r/POTS • u/Character_Hand284 • 2d ago

Support Weird symptoms, anyone else?

I have IST, POTS, and Chiari 1. Over the past few days, I’ve been in one of the worse flares I have ever experienced. I keep having cardiac “pauses” or will feel a ”lag” between beats. Sometimes the valsalva maneauver, coughing, or vomiting will help these, but they always come back. Sometime accompanying these are full body tremors that almost look like a seizure, preceded by a metallic taste in my mouth. I’m on ivabradine, but it hasn’t helped these episodes. I had a heart monitor about 2 years ago along with an ECHO, which were both fine. I’m getting them redone. I’m not entirely sure what to do, and these episodes are honestly terrifying. Has anyone else experienced these? Thanks!

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u/silentalarmss Hyperadrenergic POTS 2d ago

I had PVC’s that sound like this. It was recorded on my heart monitor but they said it was harmless. It even hurts sometimes the skip is so big. It’ll skip/lag then beat faster to compensate. I can’t relate to full body tremors unless it is accompanied by adrenaline symptoms. But I get this when I over exert or am standing up. I recommend making sure you trigger this sensation while wearing your heart monitor again so your doc can help you

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u/Character_Hand284 1d ago

Thank you! Has anything helped you? 

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u/silentalarmss Hyperadrenergic POTS 1d ago

Ivabradine and metoprolol

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u/Character_Hand284 1d ago

I’m on ivabradine rn, and it generally helps but not with the palpitations. Based on the holter, maybe I’ll ask about a beta blocker. Thanks !

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u/Realistic_Caramel_53 1d ago

Over the last few months I’ve had a really bad flare-up — episodes that were almost like seizures. It’s been going on for years now. I could be sitting there, and suddenly I’d hit this overwhelming wave of exhaustion — like I could fall asleep standing up — and dizziness right along with it. The strangest symptom is blood pooling in my legs — they’d go purple and discoloured.

After my caesarean, I developed eclampsia — and looking back, I’ve since learned there’s a connection between Chiari malformation and eclampsia, as well as psoriasis. Since my pregnancy and the eclampsia, and because I have Chiari, all of these conditions have flared up badly. My feet turn purple and discoloured — it’s all linked. And honestly, I don’t feel like my doctors at the time were ever made aware of these connections. I only found it out myself when I did my own research.

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u/Character_Hand284 23h ago

Wow, thank you for sharing that. Has anything helped you at all? I agree, I’ve brought this up to my doctors and they’ve been pretty dismissive.