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  1. Wow! So much helpful info, I love how much I learn here. I take a lot of notes lol I just wanted to follow up to update that indeed hydration and especially electrolytes helped a lot, and things settled down to a dull roar after a week. Not back to baseline but SO much better than before. My HR is closer to my normal range, and most of the time seems pretty reasonable for what I'm doing, my position, what's going on around me etc. Thanks again!
  2. Thank you all who replied... it is evening out I think and hope but definitely slower going than I was expecting. I'm so used to a high HR it almost scares me more when it goes low. I'm trying to take it easy but not lie down *all* the time, and be extra good about meds, electrolytes, hydration, and compression. I shouldn't complain. I was just worried about heading into a big flare after doing so well lately. I'm glad it sounds like a normal enough experience Best to all
  3. I'm not sure if this is a flare, or from the procedure, or the anesthesia and I'm curious... Had a upper endoscopy this a.m. with no issues I know of. My anxiety wasn't even too bad... notable bc I am phobic about medical stuff especially being under. I've had one surgery b4 using propofol and had no problems. Normally my issues include tachy episodes, rarely Brady, although generally stable on mestinon. I've been doing well and was able to up my step goal even. I felt fine when I got home... just restless so I did some light cleaning. Big mistake. The lidocaine wore off and I realized I'm actually quite sore. The iv site is very painful as well. But I rested for a while and got ready for bed. Except I keep waking up with a LOW hr. And I'm cold. Normally I could heat Connecticut and parts of Rhode Island. I don't know if this is the start of a flare, normal recovery, POTS normal recovery, or some sort of issue, so I'm curious what others have experienced? Sorry I'm always popping on with questions. I research myself, but so often info is limited or conflicting, and then I know my body doesn't do normal... All the best to everyone!
  4. Not sure but one of the many ER trips, a doctor told me that sometimes changing position esp rolling over will hit or press on the vagus nerve and cause a sudden HR change. I would imagine we are more apt to have this, or be more sensitive (neurologically I mean)? Still an uneasy feeling when it happens
  5. For me it is the only thing that made a difference. Dose matters a lot tho... too much and I'm all off kilter, sweating buckets, can't breathe. Too little, doesn't work. I have to take it 4x a day, and the dosing is funky bc I need diff amounts at diff times. 45mg 30mg 30mg 45mg
  6. Hi, yes I did come out of it but not for years bc I was not yet diagnosed. Everyone tried to blame it on my anxiety. And later on my weight, bc I had to stop exercising. It began one night out of the blue after a series of viral infections. I woke up bone dry and did not sweat the whole duration. I started having sudden episodes of tachycardia, only resting or sleeping. And presyncope. I've been having panic attacks since I was little... I hate them and they suck but I know what is and isn't one for me. Everything that should be stable wasnt... temp, BP, HR. I had my gallbladder out in an emergency surgery, and weirdly I woke up sweating! And my heart calmed down. But only lasted a few weeks. Later on a new Dr explained that they often use pyridostigmine aka mestinon to reverse anesthesia. Anyway I found a specialist and was diagnosed and started on mestinon. With that, calf compression sleeves, hydration and electrolytes I'm mostly stable again, able to function decently well as far as that goes. It is a balancing act, trying to be gentle with myself but not get too deconditioned. The flare consumed my life, I barely got out of bed, and both sleep and waking hours were interrupted by the random attacks, which were really scary.
  7. Just as a matter of record, had the pfizer with basically no symptoms. First dose I had a 5 second adrenaline rush, that was it. Nothing with second. I did have changes in HRV and HR but it was mild and brief. Honestly, even a cold has more of an impact for me. And I had the flu in 5 countries before I gave into getting the shot. The final straw was the flu that caused a severe 5 year flare.
  8. I am on Klonopin and it generally behaves. That said I have had a LOT of the socalled paradoxical reactions ans have finally figured out that for me, it is my body overcorrecting. Like if I take something sedating my body says oh no not on my watch! And my heart races like a hummingbird. The only way around it again just my own story, is starting all meds with a tiny baby dose (like a tenth or less) and fighting thru any side effects if they are not dangerous. My first psychiatrist taught me that approach, and it really helped. Also, drugs are prescribed at a standard dose usually, based on what was studied and approved... but many of us need a lot less. Titrating slowly, i can find the best dose. I don't know if all of us have that sort of body reaction, but sharing in case it might help anyone else.
  9. Wow thank you all for sharing. It is helpful to have something to show my docs I am not the first. I have colored my hair hundreds of times... from black to red to blonde to bleaching. No special precautions. That said, my heart related symptoms didn't really start until 2013, after a virus. Today I did a custom color blend, 3rd time using it. While waiting, my heart rate went to 137. I sat down and got it down a little but it did not fall until I rinsed it out in the shower. My hr then was lower at that point than sitting with it on. I definitely have a funky immune system, and have had all kinds of weird reactions but this was so different. Henna is super messy but thats my plan. Definitely don't want to do this again.
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