The Migraine Associated Vertigo Community
Read our welcome post, user support wiki & visit our member recommended products page

Vestibular Migraine?

Hi everyone,
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.

Steve

2 Likes

Steve, welcome and sorry you are suffering.

We can’t diagnose here, but certainly many of your symptoms are familiar. One interesting observation is that many MAVers have had prior diagnoses of POTS: an interesting relationship for sure. In other words I wonder if there is some physiological process that occurs in POTS sufferers which goes on to cause the symptoms of MAV?

Anxiety is over diagnosed/focussed upon imho. You know something is not right and that’s partly why you are anxious. Also vestibular deficit gives us anxiety as we are hard wired to react anxiously to unsteadiness (not to menstion all the weird sensations there conditions throw at us)

1 Like

Hi Steve and Welcome

I hope you get some answers next month. I also think GP’s focus too much on anxiety, often people are told that all their symptoms are caused by it. But you know, who on earth wouldn’t be anxious if they are feeling dizzy and weird all the time and unable to function?

Usually MAV/VM is a “wastepaper basket” diagnosis, one of excluding all other possibilities a bit like fibromyalgia or cfs often are diagnosed by ruling out other things such as MS. I hope your emloyer is being sympathetic. Yeah the wheels of the NHS grind slowly.

3 Likes

Thanks turnitaround. It’s a strange one for sure. I can’t believe how wiped out I can be one day unable to function and another day can be back to just a bit of lightheadedness.
I’ll update as I find out more anyway.

1 Like

Yes sputnik2 anxiety can be self fuelling. Like I’ve been walking my dog happy as can be and been hit quite suddenly with severe dizziness and almost fainting. Of course about a mile from the car and stranded my anxiety went through the roof which made things much worse. Luckily we’re in an age of mobiles and managed to call help to get picked up.
I’ll update when I know more anyway. Thanks for your reply.