Hi there,
I’m new here, so I have a few questions because I have never before considered that I could have ES or internal jugular vein compression. I tried reading around a bit for answers but I couldn’t find some info., so thought I might ask? Unfortunately it’s looking like more of a novel than I meant for it to be… sorry I’m kinda verbose 
The internet has some standard symptoms listed, but I thought there might be some less standard symptoms that people experience? For myself, I seem to have many standard symptoms, but some that aren’t so much, so I’m curious if other people have experienced them.
I have what one neurologist called hyperreflexia, and another said a functional neurological disorder (I think translating to all in my head?!?) but it’s more like convulsive seizures where I don’t loose consciousness. It affects my breathing, my tongue and my hands and feet don’t work right, so it’s challenging to walk, talk, or pick things up when it occurs. It’s transient and seems to be triggered by anything that stresses my body out, like getting sick, exposure to gluten, perfume, or heat. Traction also does it, I tried one of those over the door traction devices and I was triggered for days. Sometimes I need a cane to walk because of it.
Another strange symptom is for the last year or so I’ve been having increasing difficulty swallowing that is mostly positional, when I’m laying down at night. A few weeks ago my neck was hurting so I thought maybe a soft neck collar would help, but not long after I took it off I had the worst sensation like something was stuck in my throat, it was really difficult to swallow and I actually had a rare panic attack from it. I went to the ER to have it checked out, of course they didn’t find anything. It took about 2 days to go back to just happening laying down.
Last thing… when I was in junior high, I had this thing happen that lasted until I was nearly 30. If I turned my head too fast, it felt like something in my neck would snap (there may have been a sound? It hasn’t happened in a long time so I don’t remember) and then it felt like this intense rushing, hot liquid was just pouring down my neck, like blood or something. It was SO weird. I would tell people about it, even doctors, and they would all just look at me blankly like I just landed in a spacecraft. So I just eventually stopped telling people unless they asked why I was clutching my neck like something was wrong. I’d just tell them it’s a weird thing but don’t worry, it’ll be fine.
I also have been diagnosed with ME/CFS, POTS, MCAS, and HSD, which if I understand correctly can be more commonly associated with ES? I thought for awhile that perhaps I had CCI or TC, which I still may, but I just don’t have the money to travel to a doctor, so right now that’s a dead end.
My close friend just had internal jugular vein decompression, so that is what sent me on this journey looking into this. She and I have similar health issues (we met in a support group!) so I thought maybe this would be an appropriate avenue to explore.
If you got this far then thankyou so much for your time! 🫶🏻
And please do chime in if any of these symptoms are familiar.
