Arizela ran away to Vegas in the ’97 to marry her true love and hasn’t regretted a moment since. In 2006 she graduated with an Associate’s Degree in nursing and immediately went into the specialty of neonatal (newborn) intensive care nursing. In 2009, she developed a debilitating heart arrhythmia. After two years of complete disability, her heart got better (mostly), allowing her to return to her career and continue with plans to become a nurse researcher. She finished her BSN at Ohio University in 2013 and immediately enrolled at The Ohio State University College of Nursing, where she spent half a decade living in electronic journal databases and conducting research toward the goal of improving birth outcomes and the lives of children who don’t have great starts. She now works as a postdoctoral scholar.
With an ever present laptop, a deep social conscience, and disproportionate loves of yarn and speculative fiction. Arizela lives in the wilds of Kentucky with her wonderful husband and a dog. She is proud mom to an adult daughter. Her time is carefully divided between committing acts of science, knitting, pretending not to spoil the dog, and writing about smokin’ hot ninja witch hunters and telepathic nonbinary dryad wolves.
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Note: Because I’ve been asked, kind of a lot – the name Arizela was the result of a constructed language (conlang) my husband created in college with a friend in the early 90’s. It means “guardian of the desert.” It is shared with a genus of moth (thank you wikipedia) and a handful of folks who’ve sprouted up on the internet over the last 20+ years. I sometimes go by Ari (pronounced “airy”) or Zela (rhymes with “hella”) for short.
Hi there.
I read you explanation about what IST is – I also have it, though mainly only on exertion- and was going to tell you about my success using ivabradine. But is it true you’re better now? What changed?
I would do anything to be ale to exercise normally again.
Did your IST really go away? I’ve been searching hard for someone this has happened to.
Love it if you could reply.
Regards,
Karina
Hi, Karina.
Yes, I am better now. I still occasionally have symptoms, but I am back to work as a nurse and rarely have a day when the fatigue gets me. My condition is possibly a little different than most, because I had a combination of POTS (upright-only tachycardia) and IST (even when sleeping/laying flat). So it got worse when I stood up, sat up, or walked. It also got MUCH worse if I felt stressed, fatigued, or tired.
After my second cardiologist shrugged his shoulders and said he didn’t know what to do for me (at least he was honest!), I did some research on my own. I discovered that the elevated heart rate can actually be a compensatory mechanism, meaning it’s your body’s response to prevent other problems, so fixing the underlying issue became my goal, rather than treating the heart rate. I talked to my cardiologist, and with his oversight (which is VERY important), I stopped the medications that I was on for my heart rate because they weren’t working and they were making me feel worse.
One of the problems that can lead to elevated heart rates, particularly on exertion, is the weakening of what we call “the skeletal muscle pump” which means the muscles that squeeze the blood back up your body after it goes down into your legs. People can have pooling of blood down there, which reduces the amount of blood that’s left to circulate. Even though I felt like my legs were perfectly fine, strong legs, I decided to give it a try. Again, with my cardiologist’s oversight, I started a particular form of exercise that happens when you are literally laying down. I did recumbent cycling on a little peddler while laying flat on my back for several months, gradually improving my strength and conditioning.
One of the most important lessons I learned while learning to manage my IST/POTS is that getting overtired does WAY more harm than good. Instead of trying to do 20 minutes of exercise at a time, I’d peddle for 2-3 minutes out of every hour, so that I never felt fatigued. I also maintained my exercise heart rate in a very narrow band – below 130 beats per minute, even if that meant peddling at crawling speed. Then I’d get plenty of rest. Consistent sleep patterns are also very important when dealing with autonomic nervous system problems like IST/POTS. Meanwhile, I ate a high-salt diet (4-5g a day) and drank LOTS of water to treat my particular form of POTS (this doesn’t work for everybody, obviously, and again I had my cardiologist on board with the try. I monitored my blood pressure carefully and maintained it within the normal range).
After a few months, my heart rate slowed to the point where I no longer had syncope and could start driving again. My slide into disability took less than two months. My disability continued to worsen for over a year. Recovering from it took more than 6 months before I felt well enough to pursue my former activities again. While my initial symptoms came on out of the blue, the truth is that getting as bad as I got by the end of my disability didn’t happen overnight. Neither did getting better. It was a long, slow climb back up a mountain of fatigue and lost abilities, but it was well worth the work.
From what I’ve read, about 10% of people who have IST make complete recoveries. Most people continue to have at least some symptoms and many never recover, but the treatment for this rare condition is so scattered and so little evidence-based that it’s hard to say whether that’s because some people just can’t get better or if it’s because they don’t get the appropriate advice. From what I have read, ablations and medications to lower the heart rate can actually be counter-productive to what the body is trying to do by raising the heart rate (which is keep the blood pressure normal, in the case of POTS), which is why so many people complain of worsening fatigue even though their heart rates improve.
That’s my story in a nutshell. Please keep in mind that this is not medical advice, I am not a cardiologist, and what worked for me could kill you. If you’re interested in trying any of these things, I suggest talking to your cardiologist about it first and making sure you have his or her help managing the numbers and dealing with any problems that crop up. The primary researcher I studied when developing my individualized treatment plan was Dr. Grubb from the University of Toledo, who is a world-renowned specialist in POTS and other rare arrhythmias.
Thank you for giving me a chance to read your works.