Can anyone relate to these symptoms?

So I guess all our symptoms are very much unique to our brains but wondering if anyone can relate…?
Since December I’ve had chronic:

  • Sensitivity to light (have to wear sunglasses in whatever weather),
  • Ache behind left eye have to shut it for relief.
  • Visual disturbances I can’t focus on close up objects like someone’s face when talking or looking wide open space without irrating.
  • If I watch things move I move, TV is the worst when camera moves brain thinks I move.
  • Stiff neck that cracks and pops when I turn it.
  • Legs wobbly and heels feel like being pulled backwards like I’m on a boat I guess which causes leg muscles to ache.
  • Rocking and swaying
  • Moving head has that delay to the brain.
  • Lay in bed in dark and have that feeling I’m moving like when drunk LOL
  • ringing in ears when silent

Anyone experienced some or all of them? Thanks

Yeah, I have had nearly all of those in the past couple years. Except I prefer wide open spaces rather than small spaces. And my tinnitus has not changed with my vestibular migraine symptoms.

What about driving? Make things better or worse?

Have you seen any doctors, like ENT or Neurologist about these symptoms?

Hi, yes, I have most of those and a host of others, too. Currently my trigeminal nerve is numb. Always fun to lose portions of your face. :smiling_face:

How long have you been on your meds?

BYeh I think I probably prefer open from close up too.

How are you talking face to face with people close up?

Driving Makes it worse really worse, in fact I think that’s what brought it on this time while travelling Canada Xmas. Problem is drivings big part of my life. I tend to have 2 week cycles of symptoms from bad to worse then bad again just can’t seem to break cycle like before.

Saw DR S last week moving me from Ami to Nort

How are you at the minute?

Oh no sorry to hear that, sounds awful ! How are your symptoms driving ?

I’ve been on Ami for 5 years and had a good 4 years until last Xmas. Starting to wonder whether it actually did anything or was just my brain coping for a while.

Worth dipping into the Wiki:

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Nah, annoying but not bad. MAV has visited so much worse upon me. I’m not complaining.

Driving is a mixed bag. Never good, sometimes a disaster. Meclizine helps.

I’ve read a lot of places where we basically get immune to certain meds after a while. You might consider switching it up.

Pretty much had all of those and more :grimacing: had them on and off my whole life when I think about it not bothersome or severe but now it makes sense

It’s taken me so long to accept this illness I don’t understand but I accept . I’m stlll trialling meds but since my crash 10 months ago I am much better


Yeah, I used to have trouble with people up close. Couldn’t watch TV for the first 5 months. Driving is great for me, most of my vestibular symptoms are completely gone in a car (or boat).

I’m definitely getting closer to normal, but I keep having some relapses of headaches and rocking. But it appears that its becoming more episodic now rather than chronic.


Yeah! That’s a big improvement!

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It is a hard illness to accept… so rare and un heard of doesn’t help. I’ve had mine on and off since 20 and I’m now 34 I’m sure people think I make it up.
Hope you find a med that works. I had really good 4 yrears on Ami but not anymore some reason :man_shrugging:t3:

That sounds good improvement. I’ve always handled background symptoms fairly well almost unnoticeable when keeping busy. However now I’m so sensitive to light and movement I can’t watch Tv (really miss the cinema) and driving always makes it worse it’s more looking at the road than the motion of the car.
Not sure if it’s related to my MAV but every few years also get head ache clusters down my left side of face (same as migraines) weird.


We’ve spoken before. Friom what I recall you saw DR S last week, yr Dad drove you, horrendously long journey. Maybe you are feeling delayed side effects. That happens to me. Didn’t Dr S change you from Ami to Nori. Straight swap? Of course that’s almost bound to have repercussions in itself. Are you feeling really rough. It wouldn’t be surprising. Is it making you doubt diagnosis? I’ve never met Dr S but read alot of his stuff. On the Welcome/Wiki section you shoukd find an archive post from abt 2012 from a ‘Jen’ I think in which she describes the Overflowing Jug theory, which is one of Dr S’s favourite ways of explaining MAV symptoms.

All those symptoms (and I must say you certainly found a good way to express them as everybody can understand exactly what you mean, and that’s not always easy) are typical MAV symptoms. I could tick all those boxes and another dozen too if I stopped to think about it. They are all symptoms that the vestibular system has ‘gone a bit hyper’, a neurologist told me. I walked in on the darkest February day wearing a hat and two pairs of glasses, top ones wraparounds! Bit light sensitive I was! The preventatives job is to bring them under control again. I have read that preventatives can stop working after long time of success. I’ve seen Ami stop for some after 4-6 years. Don’t know how common it is, and don’t think anybody knows why it might happen either.

I was extremely light and motion sensitive for years. I couldnt watch TV or any screen. Apart from preventatives when it’s so hyper I found it imperative to eliminate all triggers as much as possible. I went 8 months avoiding screens almost entirely. Helen

Hi Helen, thanks for taking the time to write message. Sounds like you’ve been to hell and back, so I’m not a lone with light sensitivety then. Dr S was great and I’m happy with diagnosis just wasn’t sure if most people had the visual symptoms I have. Literally feels like everything I look at focus on triggers MAV or makes it worse. To elimate my triggers or calm down this hyper spell as you put it, I think I literally need to stay indoors no TV or even reading books for like a month. Problem is the world we live in now it’s almost impossible to do or avoid.
Hopefully new preventitives help.

True, constant light sensitivity doesn’t seem to affect that many on here, unless they just fail to mention it. I could write a thesis on it. Much like MAV, nobody medical seems to know anything about it. Even the oto-neuro I saw said he’d had no success treating it and wouldn’t get involved in conversation about it with me. He said he didn’t know where it had come from in my case. Oh, I lived in the dark like a mole, or vampire for a year at least, curtains drawn. Couldn’t even go to hospital to see newborn niece becsuse it was July and bright blue sky and sunshine and I daren’t even walk to the car the sun made me so dizzy,

Whatever you do, don’t wear sunglasses constantly indoors. Just to get to bathroom if essential but not otherwise. The darker you keep your eyes, the more light sensitive they become. And, don’t stay indoors constantly, not even for a month. Make sure you walk outside everyday, and go for a proper walk if you can. Stay safe, be accompanied, pick your time depending on the light conditions and do wear sunglasses outside even on dark days if the sky is much brighter than the land on the horizon. Walk with a stick if it helps but you must walk outside regularly.

It’s boring and makes one miserable but it’s perfectly possible to avoid screens and reading. I did it for months myself. Try radio, audio books etc. A kind friend once brought me adult colouring books and coloured pencils. The reflected light off the glossy coloured pencils knocked me for six, but it was a kind thought. Still I can look back and laugh now, we both do, the preventatives have sorted 90% of my light sensitivity so you’ve got that to look forward to. Helen


So many of those symptoms are like mine Alex7.

I often have aches and stings behind my eyes. Also having a lot of trouble focusing on anyone and following camera shots on tv shows. Video games are virtually out of the question. When in an episode of vertigo, objects appear to distort visually, they might look further away or slanted or like they are rocking as well.

All part of the fun of these conditions!