I’m Steve 39 y/o in England and trying to figure out whats going on with myself.
I’m not diagnosed with anything official but i’m wondering if anybody can relate. I’ve just been told today by my GP that I could possibly suffer for Vestibular Migraines but I’ve had that much going on over the last year or so I just dont know.
Here’s my story so far.
So over a year ago I went the docs with funny neuro symptoms like muscle twitching, hands weren’t quite working right (still arent), nerve pain and tingling, zapping pains, occasional dizziness which prompted a referral to the Neurology department. Its a very slow system with months passing between appointments. I had nerve conduction studies to rule out some nasty stuff which I was told at the time theres nothing sinister going on there. Ive also had an MRI but ive not had any results yet my follow up is in February. I initially suspected MS.
Anyway, about 2 months ago I was at a football match and at half time I got up to go down the concourse and I could barely walk. My balance had gone, I felt like I was about to pass out but never did, vision dimmed , hearing dimmed. I had to leave and jump a taxi quickly.
I spent the next few days very ill and in and out of hospital with cardiologist check ups checking for heart problems. No problems there.
Since then I’ve been off work because whenever I try and go back, within minutes I start getting ill again. It starts with lightheadedness but progresses to dizziness and if I dont act quickly I can barely function feeling like i’ll pass out. The only relief is lying down but once ive aggrevated it and started an attack it lasts for days.
This is where i’m confused. I seem to fit into the diagnosis of Dysautonomia (POTS) more as I become very intolerant to being upright, my heart rate can rise, I get weird body tremors at night and some other things. But, i’ve figured out certain triggers that fit more with VM. For instance, I cant tolerate going the supermarket with florescent lights, being places loud and busy sets me off too. Cooking in the kitchen is fine unless I have to talk to people and I think the sound of my own voice causes symptoms to start too. Its a horrible sinking feeling.
I just want to get back to work and i’m dreading getting no diagnosis because of how dramatic i’d look but I know I just cant function. I’ve heard anxiety mentioned a few times by doctors but its definitely not.
To this day I still have the original symptoms of funny feelings in hands etc, I dont swallow right and frequently get dry food stuck in throat, muscle twitching. But, that all seems nothing compared to this new problem which is taking over.
So… Vestibular migraine as my doctor suggested? Maybe its VM together with something else? Does VM lead to POTS symptoms when at its worst?
Thanks to anyone who took the time to read I appreciate it.