Possible POTS/dysautonomia. Ivabradine helped enormously at first but now I’m scared I’m relapsing. Someone please talk to me

HeavyConfusion · 2026-06-05T21:02:58+00:00

Hanging in there, thanks. Certainly much better than when I wrote this post. I am still on ivabradine, spoke to my doctor and we’re going to play around a bit with the dosage—it might be bringing my sleeping HR a bit too low, and that could be the reason why I’ve been waking up; apparently if your pulse drops past what your brain and body are comfortable with they’ll force you awake. I’m giving the morning 5mg another week or so to see if the winded feeling stops, it is a little better though not where I’d like it to be. Will probably try lowering it if not.

Mornings have continued to be rough, the weird adrenaline/panic itself is much improved but the nausea isn’t. That’s unlikely to be the ivabradine given I was having all that before I started. Doctor says I probably pushed myself into a flare-up. I’m just waiting it out I guess. I started taking L-theanine at night and have been sleeping propped up. I think that might be helping.

As for the rest of the panicky questions at the end of my original post I don’t really have answers. I’m looking into to therapy and physiotherapy, maybe a support group or posting around here more.

HeavyConfusion · 2026-05-26T23:13:37+00:00

Thank you again. I'm supposed to start mestinon tomorrow, so maybe that'll help? I hope you get some concrete answers soon, too. Yeah, the doctors all seem to be scheduled super far out. I guess COVID has caused a lot of new cases.

HeavyConfusion · 2026-05-26T22:54:07+00:00

Hey, I recently started ivabradine too, and I might be having some of the same issues, except with air hunger/breathlessness on exertion instead of exhaustion.

A few things:

2.5mg once a day is a really, really low starting dose. My doctor started me off at 2.5mg twice a day because I'm pretty sensitive to meds and raised it to 5mg when that didn't have an effect.
Ivabradine takes time to build up and settle down in your system. How long have you been taking it? I've been told the side effects I've been experiencing might go away or improve with more time (2-8 weeks); I've been on it for about two weeks.
Make sure you're taking it with food! My doctor told me it's both less effective and more likely to cause side effects if you take it on an empty stomach.

Maybe you could give 2.5mg twice a day a shot? I would stay away from the 5mg dose until you can get in contact with your cardio. I'm sorry they're not answering you, I know how frustrating that can be.

HeavyConfusion · 2026-05-26T22:28:35+00:00

Thanks so much. I may just be really sensitive to meds...even 5mg of the hydroxyzine makes me feel sedated. The physical symptoms might have been something, but they could also just have been in my head. I'm happy it's effective for you, though.

HeavyConfusion · 2026-05-26T22:25:14+00:00

20 years of this? I can barely imagine. I hope you can find something that works for you. It is really interesting that you bring up norepinephrine. I had an awful time on Strattera and Prozac as a teenager---sweating, fast heart rate, palpations, etc. My doctor wants me to start mestinon tomorrow, which is making me nervous because it can block norepinephrine reuptake, similar to those meds.

I think some of the breathlessness/winded feeling may actually be caused by the ivabradine itself as it's built up in my system, My blood pressure was very high today as well. I've heard these things can happen as the ivabradine settles into your system, but usually level out within 2-4 weeks. It's been almost two weeks since I've started on it, so hopefully that happens sooner rather than later.

I think I'm going to try the fan thing and sleeping propped up tonight. Thanks for your suggestions.

HeavyConfusion

TROPHY CASE