Over the years since I was first diagnosed with IST, I have received many, many well wishes and kindly comments from folks who have found themselves in the same boat. I’ve also been asked for a lot of advice. I wanted to provide a brief update on my own path with IST and my later additional diagnosis of POTS, and to put my best advice somewhere folks can find it.
A bit of background – IST (Inappropriate Sinus Tachycardia) is just a fast heart rate at inappropriate times. POTS (Postural Orthostatic Tachycardia) is a fast heart rate in response to changes in position – like going from sitting to standing. Generally speaking, POTS is ruled out before a diagnosis of IST is made, but not always. In my case, I continued to have a fast heart rate even when sleeping, so my physician skipping the tilt-table test that detects POTS. Turns out, this was a mistake, as I had both disorders and they were ganging up to make my daily life much more affected than is usual with IST alone.
Once the diagnosis of POTS was made, I was referred to Dr. Grubb, a renowned specialist in POTS treatment at the University of Toledo. Unfortunately, he had a 9 month long waiting list for new patients. Well, being a nurse (and thus, making a terrible patient), I decided to do some digging. I found articles by Dr. Grubb discussing his non-medical management of POTS. I took them to my cardiologist (who had admitted by this point that he was at a loss for how to help me) and together we put a plan in place. I went off all the medications, because I learned that the elevated heart rate is actually an attempt by my body to compensate for a separate issue, so reducing my heart rate without fixing the underlying problem was causing me even more problems with fatigue. It turns out that my body was compensating for a low blood volume by increasing my heart rate and increasing the muscle tension in my arteries, to keep my blood pressure normal.
To fix this, I started doing exercise to strengthen my calves and thighs with a tightly controlled regimen that involved gradually building stamina from a couple of minutes to over an hour of peddling while lying flat on my back to keep my POTS in check, and never letting my heart rate go over 130 while exercising. I also began drinking 3-4L of water a day and eating a VERY high salt diet. Now, as I’m not the sort to put salt on anything, this was actually pretty difficult for me. I was expected to eat 4-11grams of salt a day (which is 2-4 times higher than the average American high-sodium diet). I usually managed 3-4grams, but eventually I started seeing the results of increasing my blood volume. I also pursued a mindfulness about my body that I had never had before, learning and respecting my body’s limits despite my desire to overdo it. Over time, my heart rate decreased, my exercise tolerance increased, and eventually I was able to return to work as a nurse. It took me over a year to completely recover from the year of disability I suffered before trying out the high-salt diet, exercise, and body-mindfulness management plan I created, and I never got to see Dr. Grubb because the solutions I learned from him in the literature corrected my condition before I ever made it off the wait-list.
Today, I am pursing my PhD in nursing science at The Ohio State University under a National Institutes of Health-sponsored training grant for promising scientists, which would not have remotely been possible if my condition had continued to languish in the land of beta blockers and ablations. With no medication and no ablation, my resting heart rate is in the mid-70′s, and while I still occasionally experience a pounding heart and the rapid rates of old, I am competent at managing the symptoms and the underlying causes.
All that said, PLEASE do not try to copy my success without the advice of a physician. Even though I found my own solution, I stayed in close touch with my cardiologist and did nothing without his agreement. If your cardiologist isn’t willing to listen or shrugs your concerns aside, as several of mine did, find a new doctor. If all else fails, request a referral and get on the list for Dr. Grubb, who really does know his stuff, if his publication record is any indication.
My best advice for you is this: if you have a person in your life who knows how to research the medical and nursing literature for a condition like this, enlist them as your advocate and constant companion in medical situations, if you can. For what it’s worth, the cardiologist who eventually did test me for POTS misinterpreted the test as negative initially, and only my own knowledge of the diagnostic criteria made him reconsider and recognize that I did in fact have the condition, as there are two different forms, and I have the rarer variety.
Finally, I completely understand the desperation that this sort of rare and debilitating condition produces, but please don’t fall prey to “miracle cures.” The methods I utilized were not pseudoscience nonsense involving crystals and magnets and energy fields. They were evidence-based treatments described in medical literature that was produced by a recognized expert in the very narrow field of POTS and IST research. They also required no money other than the purchase of a free-standing exercise peddler ($56 on Amazon).