Horizons1

I have bounding pulse among other things which I know can be a dysautonomia symptom and posted before about. But sometimes I wonder if my blood pressure medication (metoprolol) is causing it, helping it, or making it worse. My autonomic symptoms started 1.5 years ago, I started metoprolol 1 year ago and the bounding pulse (pounds so hard I can feel my fingers throbbing) about 6 months ago. Anyone have any insight or similar? Thanks!

Kind of not direct on topic but does anyone also get really zoned out or in a daze or trance. It’s one of my most common symptoms. Especially if my heart starts pounding, I just have to sit and stare blankly and zone out until I start to feel better. It’s the most outwardly noticeable symptom I have that my friends and coworkers really notice a lot.

Your symptoms are almost 100% the same as mine and also seemed triggered by covid. Let us know how your tests go!

Seems like a simple question but internet searching yields missing and conflicting information. When standing my heart rate often jumps 30 or more bpm but then usually goes back down after 30 seconds or more. There’s been a couple of days when it stayed high for hours afterwards. So is a pots diagnosis temporary or sustained elevated heart rate?

Right I just want a doctor to acknowledge my symptoms and give me a diagnosis. It’s like nobody knows anything about dysautonomia. So frustrating. Nice to know that we aren’t alone with this stuff though.

Thanks for the insight all. It’s nice finding a place to share and listen to others who have similar experiences. I don’t know anyone “in real life” who has anything similar. Apparently not many doctors know much either. I am on a waiting list at a long covid clinic now. Hopefully the wait won’t be too crazy!

Hi all- I wrote here a couple weeks ago describing my frustrating (and still ongoing) inability to find a doctor who is familiar with autonomic disorders but I took it upon myself to do some extra testing and found something weird (yes I know doing tests on my own is I'm sure fraught with error... but still... here me out). It's been suggested that I have orthostatic hypotension by a couple doctors even though they've never done any tests that confirmed this. Tonight I took many blood pressure readings on my own (again I know there's error room here) but every single reading, I was getting blood pressure readings 20 or more higher standing than laying or sitting. I'd lay down and it would average around 100/65 and I'd stand up, take another reading and it would be 120/85. Every time. My blood pressure is not dropping when I stand... it's going up! Is this weird?! Am I the only one that has this happen? A quick google search makes it seem like that's way less common than hypotension. Thanks for any feedback. I'm getting so frustrated not knowing what is wrong with me. Get dizzy all the time, lots of autonomic symptoms all the time. My latest cardiologist just wants me to go to a long covid clinic and wouldn't tell me anything else. Yes this all started when I got covid, but there's not exactly many long covid clinics around here...

@JennKay Ok that is interesting to hear... I've actually had PVCs most of my life. I thought they had gone away completely since I wasn't noticing them anymore, but during my tilt table test I had one. I didn't know PVCs were a dysautonomia symptom. I wonder if mine are related at all or just coincidentally both there, since the dysautonomic symptoms started a year ago and the PVCs when I was a kid. The whole thing definitely seems like a hard thing to pin down and diagnose since everyone has such widely varying symptoms. Still.. would be awful nice if more doctors were sympathetic and more knowledgable about this stuff!

Thank you so much for the replies! I finally have an appointment with a cardiologist that actually has experience with autonomic conditions. Hoping for some answers. It’s been a battle with doctors telling me they don’t know or that they think I’m healthy and it’s all in my head. It helps I think create a feedback loop where I start doubting myself and if I am making things up. But then I get so frustrated because I know there’s something off in my body. The inconsistency of it all makes it tough too. Some days I feel fine. Others I’m not. I tend to notice waves too that seem like I’ll have a bad week followed by a week or two that are much better. Then repeats again.

Hi everyone... new to the forum... I appreciate this being here and all the helpful topics I've already read. I've been to a cardiologist and neurologist. The nuerologist -thinks- I have POTS but won't diagnose it because he doesn't specialize in it. My cardiologist literally told me there's nothing wrong with me except high blood pressure and anxiety (I really don't have bad anxiety), despite having a pre-syncope episode during a tilt test about 12 minutes after it started (I know that's slightly outside the range for POTS diagnosis). My symptoms (which started the day I got covid a year ago)... -dizziness when standing (lightheadedness- feeling that my head will float away or that I could pass out- but haven't ever passed out) -increased pulse when standing (but not severe like a lot of people with POTS... general an increase of about 15-30 bpm but won't usually stay super high though if I feel bad it tends to stay over 100 where my resting pulse is closer to 75) -bounding pulse almost all the time (my pulse I can feel pounding through my fingertips) -I space out and get dazed, often after eating a meal -bad fatigue if I have a physically active day -sometimes have a hard time catching my breath for no obvious reason- again often after eating -blood pressure is all over the place- I was placed on a low dose of metoprolol because it was high almost all the time during a 24 hour BP test. But sometimes it's super low like 95/55 in the same day that it will be high 130+/100+. Never had high blood pressure before I had covid. -If I drink coffee I get incredibly dizzy - fast head movements or spinning makes everything worse (I feel like is that not a normal dysautonomia thing or is it?) - activities like grocery shopping almost guarantee I feel lightheaded and off I know I dont' have these seemingly autonomic problems near as bad as a lot of people.. but I generally feel off almost all the time for the past year. The thing that makes me question (and the doctors too) is that my pulse changes aren't as severe as POTS patients tend to be. Nor have they found giant BP swings due to posture changes. All I know though is someting is not right in my body. Any thoughts or feedback would be greatly appreciated thank you all!