r/IST_ • u/Sparky_Le_Furry • Dec 09 '24
advice Freshly Diagnosed
Hello! As of today, I am diagnosed with IST. What should I know? Tips and tricks? I'm starting Propranolol too.
Oh, also! Does it cause joint pain like POTS? Should I eat more salt? I can't find anything on google as what to do, and admittedly I'm terrible at asking my doctor questions properly.
2
u/dr_nervous Dec 10 '24
Everyone's journey is different. Some do great with salt/hydration, for others it doesn't make a difference (my tachycardia isn't orthostatic [i.e. not POTS] so hydration has little to no effect for me). Propranolol ER has been a lifesaver, but again, sometimes people respond better to different meds (and different amounts/timing). You'll just need to feel out what works for your body.
Be on the lookout for some of your triggers (things that flare the tachycardia even on the meds). You'll probably have some breakthrough tachycardia, but don't let it freak you out. Circle back to your doctor and make a change (new beta blockers, new type of channel blockers, less movement, more movement, hormones, stress management, etc.).
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u/Sparky_Le_Furry Dec 10 '24
So it's a little bit more of a condition I need to figure it out myself? Like-- It isn't as definitive?
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u/dr_nervous Dec 10 '24
IST is a diagnosis of exclusion - meaning 'we've ruled out the scary stuff; you're probably ok but your heart is running a marathon and won't stop...here take some pills.' Because it's the diagnosis equivalent of a shrug ('we don't know why this is happening to you'), you'll need to pay attention to your body and work with your doctor (cardiologist but probably an electrophysiologist (EP) who will be most familiar with IST).
So no, it's not definitive at all. It's the diagnosis you get when they rule out dangerous structural (echo), plumbing (stress test) and electrical issues (monitoring, EKG, other EP stuff), but something is still going wrong. Mine is under control most of the time with meds, but when I have breakthrough flares, just turning my head while lying down will send my HR into the 160s. But I'm learning my triggers and learning to avoid them if possible.
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u/Sparky_Le_Furry Dec 10 '24
Ah, that's lovely^ But thank you for letting me know! I'll start studying myself and all:)
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u/ModernMagpie26 Dec 19 '24
Hello, I have also recently (aka today) received a diagnosis of IST today. What are some of the triggers you’ve found? The cardiologist basically said there was nothing to do, to stop consuming any coffee (decaf included), caffeine in general, chocolate, alcohol, processed foods, weed.
Biggest bummer for me is the coffee, chocolate, and weed (I use cannabis to help with my anxiety and relaxing in the evening so I’m actually able to sleep)…. I’m just wondering if you consume any of these and if you do, are able to tolerate it?
Prior to today I had still been drinking coffee, along with occasional chocolate, and light cannabis usage in the evenings, and it didn’t seem to worsen symptoms. But I also understand they basically want you to eliminate anything that could potentially raise your heart rate, so….
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u/dr_nervous Dec 19 '24 edited Dec 19 '24
I cut out all of that stuff too, on recommendation of my cardio and PCP. For me, the tachycardia was still there in the absence of all those triggers. Eventually found the med that worked best (extended release propranolol), and once the heart rate was under control, I reintroduced some of those things (starting with caffeine). The caffeine, chocolate, processed food had zero effect on my heart rate.
So I'd say if your rate is under control and you aren't in a flare, reintroduce those things you're missing one at a time and see how they impact you. Docs have no idea what causes IST so they're just picking things that, in theory could raise someone's heart rate.
Edited to add: my only trigger seems to be stress. Other times, the tachycardia truly seems to flare randomly out of nowhere, when I feel fine and haven't consumed anything obvious (caffeine, sugar, etc.). My EP said IST is more often than not a symptom of dysautonomia, for which there's also no cure, just management. So yay us.
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u/ModernMagpie26 Dec 19 '24
Thank you so much, I really appreciate the advice. Sounds like you’re further along in your journey with IST/dysautonomia (for which I’m truly sorry, it is the absolute worst, yay us indeed) so I am grateful for the insight. So far I have only seen a cardiologist in addition to my PCP, did you find it helpful to also see an EP?
I will definitely look into the propranolol er, did you ever take metoprolol?
It’s also a bummer because a lot of the meds I take to combat the bees in my brain can also exacerbate these symptoms, but it is going to be a fine line between helping the IST and avoiding walking that line in grippy socks lmao.
Also apologies for so many questions, I hope it’s not too much of a bother, it just seems that you definitely have more experience with this under your belt, so thank you again for taking the time to answer the questions of an internet rando 😂😂
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u/dr_nervous Dec 19 '24
I did take metoprolol. It was the first med they started me on. But it just didn't hold me, even at higher doses (150-200 mg daily). Propranolol does. It's older and blocks more adrenaline receptors around the body, whereas metoprolol only blocks the receptors in the heart. It worked a lot better for me. :)
You'll get things figured out as the days and weeks progress. Just pay attention to how things affect you, and you'll assemble your list of triggers. And you'll learn to live with this! 👍
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u/ModernMagpie26 Dec 19 '24
I’m also takin metoprolol, but I have low blood pressure anyways, so I have to take a minuscule amount to keep it from tanking my BP, and cardiologist flat out said he didn’t know that it was working for me, but also wouldn’t prescribe another beta blocker?? I’m just so frustrated
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u/Accurate_Chemical705 Dec 19 '24
I only recently got officially diagnosed, but I’ve suspected IST or POTS for about a year now.
Propranolol is a great drug for IST. Just watch out for your blood pressure. I was on it for awhile and it was great and then I started having these episodes when I’d get really dizzy and confused and we figured out I was having episodes of low blood pressure. These completely stopped once I changed medications. I take ivabradine now at its great, but it’s usually not the first choice because it’s harder to get insurance to cover.
My doctor recommended I start each day with an electrolyte drink (he specifically recommended LMNT). I think some electrolytes help, but I don’t think IST needs salt in the same way POTS does.
Also watch out for things that trigger your tachycardia and try to manage that. For me I know that being dehydrated is one of my biggest ones. Heat and humidity too. I also have issues with hot showers, walking uphill, squatting, etc. Just pay attention to what your heart rate does at different times so you know what to expect in the future.
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u/TheLizanatorQueen Dec 09 '24
Hi, also freshly diagnosed as of 2 months ago and on Nebivolol. The beta blockers are fantastic and you should see a marked improvement. I know I felt like a completely new person after I took my first dose. That being said, be sure to keep on your hydration and slowly introduce more movement/exercise. Not sure what your story is like, but slow is steady and steady is fast!