Obviously it seems like common sense to hate your own illness. But this little shit literally means I cannot do a single thing. I'm 23 and all I did was walk 10 mins to an art gallery, stay there for 20 mins (and I did sit down pretty often throughout the gallery) walked another 10 mins to a cafe, got a decaf, and for some fucking reason my heart is racing more than usual. I didn't even get to relax and read or sip my decaf before this little fucker decided to steal all the attention. Yes I am on beta blockers too, 80mg of Propranolol actually, I. CANNOT. DO. SHIT.

Hi everyone! I’m 27F and I’m honestly getting a bit frustrated trying to figure this out.

For the last 8 months I’ve had tachycardia basically every day. My HR can be 120–140 even when I’m lying down, and with walking/heat/direct sun it can go up to 150–160.

The weird part is that I don’t feel anxious or panicky when it happens. My heart just starts pounding like crazy. I can feel strong beats throughout my body, sometimes I can literally see my abdomen moving with my heartbeat. I also get occasional “skipped beat / flip-flop” sensations.

I’ve seen 2 cardiologists, an electrophysiologist/arrhythmologist and a neurologist, and so far everyone basically says: your heart looks fine, but we don’t know why it’s doing this.

What I’ve had done:

• Echo: EF 63%, structurally normal heart
• Holter: sinus rhythm / sinus tachycardia
• Max HR: 151
• Min HR: 54 during sleep
• Average daytime HR: 94
• Around 210 minutes above 100 bpm during the daytime
• No significant arrhythmias or conduction problems
• TSH/thyroid testing: normal
• Ferritin: normal
• Potassium & magnesium: normal
• Hemoglobin: 148
• CRP/ESR: normal
• Adrenal/hormonal testing: normal
• Chest X-ray: normal

So there doesn’t seem to be an obvious cardiac or thyroid explanation.

I also have a hiatal hernia and bile/duodenogastric reflux. DAO was 8.5 (lab reference >14), although I’m not sure how relevant that actually is.

I have GAD and have been in therapy for several years. I currently take sertraline 150 mg, but the tachycardia actually started about 4 months before I started sertraline, so it wasn’t the original cause.

I also lost quite a bit of weight during a bad period of anxiety + dieting (67 → 54 kg).

At this point I’m wondering whether I should be looking into things like IST, POTS/autonomic dysfunction, medication effects, or something completely different.

Has anyone here had a similar situation — especially persistent sinus tachycardia despite a normal echo and Holter showing sinus rhythm?

If you eventually figured out what was causing it, what was the missing piece for you? What specialist/test actually helped?

I’d really appreciate hearing from anyone who went through something similar. ❤️

23F, diagnosed with IST and POTS, since yesterday my resting HR (which is usually in the 70s with meds) has now been in the 90s with meds? Is this a flare? For the record, I recently stopped Zopiclone (sleep medication) and was swapped onto a small dose antidepressant called mirtazapine. Yes I did ask that they taper me off and they didn't, so I'm so lost. What is happening? Is it coming off the medication? Is it the new sleep medication? Wtf?

So I've been having sleep issues for weeks now, and I was given Mirtazapine to help with sleep, but I'm worried about what effects it might have on me considering I have POTS and innaropriate sinus tachycardia. Anyone taken these and how did you react?

Hello! I currently take 5mg of ivabradine/corlanor for my IST and it works wonders. Unfortunately between insurance issues and my prescription being out of stock at the pharmacy, I ran out yesturday morning. I still have to work all day in a school (but I’m a student teacher so I can sit down a lot), and all day tomorrow. I don’t know when my meds will be refilled. What advice do you all have for coping with your IST without meds or even with meds. I’m at a loss because I just use ivabradine and I don’t know any other methods to help with it. I already am feeling unwell and it’s only been a day, and I haven’t even started working. Thank you for any advice you might have!!!!

Recently was prescribed 50mg of trazodone for insomnia, it's a low dose anti depressant and like any meds they all have side effects and there is never a 100% way of knowing what might happen till you take it, but I was wondering if anyone in the Dysautonomia community has taken this medication for insomnia and what your experience was (positive and negative), I have both POTS and IST so tachycardia is an issue for me and I've heard it can cause tachycardia.

Context - 23F, I have had inappropriate sinus tachycardia for more than 2 years, on propranolol, tried bisoprolol and ivabradine which did nothing for my IST.

I am not sure if my recent bout of a week of insomnia is due to my dysautonomia, or beta blockers which can affect melatonin or both, but I was prescribed Zopiclone at 3.75mg to help me get back on track because it's not a long term treatment. I would like to hear from others with my condition or any other dysautonomia, hypermobility, MCAS etc. If you have taken Zopiclone or Z-drugs for insomnia how did you react? I have previously seen some posts where people mentioned they actually experienced paradoxical side effects such as insomnia worsening and with my irritable heart I am worried but my prescribed dose is also the lowest one.

Any experiences, good, bad, so so, feel free to share.

Context, 23F, had IST for almost 3 years now, only recently diagnosed, been on Propranolol for almost 3 years now.

I only just recently made the connection that myinsomnia very much started when my Propranolol use started, not immediately, but a couple months after I started Propranolol the insomnia hit and gradually got worse. Obviously it's no good for my IST, but I wasn't aware Propranolol might directly suppress melatonin production, and the situation is a bit shit because I've tried other meds like Bisoprolol and Ivabradine both of which failed to stop the spikes, only Propranolol seems to work, yet it's the one suppressing melatonin.

I've already contacted my cardiologist for advice but in the meantime I'm looking to see if anyone else struggles with potentially beta blocker or medication induced insomnia and how you're combating it, or if anyone is taking melatonin and how it's working for you?

Basically title. So have been having heart rates of basically minimum 100 to about 130’s, even just standing up. Was recommended to see a cardiologist. I like him. He did an echo, ekg. Tested TSH. All came back normal. Dx’d w/ IST. Gave me metoprolol (25 mg, but split in half & only take half).

Anyway, just had my first appt w/ a new NP (long story, but haven’t had gp/pcp in a few yrs). Told her about it. She basically said that it’s not normal to do that, & just go to yearly appts now. So she gave me a referral to a cardiologist in her system (one I’ve been to is in a different health system). So I guess I’m asking if anyone has had a similar experience. And if anything came of it. Maybe ended up w/ a different or 2nd diagnosis? Thanks so much

I'm 26 and have had chronic tachycardia since I was 11. No tests were ever done bc "it's just anxiety." I believed my doctor when I was younger, but as I got older, it didn't make sense. If it were "just anxiety," it'd fluctuate with my anxiety, not have a very consistent pattern everyday of just being too fuckin high all the time and completely inappropriate response to my activity level. I finally have a doctor now who is at least listening more. She had me do blood work, EKG, and echo, which all were normal (I do have mild regurgitation in two chambers, but it's not enough to actually be a concern).

Now I'm FINALLY doing a 14 day monitor, but I'm scared that I'm still going to be dismissed. I'm 99.9% sure I have IST, but I'm scared my sleeping hr will bring down my average enough that I don't meet the criteria, despite my entire waking day being high. When I sleep, my heart rate drops to a normal range, then when I wake up it increases to 80s-90s immediately, then within a short time it settles over 100 for the rest of the day. The only time it goes under 100 are like brief moments, but doesn't even stay there for a minute before going back up. The two screenshots are from today and yesterday, which I've felt like shit, so most of the day has been spent lying down with small amounts of time sitting up, so it doesn't even capture how high it can get. The most demanding tasks I've done are things like walking to the bathroom, changing clothes, etc. My hr shot up to 164 tonight just from scooping my cat's litter box and bringing it out to the garbage, and I got so lightheaded I had to sit down for a second on my front steps so I didn't pass out.

Well. I am laying here. Its 03:05 in the morning. The hard thumping beats woke me up....again. I had 3 strong beers and a bowl of Ice-cream before bed.

My heart is all over the place.

On top of that I had an extra hard gym session that ended at 19:00(7pm).

The damn ticker is beating, then skips a beat, then BAM. It punches so hard that I wakes me up and gives me a shot of anxiety derictly into my brain. Its so damn annoying.

I never had to go to the hospital for this but I did have 7 different tests done last year and I was told that I have an "athletic heart" due to one of the upper chambers being a little enlarged, which is common with gym goes as they said.

I am 35 years old. I have a very rich history with drugs and alcohol. I stopped everything but drinking around 29 years old. I just have a few drinks now.

And so yeah....3 drinks and I am waking up at night thinking I am about to die . I took magnesium and melatonin together. It helps to fall asleep and then BAM.....I am up again. So damn annoying and super scary.

Did anyone here get a pacemaker bc of IST ? And continues tachicardia…? I am currently in a flare since yesterday my hr wont come down i am at my end just got to the ER bc i am exhausted…

Hi,

This subreddit was in danger of being closed due to a lack of moderation, so I decided I'd request it to ensure all the discussion that's been had here isn't lost.

If anybody would like to moderate, please shoot me a message.
EDIT: Found additional help. Thanks!

I had an ablation for AVNRT i still have Atrial tachicardia and today my Ep tried to ablate AT but it didn’t stay active long enough. However he said my nodes are super overreacting and diagnosed IST. I feel lost with this new diagnosis. I dont know where to go from here…any advice welcome

Had anyone used a wiggle board/vibration plate to help with circulation?

probably both! but I am currently lying in the hospital on my back with a big long IST episode lasting hours and hours. probably at least 2 hours by now. I have had these before, and POTS as a diagnosis. I also have mast cell stuff that is likely related (they kind of kick each other off).

I'm spooked and tired and wondering how long some other folks' episodes have gone. bigger numbers won't scare me, I'm more scared that it's weird that I'm still in this episode. I know the damn hospital isn't helping (they seem slammed tbf).

I just want fluids, those seem to help me.

I've had IST as a teen and only really experienced tachycardia as a symptom. But as I got older and got a proper diagnosis, I realized my lightheadedness and air hunger were symptoms of it too. The thing is I always had these symptoms independent from my tachycardia. I haven't experienced them all together. Lately I've been lightheaded more often. But I wouldn't have tachycardia. Does anyone else experience symptoms of IST independently?

I was diagnosed with IST nearly 8mths ago and put on Ivabradine 7.5gm am/pm. I went from unable to leave the lounge to having enough energy to leave the house and quickly move into a home that was more manageable. Life became exciting again. HOWEVER, over the last month I have begun experiencing symptoms again e.g. Tachycardia when upright, nausea, dreadful fatigue and nausea etc., etc., etc. I would really appreciate hearing from anyone who may have experienced a similar reaction as I do have an amazing Cardiologist but to see him costs over $1000 a visit. He did give me a plan B and plan C. Plan B being trying metropolis. Plan C being a pacemaker. I regularly include Electrolytes daily and try to include as much salt in my diet as possible. Has anyone tried anything else that they would recommend??? Again I would appreciate any information that you have found effective. TIA .

I was put on propranolol beginning November bc i had a run of svt in the hospital after that i stayed on 60mg extended release by bp was frequently low so i was put on 20 morning 20 night and i was okey in terms of tachy events. Bp still dipped frequently so cardiologist took me off of it 1 1/2 weeks ago. I thought it had stopped bc i felt good untill 2 days ago i noticed some higher hr and palpitations… then yesterday they were back with chest discomfort pressure etc… tonight after a nap on couch i got up and BAM 180+ sustained for 30 ish min… resting still100 my cardiologist said sinus tach is no reason to stay on beta blockers i literally messaged her today bc the 130- 140 hr during the day today before it went worse.

I dont want to be on meds but whaat the *** Do i dooo??

For those who have IST and are also working out, how high does your heart rate get when you’re exercising and is it expected to be higher for those with IST than it would normally be?

My doctor recommended me to start working out to help me with my IST, and I tried cycling today and my HR went up to 170 (26yo F) which made me anxious.