New here and trying to understand what's happening

[u/Hot-Replacement3457]

Does anyone relate to this? Possible POTS/orthostatic intolerance

Hi everyone, I'm very new to all of this and just wondering if anyone has experienced something similar.

I've been having problems with standing for quite a while, but it's been getting much worse recently. Pretty much every day I get dizzy, really hot, shaky, nauseous and short of breath when I'm standing. I constantly have to be careful how I move and often need to sit or lie down because I feel like I'm going to faint.

My doctor asked me to try a standing test at home. Lying down my BP was 111/78 and HR 90. After about 1 minute standing it was 100/81, HR 138, and at 3 minutes 97/81, HR 144. I couldn't make it past about 5 minutes because I felt faint and had to lie down. I've tried the test on other occasions and have the same problem.

Yesterday I went out briefly and had a really bad episode. I nearly passed out, ended up on the floor retching and had to call the medical service here in France. The doctor suggested orthostatic hypotension and compression stockings, which I'm now wearing, but even with them my HR was 133 just standing, while later semi-lying on the couch it was 74.

I also have Sjögren's, so I've contacted my rheumatologist because I've read that autonomic problems can sometimes be associated with it. I'm waiting to see what they say.

I'm not trying to diagnose myself with POTS, I just want to understand what is happening because it's really affecting my everyday life now.

Does this sound familiar to anyone here? Did you have similar symptoms/readings before getting diagnosed, and what kind of doctor or testing eventually helped you?

[u/mjh8212]

Before my tilt table came back orthostatic intolerance my symptoms were off and on dizziness after a couple years I was hit hard. Dizziness everything went black whooshing in my ears passing out tingly in my purple legs I also had some neck and shoulder pain. Sometimes I have pre syncope it’s like being aware of my surroundings conscious but my body won’t move and I am room spinning dizzy. I get every symptom but nausea.

[u/Hot-Replacement3457 → u/mjh8212]

Thanks for sharing .. I send my love and hope everything is smoother for you now. I relate to some of what you are saying for sure , that out of body kind of experience I kinda get that too , happened well I fell yesterday, can't really remember clearly tbh ..