#Do I persue it or do I let it go?

1 messages · Page 1 of 1 (latest)

urban wind
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So a couple of weeks ago I had episodes of passing out and was hospitalised for a week. They kept saying it was none-epileptic attack disorder and that all my telemetry showed was when I had an "event" was elevated heart rate. I suggested whether it could be POTs (because I've read this discord, I'm a student nurse, and I like doing medical reading), and they just went "nope, nope, it's non-epileptic attacks". I have episodes in my flat where I go dizzy, I look at my watch, and it will say my HR is at 140. They did a lying/standing HR test, which should show a potential diagnosis if there is an increase >40 sustained. Guess what? My heart rate went from 79 laying to 139-142 standing. But then all the nurse said to me on discharge was "well everyone's heart rate increases when they get up" 😤 I now can't talk to my mum about it and she's completely over anything I say.
So I guess the question is: do I go to my GP and ask again whether it's POTs, or do I let it go and put it down as a non-epileptic attack?
Any help is appreciated 💕💕

lone willow
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Has it happened sense?

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like do you feel ok now?

urban wind
plush compassBOT
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GG @urban wind, you just advanced to level 6!

tame wave
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Ultimately it's your decision, but I would say if it's affecting your day-to-day comfort and ability to do things then it's worth pushing for answers. That's my approach at least :) I have had similar episodes in the past and also have issues with my heart rate (I have inappropriate sinus tachycardia, very similar to POTS) so maybe it could be related, but I don't have an answer for the episodes yet. Assuming you're in the UK, I can recommend going private for this stuff if you're able to, I also didn't have the best luck with cardiology on the NHS, but maybe try with your GP first in case they can help

urban wind
tame wave
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Yeah that's fair, I just wanted to mention it because I had a positive experience with it. The GP should be able to refer you to cardiology if you ask, but might want to rule out some other causes first. If I remember correctly I had blood tests and an ECG before I was initially referred. Let me know how it goes if you'd like, I'm happy to offer more advice later :)

grim tendon
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I honestly would pursue it and head to a cardiologist. If it isn’t pots at least you can cross it off the list! Personally I’ve only passed out once due to pots, but I get really dizzy and my heart rate goes with that

urban wind
# tame wave Yeah that's fair, I just wanted to mention it because I had a positive experienc...

Yeah, I've already had a lot of blood tests (found I have a suuuuuper low vitamin b12 so I'm injections now, and slightly low iron and vitamin d (despite also being on supplements my blood test was low...)). I had a 24hr telemetry which I think they said just found it was high - but I didn't have the chance to tell the nurse practitioner that I was getting up and sitting down a lot... I'll see if I can get an appointment with the GP I get on with (and has been looking after some of my health for a while) ASAP to get things started. Thanks, I may have to take you up on that offer later!!!!

urban wind
grim tendon
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Also! I read that POTS can cause lower iron, I don’t know where, but I remember my mom mentioning it a while ago

tame wave
# urban wind Yeah, I've already had a lot of blood tests (found I have a suuuuuper low vitami...

Sorry very late response! I also had low b12, iron and vitamin D. My B12 stayed stable after about a year and a half of the injections, which was a surprise. I fixed my iron by stopping my periods and vitamin D I'm still working on so no advice on that one 😅 if your heart rate is consistently high, like over 100 even at rest, I do recommend looking into Innapopriate Sinus Tachycardia

plush compassBOT
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GG @tame wave, you just advanced to level 7!

urban wind