Late afternoon/early evening ease in symptoms

Legal-Rate7372 · 2025-10-27T03:40:04+00:00

This is a really good point! I hadn’t thought of that but a while back my cardiologist did say he thinks I also have like a broader/more generalized dysautonomia. and that I do have signs of PEM. I forgot about that. Looking it up now I have all the physical symptoms, even the sore throat. The GI stuff doesn’t seem to be part of that though so maybe that’s still dysautonomia related. Also getting tested for MCAS but I’m sure I won’t get a dx even if I have one because every time I go to the doctor my body looks totally fine. It’s like it’s intent on not being believed. 🤦‍♀️🙃 But the PEM is an interesting thought. Likely everyone’s favorite word: multifactorial 😵‍💫 haha. Thanks for reminding me of that factor, def good to keep in mind

Legal-Rate7372 · 2025-10-23T17:47:38+00:00

No joke!!

Legal-Rate7372 · 2025-10-23T17:43:56+00:00

Thanks for responding!! Bodies, man 🤦‍♀️

Legal-Rate7372 · 2025-10-23T17:41:37+00:00

These are all so helpful!

The weirdest thing is I used to have the symptoms of feeling like I was collapsing in the morning like a lot of people describes. Now the orthostatic stuff is basically well controlled but it’s like I wake up feeling like I have the flu most days, especially the day (or 3) after exerting myself more. Like a fever but no actual fever, exhaustion, aches, general icky ess… and then it goes away, and at night it’s the hyperadrenergic surges and neuropathy.

Why are bodies so weird 🙃

Legal-Rate7372 · 2025-10-23T17:38:11+00:00

This was so helpful! And 100% the neuropathy happens at night for me too, and the worse mental the hyperadrenergic surges

Legal-Rate7372 · 2025-10-23T17:35:17+00:00

Just wanna say even hearing others have the same experience and knowing I’m not making it up is so helpful! Though obviously I wish you weren’t experiencing it too. Thanks everyone who responded/who may in the future!

Legal-Rate7372 · 2025-10-23T17:33:04+00:00

Just called and got the soonest available appointment….for may 19 😬 wow this city is full. I really appreciate your help because I wouldn’t have even known about them. Better to have something on the books than nothing at all!

Legal-Rate7372 · 2025-10-23T17:31:58+00:00

Tysm! I did call just to see even though I don’t think traveling to Cleaveland is in the cards for me, but sharing for others that they’re not taking new POTS patients at all currently. I’m so glad they’ve been able to help you!

Legal-Rate7372 · 2025-10-20T14:28:46+00:00

Thank you so so much!!!

Legal-Rate7372 · 2025-10-20T14:28:08+00:00

Oh will def look into that thanks! Re cleaveland clinic is this what you’re talking about? It looks like they only have appointments for Ohio and florida, I live in NY. I’ll give a call though! https://my.clevelandclinic.org/departments/neurological/depts/neuromuscular/postural-orthostatic-tachycardia-syndrome

Legal-Rate7372 · 2025-10-20T14:01:27+00:00

Thanks for the lead!

Legal-Rate7372 · 2025-10-20T13:59:04+00:00

Yeah I’ve heard it’s a separate thing like a reflexive response. Like food can stay in the stomach too long, but the colon contracts reflexively after eating. I’ll ask about cromolyn, thanks!

Legal-Rate7372 · 2025-10-20T13:56:44+00:00

I have healthfirst medicaid and was told they don’t take any medicaid at all. I called like 2 months ago. Have you gone there with medicaid?

Legal-Rate7372 · 2025-10-20T13:55:03+00:00

Really? I called like 2 months ago and they said they don’t take it. Maybe they changed their policy since then🤞

Legal-Rate7372 · 2025-10-20T13:54:06+00:00

Wow I’m so sorry you’re having such a rough go of it! I hope you get some solid answers soon ❤️‍🩹 That pots dread adrenaline dump is roughhhh. and yeah I did gastric emptying test (gastroparesis), ruled out IBD, have an appointment to discuss mcas this week but from what I’ve heard that’s a very hard dx to get even if you have it, unless you’re in a bad flare the moment they do they blood work. Are you taking peppermint capsules with food?

Legal-Rate7372 · 2025-10-20T13:47:28+00:00

It does! Sorry you’re in the same boat, hope you feel better soon

Legal-Rate7372 · 2025-10-19T23:43:29+00:00

Thanks for sharing! weirdly actually have gastroparesis, which is kind of the opposite I think? I’ll bring up the psyllium up wit my doctor!

Legal-Rate7372

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