Can anyone relate? POTs/autonomic and sensitized brainstem/nerve pathway. Is this ON?
Hello. I have been to a million doctors and none have mentioned ON but I recently learned about ON through my own research and I’m curious if you think I fit the criteria. Here’s my story:
In November I started having sudden symptoms out of no where of what I now know as hyperandregenic POTS.. Heart rate adrenaline surges at night with inappropriate sinus tachycardia. Near fainting vasal vagal episodes. Waking up every two hours with these surges where HR would sky rocket. Could barely eat. Very weak. Barely moving. Lots of hospital visits. Put on benzos. Told it was anxiety.
In December it evolved into more like orthostatic intolerance. Still having vasal vagals, adrenaline at night cooled down a little, but things like stairs, Hot showers, exercise triggered it. Miserable but thinking it was nervous system related or stress, tried going to yoga. After a morning at a pretty chill yoga class around Christmas time, I went to ER bc my tongue, jaw and face on right side went tingly and words felt slurry. It passed after an hour. MRIs all normal. Words not actually slurry. Brain fine. Just feels slow to process.
After this, I started getting it every day. The right side of jaw and roof of mouth would get this pressure/aching sensation and words felt slurry to form. Right foot also goes floaty feeling for a bit. Then it passes. Especially when I was on tense work calls.
Late January, still thinking it’s autonomic nervous system dysfunction and I need to just relax, I go get a massage. During massage I feel a release in my neck, arms go tingly. Sit up from table. Vision is super blurry For 30 mins can barely see. Freaking out. Go to ER. MRI is normal. Vision is back. They say I’m fine.
From then on, January to March, I am getting vision blurring in the night when I wake up. Pressure in eyes. Same jaw and trigeminal nerve sensations. Neck is now involved. Base of skull and brainstem area get heavy sensation and start going “offline” I call it. Like spine lacks sensation. Right foot floaty. Then comes back.
Then i get a migraine phase. Now the nerve pain tips into headaches that light up the whole pathway. Right eye tears up even on a chill day just crying tears nonstop. I Get put on Nurtec every other day and I start to feel recovery. Adrenaline surges decrease, HR stuff cools down aside from intense workouts and heat. Nerve pathway isn’t as easily triggered. Living my life a little more normal. Hopeful.
Then in the past two weeks after traveling and losing my job while on disability everything is back. Migraine I can’t break. I’m having the slurry word feeling again and jaw/tongue/roof of mouth but now more often— multiple times a day. Eye pressure and vision blurring in night. It comes and goes. HR weirdly goes down low when I’m in a flare. Can’t look at screens without getting weird eye pressure and disassociated feeling.
Nerve study normal, EEG normal, labs all normal, MRI head and cervical spine normal except CCI and compression at C1 and C2. Neck specialist says CCI is compressing vagus nerve and jugular. Been doing PT on my neck but can’t do much without triggering. More neurological symptoms. Neuro opthamologist says eyes are normal. Cardiologist says heart is normal. Tilt table test shows some form of POTs hopefully not long term but I’m approaching 6 months of symptoms. And Getting head and neck MRA on Friday.
Any thoughts? Anyone experience something similar with sensitized nervous system leading to this pathway lighting up? Is this ON? Migraine with brainstem aura? Solutions??
Migraine specialist is saying get Botox and neurologist saying nerve block. Both scare me bc of the CCI and compression theory. Don’t want to make anything worse but also this sucks so bad. I need to get back to work and desperate for relief.
Help!!