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My life with Mr.M, aka 'The Beast'

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.
Typical symptoms:
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.

CURRENT STATUS:
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!

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Great summary Beth. Cannot imagine what it would be like to live with this for 50 years. Also curious to see your other post on what you think helped with the remission.

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Beth, thank you for posting your story. To have battled these beasts for so many years… and unmedicated no less, you are truly an amazing lady!
:sparkling_heart:An inspiration to be sure!:sparkling_heart:
You also helped me realize how fortunate and grateful I am to have good treatment for my MAV. Keep being amazing!

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Hi Mazzy,

Wow, fifty years, I thought I was an old lag at 23 years in. Like you I was diagnosed for decades with Menieres and left sided hearing loss but the two specialists who have diagnosed me with MAV both say I was misdiagnosed as were 90 percent of cases pre 2000 and have always had MAV. Although I do remember researching it all years ago and in the U.S. there seemed to be no issue about having Menieres alongside MAV. My hearing loss stabilised and when I get migraine headaches the pain is more pronounced on the left and I have greater deficits on the left side in balance tests, so there is something going on there.

Your symptoms are very similar to mine. Are you considering trying migraine preventation meds?

Yo must be a very strong person to have coped with it all for so long.

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Hi Sputnik2,
Firstly, I am in South Africa - and not in a big centre where one MIGHT find a specialist who is really knowledgeable about Menieres/MAV. The ENT who diagnosed me back then was considered a specialist in the field and had just returned from the USA with his ‘cutting edge’ surgery… well, that did nothing but seal the hearing loss! I had presumed it would stop the vertigo…but it did’nt! I was a lot less cheeky back then and did not ask enough questions - I was just so relieved to find someone who actually accepted that I was not a neurotic female that I just did whatever he said!!!
As for the Menieres/MAV/BPV/whatever…I really don’t care what they call it - I just try to stop or control it! Since the advent of Dr Google and the return of the vertigo episodes 3 1/2 years ago, I have researched as much as I can - and have seen so many contradictions, theories and claims to be able to ‘fix’ what ails me that I have just decided to carry on trucking on my own. It seems to me that the generally accepted difference between Meniere’s and MAV is the hearing loss???
I do not plan to try any prescription meds (except my 1 stemitil to short-circuit vomiting!), as historically prescription drugs across the board often cause surprising and unwanted side effects and I figure that if I have survived to the age of 70, I’m not going to rock the boat now.
. I do not get the classic migraine headaches; perhaps the occasional headache that I have always called a tension headache is part of it??? - For me the Feverfew drops taken when the headache starts, SEEMS to settle it back down. I work now at trying to short-circuit the symptoms as I, personally, have realized that for me there will be no ‘cure’. I live in hope that one will be found soon as there seem to be SO many out there suffering!
As for being a strong person - when you have no option - you just have to keep going - it’s that simple!:smile: As you have suffered for 23 years you already know this, I’m sure.

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True! You do just have to keep going but I don’t think most people realise how hard everyday, even a so called “good” day can be for us. That’s great that Feverfew quells your headache.

Yes the hearing loss does seem the the main bone of contention between MAV and Menieres, although the last doctor I saw said that the “vertigo” is different. It has to be short (days long) attacks of true “spinning” where the room appears to spins around you (like with labyrinthitis) to be Menieres and with MAV it can be “disequilibrium” or a spinning sensation inside the head and be fairly constant to be MAV.

I know all about the “neurotic female” label. So many GP’s have said it was all in my head. Even my current one thought I needed a “mood stabiliser” last summer when things got pretty bad and he refused to refer me to ENT or Neurology despite all my back history. The neuro I saw for headaches a few years back claimed you could only be dizzy for a short time in the prodrome phase of migraine and that my dizziness was down to something different but that I would have to work out what and ask for the right referral!

Yes, thank you. Mine too went from Maniere’s to MAV. I actually think i have both, but hard to tell.

To be quite honest - once I got the Meniere’s diagnosis and was told there was basically nothing to be done about it after the surgery except to give up salt, I pretty much opted out of medical input and simply made my own way. Like you I was tired of the ‘all in the mind’ scenario. I thought I was some special kind of crazy as I could ‘make’ myself dizzy whilst asleep!!! One GP told me to have a baby and I would’nt have time for dizzy spells…well my babies are now in their 40’s and here I still am.with the problem!

For me, Meniere’s remains the (relatively) short periods of true vertigo where the only real option is to sit or lie (different for each episode!) as still as possible without moving even the eyes (sometimes closed is better - sometimes staring at some point on the ceiling) - or even speaking. More than once in my distant youth I could get up from such an episode and return to the party! I could never discern any kind of pattern or cause for the episodes.
What I consider to be MAV involves a lot more constant dizziness (as opposed to ‘true vertigo’), feeling nauseous for long periods, balance constantly ‘off’, plus a string of the other annoying symptoms that most of you experience. Without a doubt a falling barometer causes me some level of discomfort and dis-equilibrium , even if not the full on spins.
Purely my personal opinion is that the Menier’s is caused by something unknown with possibly a genetic connection as my Dad also had it later in life, whilst the MAV is some kind of ‘reaction’ to any number of different things for different people - possibly some side effect of the M in some of us???

That is me to a tee!!!
Jo

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Mazzy - This is me to a tee! I could have written this. I have hearing loss in my left ear, and none of the several doctors I’ve seen have ever associated it with my vertigo and dizziness. They’ve actually said it was unrelated! Anyway, the deafness in one ear, and tinnitus is the least of my problems. I feel that I’ve gotten my vestibular migraines somewhat in control with Verapamil, Diazepam and Imipramine. I feel so much better than the constant dizziness with varying levels, and have not had a true lay-down-with-your-eyes-closed for several hours vertigo spell/attack now for 7 months! My fear is losing hearing in my good ear! When I start to feel unstable/mildly dizzy, usually it is the barometric pressure, or sometimes high stress, not enough sleep, certain lighting or movements. Grocery stores and Costco are a challenge!

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Interesting. The inner ear hearing and balance organs are absolutely intimately integrated with a unified fluid system and both rely on the healthy functioning of the middle ear too. How they could make such an assertion confidently? Some people have vestibular or auditory deficits, but if you have both problems surely the ear is involved? (even if the cause is idiopathic). It goes without saying you may have neurological fallout from this, but I know where I’d lay my chips on this one.

Like turnitaround, I cannot understand why the Drs. don’t associate deafness with balance problems as it’s all ear functioning, but I have definitely been that route!!! So sadly unbeleiveable that nothing has changed in 50 years!!! Glad you have found a regimen that works for you, Audreystcl:

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Oh, I think they do. I’ve read all over they expect deaf people to have balance issues. They just don’t see it from the other angle. Most of them seem to lack the ability to think outside the box I always find. Helen

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It depends on who you get. I am sorry to say there are very few good doctors out there. I have been dealing with this on and off since 1999 and on since 2014. I have had one good nurse practitioner and no good doctors. I have gone to the specialists and they are so full of themselves and don’t give you enough time to make a good evaluation. I won’t go on and on here, but many of my symptoms they dismiss as not being part of the equation. A good doctor address them,

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UPDATE:
AAAAnd,the beast came back! :woozy_face: It started with a few faint spins in the last days of July and built up to include 2 ‘Meniere’s Vertigo’ episodes lasting several hours each, plus the full spectrum of brief, violent spins, dis-equilibrium, dizziness, tiredness, accelerated tinnitus etc, etc. When it started there were a lot of barometric changes, but that has settled for the past week or so. I took a 10 day break from my Biocurcumin (Tumeric) capsules during this time, just in case… but if anything, things got worse. Been back on them for 3 days now and to-day is good…so far, despite having done quite a lot of cleaning and cooking - but NO driving !!! This round seems to have been mostly made worse by physical things…like vibration ( e.g. engine idling at a stop) or visual - could not walk or change head position with multifocals on, computrt/ phone screens etc. I have been experimenting with the Tumeric (Biocurcumin) capsules and changing my diet to exclude/cut down on Gluten, eggs and dairy, which my body has been identified as intolerant to in an effort to see if see if reducing inflammation will help. (maybe the autoimmune connection??) I also take Cannabis oil (with TCH) last thing before bed - which gives me a minimum of 6 hours sleep, but can claim no benefits. to the vertigo or other symptoms.

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Good luck Beth. I think the anti-inflammatory angle is very important.

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I have only recently joined this forum. I also have been a Menieres sufferer and in the past five month’s have also been diagnosed with MAV. This is a terrible " beast" as you say. I am on a super strict diet ( NO- gluten, dairy, sugar ( except from natural fruit,) caffeine, nightshades.) Barometric pressure is also a terrible trigger and this summer has been the worst.
I have recently had to take a leave of absence as a school teacher, so am a bit depressed about that. I am part of a Menieres forum which has been helpful, but felt I needed more insight on this MAV, so I am thankful to find this sight.
So many things you posted, Mazzy, resonate with me. I have not responded well to the synthetic drugs prescribed, so I am trying a more natural route.
Interested with your experimentation with turmeric.
So sorry you are feeling poorly again. Wishing you find the right remedy to go into the longest remission ever. Bonnie

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Welcome to the forum, Bonnie. Thank you for the wishes. Would’nt it be nice to find something that truly keeps this beast at bay! Hope you find help and ideas from the posts here.

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Thanks for the kind welcome, Mazzy. I look forward to reading your posts and the other members.

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