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!!

Stomach flu and POTS - An Emergency Guide

So you have come down with the Stomach Flu, gastroenteritis, or food poisoning. The nausea, vomiting and diarrhea is unpleasant(and unbecoming) to say the very least but poses real dangers for someone with POTS or OI. Losing so much fluid in so little time can be devastating to someone with POTS where chronic low blood volume or hypovolemia can be present.

Has this happened to me?  Why yes, it has happened to me.  And at the most inconvenient moment...of course.  We had a wonderful holiday planned: a few days in Boston to watch a Patriot's home game and then a week long trip south to enjoy the sun and sand.  However, the stadium food at Foxborough had a different plan for me.  I think it must have been the bratwurst sausage with the fried onions, peppers and all the fixin's.  As soon as the game was over (the Patriot's won) I started feeling the effects.  By the time we reached the hotel the dams had burst and I was one with the hotel toilet bowl.

My greatest fear was that the sudden loss of fluids would trigger a relapse of the most severe POTS symptoms; chest pain, inability to sustain blood pressure when standing, total brain fog etc etc.  So what could I do to prevent a relapse?

This was my plan:

  • Endured 6 hours of the vomiting and diarrhea (until it started to subside).  Took small sips of bottled water.  No sugary drinks.
  • Took a chewable Dimenhydrinate tablet  (Gravol or Dramamine) right after vomiting without water.  I slowly nibbled at the tablet and let it dissolve in my mouth.  At this point my stomach was so sensitive that if I took the tablet with water it would have been returned immediately
  • Waited until 2hrs after last toilet bowl exercise to start sipping water. 250ml per 1/4 hr
  • Waited another 2hrs to start drinking warm chicken or vegetable broth with a high sodium content (800-900mg per litre) 250ml per 1/4 hr.
  • As long as the stomach is quiet, start increasing the liquids.
Other pointers:
  • I avoided taking Imodium as it decreases the intestinal activity unless I had sustained diarrhea for longer than 6hrs or unless a doctor suggested I take it.  With POTS or OI you may already suffer from low motility so the imodium may not be such a good thing.
  • I avoided sugary drinks as they can make matters worse
  • I avoided milk drinks or substances as they also can make matters worse
  • Start the lots salt diet for 2 days following the episode
 This plan was good for a 24hr flu variety of stomach irritation and not for a more serious stomach problem.  If my condition had become worse or if the symptoms had continued unabated for more than 24 hrs then I would have sought emergency medical attention.  With POTS or OI you cannot allow yourself to get severely dehydrated.  When in doubt call your doctor and err on the side of caution!!