I was going to wait for a few more weeks, but what the heck!:

James, this is great news!

You mentioned that you used to get migraines. Do you mind if I ask, what sort of symptoms did you have with your migraines? Headache? If so, where was it located, how bad was it, how long did it last, etc. Any other migraine symptoms (aura, dizziness, etc.)?

Well sounds like your condition is at least somewhat similar to mine. This sounds like pressure in the inner ear to me, being influenced by head pressure when you move. I suspect the pressure in the inner ear is up and has ā€˜hookedā€™ up with head pressure (via cochlear aqueduct and no doubt blood pressure) so when you are in certain positions it stimulates more tinnitus. More whooshing/hissing is changes of and more pressure I believe. Same can happen with diet. Pressure can get worse after certain combinations of food and drink so you get increases in tinnitus then. Mine can pulsate after some meals, but over time this has got much less intense and less frequent.

It may feel like the ear drum is involved but if you look at the anatomy thatā€™s impossible. There is a pretty large air gap of the middle ear behind the ear drum and the oval window is behind that. Only then do you get to the inner ear. But yes, it wants to come out and I suspect it does periodically: I wonder if the occasional pressure letting is what manifests as spinning vertigo.

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As you know I do not subscribe to all these symptoms being migraine: it is abundantly clear my MAV is a combo of inner ear and neurological trouble (leaning over and getting increased tinnitus is not a migraine, lol!). That said the neurological stuff seems like the following (though you canā€™t rule out inner ear involvement during some of this either):

  • Attacks of debilitating intense ā€˜headacheā€™ for up to 14 hours with a pulsing throb at back of head, incredible motion intolerance where I could not move my head, eyes or even eye lids without needing to throw up. These happened every 3 days at one point but thankfully the phase passed after about 2 months. No aura of any kind.

  • brain fog: hours of confusion and cognitive impairment where you feel you canā€™t think. Had this only a handful of times mercifully.

  • I once had a ā€˜scintillating scotomaā€™ :star2: :slight_smile:

Great news James, delighted for you

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Delighted Jamesā€¦ long may it last!!

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Congratulations James! I have always said that time was the key and drugs only if they help you deal with the side affects of the condition. I am also the best I have been in a long time, but still do have some imbalance and some issues with ocular reflex. Only taking the Triampterene/HCTZ which I think helps keep away the attacks and a blood thinner which strangely started at the same time my improvement began (following a Pulmonary Embolism which followed a really bad period of migraines). Iā€™ve been really good for a few months. Hoping my 14 hour flight to Okinawa next week wonā€™t mess with this (following your advice for the trip).

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thanks everyone for good wishes!

@Dave safe and comfortable flight!

Iā€™m not entirely out of the woods yet, but imbalance and dizziness remain at bay ā€¦ still have loads of odd ear symptoms and the odd ā€˜oddā€™ feeling and like you say, Dave, occasionally you can feel your eyes affected.

Congratulations, James!!

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Wooooooooo! Great news!

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What is ā€œtrauma induced MAVā€?

Cases of MAV that appear to have been kicked off (albeit in delayed fashion) by physical trauma to head or ear. Alternatively sometimes suspected to be ā€œSecondary Hydropsā€.