exercise program like Dr. Levine’s. I still believe exercise is great for keeping my leg muscles built up to prevent blood pooling, but it is by no means a cure and it is so frustrating when people get the idea that it is. I appreciate this article so much!!!

March 5, 2012 at 1:45 pm
(12) Annie says:

I was an active 43 year old when POTS hit. At the time, I was working out at a gym 2-3 per week, and a very busy mother of three. After this happened, I kept pushing myself to be active, but I just got worse. Now it’s a struggle to bike 10 minutes twice per week. I totally agree with the conclusion that POTS leads to deconditioning and not vice versa. Thanks for pointing this out.

March 5, 2012 at 2:09 pm
(13) Claire says:

THANK YOU! This is an amazing summation of why this term must go away. I am one of the many who have POTS but do not have a small heart , and even if I did – the term GRINCH is insulting and unscientific.

Thank you again for this wonderful article!
Claire

March 5, 2012 at 2:49 pm
(14) Kimberly Johnston-Jennings says:

Thank you for this article. My POTS symptoms started right before turning 40. I was addicted to exercise, work and full of energy. After, my symptoms started my energy started to decrease.

March 5, 2012 at 2:49 pm
(15) April says:

Well said! Bravo!!

March 5, 2012 at 3:21 pm
(16) Sallie says:

THANK You so much my Son was never deconditiodned infact so fit he was deemed as fit as Bjorn Borg he was Motocross racer who suddenly had his active life cut short. He could not even get upstairs for a year because when he stood his pulse rate went from a very fit 45 bpm resting to 120 -150 bpm standing. He was house bound for a year and consequently became very depressed. He has exercised with a recumbent bike as soon as we were aware it might help but it has not cured!!! him. He is lucky to have parents that understand and don’t treat him the way that Doctors and friends do. No-one seems to understand this devasting illness apart from a few true parents and the people that have this life sapping disease. Even the experts have no idea how truly debilitating this illness is. Unless you live with a person 24/7 you will and could never understand their pain!!!

March 5, 2012 at 3:24 pm
(17) Philly Mom says:

This is wonderful, thank you! There is such a lack of information or wrong information about this difficult condition. As all the other comments before me, I was a very active mom of four when this hit me at the age of 48. Also, my 15 yr old daughter was diagnosed and she was an active teenager, captain of her lacrosse team. I related to the comments about exercise helping out (keeps symptoms less severe) but that symptoms worsen if I do not exercise aerobically daily. Clearly the study was flawed and its conclusions have damaged our ability to get good treatment and support by clouding the issue.

March 5, 2012 at 3:47 pm
(18) Autumn Austin says:

Thank you so much for bringing a voice to those of us who struggle with POTS and Dysautonomia. I too, was offended by Dr. Levines small study. I will be printing this up to pass out to my family, friends and any other naysayers. You have done a great service to all of us who struggle with this life changing and debilitating disorder. With sincere appreciation, A. Austin

March 5, 2012 at 4:38 pm
(19) Coppelia says:

Thank you for speaking up for POTS patients! We really appreciate you taking the time to help us right a wrong!

March 5, 2012 at 5:25 pm
(20) Chicago chia says:

Oh thank you for supplying us with the name of the doctor who is still in the dark ages about this condition. How do these papers get published without any one checking their virility? Maybe he should be put in a room with the head cardiologist in Children’s memorial hospital who still thinks gateraide will cure NCS/ dysautonomia . Yes put them both in a room with all those that have commented here. What a disaster their nonsense can do to real lives!

March 5, 2012 at 5:30 pm
(21) Soraya says:

Thank you so very much for writing this article. It is long past time doctors started speaking up against the faulty claims made by Dr Levine and his team.

You have done POTS patients a great service by writing this article. I am grateful.

Thank you.

March 5, 2012 at 5:47 pm
(22) Kate Hadden says:

Prior to my health deteriorating due to POTS, I cycled 15 miles to work and back daily, did yoga and held down a very stressful full time job in funding for young people with special needs. My diet was, and is, exceptional; I avoid processed and simple sugars preferring to cook from scratch.
I was told repeatedly by the medical profession I was simply depressed (wouldn‘t anyone be when making it through the day was a MASSIVE physical and mental challenge). It took a hospital stay due to tachycardia and pericarditis plus research on my part to eventually get a diagnosis.
It is ironic when reading this article that my doctors told me to stop exercising so much prior to being diagnosed.
I truly believe that exercise, tailored to sufferers‘ needs, is beneficial as it is for anyone healthy or not. I still practice yoga daily and use an exercise bike every few days. To state an individual brought about this syndrome through lack of exercise is nonsense. If this were the case, most of the people I know would be inflicted whereas I would be just dandy. In fact I would go as far as to say there would be an epidemic and the condition would therefore be taken seeriously!

March 5, 2012 at 5:51 pm
(23) Barbara I says:

Thank you so much for this article. My cardiologist tried to tell me that my POTS was a result of deconditioning based on this very study. The nurse practitioner who diagnosed me worked with Dr Levine, and she said that patients who had comorbid autoimmune disorders were vastly different than people who are simply deconditioned. I have several autoimmune diseases and CFS/ME. The CFS/ME makes graded exercise programs inadvisable, as exercise makes me worse. What’s even more interesting is that my heart is in the normal size range, but it appears I have cardiomyopathy in the diastolic phase, as Dr Paul Cheney observed in many of his patients. This is neurological, and perhaps even cardiac in my case. It isn’t in my head, or anyone else’s. It’s nice to see someone defend people like me. Thanks again.

March 5, 2012 at 5:56 pm
(24) Krissy says:

Thank you so much Dr. Forgos for this well written article. Like many others, I was in the best shape of my life. I was an avid skater that competed on a national level; as well as played soccer for a local league. I easily trained/practiced 3-5 hours a day, sometimes more, depending on my schedule. I went from never sitting down to bedridden overnight. Obviously no deconditioning here. And I also have plenty of EKG’s over the last decade to prove my heart is of normal size. Dysautonomia (EDS & NCS & Epstein Barr) is the cause of my POTS. What Levine has done is a huge disservice to us all. He only includes those who fit his small heart theory in his studies and exclude those of us who have conditions such as Neurocardiogenic Syncope, Ehlers Danlos, Sjorgens, Mast Cell Activation Disorder etc. Once again thank you for your acknowledgement of this and a wonderful article!

March 5, 2012 at 5:59 pm
(25) Geral says:

Well written. Clearly there are abnormalities beyond deconditioning. Exercise might improve the condition for a variety of reasons that do not necessarily lead to a conclusion that deconditioning is the primary problem

March 5, 2012 at 6:41 pm
(26) Candace says:

Thank you so much for posting this. Very well written. The day before I developed POTS I could figure skate. The day I developed pots was from a procedure I had done. I know it wasn’t from deconditioning because I was extremely active, now im lucky if I can stand longer than 5 minutes. Dr.Levine makes it sound like if we work out we will get better. That is far from the case. The more I move the sicker I become. I cant thank you enough for writing this so more people can become aware.

March 5, 2012 at 7:28 pm
(27) Tonya Marie York says:

I want to thank ou so much Dr. Fogoros for writing this article, I too was an active adolescent before POTS took charge and ruined it all for me I was diagnosed wiht Ehlers Danlos at age 12, but had been going to karate classes everyday, besides Sunday and two days a week I doubled up and doing two classes a day, I also did tournaments on the weekends when they were held, was going to school and volunteering/fundraising and was very active, stoppd karate soon after being diagnsoed ith EDS, but was stll very active and then one day I got sick and never got better, I was diagnsoed with chronic fatigue syndrome and other conditions that are brought on by EDS, I started to have syncopl episodes around age 14, but the doctor jsut told me not to worry since it wasn’t ruling my lfe and usually felt t come on and could sit down, but somethng was still wrong and no one could find out what, finally at age 18 I was finally diagnosed with POTS whle inpatent in the hospital after my doctor called 911 because I was highly symptomatic and it took them a lot of testing and takng a lot of medical history to conclude it was POTS. At this time I had been taking care of my four year old nepehw, I had gotten less active as my symptoms got wors,e but when it first started I was very active. I also have a normal size heart! It disturbs me that doctors can do studies and exclude participates because they don’t fit nto a specific category, I am so glad you have cleared this up! I sincerly thank you!

Tonya

March 5, 2012 at 7:55 pm
(28) Susan R says:

Thank you SO much for writing this. It’s refreshing and encouraging to see that someone actually ‘gets it’.

March 5, 2012 at 8:07 pm
(29) Stephanie says:

Thank you so much for responding to the obvious shortcomings in the article. While the methods may have been scientifically correct, the assumptions made to draw conclusions are questionable at best. POTS as you noted causes deconditioning at a very rapid pace. Before becoming ill I ran cross-country, played basketball, softball, and trained and ran a half marathon. The study not only was blatantly incorrect in assuming that POTS and Dysautonomia are related, but also failed to look at the other causes of POTS, in which POTS is secondary to a general medical conditions such as diabetes or in my case Ehlers-Danlos Syndrome. To say that POTS is simple the result of deconditioning, is to attempt to get published at the cost of science and research by ignoring other possible causes and excluding participants with the condition you are excluding (dysautonomia) from the study. Perhaps the peer-review process at the Journal of the American College of Cardiology needs to be examined more closely. As a POTS patient, I thank you for being willing to point out the obvious shortcomings of this research.

March 5, 2012 at 9:11 pm
(30) Jeff Grigsby says:

I want to thank you also. Over a period of a couple years I began having chest pain, dizziness and exhaustion. Then after a quick flu I took a quick downturn. I had great difficulty standing, walking. I missed two months of work and when I got back to work (which many don’t) I could barely function and once had to be taken away from work via ambulance because I could not get my tachycardia under control. There is still no real diagnosis since POTS is simply a syndrome, but to have someone turn this syndrome into a lazy man’s disease is maddening. Yes, daily exercise has helped, but I dread the day I have to stop because of illness or injury. We fight so hard to try and get diagnosis which rarely comes and we fight just as hard to be useful people in our families and communities. We fight too hard to be marginalized as grinches and lazybones. Thank you, Dr Fogoros.

March 5, 2012 at 9:57 pm
(31) JS says:

Thanks for the clarification. I was healthy/active and had a sudden onset of POTS as you describe. It pains me to see it being described as deconditioning and “Grinch syndrome”. I was working out 5x/week when I got sick. I don’t think I ever became deconditioned, but after developing POTS, exercise sent my heart into a frenzy. Getting on the right meds (including SSRIs, by the way) and gradually re-introducing exercise did help me to improve. Dr. Levine’s exercise program would have been way too agressive for me, but through hard work I found my way back to an almost “normal” life. I am thankful for anyone who is researching POTS, but wish some of this research was being done in a more sensitive and honest manner.

March 5, 2012 at 10:23 pm
(32) Gena says:

As a person suffering with Neurocardiogenic Syncope/Neurally Mediated Hypotension and POTS, I want to express my gratitude for your article that debunks the “Grinch Syndrome” theory. I became ill in my late twenties, during the “prime” of my life. Prior to becoming so ill, I was highly energetic and very active. This condition has severely impacted my life, and I am thankful for an article based on facts and accurate research.

March 5, 2012 at 10:44 pm
(33) Amy says says:

More like over conditioned. If anything!!!

March 6, 2012 at 12:35 am
(34) Linda D says:

THANK YOU for writing this article!!! My daughter has been sick with POTS for 7 years now. She was a cross country runner when all of a sudden one day ‘POTS’ appeared with no warning. Most People who have POTS are over achievers and are very intelligent. It took 2 and a half years of testing and probing until my daughter was properly diagnosed. Many doctors would assume since tests would show negative results that she was looking for attention or that she was depressed. Frustrating to say the least!! Maybe through this negative ‘study’ of Dr. Levine, the medical community will take notice and seek information to help POTS patients!

March 6, 2012 at 1:15 am
(35) Jane Smith says:

THANK YOU from the bottom of my normal size heart.

March 6, 2012 at 1:40 am
(36) Moment warrior #3 says:

POTS is relentless, devastating and the worst thing anyone should have to endure. I have fought this battle for & with my daughter for @ least 4 years. We saw levine and got nothing but i.sults, and believe me, thats the understatement of the millennium. Dr. julian stewart gave my daughter her life back.

The CDC applauds dr stewart and NYU for their reseacrch. Levine needs to learn from stewart, learn “bedside” manor and find a neww career. perhaps a prisin guard…doesnt matter how rude, egotistical and mean you are. JS!

March 6, 2012 at 2:11 am
(37) Barbara says:

Thank you so much for writing this article. I have POTS & I got mine from a car accident. I was in great shape. Worked more than fulltime, went to the gym 3 times a week. Love to water ski, snow ski, white water rafting I was very active. My heart is normal size and very healthy thank God because POTS sure doesn’t give it a break. From the bottom of my normal size POTSy heart I thank you for giving us a voice!!!

March 6, 2012 at 4:20 am
(38) Anon says:

I was a very active swimmer, very fit yet still suffered mild symptoms of POTS my whole life. Many years later I became so ill with it I thought I would die, I could barely breathe, was half-conscious with numerous frightening and bewildering symptom for so many months with no help from Dr’s apart from being told to rest by one and exercise by another!

Turns out I have EDS type 3 which caused my POTS. I find most Dr’s who knows nothing of POTS or any other illness for that matter tend to fob people off with you’re depressed or anxious simply because they cannot admit they aren’t knowledgeable enough to know what the condition is.

I mostly depend on others to help me with everything, however, I still have a full life from my bed with many projects on the go, have never been depressed and am always trying to improve by doing weekly pilates (for ten mins!) and gently trying to do things which almost always make me feel worse anyway. Even when I managed to get my fitness up to being able to go up and down stairs several times a day, I hit my glass ceiling and couldn’t get any better, then I caught virus after virus and had to start all over again, it’s a never ending ‘getting nowhere’ frustrating cycle.

March 6, 2012 at 4:23 am
(39) Anon says:

P.S I fear this is going down the same road as those with M.E forced to do graded exercise which is known to be harmful and can even be fatal to them. WE must not let this happen to those with POTS too.

March 6, 2012 at 11:10 am
(40) Dixie J. says:

Thank you for clearing all the misconception of the Grinch Syndrome. Two years go I was a very active 47 year old when one morning I awoke to Pots. I use to walk my treadmill at home, my stair stepper at work on my breaks and go out dancing with my girlfriends at least every weekend. I was a mere 118 lbs and in fantastic shape for my age. My Pots was NOT due to deconditioning! For me, my tachycardia is very irractic and causes my blood pressure to do the same if I stand, walk or encounter any physical activity.

March 6, 2012 at 11:12 am
(41) Mimi says:

I am very interested in seeing the actual research article that is being referred to here. Anyone?

March 6, 2012 at 12:22 pm
(42) Amy Krakower says:

I understand that it’s pretty exciting for a doctor to get published in a scientific journal. When I was put onto the tilt table test in 2008 by Dr. Thomas Ahern (bless that man), my heart rate went from 87 beats per and jumped almost 100 beats per minute after a few minutes. While being strapped to a bed is something more appropriate for a Saturday night (too soon?), the test confirmed what I already knew in my normal-sized heart – that something had been terribly wrong for a long time. The problem with Levine’s study is that it’s comparing people who are de-conditioned, to people who have autonomic dysfunction. Autonomic dysfunction causes de-conditioning. So when a group of de-conditioned people get better due to exercise, this is a totally acceptable finding. But when that finding is applied to people who are sick for reasons other than a lack of exercise, this is where the “scientific method” becomes muddied. I have POTS because of Ehlers Danlos Type 3. While I can put my legs behind my head (also good for Saturday nights), the hyper-mobility causes my blood vessels not to constrict efficiently. The combination of the EDS and mono when I was 17 caused my POTS. I became incredibly ill during my first year of law school. I wasn’t a lazy slob with a small heart. While Levine probably wanted a memorable name to match his pet project, I’m not sure that he thought about how many lives he negatively affected in the process of getting his 15 minutes of fame. Yes, exercise helps – but lack of it does not cause the problem.

March 6, 2012 at 12:54 pm
(43) A Levine Believer says:

Although everyone has valid comments about their or their loved one’s condition, I would like to remind you that just because YOU do not feel this way, some do. There is not one right answer to POTS and even if you do not agree with Levine’s findings, it does not mean that it is WRONG. I developed POTS following a basketball induced hamstring tear that went undiagnosed for nine months. I have been participating in the exercise protocol developed by Dr. Levine. This program has saved my life. Without it, I would never have been able to enroll and complete my first year of college. Exercise, for me, was absolutely the answer to my problem. I have not been cured, but my symptoms have decreased IMMENSELY. And it most certainly is not fatal.

March 6, 2012 at 3:08 pm
(44) Isabelle says:

I am a long distance runner who has has my life made much more difficult by POTS. It is clearly not a case of deconditioning. Thankfully, people like R Fogoros see this. I am quite certain that should I have acquired the POTS prior to running, I would never have attempted to start running. As it is, I am faced with a challenge each time I try and run, being at risk of arrythmias and dizzyness every time and having to drink vast amounts of water to stop even the slightest drop in hydration. That said, I would rather exercise than not, as I don’t want to get deconditioned, and I know how hard it is to start again, even after stopping for a few days -the heart seems to shut down and the arrythmias come on all the more. I have given up on people wondering why sometimes I am so slow. Let them think I am unfit. I know when I have achieved a good run/walk and have learnt to value myself for what I can do, as no-one else will! That is something POTs has taught me.

March 6, 2012 at 5:21 pm
(45) Krista D. says:

Thank you for the well written article. I am a POTS/NCS sufferer and am so happy to see people who advocate for us. I am a very busy mother to 5 young daughters with no family in this state to help out. My life is anything but sedentary, but yet I have this.

March 6, 2012 at 5:41 pm
(46) A Happy Grinch says:

I also saw Dr. Levine and I have to say my experience was very different that some reported here. He was the best doctor I have ever seen. I was incapacitated for more than 2 years, and saw every expert in the country about my POTS. I was thrown medication after medication with side effect after side effect, and little understanding — only garbage words like “dysautonomia”. When I saw Dr. Levine, he had obviously read all my hundreds of pages of medical records meticulously, and spent more than 2 hours with me trying to REALLY understand what I was feeling and what had happened to me. He was pretty pointed with his questions, especially when I got off track, but it was clear that he cared about finding the truth. When he explained why he uses the term “Grinch Syndrome” — because the Grinch had a heart that was two sizes too small, I smiled for the first time in many months. He had a plan, and offerred me back-up medication if I wanted. He asked me how badly I wanted to get better. Then he and his team gave me my life back. I am now out of my wheel chair, back to work, and back to play, and I too was a competitive athlete before I got sick. I am not offended at all — just glad that someone is trying to understand this disease and make us feel better. I think sometimes people are a bit too quick to take offense — no one is saying you are lazy!! Only that you have a medical problem that is compounded by deconditioning. Call me whatever you want — but you can also call me better and happy!!!

March 6, 2012 at 6:55 pm
(47) Susan Korstrom says:

It’s been 12 years since my first symptoms dramatically showed up – enough to be diagnosed with MS for 8 years of the 12. People were very understanding and supportive with the MS diagnosis but when I was rediagnosed in 2008, my GP said ” they put acronyms to every medical issue these days, I wouldn’t take stock in it” and then my ability to get help ceased. My new GP struggles with getting specialist appntments because I have no real incidences of “serious” nature. Finally it was our Rehfit Center in Wpg,MB who acknowledged my existance of POTS and will help me to get a cardiology referral and set me on a proper excersise program. The stress test they did dramatically showed me how hard my heart works every minute of everyday for every little movement I make. I have developed glaucoma from low blood pressure and endless stomach difficulties. It finally feels like a huge burden has been lifted to just be validated with my illness. I work, I play, I excercise – but damn I’m tired!!

March 7, 2012 at 7:22 am
(48) A Physician with POTS says:

I am a 31 year old resident at a prestigious Northeastern medical center — I am still a resident because I was too sick with POTS to finish on time. I couldn’t go on rounds without a wheelchair, and couldn’t even stand in a patient’s room. I just want to comment on a strange thread that runs through your blog, and a few of the comments. You all should realize that Dr. Levine is one of the most renowned cardiovascular physiologists in the world today. He has published nearly 200 papers in the medical literature, most on different aspects of physiology, with many of them focusing on blood control, orthostatic tolerance, and how the heart responds to bedrest, aging, and exercise training. We are VERY fortunate to have him turn his attention to POTS, which is by no means the main thrust of his work. To think that he would “promote” this work in the media is ridiculous, and naive about how both the media and medical publishing work. He came to give Grand Rounds at my institution and he only mentioned POTS and “The Grinch Syndrome” in the lasta 5 minutes of his talk. He was compelling, humourous, respectful and obviously has a love and compassion for his field and his patients. After he gave this talk, I convinced my own doctor to get me on the registry and after 4 months I was back at work, and I had been disabled for 1 year and a half!. This approach gave me my life back. I am not insulted at all by his approach or use of the term, and am SO grateful that there are new approaches to our medical problem that can actually help us get better.

March 7, 2012 at 7:58 am
(49) Another Levine Champion says:

I have to add my voice to the growing list of supporters of Dr. Levine and his efforts to help patients with POTS. I also had a wonderful experience with his office and everyone, from the office staff to the nurse practitioner, to the exercise physiologist (shout out to Tiffany!) to Dr. Levine himself was wonderful to me and my mom. We waited a long time for our appointment (but less than Mayo :) ) and were very anxious about the visit. I agree he was pretty intense in his questioning, but he was well prepared, never looked at his watch, spent hours trying to find the root of the problem, doing focused (but not excessive or unnecessary) testing, and then drawing pictures and giving me a biology lesson. I have been to LOTS of doctors, and none gave me the undivided attention I got from Dr. Levine and his team. The proof of the validity of this approach FOR ME is in the pudding — I went from being home schooled and unable to go out with my friends, to being nomminated for home coming queen. I am looking forward to going away to college, when at this time last year, I had no hope. I don’t know much about medical research, but I am really glad that experts like Dr. Levine and Dr. Fu (the young neurologist who is an expert in women’s health and works with Dr. Levine in his research — she deserves a lot of credit too!) are working to make us better.

March 8, 2012 at 1:52 pm
(50) martiz says:

I am surprised that such a small study with such exclusions would have been published. Surprised that current POTS docs haven’t addressed this sooner. Thank you, Dr. F. for having the courage to do so.

I have been very disgusted at the Grinch label. While also dealing with ME – Myalgic Encephalomyelitis which is labeled Chronic Fatigue Syndrome, the name makes a difference. So much research has been diverted from the underlying issues of ME to come up with harmful treatments (Graded Exercise and Cognitive Behavior Therapy) due to a vague and non-scientific name.

To have a Medical professional attempt to do the same thing – renaming a medical condition with a cutesy but disrespectful word-image is unfortunate and unfair.

I can see why the media is grabbing onto this – it’s catchy even though is it not true for all POTS patients.

Most POTS patients were Type A people, very active. I was working two jobs, single mom, catamaran sailor on weekends, gym bunny, swimmer when a viral illness change my life.

March 8, 2012 at 5:13 pm
(51) Jem says:

Thank you for writing this, PLEASE send it to ABC! Other viewpoints need to be heard, it seems only one theory gets media attention. I think why so many people are upset with Dr. Levine is because though his small study yielded results for some people, it cannot be generalized to all, yet for some reason, in the media, it’s being presented as widespread fact. It’s not that his study shouldn’t be shared, it’s the way the info is being presented, seemingly disregarding all other widely accepted POTS knowledge. Now that may not be Dr. Levine’s fault, but it doesn’t seem like there’s been any corrections/attempts to show this is just one team’s theory/research.

The patients who have been helped by this want people to understand that it worked for them, similarly, they have to realize the large group of people who aren’t part of the sub-set this protocol works for. We are desperate for help/a cure. It’s great if you’re one of the lucky people it works for, but promotion of that treatment shouldn’t be at the expense of the rest of the POTS community. When the media makes it seems like POTS is “cured” by exercise, whether intentional or not, it greatly hurts the rest of us. No one is going to fund more research for a condition that is so easily “cured”. Also, for POTS patients who already have a hard time getting people to understand their illness, misleading media that only focuses on this one theory/study, and not the variety of POTS causes/prognoses, only makes others further doubt POTS patients.

Other doctors would LOVE to give their patients a “cure”, and many have actually signed up their patients for his WorldWidePOTSRegistry. Unfortunately, it doesn’t work for everyone. I’d find his team more responsible, if they clearly described theirs is just one of the many theories/treatments for POTS that may/may not work for people.

March 10, 2012 at 11:13 pm
(52) Denae says:

Thank you so much for speaking up about Pots.. I was Always on the go, & I Walked everywere.. but I cant anymore due to this illnesses…I have come a long way.. and through it I have lost so called friends, & family.. that is due to their ignorance.. this is real..& debilitating.. we must come togethe, speak out.. and never stop fighting.. I pray everyday for my fellow F.W.Pots__ I know one day they will find a cure for us.. but they need education.. I do my best, every time I go to my doctor’s.. as it is very hard.. But, I’m determined… as we all are… To spread awareness!! God Bless You All…

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March 13, 2012 at 11:58 pm
(54) cr says:

I, too, am a young female hockey player. I began having POTS symptoms over the past year while I was running t, I three times a week. The exercise (at least over a short period of time) seemed to exacerbate symptoms greatly and exercise that I used to tolerate easily, I was no longer tolerating. A week after starting a beta-blocker, I was again able to tolerate exercise to a more full extent. While fighting deconditioning may help symptoms and while deconditioning may be correlated, it does not mean it is the cause of those symptoms

March 17, 2012 at 4:28 pm
(55) Linda says:

Thank you so much for your defense of POTS patients. I, like many others here, was very active when POTS “hit” me. I was walking five miles a day, doing Tae Bo six days a week, lifting weights, bicycling and just starting the Yoga ball. I worked sixty hours a week and cared for my own home and family. I ate healthily, as well. Then, after having my gallbladder out then experiencing a very bad flu bug that landed me in the ER, I just couldn’t recover. I was tested on a tilt table and, within 7 minuted, my bp dropped to 26/14. I was layed up for months. Through exercise, lots of salt and Gatorade, by the end of the summer that year, I was back to walking and working, yet, by March of the following year, I just couldn’t do it anymore. POTS had me. I’ve never been a slacker, and for Dr. Levine to say that we all just need to get off our duffs and exercise, is cruel and verges on medical abuse. Because of doctors’ opinions like his, millions of truly sick people continue to suffer. What a travesty in a country that is supposed to be so advanced medically. As a POTS patients, I’ve seen where we’ve really not come all that far in so many ways. Sad.

March 19, 2012 at 3:12 pm
(56) Cameron says:

I currently have POTS and I can tell you that I do not have this because of deconditioning! Before I had this I was playing soccer for 3 hours a day 6-7 days a week!

April 16, 2012 at 12:04 pm
(57) Shea says:

I cannot believe this!!!!! I was a dancer of all sorts( ballet jazz etc) from the time I was very young. I also live in Colorado so I loved hiking etc. I was extremely trim, fit, and absolutely healthy!!!! I was diagnosed with POTS in April 2011 and I imagine I have a lot of deconditioning from my lack of activity. I can’t even grocery shop by myself anymore. I’m 25 and spend the bulk of my time in a wheel chair when I’m out and about! For someone to draw these conclusions is very hurtful. It is for reasons such as these that people who suffer greatly from this syndrome have such difficulty getting proper treatment, support, and in my case much needed ssdi since I can’t even clean my home let alone work!!!!!!!!

April 25, 2012 at 7:39 am
(58) Notallwhowander says:

I was extremely active before I got sick overnight. I played soccer for 15 years (winning many awards and the opportunity to play with a US team all around the world), basketball for around 11 years (most of the time I would do double duty and play on 2-3 teams at the same time), I played softball for 6 years but wasn’t much of a fan, I got into collegient wrestling and proceeded to place 2nd in my state and at nationals. My coach wanted to train me for the US Olympic team. I also played many many other sports (and succeeded) before I got ill.

One day in April of 2009 my arms started hurting badly while we were driving down the road. Bad enough we had to pull over for the night. (mind you, I never took a break when I got any type of injury in any of my sports…I had no idea people took breaks when they strained a muscle).

After that day my world turned upside down. I started to sleep like crap, then I started to have severe pains throughout my body and fevers between 99.5-100.5 daily, which would cause me to turn the AC down to 65 degrees. Then my heart started acting crazy. Walking was like being dizzy and looking down a tunnel just praying to be able to sit down soon before I black out. I got very swollen red lymph nodes under my arms which made me think I could have cancer!

Cont.

April 25, 2012 at 7:40 am
(59) Notallwhowander says:

The tachycardia was bad, very bad. At rest I would be between 100-130, and at sitting or standing I would be around 160… I also found out via a tilt table test a year later that my BP was dropping to 50/30 after 20 minutes of standing (which was strange as it didn’t happen quickly) they were shocked I was still awake! Just felt like a normal day, trying desperately to find somewhere to lay down to make the symptoms better. My doctors were not sure what to do. I was put on a strict Gatorade only fluids and 5g of salt a day regime. She tried me on Florinef and I found with the Florinef that the salt was too much. Within 3 months I could stand to walk again. Heat still makes me symptomatic and I still constantly feel too hot, inappropriately. The pain in my limbs is also still there, but ever changing…which makes it hard to diagnose.

My doctor thinks now that I may have had an infection (I got infections often) and this set off a dormant autoimmune disease to attack my ANS. 

April 25, 2012 at 7:41 am
(60) Notallwhowander says:

In conclusion,
Do not make dangerous generalizations of POTS patients. I would’ve given anything to just workout and be better. I was not naive to excersize. The hardest part of dealing with all of it was the lack of understanding and support that gets brought up by generalizations. As POTS patients, we feel guilty enough of having to put the ones we love through all of this hell with us. The lack of true understanding makes me feel like I am crazy, when I am obviously not. I was at the top of health and deteriated in 1 year, symptom after symptom…until you cannot walk. When you don’t have an answer of what is doing this it makes you fearful that I wouldn’t wake up one day. I feel very sad for the people that may have convinced themselves because of unknowledged doctors that they  were too lazy and that is what caused them to be ill, when in turn they actually had a real disease. It saddens me these people might be suffering in silence and dealing with ridicule due to some ignorant doctors drawing assumptions. Shame on you.

May 4, 2012 at 5:44 pm
(61) Olivia says:

I started having the symptoms of pots in 7th grade but it really hit after I had strep throat, mono, and a cracked tailbone in rapid succession. I couldn’t seem to recover afterwards and spent most of 8th grade home sick. Before this I was active as I was a synchronize swimmer, volleyball player and rode horses. Everyone at school thought that I was faking because I didn’t look sick, especially the teachers. I had ten doctors and none of them really thought I was sick and I got diagnosed as depressed. Of course I was depressed! Everyone but my mom thought that i was lying! Luckily went to Mayo clinic and was diagnosed. However I can’t attend normal schools,am constantly fatigued, and get sick easily. That medical professionals think that pots is caused by laziness is really insulting and demoralizing. People with pots already have an incredibly hard time getting people to believe them. They should be ashamed of themselves.

May 20, 2012 at 9:13 pm
(62) Sydney Taylor says:

Thank you SO much, Dr. Fogoros!! Although the damage has been done, I hope many people stumble upon your article when searching “Grinch Syndrome.” I was diagnosed with POTS/ NMH on Halloween 2011, and had waited 4 years to get it. Today has been a particularly rough day, and reading that my serious illness was renamed something demeaning did me in. Thank you for helping to educate others!!

June 15, 2012 at 10:50 am
(63) Donna says:

Thank you so much for speaking out against this research and demeaning title. POTS is extremely difficult to live with and poorly conducted research such as this, just makes it harder for us.

November 5, 2012 at 2:51 pm
(64) Momtofour85 says:

While I do not have POTS; I do have other Autonomic dysfunctions. I’ve suffered Syncope and presyncope, chronic OI as well dangerous arrhythmia’s and have well documented and diagnosed through months of strigent testing.

I find this disgusting to think that a doctor with a medical degree would do something like this to patients who are suffereing so greatly; whether it be to deconditiong or POTS or really anything else.

One thing that really gets me is this “Dr. Levine’s group studied 27 patients with POTS who had been referred to his center.”

How does doing a study of 27 patients make him an expert on anything or be able to really give a professional opinion about anyting in such a small case study, when over 500,000 suffer from POTS in the US alone?

Hopefully the name will not be changed; because GRINCH syndrome just sounds like such a derogatory thing that I can’t imagine the mental reprecussions this could have if it actually happens.

January 16, 2013 at 4:11 am
(65) sarah D says:

I have tachycardia. I have had it since right after highschool. I was always healthy and lively. I began to be out of breath and so much fatigue so that I could not even walk. I thought I was dying. I would throw up a lot and then came the anxiety. I was diagnosed with “anxiety disorder”. Right…. one thing I know for a fact was that the shortness of breath and the anxiety came after the rapid heart rate that wouldn’t go away. Doctors want to tell me it was the other way around. For 8 mo I was bed bound. Now although my anxiety is gone I still have rapid heart rate and moderate fatigue. My body is fighting hard. It seems like I have a new symptom pop up every few years that never go away including. Hair loss and scalp bumps/ itch supposedly from an “allergy” I also have another nasal allergy year round from an unknown cause. I believe its auto immune. ALL OF THIS HAPPENED AFTER A DOUBLE EAR INFECTION FROM A SWIM CLASS AT THE COLLEGE. Repeated tests show my white blood count is high. This last symptom is the arteries in my neck always hurt. I cant even sleep with my head slightly back or it feels like a bent straw, That the blood doesn’t flow properly. Also if my head is too hard on the pillow or my neck I should say, it feels like it inhibits the blood from flowing right. I need help. Doctors don’t want to help or do any tests. They only care about is the five minutes of ignoring you and the big check. All hope is lost. Ignoring the problem is the only way to go on living.

March 19, 2013 at 7:57 am
(66) crib says:

Dr levine’s study only demonstrates the their exercise protocol improves the symptoms of a cohort of pots patients. Without longtitudal studies the statement that it cures pots is baseless. Several of the proposed etiologies of pots mimic deconditioning.

January 27, 2014 at 7:29 am
(67) Swarna says:

Good day, Ms. Sarah D,

I do not know if you have tried Cymbalta especially for your symptoms in the neck and for POTS. Cymbalta is very good in helping neck symptoms like what you have.

Swarna

February 19, 2014 at 6:56 pm
(68) Kristina says:

Thanks for writing this. I know for a fact that my pots is not a result of de-conditioning because I was incredibly fit until I fell ill pretty much over night. I worked in the health and fitness industry and I was doing a large amount of exercise every day. I was on my feet for 10 hours a day 5 days a week and was running twice a week, doing zumba twice a week, yoga once a week, weight training once a week and long walks twice a week. My fitness regime would give some athletes a run for their money! I started to feel generally ill and had a few funny turns but I continued my normal routine until I woke up one day with sever palpitations, unable to breathe, severe chest pain, pressure build up in my brain and then i collapsed. Pots had hit me full on from literally standing up out of bed. That just proves that this so called doctors conclusion is utter BS!!!!

February 25, 2014 at 3:23 am
(69) momjean says:

This is a great article. I did not realize that this was an issue It makes me both laugh and cry because every child I know that has POTS, and that is 8 kids, was an exceptional and highly competitive athlete prior to the sudden onset of the condition. My daughter swam 6 to 8 miles a day 6 days a week prior to a rapid onset of POTS. It seems ludicrous to me the conclusions of the study.

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