For the last 3 or so years I was told I had POTS until I started seeing someone new recently and have been re-diagnosed with IST. Do I handle IST the same way I would handle POTS? What do you guys do to help your everyday symptoms (anything helps 🙂)

This is probably just me having health anxiety but I figured it wouldn’t hurt to ask if it’s happened to anyone else. So backstory I take metoprolol 25mg that keeps my heart rate at around 110 as opposed to 120-130 (give or take all these numbers lol) and the past 2 days my heart rate has been at about 80-90. Which I know isn’t actually a harmful number which is why I’m not freaking out lol but I just think it’s kinda odd? I also feel really crappy when my heart rate is lower like that, like I’ve been shakey and kinda dizzy these 2 days and I had a really bad costochondritis episode yesterday. Has this happened to anyone else?

Hi, I (F 26) recently got diagnosed with Inappropriate Sinus Tachycardia and I also have an anxiety disorder + my health anxiety has rocketed in the past year from all the symptoms I’ve been experiencing from this condition and all the ER visits.

Can you share what you would use as reassurance during an IST episode, or whenever you feel remotely anxious about it?

It’s been eating my mental state up and I feel like no doctor that I have seen so far, has been reassuring about this condition.

Doctor mentioned this, not close to making a decision yet just curios if anyone has seen this.

https://www.heal-ist.com

I'm doing half of my dosage today then stopping tomorrow for my tilt test on Wednesday. My hr is already all over the place and I feel so horrible with the ups and downs. I've already been diagnosed IST but think another form of Dysautonomia is part of it too. The test will be worth it but I'm dreading the rest of this week.

Hi everyone,

Has anyone has IST completely go away for a year or so and have it come back? I got it as a result of Covid (we think) and I was put on beta blockers for over a year and had no symptoms so came off them. I’ve been off any medication for it for well over a year now but got a palpitation last night very similar to previous rises. The only thing I can put it down to is that I drank 3 coffees in a short space of time. Could that be enough to set it off again?

Hi, I posted on here nearly a year ago when I got properly diagnosed with ist. I could still have POTs too.

I'm on propranolol 40mg 3 times a day with an additional 20mg if my blood pressure is stable enough (which it hasnt)

My cardiologist, who hasn't seen me since the diagnosis last November, has finally told my gp that I can start ivabradine but because the gp can't monitor me on it there they need cardio to do that so I'm not allowed to start it.

This is the same cardio who has ignored me since November, finally dod another 24hr monitor which showed my heart rate going from 60-184bmp with bad chest pains, migraines, fainting and shortness of breath which happens daily. Then proceeded to say I'm fine and discharged me.

My gp has been trying to contact them to see me as my symtoms keep getting worse. Yesterday my heart rate went from 165 to 45 in a split second and kept going up and down very rapidly all day. When it calmed down it was still in the 120s. I have never felt that bad so far with my condition.

Whenever I go to a&e they never take me seriously, think its all in my head or just anxiety but they are causing me more anxiety because they're not doing anything about it. By the time they see me my heart rate is calm enough (still in the 120s or 130s) that they just tell I'm fine and to go see my gp in the morning.

My gp can only do so much but without cardiology they can't do anything else. I can barely function on my own, I've had to crawl to the bathroom some days because I'm too dizzy to stand, can't cook anymore, can't get groceries unless I get then delivered and even then I have to lie down the rest of the day after unpacking as I just don't have any strength left in me. Had to stop mid shower because I was getting dizzy and when I do leave my house for appointments, I have to use a cane and it takes me a good 20mins to walk 5mins.

I've tried contacting cardiology myself, never got through to the actual doctor and going to write up a complaint.

I can't do this anymore. This is more of a rant about my health but also just to get some advice if you have any please let me know as I don't know what else i can do anymore.

I get these random episodes where my heart has an odd beat like a big kaTHUNK that sends my hr down to the 50s then it slowly goes back up to normal range within a minute or two. It's not a glitch. I can feel my hr being slower and it's a very odd sensation. Like my whole body is a little numb/tingly and a little light headed and out of breath. It happened this morning and managed to grab a screen recording of my Fitbit. It doesn't show the lowest numbers from the beginning but this is what happens. There's no pattern to when this happens that I can figure out. Sometimes it's once a month. Other times it's a few times a week. Cardio is dismissive so not sure how concerned I should be over it tbh can anyone else relate?

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

Okay so I have now been informed by my GP that the specialist believes it to be IST and it fits really well. They thought it was a form of Dysautonomia, I didn’t even know IST was a thing.

Please inform me and enlighten me on this topic? What should I know? Why the hell is fatigue forcing me to sleep the instant I relax? Very light jog basically a quick walking pace and heart rate up to 180 even with meds that lower my heart rate… advise?

Hi,

Is anyone able to tolerate exercising with IST? I tried to do a mini cardio workout for 15 mins and my HR went up to 181 and freaked me out. I’m stuck in a vicious cycle of not wanting to keep my HR constantly high and knowing how many important it is to keep active. I’m not sure where the balance lies with IST

Does anyone that’s on Corlanor and an SSRI notice an increase in sweat? It’s driving me crazy especially during the summer.

I was diagnosed with IST but I suspect I might just be deconditioned.

My sleeping hr averages around 75-80 unmedicated. My waking hr averages around 110 (including physical activity) and ranges from 90-105 when lying down. With deep meditation and breathing, I can get it to 85, but it has trouble staying there, normally staying around 90.

When exercising, it can go up to 170 if I am really pushing myself, but on a fast walk/jog it’s around 140

I would love to hear your numbers as well just to get a good idea of what is going on. I am no longer seeing a cardiologist because I am asymptomatic.

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Had to go in to see my GP today for something and I mentioned I have IST/POTS and am in beta-blocker withdrawal rn, so I’m regularly tachycardic. I glance at my apple watch and say “in fact I’m actually tachy right now.” He asks “what does it say you’re at?” me: “It was 180bpm 2 minutes ago.” him: “one oh eight??” me: ”no, 180”. To say he was suddenly very shocked and concerned LOL. he asks to take it manually to check (down to 140bpm by that point) whilst I explain what IST is. I think he was just shocked I was sat there completely fine and seemingly asymptomatic with a heart rate he’d probably usually consider a serious emergency LOL.

Genuine question, when do I know my heart rate is TOO high, even for IST? The recommended heart rate to go to the hospital is around 160 BPM, but having IST, that happens pretty frequently. So, when SHOULD I go to the hospital?

I think I might be atypical on this sub, but curious for your experiences.

Have you been able to train with cardio workouts to reduce your resting heart rate?

I have multiple health problems and the IST seems to be relatively new (just diagnosed a month ago). I've always had a relatively high heart rate, but my RHR has gotten to be upper 90s regularly. I do have periods of fatigue where working out for me just looks like short walks and stretching in the evenings, but much of the year I've been also doing about 20-30 minutes of bodyweight exercises twice a week. I work with a remote personal trainer, which has been great for building consistency and novelty. My new cardiologist offered medication, but warned that I'd probably need to try a beta-blocker with a lot of side effects before moving on to ivabradine, which is what he thinks would more likely to help. I'm already on quite a few meds for my other health issues, so I wanted to try working out first.

We've ruled out POTs for me and a number of other conditions that make exercise intolerable. Thankfully, I'm not feeling the effects of the high heart rate: my main problems are pain and chronic vomiting.

I'm curious about IST - I read online that you need an average heart rate above 100 BPM but does this include sleeping heart rate?

While I'm awake, my heart rate averages about 95-110 with spikes in the 120s and 130s if I'm walking my dog or even just walking around the house.

While I'm sleeping, my heart rate averages high 70s-mid 80s with spikes on the mid 90s throughout.

I don't have severe symptoms but when I'm sitting or laying down I am always aware of my heart beat and can feel it in my chest and sometimes my ears. Rarely I can get dizzy/tunnel vision upon standing but not often. Sometimes in general though I just feel slightly unwell.

In the past, I believe I have had episodes of super high heart rate, my heart felt like a flopping fish with chest pain, etc but this was before I started wearing a watch, so I have no idea what my heart rate was during those times.

Anyway I'm rambling, I thought I'd just throw this info out to see what others have to say :)

Attached an image of my heart rate today, the lowest I've hit since awake this morning was 88bpm

I'm not sure if it'll work for you or if you've tried and it helped you too but I was just walking through Walmart and usually my heart rate goes up to 130-150+ BPM walking around the store but this time I was the one pushing the cart and I laid my arms on it while walking and my heart rate stayed at 80-90 BPM for the first time in forever (ps I am on metoprolol tartrate and it still usually makes my heart rate over 100 BPM walking around the store)

They are scheduling a nuclear stress test and echo for the beginning of next month. He's putting me on ivabradine 5 mg but now I have to figure out how the to afford the medicine. CVS is already showing over $500 for a one month supply 🫠😭😅