I need help understanding how MAV/VM works, could someone with real experience help me please

Yeah. I have had 3 really bad spin attacks. Two of which I nearly threw up during. Scary as more ‘menieres’ like (but no deafness). That was ages ago though.

I had one lesser spin during a meeting with HR at work!

And I’ve had loads of smaller spins when getting into bed at night and during the night.

I’ve not had one for some time now.

I totally agree! Sometimes the tinnitus really ramps up, - but there are no other symptoms! (Thankfully!!!) I can deal with the tinnitus!!

Hi Dizzy,
Have you ever had a cervical x-ray to rule out cervical elongated C7 transverse process or a cervical rib by a cervical x-ray? If not please ask your doctor for one. Please make sure that your doctor write all what I wrote because my elongated C7 transverse process was misread. Those can cause cervical outlet syndrome. Please see my Facebook page "Gracy Kalath " album’s for some medical information on Vertigo. Good luck!


forget what you think a migraine is - it’s not a headache. it’s a brain inflammation of some kind, that produces weird side effects (which can include pain or nausea, but doesn’t have to). one of those side effects can be dizziness/imbalance/sense of motion when it’s a brainstem migraine (that’s the theory at least).

[episodic] migraine attacks can last up to 2-3 days. so if you have one attack every day or every 2-3 days (i.e. like chronic migraine) you will constantly have symptoms, sometimes better, sometimes worse. never goes completely. and you can have symptoms like photophobia for a long time in between attacks.

there’s no such thing as compensation with pure MAV: the symptoms fluctuate with each attack, so there’s no way the brain can compensate against a moving target. however, what it does do is learn to rely on one input, usually vision, to tell itself which way is really up, and where it’s really moving. so you can quite often become visually dependent - your actual balance will improve, and the sense of motion can start to reduce, because your brain is getting conflicting signals from eyes, ears and body, so it shuts off the ears, and just uses the eyes.

medications can help. nobody really knows how or why they help, but they really can help. I’ve been on pizotifen 6 months and it helps a lot. not cured, but much much better than i was. going to add in gabapentin from tomorrow - see where i get to.

i have never had a bad migraine headache. i have had just about every other migraine symptom - visuals, photophobia, phonophobia, nausea, dizziness, weakness and bad coordination in legs, tinnitus, weird head sensations, some head pains and occasional bit of headache behind left eye but never classic really painful headache.

i am pretty sure i have MAV. there’s nothing actually wrong with my balance - i can ride my mountain bike on a good day down some pretty challenging trails - but i have sense of motion when i get off the bike. i definitely feel the episodes starting - starts with tinnitus first, then goes through the spectrum of symptoms. but it’s always there to some extent. My dr (Dr S) says i’ll know i’m getting truly better when i start having normal days in between the episodes - i.e. you get fewer attacks, further apart.

i hope some of this is helpful. it’s a hard condition to understand.


Please see if you have any cervical rib or an elongated C7 transverse process. Please see my Facebook page albums " Gracy Kalath " for information

Brilliant summary. As could only have been written by a survivor. Unfair to pick it apart really but I did it anyway.

And I certainly agree with this

Seems the way it goes, quite literally, for most people.

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My Audiology tests showed that my left ear was disfunctioning by 40%. Things have improved, and now I think this condition, at least for me, is caused by some sort of viral damage to my left vestibulsr nerve that is permanent, and my brain is not able to compensate permanently. All the classic triggers occur like certain foods, stress, back pain, lack of sleep, weather changes, etc. Migrainecis not a headache, it is a word used to classify a certain type of brain condition and the symptoms are various. So I have “ Vestibular Migraine” brain that is controlled vertigo all the time but can be triggered to get worse. Thats my two cents on my condition, but itsprobably only worth about that much.


All it takes to get a migraine is vestibular instability not necessarily damage. The brain gets stressed out by the lack of consistent system response to movement. Don’t get hung up on damage. It’s very easy to do that as depression and ‘doomsday scenario’ thinking are common side effects of suffering such a debilitating set of symptoms. It might well settle down and you’ll feel much better.

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My two cents is that MAV is another face of CFS, just like PTSD is and ‘Adrenal Fatigue’ etc. It can be caused by a myriad of ways but viral infections, trauma and other acute events are more like ‘the straw that broke the camels back’… in my opinion.

You have to look at who gets this, at what age and what kind of person they were before the illness. For instance, if you are on here in your 20’s I’d confidently say you were pushing your luck with your health. Awful diet, lack of sleep, overly stressed, on the go all the time. If not then your genetic susceptibility is very strong and your parents most likely have similar issues.