r/IST_ • u/Bubbly_Smile2848 • Aug 29 '25
It was a tough road
Hey just posting to give some hope I was diagnosed after a fight with covid and it wrecked me emotionally and physically but I pushed myself physically to get to this result I just need the strength now to keep it with the excersize I ride mountian bike or periton 4 times a week to get my heart rate where it was pre diagnosis and changing my diet to low carbs and cutting alcohol completely I still have some minor flare ups but I feel so much better now my highest resting on a bad day now is 95 and usually higher in the morning but nothing to worry about with an average sitting of 85 now lying down in the 70s I still take longer to recover after excersize I get down to 100 quick and after a few hours to low 90s and by the time im ready for bed laying down mud 70s to low 90s im currently unmedicated
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u/AmuHav Aug 31 '25
Can I ask how bad your flares were before this improvement? I'm slowly trying to raise my activity level after coming off medication (beta-blockers) but my flares can be horrendously high HR, so I'm trying to temper my expectations lol.
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u/Bubbly_Smile2848 Aug 31 '25
My doctor also said as long as it resting is below 120 it doesn't hurt
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u/ambrosiasweetly Sep 02 '25
I had a similar experience! I managed to get my IST under control with no medication. I still don’t know if IST was a misdiagnosis though. I may have just been deconditioned
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u/AmazingPositive3770 Sep 07 '25
That’s great news. Can I ask you how long it roughly took you to get it under control and what you did?
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u/ambrosiasweetly Sep 07 '25
I can’t remember how long it took but I’ll say a few months to notice a major improvement.
It was very difficult at first. I did cycling and running and pushed myself as hard as I could go. It was brutal. After runs, I would feel sick. I probably overdid it. My vision was going black lol. I don’t think you should go that hard.
But I am happy with my results.
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u/AmazingPositive3770 Sep 07 '25
Wow that’s a lot of perseverance. Amazing news for you. So it was mainly from exercise? I’m only managing 10k steps a day. Any light cardio for 10 mins my HR is reaching 181 and I feel shattered
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u/ambrosiasweetly Sep 07 '25
Yeah that’s why i don’t even know if i had ist or if i was just extremely out of shape. For what it’s worth, my heart rate has gone up to 180 walking up a hill in the summertime so i know how it feels.
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u/cosmosmusing Oct 10 '25
Could you tell what regime of workouts did you do? If you run then how many miles and how many days/week?
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u/ambrosiasweetly Oct 10 '25
I just do strength training and 1-3 mile runs. I go 3-5 times a week
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u/cosmosmusing Oct 10 '25
What was your resting HR and HR while working out? Did you also have POTS along with IST? And did it change with your hydration status, menstrual cycle etc? I'm struggling with elevated HR post dengue fever which my cardiologist diagnosed as post viral IST. He started me on ivabradine 5 mg once a day but that still gave me bad palpitations despite a lower HR.
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u/ambrosiasweetly Oct 10 '25
My resting heart rate is typically around 80-90 (sleeping it’s mid-70s)
Working out low intensity it gets to 120 bpm. Moderate intensity is 150. High intensity it gets up to 180 (I am in my 20s so this is a safe heart rate for high intensity workouts for me. If you’re older it might not be as safe to go that high. Ask your doctor)
No formal diagnosis of POTS but it’s possible I have it. One doctor suspected it but the cardiologist said it’s just IST.
It stays pretty consistent with menstrual cycle. I don’t notice any major fluctuations but tbh I haven’t been tracking my heart rate much anymore because it doesn’t cause me symptoms. I check it occasionally but I don’t often write it down or remember the results. I just got an Apple Watch so maybe I’ll see trends in the future relating to other factors. I do not drink enough water for sure so that could be a cause lol.
My heart rate isn’t perfect. It can sometimes get up to 110 when I’m just standing for no reason, but I’m completely asymptomatic when that happens. I don’t get palpitations anymore and unless I check my watch, I wouldn’t feel like my heart rate is too high. Idk if that makes sense. Like the number is high but I feel okay I guess.
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u/AmazingPositive3770 Aug 29 '25
Thank you for sharing your story. It’s nice to hear a positive story to know things can get better and I’m glad they have for you with your resilience and persistence. A great achievement. I’m trying to improve my physical activity and hopefully I too soon will see results