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My VM struggle since early 2018

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. :frowning:

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…

Welcome. We understand you here. Nope, not bs. Legitimate, life altering medical condition. Several of us have a long list of co-morbidities, though we all seem to have our own unique mix. As if MAV alone wasn’t enough.

@kon is a younger guy and a gamer. I bet you guys can find some commonality. He has experienced many, though not all, of your same issues.

You’re one of us now. We’re here. We’re good family to have, even if we may never get to meet irl. We’re happy you found us.

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Welcome, and thanks for sharing - that’s quite a nasty health history, lots of suffering. I do think finding a proper med will help, it just takes a lot of trial and error and time. Can I ask what dose of Amitriptyline you’ve tried? Meds are best started at a very low dose. I started at 5mg of Amitryptyline and now I’ve been at 25mg for almost 6 months now.

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10mg Amitriptyline I think it was…

If I can find any packets/prescriptions saying the dosage.

10 mg is the usual starter dose.

Welcome. As @flutters said I was/am a gamer with lots of hours in front of screen non stop. The period when this hit me I was palying an fps game and it was very intense not like tye classic shooters. I pushed myself really hard with no proper sleep patterns and nutrition. Probably this happened to me cause of this but I am not so sure. Recently started using pc after a bi g break of 6 months and started also playing. Its not the same and is difficult to be like i was. Still getting headaches weird vision and all these exasperating symptoms. Just stick to the meds and try to minimize the pc it may help you a lot. Stay strong.

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I’m not a gamer but I guessed it would be a FPS and not something like the SIMS because you were constantly activating your sympathetic nervous system to stay alert and on point. Gamers, gym goers, type A’s like me have fried their CNS and this is why MAV looks similar to other disorders like PTSD.

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I’m sorry to hear of your suffering. Welcome. MAV started for me after a chiropractor cracked my neck and somehow injured me, I had a sore numb arm same as you. Interesting. I think some of us are too sensitive for the Chiro. I’m on 40mg of Ami (6 months), when I started I felt worse for a while and weirdly it gave me anxiety, but now I’m almost back to my old self. I have titrated up in 5mg as each time I went up it increased dizziness. It really takes a few weeks to start feeling better

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Translation please. You’ve lost me (I know we are all devils for abbreviations these days.
I’m as bad myself) but? Helen

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Allow me:

First Person Shooter (e.g. Halflife, Doom, Battlefield, Call of Duty) :slight_smile:

Basically a game where you as the protagonist see the world as if from your own eyes (so you don’t normally see your own body).

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Sorry, I’m not a gamer but I did burnout when I was 15 playing Golden Eye 007 on the N64 which was a first person shooter. The movement on screen is erratic and the brain struggles to keep up with what it is seeing. I then moved onto tactical games where what you are viewing on screen is a lot more stable.

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Emily…this is the case for me.
Jo x

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