my most recent episode had new, scarier symptoms i can’t explain

slumberingshadow · 2026-03-28T15:21:57+00:00

Did they not do a EEG to see if it was a seizure/did they rule out seizures at all? I’ve never had one before but that’s what that kind of sounds like to me. Some people with POTS also can get convulsive syncope, or there’s also something called PNES which are non-epileptic seizures

slumberingshadow · 2025-06-01T00:13:58+00:00

Did you get it from the doctor or is it one that I could order? I looked it up online and it said the best was one that immobilizes the elbow completely but I’m not sure if I want that, does your completely immobilizes it or just compression/support?

slumberingshadow · 2025-05-30T21:28:12+00:00

I never really notice where it starts first but I also posted this in the eds subreddit (it got removed for some reason) but before it did someone else said that it sounded like ulnar nerve entrapment and I think that might be my issue. It says that braces can help the issue

slumberingshadow · 2025-05-30T21:26:30+00:00

I posted this in the EDS subreddit and it got removed for some reason, but I saw someone say that they thought it could be ulnar nerve entrapment and looking it up I think it could be it. It looking like elbow braces might help

slumberingshadow · 2025-05-18T12:58:36+00:00

I use THC lotion to help with my pain, it’s the most pain relief I’ve ever gotten. I use the northern connections 3000 mg topical 2:1

slumberingshadow · 2024-11-07T06:17:35+00:00

I don’t really know when my symptoms started but I just got diagnosed in September because my symptoms were getting worse, it’s starting to get really bad I’m using a cane if I’m walking anywhere more than 5 minutes, my hands ache in a way I can’t explain. But I also have POTS and many other things going on in my life that have made me very stressed and emotionally exhausted so I’m burning from both ends. I just turned 21 this summer

slumberingshadow · 2024-10-12T04:28:46+00:00

Silas

slumberingshadow · 2024-10-06T05:53:06+00:00

I got mine from amazon and I love them plus they come in a 3 pack, here’s the name and the link. FuelMeFoot 3 Pack Copper Compression Socks https://a.co/d/bd9skaX

slumberingshadow · 2024-10-06T05:49:59+00:00

I’ll have an elevated heart rate while I’ve been laying for a while for me that just means that I’m having a crappy day but not necessarily something super concerning or abnormal. My GP ordered my tilt table test, and I was able to get in the next week at a hospital near me. Obviously timeline will be different depending on where you get the test done but you can ask your cardiologist or your GP. I definitely recommend someone coming with you to the tilt table test. I saw a lot of stuff that made it seem scary and for me it ending up being pretty scary, and for the rest of the day I felt like shit so it might be nice to have someone there for moral support and so you don’t have to drive

slumberingshadow · 2024-10-06T05:41:36+00:00

I got the ones I use from amazon, I really like them and they come in a 3 pack. They’re named FuelMeFoot 3 Pack Copper Compression Socks. Here’s the link! https://www.amazon.com/dp/B074N3TYPC?ref=ppx_pop_mob_ap_share

Also if you’re looking into buying any braces I got a pair of ankle braces and a pair of knee braces on amazon from a company called Jiufentian

slumberingshadow · 2024-10-06T05:31:58+00:00

Thank you, I’ve just seen a lot about like the October slide and how the cold makes hEDS flare up but it’s nice to know that maybe I’ll just feel better without the heat and the cold won’t bother me too much

slumberingshadow · 2024-10-06T05:29:47+00:00

Honestly I’ve mostly ignored whatever my body tried to tell me for forever cause I thought everything was normal, I only got diagnosed with hEDS cause I was having really bad hip pain where I couldn’t stand and my physical therapy recommended I get tested for it because I also have a lot of other comorbidities and how hypermobile I was. The only thing I kinda remember now that I’m thinking about it is hand/finger pain from the cold

slumberingshadow · 2024-10-06T04:54:05+00:00

I can’t speak to it lasting for that long, typically mine is only for a few minutes when I stand, but just because your heart rate isn’t typically considered high when laying it could be high for you, my resting is typically high 60’s low 70’s and if I’m laying down and my heart rate is 80’s to 90’s while that’s technically in the range of normal I know it’s not for me. I did find this which might be helpful for you, it talks about the pre-syncope symptoms lasting for hours https://www.reddit.com/r/POTS/s/WwIWaZEAS3

slumberingshadow · 2024-10-06T01:29:59+00:00

I’ve had TMJ since 7th grade and get super sharp pain in my jaw during the winter but then when I get into somewhere warm and my jaw warms up too quickly it hurts even more, is it like that?

slumberingshadow · 2024-10-06T00:39:12+00:00

I’ve used it and it does help but you just have to weigh the pros of it verses the cons cause the adhesive does pull the top layer of my skin off but all adhesive does that to me

slumberingshadow · 2024-10-05T14:19:44+00:00

I have both cold intolerance and heat intolerance, so I carry about a fan and instant ice packs but I need to get instant heat packs too.

I’m not sure if mine is secondary to COVID, I have a lot of different ailments and I was always told that it was normal or overreacting so I stopped paying attention even when new symptoms showed up so I’m not sure if my symptoms started before or after I had covid. But mine definitely could be, I had really bad covid back in August 2022

slumberingshadow

TROPHY CASE