For people suffering from Orthostatic Intolerance, Postural Orthostatic Tachycardia, Mast Cell Activtation or EDS. Follow me as I document my struggle towards better health.

EXCLUSIVE: the "Grinch Syndrome" or Happy Holidays from Dr. Levine

Two sizes too small! Yes, that is a characteristic of the heart of a POTS syndrome sufferer according to Dr. Levine in his research paper "Cardiac Origins of the Postural Orthostatic Tachycardia Syndrome."  Although I don't consider myself a "Grinch", I have, on occasion, taken candy from my children (particularly chocolates and gummie-worms).  I have also put antlers on my golden retriever.

During this  time of year when the generosity of spirit is linked to the size of your heart, the "Grinch Syndrome" moniker can be a drawback to POTS sufferers looking for acknowledgement for spreading cheer and happiness.

Since Dr. Levine's controversial term of the "Grinch Syndrome" has lit up some folks who have POTS or OI and in true holiday spirit, here is Dr. Levine's response to their anti-Seuss sentiment. (Prior to reading Dr. Levine's defense of the term "Grinch Syndrome", I recommend you watch this short video in order to get into the Grinch mood.)



>>The vast majority of our patients who hear the term "The Grinch Syndrome" laugh and take comfort in the spirit in which it is presented. On the other hand, some patients have taken offense at our use of this term and I want all POTS patients to know that we mean them no ill will. As I often tell my patients, the term "POTS" simply puts a label on the fact that the patient's heart beats fast when they stand up. The "Grinch Syndrome" focuses attention on what we believe to be a key underlying mechanism -- namely that the heart is "two sizes too small."

It is important to realize that a routine echocardiogram will not pick this up as the mass of the heart is challenging to measure and not a standard clinical variable. Based on simple population statistics, 2.5% of all the women in the world will have a heart that is more than two standard deviations below the mean -- the definition of "normal" in medicine. We believe that it is these women who are most at risk of getting POTS symptoms which can be induced incredibly quickly by even a brief period of bedrest.

We have never felt that a single POTS patient was lazy or irresponsible -- if it were easy to treat POTS with exercise, everyone would do it!! However when we apply a highly specific training program developed for use in astronauts (2/3rd's of whom have POTS like symptoms when they come back from space by the way -- it is a "gravity problem"...) focused on making the heart bigger, the vast majority of patients feel dramatically better and many are "cured". I should emphasize though that maintaining fitness is a life-long goal for our POTS patients and we encourage them to consider exercise as part of their personal hygiene.

Ultimately though, I would like to emphasize that humor is a powerful tool for healing, not only for patients with POTS, but almost any disease. We treat all our patients with the deepest respect, and are acutely aware of how debilitated they are, which we take very seriously. Mark Twain once said that "Humor is mankind's greatest blessing"; we believe it is an essential part of the healing process and hope that all of our patients smile when they think of The Grinch, and then go off to exercise!<<

I hope this response from Dr. Levine is helpful to all my fellow Grinches!!

5 comments:

  1. Very well put by Dr. Levine.

    I got quite a chuckle out of this entry. The Grinch song most definitely set the mood. :)

    Speaking of Mark Twain.... Mark Twain wrote of the dangers of bed rest. Apparently his wife was severely debilitated with "neurasthenia", which may be a modern version of dysautonomia or CFS. She eventually recovered, but back in the day the treatment for neurasthenia was to send the hysterical women to bed, which had very poor outcomes. Twain acknowledges this, and I suspect his wife eventually bucked the doctor's advice.

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  2. Thank you for posting this!

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  3. I appreciate Dr. Levine's response to criticism; I wish he would have kept the "Grinch Syndrome" terminology in his clinical practice/laboratory and out of the major medical publication for a scientific community who is either predominantly ignorant about POTS or misinformed as is, without adding further confusion or humor to the disorder.

    Nevertheless, I value his radical approach to managing POTS in a subset of patients. My main criticism remains: POTS is a heterogeneous disorder that cannot be equated in its pathophysiology or etiology to healthy and extremely fit astronauts returning from space despite similar symptoms in both astronauts and POTS patients. Furthermore, in many patients POTS is associated with autonomic and small fiber peripheral neuropathy (the autonomic testing in these patients is abnormal). Since Dr. Levine excluded these patients, we cannot extrapolate his study results to a large group of patients with dysautonomia. Nevertheless, I would eagerly await further studies from Dr. Levine, which would hopefully encompass a more heterogeneous patient population with POTS.

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  4. Thank you Dr. Levine for your efforts to help us POTs patients! A non-drug approach to POTs is bound to create controversy in the medical world and I so appreciate you putting up with all of the critisim and continuing your research! I hope to be in your study soon!!!

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  5. I don't buy it. If it was true that POTS sufferers had a heart that was too small, and a short period of bed rest would bring on symptoms, why did it come on after a particular accident or pregnancy or bout of viral illness, instead of every time they got ill? It just isn't that simple.

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