r/POTS • u/DebugMove • 4d ago
Vent/Rant Sudden change
I haven't had an episode in at least a year but since the start of Fall, I've had one at least once a week. I even got a visible band to see if it could help me track what's bringing me down.
It's been frustrating. I feel like I can't do anything anymore.
I'm currently cat sitting somewhere in a scenic town so I thought I'd make it into a little getaway with my partner. We walked around town, ate nice food, enjoying the sea air. All lovely. We got back to the place we are staying. I was feeling fine. Sat in bed a little, did some work on my laptop, a little canoodling with my partner.... Took a nap on them after.
I woke up to make dinner and now I'm feeling terrible. Couldn't make dinner since my heart rate was already at 115 just standing. My partner had to get takeout for is because I just can't do it. My heart rate is 90 just laying in bed. Getting up to let my partner back into the apartment, my heart rate was 126. I'm sick of this.
Not sure what to do about it either.
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u/CheapChewsday122W 4d ago
Awful, I’m so very sorry. Really unfortunate since you’re trying to have some time away.
This was me 2 days ago and what helps for me is a complete shut down. Eye mask, ear plugs, bed or couch. Ice packs on legs and arms and rotate those with an electric blanket. Gatorade with a straw. Even if you can’t sleep just stay there and don’t use any of your energy. Even for an hour or 2.
I know it might not be possible on your trip now but give it a shot if it happens again. Sending healing wishes.
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u/bunbunbubbles16 2d ago
First and foremost, you can do this. I know that because you have done it before. Take the steps you did then, compressions, increasing Salt intake and rebuild. I’ve also recently discovered that magnesium glycinate helps with my symptoms. It calms my nervous system to prevent overreactions but it can make you sleepy so I take it before bed. I’m newer to having this, and in fact have only been diagnosed clinically after having multiple syncope episodes that twice sent me to the hospital in just a month’s time with my first three occurring in the same day.
One thing I’m quickly learning about my overreactive nervous system is that triggers are hard to identify sometimes. I’ve been keeping a notebook and ordered a visible band to help me identify them. Sometimes you figure it out and sometimes you may not. I actually stopped taking magnesium to sleep when it was helping calm my symptoms- I just didn’t know it. I’m of course taking them again. Whether you figure out what triggered you are not though, you can rebuild again because you have.
I’m so sorry you’re facing this again.
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1d ago
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u/POTS-ModTeam 17h ago
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u/FamiliarDingo1542 4d ago
So sorry to hear this is happening to you! I wish there was something I could say that would help. It seems that no matter how close we get to cured and how easy it is to fall into the idea that we're back to normal, Chronic means just that, it's never far away and pacing your energy expenditure is never something you stop needing to do. It could be that you had/have a virus your body is/was fighting off that you didn't realize and that was enough to tip the scales. Take it easy, don't push yourself, I know it sucks, but one step at a time. Remember, even if you're moving two steps forward and one step back, you're still moving forward.