I had my ENT and my neurologist both working on whether I had MAV or Meniere’s Disease with me hoping it was the former. After many tests, they came down on the side of MAV till I lost some hearing in the right ear only and I got the co-morbidity diagnosis too ie “you could also have Meniere’s as well as MAV”. My reaction was " No way. I couldn’t be that unlucky to get both at the same time". Over the last two years however I have started reading that these two conditions could be connected on some sort of continuum. This makes more sense to me. I have tinnitis in the right ear all the time lately and I saw from your poll that a huge majority of MAV sufferers have tinnitis. Also I have read posts here that mention fluid problems in the ear which I get too. I also get a croaky voice when unwell and one nostril gets very blocked. I’m seeing my ENT tomorrow to ask how these might be connected (and to see if the hearing loss has got worse). MAV is a brain thing and MD is a fluid in the ear thing so … how connected?
65% of your brain is dedicated to processing vision and balance. Issues with fluid balance and fluctuating pressure within the inner ear are going to cause changes in the electrical response to movement. If your inner ears start to respond unpredictably your brain will get upset. I suspect migraines are the result of the brains learning algorithm being stretched beyond its capable envelope. Dizziness is probably the experience when the brain is getting a mismatch of signals from what it expects.
I personally don’t think MAV is exclusively a brain thing. Both views are controversial.
This is why we have the oto-neuro specialism.
Saw my ENT doctor earlier this week in Sydney city. Had a comprehensive hearing test first which showed more hearing loss in the right ear (10 - 15 dB more). I know my balance is getting more “off” too and it used to be excellent. Because of the established hearing loss it definitely looks like a mix of Menieres and MAV. There’s a lot they don’t know about all this. He kept admitting as much. The good thing though was that the left ear is within the normal hearing range and so it is unlikely that I will get bilateral hearing loss as he said that usually starts with both ears deteriorating, not just one. Also when I asked (glumly) how much further down I can expect my graph to go he looked at it closely and said “Well, it actually looks like it’s flattening out compared to the last test two years ago.” I said “You mean it’s going to flatten out at THIS level?” “Quite possibly. You’ve had it for quite a while (13 years) so maybe its starting to burn out.” Hurrah! If this is as bad a hearing loss as I’m going to get then that’s not too bad. The bad spinning vertigo which had me unable to move for 24h is almost a thing of the past. The last vertigo attack was in Nov 2016 and I rated it as only 15% as bad as previous ones. I do still get ‘attacks’ though (stress is a big trigger) and then have to put up with a 2-3 months recovery period with raging white noise tinnitis, brain fog, aural fullness, disorientation, positional vertigo swings, dizziness caused by visual busyness etc etc. The ENT’s explanation about all the fluid symptoms I get at the time of an attack (croaky voice, sniffly nose, blocked ear, blocked nostrils etc) is that my “autonomic nervous system is reacting” and throwing everything at whatever is irritating it. Could be migraine or stress or caffeine or alcohol or salty prosciutto (which I still eat). I asked whether he had heard of the theory that migraine is a RESPONSE to one of these ‘attacks’ and he again said “Could be. We just don’t know. Chicken and egg problem.” He definitely sees MAV and Meniere’s as on the one continuum. Permanent hearing loss brings you closer to the Meniere’s end. He gave me a prescription for serc (I try not to take any meds) and when I showed dismay at having to take it every day changed his advice to “you could try taking it when you have symptoms. Not sure really how useful it is but it’s known to be safe.” I had been using Stemetil or cinnarizine occasionally during recovery periods (which he called ‘washouts’) and he seemed to think serc would be better, particularly as Meniere’s is now indicated as a definite part of my problem. I’m interested in the role of brain training in stopping my vestibular damage/balance from getting any worse and will probably try this when I get my next burst of motivation to beat this thing. I would also love to hear from others who have had Meniere’s for a long time - how long does it go on for and what is the state of your hearing and balance at the end? Can you have degrees of Meniere’s (mild to severe)?. Does the audiology graph flatten out but keep dropping?
Hi DizzyDame. Sorry to hear about the progression. May I ask what the profile is of your hearing loss? I was originally diagnosed with MAV but had obvious High Frequency loss even then. This worsened by 10db over a few months then stabilised. My hearing has since shown mild improvements.
Hi. We’ve a wide variety of experience on here. About the only thing I remember about Menieres is many times being told I definitely didn’t have it when I’d much sooner have been told what I did have. It’s better to know as treatment varies from MAV. I do remember talking to at least one long-term Menieres sufferer on here and I bet she could help you out here, if @mazzy does pick up on this (she’s not always around) try PM’ing her. Helen
Hi Helen and Dizzy Dame! I am usually around, but just feel that I have told my story multiple times and have little to add these days, as I don’t take any meds as such. I will try to write a personal diary in the next few days so that it is there should it be able to help anyone. For now: a very brief outline. I have suffered vertigo episodes for 50 years - eventually got a diagnosis 10 years in, by which time I was already ‘socially’ deaf in the left ear. Surgery was supposed to halt the onset??? - but in fact I have been deaf in that ear for 40+ years - a hearing aid was never suggested. The only med I was prescribed was something called Stugeron Forte - which helped nothing so I dis-continued. The vertigo episodes continued - usually in groups lasting weeks to months at a time, but each actual vertigo attack ran between 1/2 hour to a full day - leaving a ‘hangover’ that felt like just that! - without the fun part getting there! The only thing to do whilst having an episode was to lie or sit perfectly still and wait it out. Once it was over, I could carry on with life - albeit tired and a bit washed out. Pre 2016 I had been all but free of actual bad vertigo episodes for probably almost 30 years, although with hindsight and research, I realize that there were a lot of little things that I had no idea were connected to all of this! …And then it returned with a vengeance! The initial return was one of the worst full blown attacks I could recall. Then the other strange spins, nystagmus, nauseous feeling all the time etc, etc. set in. Visited a local ENT and go NO help, as his specialty was the Epley movement and not what I needed. Research brought me here, to this forum, for which I will be forever grateful as it helped me realize that I was not alone! I continued with all of these symptoms with ‘remissions’ of between a week or so to a break in 2017 of 10 months. I am currently into my 3rd month of remission (from vertigo) again…here’s hoping for a long one! Around this time last year I woke up one morning with virtually no hearing in the ‘good’ ear… ENT declared I was going bi-lateral and hearing would fluctuate, nothing to do but live with it. I got hearing aids, but could not tolerate one in the long deaf ear. Anti-virals and cortisone did nothing except give me palpitations. Just as suddently, the hearing returned spontaneously to it’s previous level. I will be going some time soon to check if the hearing level has declined any further, although I’m not aware of a change.
I often react badly to many meds, so have stayed clear, rather taking some ‘supplements’. If I have an episode where I start to feel sick, I take a stemetil which seems to keep the vomiting in check and may help to shorten the episode (?) If I feel headachy - as often happens when the barometer drops suddenly, I take feverfew drops.
I might just add that I am in South Africa, so a lot of things medically speaking are different to those of you in the U.K. or USA. I know of people who take Cert for various kinds of dizziness (at my age this is not uncommon: smile:,) but have not tried it as it is frankly out of my price range - with no medical aid every cent comes out of our pockets.
My personal view ONLY!! - is that something goes wrong within the ear to cause the menieners/hypercausis/whatever in the first place, which then causes trouble with electrical impulses to the brain…and we all know where that leads!
To answer your question about degrees of Meniere’s… reading about the experiences of others - it seems that what I have had for so long is relatively mild (in between episodes) to what some experience. It is hard to tell as we all react differently to situations and in the end all one has to go one is what patients tell you! This last time around they were talking about MRI’s etc, etc, until I actually wrote out a history for them , from which they concluded that it was just the progression of Meniere’s .
Hope you can come to terms with your life as it is, and try to work out what works (and not!) for you personally, as it seems that everyone is different and different things help different people. My final rant is that truly very little progress has been made in this field since the 1970’s! HOW SAD IS THAT!!!
Thanks for chipping in. Sorry I should have said you are usually ‘lurking’ then maybe rather than ‘not around’. Sort of with us ‘with spirit’, eh? I really so wanted Dizzy Dame to speak with a fellow sufferer directly. So much better. You really know really know Menieres. It’s only a word to me.
Well, that’s so true. Same can be said about MAV. All they’ve managed to do since 1970’s is rename it a couple of more times. I’ve had it so long now I had same thing under two different titles for what good that’s done me! I ranted at home only yesterday at all the latest news about photographing A Black Hole in space, and guess what, it looked just like a black hole. Yawn! What a waste of money and intelligent brains when there’s so many other more pressing things need sorting, such as illnesses, Global Warming, damage done by waste plastics etc, etc. Helen
Thankyou so much Mazzy for taking the time to write this and to you Helen for facilitating. I very much appreciate it. Sat back in my chair Mazzy at the phrase “I have suffered vertigo episodes for 50 years”… wow …!! …whoaaah … that was sobering. Makes my 13 years look like chicken feed. I would love to read a personal diary of your illness if you are prepared to write it. Whatever info you can offer gratefully received I also keep a personal diary because after a few years of horrible, random vertigo attacks I was DETERMINED to solve it. There’s a quote I have in my diary that I got from somewhere - “True vertigo is like love. When it’s there you know.” (Sorry, black humour!). I threw everything at it. Saw so many specialists and experts, have had three brain scans, checked my carotid arteries, had caloric testing of my ears, numerous other ear tests, went off alcohol completely, drank more water religiously, went off caffeinated coffee, started taking magnesium glycinate, started taking Vit B2 and then also a B Vitamin complex, exercised daily, started attending the excellent Migraine World Summit online every year, experimented with taking Imigran if I thought things were going off (I used to take this for migraine but I don’t really get headaches now esp. since the water, magnesium and Vit B2), retired from work and took other pressures off myself. A year ago I launched off on the keto diet to see if cutting out sugar and carbs might help and it did. Complex carbs like lentils are ok for me though but never a lot. I have a massive folder on my computer of information around the subject, stacks of medical journal articles, studies and reports that I can barely follow the detail of. What causes it?? Migraine? Herpes virus? Osteoporosis? Intrusive dental work? I even toyed with the idea of buying an anatomical model of the inner ear online haha so I could study the physical side of it and teach myself! The specialists in Australia are very professional and up-to-date but I do get the feeling that my case is not of great interest or concern to them (because I am not as disabled by it as many others) and, more importantly, there is so much they don’t know. I don’t blame them for either of these things. I am awestruck by the suffering and resilience of others that I’ve read about on sites like this. I shouldn’t be taking up too much of specialists’ time when others have more need of it and anyway, I’m interested to do my own research and reading. [Another great quote - “the vestibular system is evolutionarily ancient, with many back doors into multiple brain areas”]. I agree that frustratingly little progress has been made since the 1970’s. Vertigo and ear problems are not very visible problems (because we’re flat on our backs at home in bed!) and they’re not life threatening like cancer so this might be partly why. That’s no consolation though and quality of life should be valued just as much as staying alive in my opinion. Sites like this are wonderful. Even this morning I found the phrase “magneto head” mentioned on this site which I have definitely and scarily experienced a few times but never read about before. Again, thankyou.
Did you try any migraine prophylactic meds ? Did not see any mention of that.
You are so very welcome. It’s great to be able to help. All this protracted suffering should really be avoidable in the 21st century. The lack of research and expertise in vestibular fields really beggars belief. As you say these conditions are invisible in more ways than one. We don’t necessarily look obviously sick and at our worst we are flat out in bed and suffering well out of sight, and because it’s not life threatening it gets pushed to the back of the queue. The other major thing I find amazing is how unscientific diagnosis by omission can be. My vertigo went undiagnosed for more than 12 years because I didn’t experience headaches. Even then I only got a ‘probable’ Migraine Associated Vertigo’ diagnosis most probably because of the lack of true headach/aura. BUT after twelve years I had my first ever aura the night after my MRI scan so the neurologist never got to know about that! Similar seems to happen to possible Menieres cases. Seems the deafness is needed for confirmation but then again that can come on much later. Retrospective diagnoses never seem very scientific to me. In my book they are only slightly more use than post mortem ones. Helen
I don’t take preventive medications of any kind (vitamins and the flu vaccine aside) because I’m too concerned about drug interactions and side effects. The chemistry of our body is so subtle and complex. I suspect many drugs to be very blunt instruments. If I felt a drug was safe with a long history of hardly any side effects then I will try it which is why I’m giving betahistine a go at the moment. I take Stemetil or Cinnarizine sometimes when I feel bad brain fog and disorientation but that’s only when I can’t get out and walk. Walking usually helps more because of the blood flow to the brain and focussing on a non-moving, distant scene. For actual attacks of spinning vertigo I wait it out. I am concerned that each bad vertigo attack might make my hearing worse so I do want to prevent them happening but not by taking regular meds that may well give me other problems. I want to find the cause of the vertigo and stop that.
Oh yes! That was a very big, unwelcome surprise to me too. Like “You’re kidding, right? That’s how you’re diagnosing??” Yep. Post mortem diagnosis looks pretty good by comparison haha. I’m seriously thinking of donating my brain to the right scientists along with all my research and diaries and lists of self-discovered treatments. Not just yet though
I see we share Black Humour. Good idea though these days they will generally only use material collected in real-time. It gets pretty hopeless. We cannot win! Helen
If you can try a drug that can increase your threshold it can be a god send. The side effects are a trade off. For me i am trading less dizziness for weight gain(side effect of effexor + Amitriptyline). Meds also help you get to normal sooner so i won’t be too caught up on the body chemistry thingy. Betahistine is a placebo at best and i was on it for a while but my diagnosis is VM. betahistine could be more effective for Meniere’s. If you have continuous dizziness then that is VM and i would definitely recommend a preventative My 2 cents.
Taken continuously I understand it is the standard ‘treatment’ available in the UK for Menieres patients. From what I’ve read Menieres does eventually burns itself out. Chris Packham the UK Wildlife Presenter/Photographer’s seems to have done that now. As you’ve had it so long perhaps yours is about to do the same if what the consultant said holds true. I understand they tend to leave people with some degree of hearing loss,
I think that might be one of the major differences between Menieres and MAV. Attacks can actually cause damage to the hearing whereas MAV only affects the hearing short-term not doing lasting harm. Whilst there are drugs used for migraine prevention, I am not sure there are any to prevent Menieres attacks, are there? I’ve no idea if the migraine preventatives would help a person with both anyway. Do you? Though I’d be tempted to try if only because the experts say if the migraine preventatives work then it was Migraine you had!
Everybody who suffers with it would love to do that but I think it’s highly unlikely to happen. Certainly not in the foreseeable future. Unfortunately. Helen
I considered the things that you guys have written about meds and finally decided to try the betahistine. I was taking 16 mg 3 times a day but I’ve cut it down to 2 times a day. I’ve been taking it for almost 2 months now. No side effects whatsoever and I do have to admit that I’m getting virtually none of those annoying symptoms like swings of dizziness, eyes not behaving properly, feelings of unreality, “off” spacey feelings in the head … all of that stuff. I haven’t had any of that for all this time. Just a delightful ‘flat head’ (my phrase for normality). The tinnitis in my right ear hasn’t changed though. Funny considering the ENT said that studies have not been able to find a significant effect. But he said that anecdotally people seemed to do well on it. Of course some might say it’s just a placebo effect but I don’t buy that as far as I’m concerned.
Well so pleased you’ve found some relief. Betahistine isn’t standard treatment for MAV as far as I’m aware so maybe yours leans towards Menieres after all. Symptom control is the main thing so you can get on with life. Helen