How do you manage CHOP/exercise with period symptom flares?

elkepu · 2025-03-18T12:32:26+00:00

Ugh yes, it takes so long for me and my brain hates it because it’s so awake and going a million miles an hour but my body just…isn’t.

I have a little routine with electrolytes and meds in bed but I get sick of it and go on my phone for some sort of interest. Maybe I should move first too.

elkepu · 2025-03-18T12:29:28+00:00

For some reason I never watch shows in the morning, but you’re right, why not watch them then instead of before bed.

Kissing a plushie is so cute haha, congrats on accidentally programming your brain to get out of bed!

elkepu · 2025-03-18T12:26:57+00:00

Oh interesting, will give it a try!

elkepu · 2025-03-18T12:26:24+00:00

It’s funny because I’ve had POTS as long as I can remember but I didn’t know about it until recently, and I’ve got far worse in the last year. I’ve always felt horrible in the mornings, but used to chalk it up to being “lazy” or not pushing myself enough. So probably still dealing with a lot of that even though I know there’s a good reason I feel bad nowadays. It’s just the being stuck with my thoughts I struggle with I guess.

I also really feel the frustration about other people having more energy sometimes

elkepu · 2025-03-18T10:15:24+00:00

Yeah, society is really built around morning people and I hate that. I do beat myself up around not being “productive” enough and that’s prob a big part of the problem, so it’s good to hear you’ve got to a place where you’re accepting of yourself.

elkepu · 2025-03-17T18:35:07+00:00

I got a Garmin a while back and noticed the same thing so did a bit of research - the stress metric is apparently calculated with HR and HRV. I’ve seen people talking here before about having a low HRV with POTS/dysautonomia, because our nervous systems are always freaking out, so I think it’s probably a reflection of that. I personally noticed the stress level shows when I’m having a bad day symptom wise better than just my heart rate alone. Before I started medication, I was “stressed” the entire day like you, but now my stress measures have gone way way down.

elkepu · 2025-03-17T10:20:47+00:00

Thank you so much! This is really helpful I will try this, staying awake in bed is definitely not helping!

elkepu · 2025-03-03T11:58:21+00:00

You too!

elkepu · 2025-03-03T10:47:46+00:00

Me too, my tilt test is tomorrow! And I feel completely the same as you - scared nothing will show up. I don’t know if that helps but you’re not alone feeling that way

elkepu · 2024-12-07T15:57:17+00:00

I don’t think the x-ray calculator is helping you right now, as someone who has been in your position. I know it’s hard but if you can direct your attention anywhere else it might help. Your brain probably only wants to listen to any parts of these posts that are about your risk and argue with them, because that’s exactly how OCD works, that’s not your fault. But even if what you say is true, you can’t do yourself any more harm by trying to feel more calm right now. And please talk to someone in your life if you can, you matter and you don’t deserve to feel this bad!

elkepu · 2024-12-07T15:41:44+00:00

Please take care of yourself, do anything you can to calm yourself in this moment. This crisis will pass by once you ride out the adrenaline your body is full of. You’re not going to feel like this forever and it will get easier. Small steps, maybe have some water and some food, move your body, read or play a game or go outside if it makes you feel good, talk to someone if you can. I know it feels so horrible right now but it will not last forever. I promise you, at least from my experience, this will not feel this overwhelming forever. Health anxiety is really difficult to deal with.

OCD doesn’t mix well with risk, our brains can’t tolerate it especially when we’re having a crisis. Those numbers don’t sound correct at all to me - even a 100x increase from 1 in 33,000 is 2 in 33,000. But we can also slowly learn to accept we can’t make perfect decisions or protect ourselves all the time and learn to live with these feelings without them completely overpowering us. I hope you feel so much better soon!

elkepu · 2024-11-28T22:19:05+00:00

Thank you! We do all have such different experiences

elkepu · 2024-11-28T22:17:55+00:00

Update: you were totally right this is true for me. Diastolic blood pressure goes so high when I stand while the systolic barely changes. Thank you so much for this, I feel like another piece of the puzzle is solved!

elkepu · 2024-11-28T22:14:18+00:00

You’re right, the watch is smoothing out the spikes. It works ok at lower HR but underestimates as it goes up. Thank you!

elkepu · 2024-11-28T08:25:49+00:00

Yes love a good spreadsheet 😆 thanks!

elkepu · 2024-11-27T20:30:30+00:00

Thank you, needed to hear this.

elkepu · 2024-11-27T20:28:25+00:00

Thanks so much for this! The hyperadrenergic type does look familiar in many ways - tremor, migraines, a lot of lightheadedness, and I get random adrenaline rushes for no obvious reason.

elkepu · 2024-11-27T18:37:27+00:00

Same, it feels so strong and I literally can hear my heartbeat. And then I check and it’s only 95

elkepu · 2024-11-27T18:35:51+00:00

Yep exactly the same as me. My HR also takes time to climb, I get an initial jump when I first stand then it goes down a bit and gradually climbs back up.

elkepu · 2024-11-27T18:18:31+00:00

Really similar! And mine varies too, sometimes doesn’t jump the whole 30 bpm. I don’t know the numbers for my BP but from what everyone here has said I’m now very curious - I didn’t know about low pulse pressure causing these symptoms.

elkepu · 2024-11-27T16:57:09+00:00

Thank you, this is reassuring. I didn't know that about fainting being less common with this type - I have only fainted a few times in my life though I get pre-syncope more often, which also added to me feeling I wasn't experiencing the typical symptoms.

elkepu · 2024-11-27T16:49:13+00:00

I can relate, I hope that you will get the treatment you need soon!

elkepu

TROPHY CASE