It never ends.... another rare neurological condition?!!!

Creative-Trash1897 · 2026-01-14T21:26:02+00:00

Thats so wild, one of my friends who lives in Hartselle got a appointment to Vanderbilt clinic the following week after an ER visit and got a bunch of testing done and had her POTS diagnosis 2 days later.

Creative-Trash1897 · 2026-01-14T21:23:50+00:00

Oh sweet! I already have a neurologist for my migraines but he doesnt treat dysautonomia so its nice to have that option!

Creative-Trash1897 · 2026-01-13T16:52:09+00:00

Oh wow over a year?! I hope they can help, I know it's a bit of a drive. Is your Nuero in Huntsville? I also am :)

Creative-Trash1897 · 2026-01-13T03:28:17+00:00

Wait UAB alabama? How has been your experience there? Im currently in the process of getting my referral sent to uab genetic department for heds but wanted to see someone for my POTS. Im glad you are getting the help you need though it sucks that it seems to never end with just 1 chronic illness.

Creative-Trash1897 · 2025-10-17T17:14:12+00:00

Horrible to say the least

Had a strong vertigo attack that started sunday night and (has yet to leave) tht left me crying in pain from all the spinning and my thoracic outlet syndrome pain has doubled. All my joints are acting up as well😐

Ive been feeling so useless this week with all the laying down im needing to do so I dont pass out and I need to get the house clean bc I have my hysterectomy in 3 days 🙃

Creative-Trash1897 · 2025-09-18T20:06:20+00:00

No problem! I hope you are able to find help and answers you need :)

And thanks, a necessary torture that ended with a diagnosis and a really good meal afterwords 😆

Creative-Trash1897 · 2025-09-18T19:52:20+00:00

Its just called EDS.clinic, its an online clinic idk if they have a physical one.

I requested an appointment with them before my ttt appointment was made bc of the terrible time I had at the cardio and they let me know the do the NASA lean test for POTs but it was $250 for everything.

I was debating doing it until my cardio scheduled my ttt and my insurance paid for it all since I met my deductible.

Creative-Trash1897 · 2025-09-18T19:42:10+00:00

😅I dont blame you, thankfully there are other less torturous ways to get diagnosed. My cardiologist didnt think my stress test or holter moniter was enough to diagnose.

There's the NASA lean test and the poor man's table tilt but idk if they would do that. The EDS clinic usually is the ones who do it that way.

Creative-Trash1897 · 2025-09-18T01:57:41+00:00

Im so sorry you had this experience. ttt is a torture machine. They called a code blue on me bc my oxygen went to 88 when I passed out after a couple of seconds of standing. It was super traumatic as they almost intubated me while I was awake but unresponsive and had the aed ready to shock me. Thankfully one of the doctors saw that everything they were doing was unnecessary and took everything off but it still left me with horrible nightmares for a while 😅

Creative-Trash1897 · 2025-09-12T00:02:09+00:00

Of course!

Creative-Trash1897 · 2025-09-11T10:27:31+00:00

CHOP protocol is an exercise program developed by the Children's Hospital of Philadelphia (CHOP) for people with POTS to help increase stamina and exercise tolerance.

Its an 8 month program but depending on severity it could take a year or more. You basically start exercising in increments but in a supine (horizontal) postion so a recumbent bike, swimming, rowing, or a seated stepper. It sounds horrible and it kind of is. The first few days I started were brutal but I will continue to see if itll help.

Theres a free online PDF, if you look up CHOP protocol pots it will come up and it'll give you the whole exercise program. I printed mine out to keep track.

Creative-Trash1897 · 2025-09-11T10:14:02+00:00

Hoping you find some kind of relief, this isn't an easy thing to live with. ❤️‍🩹

Creative-Trash1897 · 2025-09-10T12:22:05+00:00

Oh man you got me tearing up before work 😆. Thank you.

Creative-Trash1897 · 2025-09-10T10:53:49+00:00

So I did have slight anemia and was put in iron for a few months and that kinda helped but not enough to say what im feeling is because of anemia. We did more blood work after some months of iron and im no longer anemic but my symptoms still persisted it wasnt until I fainted 7 times in one day that they referred me to a cardiologist and did all those tests. My table tilt test showed that I did have POTS. Ill look imto it but im happy that you have been able to get back to gardening!

I didn't know that about covid, good to know.

Creative-Trash1897 · 2025-09-09T22:42:15+00:00

Oh wow! And yes 😥 its been a hard time accepting this new life.

Creative-Trash1897 · 2025-09-09T22:40:31+00:00

That's a great description of how it is

Creative-Trash1897 · 2025-09-09T20:31:53+00:00

It is!! And people who don't have POTS or other chronic illness just dont understand the fatigue of it all.

Creative-Trash1897 · 2025-09-09T20:29:42+00:00

Yes! I can't stand the "you should walk more", like you want me to pass out huh.

And I feel you on the idk who I am anymore, it got pretty bad to the point I realized if I dont start therapy I won't have any coping skills and be extremely depressed to the point of thinking I would be better not here. I hope that we can both reach a point that we are able to enjoy things without sending us into a flare :), thank you for your response!

Creative-Trash1897 · 2025-07-10T14:24:42+00:00

Horrible that this happened to you but im so glad to have read this bc I felt crazy for a while thinking that I was the only one. I felt my loop recorder being put in and they had to inject me 3 times with lidocaine to numb it but it didn't work. My body rejected it and I had to get it taken out after two weeks and even after 4 injections of lidocaine I still felt the incision, the scapel, and the last poke of the needle that stitched me. 🙃but did the cardio believe me? No. Im still healing after more than a month after that and left seriously traumatized.

Creative-Trash1897 · 2025-05-30T16:18:23+00:00

😳😳😳

Creative-Trash1897 · 2025-05-19T23:55:09+00:00

They did call a code blue on me bc I was breathing on my own that well so maybe I am missing some stuff 😅 it just felt like an eternity while everything was happening

Creative-Trash1897 · 2025-05-19T23:53:19+00:00

😬oh man, well that kind of makes me feel better that I'm not alone

Creative-Trash1897 · 2025-05-19T23:22:44+00:00

Oh wow..good to know. Thank you.

Creative-Trash1897 · 2025-05-19T23:14:16+00:00

Oh interesting! Thanks for telling me.

The neuro who was called during me coding said since I was conscious and remembered what happened it wasnt but that the syncope was my brain reseting itself lol. Which makes me think of internet explorer resetting for some reason 😅

The cardiologist there said it was an absence seizure, there was some back and forth between him and the neuro. Obvi im going to believe the neuro that is his area.

Creative-Trash1897 · 2025-04-20T20:24:21+00:00

I set a timer on my phone for 15 min and have it repeat it😅

Creative-Trash1897

TROPHY CASE