Although I am a long time Meniere’s sufferer, which seems to have morphed into MAV as well, I am sharing my story in case it can help anyone in any way. At present I am in a (almost) remission stage.
Meniere’s vertigo episodes started around age 20 - approximately 1969.
Un-diagnosed until around 1980, by which time hearing in the left ear was impaired. Surgery at that time left me ‘socially deaf’ in that ear.
Sudden onset vertigo lasting approximately between an hour to all day.
Nausea/vomiting occasionally on very bad days…(the first such episode being on my honeymoon! - with hindsight, probably caused by the VERY bumpy dirt road!)
Once an episode is over - back to normal except for sometimes a ‘hangover’ the next day.
A mild episode presents as being ‘drunk’ and off balance without the good feeling from alcohol!
Recurrent episodes can go on for days or many months before disappearing into remission until the next time.
Sometimes an new bout of episodes can be preceded by an upset tummy and /or a couple of days of unexplained depression and/or irritability.
All of these symptoms could disappear for months/ years with only slight breakthroughs between the ‘batches’ of episodes.
The MAV symptoms appeared mid-2016 after a couple of month’s remission following a bad bout of Meniere’s after a long remission. Current thinking seems divided on whether MAV is a natural progression of M into the final/3rd stage, - or if it is a separate affliction that runs alongside the Menieres. I treat it as the latter, as for me the symptoms are separate, but sometimes run concurrently.
My MAV symptoms are many and varied - but similar to most members here.
I have found no discernible pattern, and no ‘triggers’ to the onset except for when the barometer DROPS! Any other triggers only seem to effect me once the MAV is actually ‘present’, when certain things definitely make me worse!
SYMPTOMS: - My terms for them!
Earthquakes: Feels as though the earth is throwing me upward, as though being tossed up by a whale while in a small boat! Only lasts about 20 - 60 seconds, but during that time I am totally unbalanced and cannot see clearly. It can pass as though nothing happened, or leave me off balance for hours or the rest of the day.
Spins: Probably a very mild form of the above, where the world kind of wavers and everything is out of focus for a few seconds.
Grey-outs: almost subliminal feeling that I may pass out.
Feeling Just Off : sometimes for the entire day or days. Just not quite balanced or in sync with the rest of the world. May include any of the above - or not!
Brain Fog: difficulty concentrating, focusing, remembering words. The finding words has become chronic and does not go away anymore!
Hot Flushes: Occasionally precedes spins, but usually for no reason and more often in Summer. At 70, I am way past menopause!!!
Palpitations: / loud heartbeat - not accompanied by a rise in BP or heart rate.
Feeling of agitation as if too much caffeine - occasionally preceding a spin.
TRIGGERS that make things worse when symptomatic include:
Drop in barometric pressure!!! (By far the biggest trigger I have been able to discern!)
PHONE OR COMPUTER SCREEN - especially scrolling. TV no effect (except for actual content like swinging picture, volume, flashing lights etc) I keep screen brightness down as low as possible, which helps.
BRIGHT LIGHTS: especially in supermarkets etc, LED lighting at home helps and I often wear Polaroid dark glasses in shops. (I’m over the funny looks from people!)
LOUD OR SHARP NOISES
VIBRATIONS; car engine idling, etc…
BENDING DOWN: head below waist…
REPETITIVE MOVEMENTS: like sweeping etc
LOOKING UPWARDS AND/OR BACKWARDS
LYING ON MY SIDE; unless propped up to almost sitting position.
MULTI-FOCAL GLASSES: walking with them on - or looking at screens, despite having worn them happily for many years before MAV.
I am currently in remission from Meniere;s and am pretty much symptom free if I am careful.
Following a 6 month bout of extreme deafness, in the previously good ear, I was diagnosed as having gone bi-lateral and my hearing is deteriorating gradually. However - all the ‘fullness’ and severe tinnitus seemed to be in the bad ear!? I now wear a hearing aid in the ‘good’ ear which helps some - especially with the TV.
Balance seems to be permanently damaged and I need to take care, but not yet needing a cane, although I never enter a s.market without a trolley!
Tinnitus is ever present, fluctuates, but is not really a problem as I have adapted.
Obviously, some of these symptoms could quite easily be made worse by my age! No way of telling!!
MEDICATIONS: I was given Stugeron Forte when first diagnosed with Meniers, but it did nothing. I have never been offered anything else and have mostly worked through the natural remedies suggested. I take a STEMETIL if the nausea seems to be increasing with vertigo, and FEVERFEW drops if a headache/fullness starts.
I hope this is not too long and that it can offer something to someone. Happy to answer questions if I can, as I did’nt want to go into toooo much detail…quite difficult after 50 year with this combined beast!! I will post another topic which MAY have helped with this remission at a later date, as I have had enough screen time for now!