UPDATE: IST and My Not-So-Broken Heart

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).

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5 Responses to UPDATE: IST and My Not-So-Broken Heart

  1. Pingback: My Broken Heart – an Explanation of IST | The Write Life

  2. kristina says:

    Hi,
    I also have been diagnosed with IST a few months ago, I was admitted into the hospital about 10 yrs ago for this and they didnt know what was wrong with me and eventually just discharged me with no diagnosis. I just went to a cardiologist recently and was told i had IST and was given 25mg of metoprolo which is not doing anything. The cardiologist did say i should eat salt at every meal also and start exercising which i havent started yet. I get palpitations, sweating, chest pain and very easily tired, I also have beta thalessemia trait. I am happy that I found this post and you are feeling better, I wish there was more research on IST because it is definitely needed, Alot of people dont understand what this feels like everyday

  3. Paula says:

    I also have this or a version of… I was passed around for years from doctor to doctor with no explanation. Had failed ablation. Thankfully my boss at the time (a doctor) suggested i attend Prof Jonathan Kalman in Australia for a second opinion. Who happened to capture an episode in real time on ECG. I had a dual chamber pacemaker inserted and can tell you immediately my symptoms were relieved. There were a combination of things going on, each masking the other making it difficult for the not so trained and specialised eye to pick. I just recently in the past year have had a replacement done so I am 10 years on since and can tell you whilst it has not removed symptoms completely, I am certainly 95% improved, and really not bothered by symptoms any longer. I also work in healthcare which I found interesting. I am now 45. My symptoms triggered around the age of 25 and gradually became so bad that I was travelling to hospital nearly 3 times a week by ambulance. Given adenosine twice- failed (OMG) that is horrid experience like rebooting a computer, except is your heart and you are awake. Episodes could last anywhere up to 10 hours. Was exhausting! I am essentially cured of this very debilitating problem.

  4. Amanda schilling says:

    I have just now come across your blog from yrs ago, but thought i would post this message just because……I don’t know what else to do. I am a 62 year old women who has at times worked in the healthcare field, in a laboratory, I finished my working life in Pharma research. I have had sinus tachycardia all my life. As my father before me. When i was young i was often derided for sitting in the corner and reading a book instead of “going outside”. I tried to do that, but it was so uncomfortable, i just didn’t want to do it…..therefore i was a “wimp”. I knew i had tachycardia because that’s what the doctors at the time told me , they also said my father had it and had a full life …so don’t worry about it. OK so i did”t….when i was getting ready for my first child my dr at the time said yes you have sinus tachycardia, we will monitor you because pregnancy is almost the height of stress a woman’s body would go through. I was fine and went on to have 2 more children
    In 2006 when i was 51yrs old i finally realized i could not go on….I couldn’t control my everyday life. And. I took myself to the E room.
    To make a long story short I did well ….or better on some medications than others , but there came a time 10 yrs later that my cardio guy said ” your heart is out of control despite meds ‘ all other diagnosis ruled out.
    At 61 I had a sinus node ablation ….and they “cooked” the frenetic nerve. Which left my diaphram on the right side paralyzed. NOW MY HR IS DOWN BUT I CANT BREATH with out oxygen. MY GOD what do i do now? Any comments will be great!

  5. Arizela says:

    Amanda,

    I’m so sorry to hear about your experience. Women with IST and POTS often feel better when pregnant than at any other time, because of the increased blood volume. Have you had a tilt table test? At this point, it would not help with the phrenic nerve paralysis, but it might help if you are continuing to have symptoms after the ablation as treatment options are a little different if there is an orthostatic component of your tachycardia. Best wishes for recovery.

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