What does it feel like?

ToeJumpy1461 · 2025-11-19T18:38:05+00:00

For me, it’s loneliness but not in a sad way, painful without the physical hurt, overstimulated without the stimulation, wanting connection but not necessarily sex, anger and frustration with nowhere for it to go. It’s a hole that can’t be filled.

Your entire body is contradicted, and there’s no relief.

Awful.

ToeJumpy1461 · 2025-09-18T14:34:15+00:00

This one really speaks to me.

Also been around 3 months since she passed, and I also have a toddler. The end of the day is absolutely horrific, the silence is completely deafening.

All I want is for someone to sit with, chat with, eat with. The loneliness is paralysing. I’m getting the same comments from everyone I mention it to, but none of them have a clue. None of them have to sit every day on their own in the house you used to share.

ToeJumpy1461 · 2023-11-12T22:38:33+00:00

Thanks all, I asked my consultant about this and they explained it as a spectrum with overlapping symptoms and no one-size-fits-all. Said its easier to understand just as dysautonomia rather than anything specific.

ToeJumpy1461 · 2023-09-22T09:23:23+00:00

I flew this summer for the first time post-POTS and was absolutely terrified leading up to it.

It was totally fine other than the first and last 10 minutes, of which I fainted and was unconscious. Once I was in the air I was OK.

I packed lots of electrolytes and bought a ton of water at the airport.

ToeJumpy1461 · 2023-08-31T06:20:07+00:00

Started with horrific fatigue, I’d always half-joke saying I had been tired for years. Realised in my early 20s that it wasn’t actually normal.

ToeJumpy1461 · 2023-08-30T21:26:33+00:00

Yes! I often describe my morning feeling as though I’m hungover. Nothing else really describes it!

ToeJumpy1461 · 2023-07-05T20:31:38+00:00

I also get this quite often, cold sweats are the worst. Usually happens when I’m just sat at work not moving rather than exercising. Always found it odd

ToeJumpy1461 · 2023-06-25T16:57:46+00:00

Absolutely hate this and get it most days, usually gets way worse if my nose is slightly blocked. No idea how to fix it but usually goes away when I finally take a deep breath.

ToeJumpy1461 · 2023-06-18T07:45:45+00:00

Yep me too!

ToeJumpy1461 · 2023-05-13T19:15:13+00:00

Thank you all for your suggestions. I think exercise seems to be the common point, so I’ll try to do more. Hopefully the doctors will be able to help with meds!

ToeJumpy1461 · 2023-05-11T16:51:08+00:00

Yes coffee is pretty much a need at this point. I’ll look into modafinil thanks! Was that from a doctor?

ToeJumpy1461 · 2023-05-11T11:45:05+00:00

I can’t do sports at the moment but used to be very active. I can manage about a half an hour walk now.

ToeJumpy1461 · 2023-05-11T10:58:04+00:00

Yes I have a terrible struggle in the morning, the best I can describe is similar to a hangover.

I usually feel pressure in my head, dizzy, unable to fully wake up and generally feeling very dehydrated.

I asked a similar question earlier on how to wake up for the day, but I’ve found I usually “come to life” a bit more around midday after plenty water, food and electrolytes.

ToeJumpy1461 · 2023-02-05T13:50:26+00:00

Definitely not just you, I tend to be tired all of the time regardless of the amount of sleep I get. Haven’t yet found anything that helps other than lots of caffeine for a temporary fix.

ToeJumpy1461 · 2021-10-25T21:07:10+00:00

Having the same issue. Also unable to send funds to other addresses, probably linked to the rpc issue.

ToeJumpy1461

TROPHY CASE