POTS and the Grinch - Comments From POTS Sufferers

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A few years ago, readers asked me to comment on an academic study, published in the Journal of the American College of Cardiology, which concluded that postural orthostatic tachycardia syndrome (POTS) was often brought on by “deconditioning.” The lead author of that study (Dr. Benjamin D. Levine MD, a respected researcher who, in fact, has helped hundreds of patients with POTS), also made the unfortunate recommendation that this condition might be called “Grinch syndrome,” because sufferers hearts’ were often “two sizes too small.”

POTS sufferers made it plain that they objected not only to the insulting nickname, but more importantly, to the suggestion that they had brought on the condition themselves, by means of sedentary habits.

Accordingly, I reviewed Dr. Levine’s study in detail, and posted the commentary found here.

My commentary elicited scores of reactions from readers - many more comments than I have ever gotten, before or since, from any article I have written. Most of those readers said pretty much the same thing (as I will demonstrate momentarily). Indeed, their response was so great and so consistent that I was contacted by Dr. Levine himself, who asked for the opportunity to respond to me and to my readers. I gave him leave to respond as he wished, and promised to publish his response in full. (Here is Dr. Levine’s response.)

Here is a small sample of those reader comments, to give you a flavor for their passion, their pain, and their pleas for doctors to try to understand that they are experiencing a real medical condition that is not self-induced, and that requires the patience, understanding and expertise of their physicians:

Jennifer: “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. 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!!!”

Kim: “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!”

Nicole: “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 solely from a structurally “small” heart! It is a SECONDARY response to a more global, SYSTEMIC problem. Much thanks and gratitude.”

A Mommy Warrior: “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. 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.”

Rachel: “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 exercise program helped a little because 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.”

Buffy: “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!”

Stacy RN: “Thank you to all my fellow POTS sufferers who have tried to explain why Dr. Levine’s narrow description of POTS, which he erroneously is trying to have renamed the Grinch Syndrome, is so damaging to us in trying to find help in the medical community and in obtaining disability. We are not attacking Dr. Levine, rather we are fighting back against the misrepresentation of POTS. We just want the distinction made between the subset of deconditioned atrophied hearts causing temporary POTS-like symptoms (which you are free to call the Grinch Syndrome if you like!) from the other causes of POTS, some of which are permanent and not cured by exercise, as much as we might wish it could be!”

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