My VM struggle so far…
I’m greatly suffering with vestibular migraines since early 2018.
I get them twice a month lasting 5-6 days each time.
I used to be a gamer and rarely can do gaming anymore.
And I’m 35 and living with mum still having aspergers syndrome(autistic spectrum disorder).
Also UK based(Worcester)
I literally only got 1 friend in real life and mum, that’s it.
All my other so called ‘friends’ dropped me after I couldn’t come out much.
So get very lonely and isolated by this horrible condition often and is ruining my life as can’t do much anymore.
Can’t do gaming, can’t listen to music loudly like before,hardly go outside except on ‘good’ days.
Laying in a dark room for days on end(like 5-6 days) twice a month is making me go crazy from the isolation.
Mum doesn’t understand VM and just says it’s all anxiety, bs.
I been diagnosed by 2 neurologists.
One in the Hospital of Neurology and Neurosurgery,London, other Birmingham Queen Elizabeth hospital.
They only went by my symptoms and did basic tests.
I’ve also got aspergers syndrome, GAD, social anxiety, panic disorder,BPPV lying flat on my back or on my right side everything will tilt really quickly like a seesaw(will feel like I’m falling backwards) and the room will spin violently like the ceiling will become the floor.
Also have had labyrinthitis a few times.
And also got pulsate tinnitus in my left ear like a booming subwoofer for the last few months.
Also got PTSD, depression(sometimes severe because of the isolation of the VM episodes).
SIBO,IBS,GERD,chronic nerve pain, and other chronic health issues.
Also have NEAD( Non Epileptic Attack Disorder).
Asthma,allergies and more.
I also need to get my eyes tested soon, as reading for too long gives me extra dizziness and tension headaches.
My symptoms of VM are:
Extreme dizziness, tilting vertigo but doesn’t last more than a day or so(like being thrown back in a seesaw) and is extremely scary.
Spinning vertigo but doesn’t last more than a few hours sometimes.
Dream like spaced out vision like the world is surreal can last days sometimes.
Brain fog/mega confusion
Occasional nausea, mind you I never thrown up with it.
Very high pitched LOUD tinnitus in both ears during a VM episode.
Sometimes get tingling in my face on the left side around the bottom of my nose and left cheek.
Sound and light sens during a VM episode but not always.
Head pressure like my head is full of concrete and is dead heavy.
Headaches sometimes severe, usually tension like vice squeezing at my temples, front of my head, back of my head.
I rarely get pulsating/throbbing headaches.
Extreme fatigue usually during and after a VM episode.
Balance issues like the floor is even or sloping.
Dropping feeling when walking sometimes like a free falling elevator.
Rocking boat feeling
Floating/levitating/out of body feeling mostly when laying down.
Sloping/sinking feeling when laying down sometimes.
Leaning to the left and feeling like I’m going to fall when standing sometimes.
Objects appearing smaller or bigger than usual and my depth perception messed up during VM episodes.
Unsure how it started in 2018 however I saw a chiro as I kept getting tension headaches before that meds did nothing for.
And he manipulated my neck which scared me as days after my entire left arm went numb.
And freaked out and went a&e thinking he had given me a stroke/TIA.
Luckily not but they presumed it was a bruised nerve.
But they didn’t give me any scans like a CT which was worrying.
Also have many multiple cavities slowly getting done.
When I had my left upper wisdom tooth extracted in April 2019 strangely no VM issues for 6 weeks.
Wasn’t so lucky after the right upper wisdom tooth was taken out.
Might need my left and right lower wisdom teeth out soon.
Defiantly do need loads of fillings, got temp fillings currently.
So apart from neck issues made much worse by the quack chiro, TMJ issue, multiple decayed teeth, needing my eyes tested/glasses, needing to get my severe anxiety under control.
BPPV issue and uncompensated labyrinthitus issue.
I guess those issues are the cause of my VM…
Currently tried Amitriptyline but gave up after 4 days as had a racing fluttery heartbeat and heavy sweating.
Have tried Pregablin(Lyrica) in the past when I was on it originally for misdiagnosed “epilepsy” which was NEAD along with Sodium Valproate(Epilim), so going to give Pregablin another try, it should wipe out my severe anxiety at the same time…