I’m really thinking about speaking to specialist to ask about ear surgery and to remove the inner part etc. I know I would be deaf on that side but can’t hack the vertigo anymore.
Has anyone had any procedures done with success?
I’m at my whits end with it all and as much as I fight to carry on with this illness , I just sometimes want to just give up and get something done immediately.
I’m unhappy that no one seems to have a answer and just gives medication etc.
Look forward to your replies.
You have that much vertigo? How often?
By vertigo do you mean dizziness? I wouldn’t class vertigo as dizziness, I define the vertigo symptom as the infrequent spinning attacks. I get that sometimes in bed, but its fairly mild most of the time.
Medical science improves year by year, so I’d not recommend any damaging techniques, not only that your condition may ‘burn out’ of its own accord - so why opt for deliberate, permanent damage? - but I guess its a very personal decision.
Frustrating that the only surgical option seems destructive - how very Victorian!
The low dose gentamicin procedure seems to give Meniere’s sufferers relief from vertigo, with less risk to hearing, but you are still left with fullness.
Dr. Hain writes about that here:
NB I don’t think this is a good option for MAV sufferers as vertigo is not usually the worst symptom.
You have more of a Meniere’s syndrome? ie infrequent vertigo attacks as opposed to 24/7 dizziness?
I get mild vertigo infrequently but find that Amitriptyline makes that much more bearable, its not really an issue.
The longterm mild imbalance is more my issue and the 24/7 tinnitus.
Is mav more frequent vertigo etc and menieres is less frequent ?
I get problems once a year but it’s last for a couple months or so and mainly in the winter which is strange.
I wouldn’t say it’s spinning but more so feel like the whole place is going upside down left to right or maybe on a flat surface but feel like I’m on a mountain looking down? Does that make sense? What do you think it is?
Thanks I have replied below to your reply.
MAV is generally 24/7 dizziness/imbalance, nausea, occasional ear pain/pressure (but not fullness at least according to my neuro), tinnitus and migraines.
The vertigo element of MAV is infrequent and usually mild, unlike the experiences I’ve read of Menieres attacks which sound much more violent. MAV sufferers usually get them in bed and call them the ‘mini spins’.
MAV usually responds very well to migraine prophylaxis and this can not only help with the migraine attacks but can also reduce the dizziness sensation and nausea. The drugs don’t help with the ear pressure/pain nor the tinnitus.
Be careful with surgery. If they do anything to the inner ear, you may also lose your balance. It takes a good amount of time for the remaining inner ear to compensate for the loss and you can be quite incapacitated during that recovery . You also lose binaural sound awareness. You will not be able to tell which direction a sound is coming from and that becomes irritating. There are several reasons why we have two hearing/balance end organs and it is a hardship to lose one of them.
I used to get the full blown vertigo issues all the time, not just on occasion. The vertigo lead to nausea, vomiting (sorry) and other awful issues. I would end up in the ER. Once, the dehydration led to A-Fib. I would not opt for surgery until I had tried all options: restricted diet, medication and trigger avoidance. I hope you are seeing a neurologist as they seem to be more knowledgeable. Do not worry about the diagnosis so much as the solution. Making some sacrifices far outweighs losing your hearing et al. Have you tried all the options short of surgery? I have found control with diet, reducing head motion, etc. and Nortriptyline when needed. Take care. It is good that you have come to this site and are doing research. The focus here is Migraine, with or without headache, and the associated symptoms like persistent vertigo and balance issues and tinnitus and sinus fullness and ear fullness… There are other sites devoted to Menieres which you can also check out. (www.vertigotalesandtastes.blogspot.com)
I’d agree with that. There seems to be a broad spectrum to these conditions. Go with symptom management and hope time improves the underlying issue.
You seem very knowledgable
Thanks for taking the time to help because just talking helps. Which is more than some docs do.
So do you think I would have meneires or mav or neither ?
Symptoms as follows
Unsteady
Right ear low to mild tinnitus but fluctuates
Fullness right ear
When attacks happen I feel weak at the knees then it grows and I sway and lose balance. I struggle to digest sound vision etc. If I move I feel like something is pulling me back the other way.
I feel the floor is a hill when I’m on a flat.
Occasional neck problems too like tense etc.
Lately though a attack will last a hour then fade away. It has happened in clusters of a week
Three attacks a day lasting a hour.
My body seems very sensitive to change so like I woke up the other day and I had a attack in the shower and couldn’t stand properly. I don’t feel like I’m spinning so is that not vertigo ?
Yes I feel like salt and caffeine make things worse and not eating regularly.
I don’t vomit but do feel sick and like mild motion sickness.
Laying down clears things up.
I’m at my whits end now as I’m just getting over the last couple of weeks of hell. When it clears up I feel really good and can go months without any real problems.
It’s like my body is lacking something .
The neurotologist in London professor luxon diagnosed mav coupled with some symtoms of menieres.
I had lots of tests done.
When it clears up my hearing on effected side clears up again and I feel normal.
It’s all confusing and I try not to let it get the better of me. I’m mentally stronger than I used to be now about it
Thanks for your time.
I would not want to even attempt to over-rule your knowledgeable physician.
However, I would say that it seems everyone has a different mix of what is, essentially, some kind of ear trouble.
Yes, I think you get mentally stronger once you’ve got the point where the symptoms no longer shock or surprise you so you know how bad it can get and no worse.
As per spinninggirl, focus on what makes you feel better whilst your ears calm down perhaps in time.
Chawnz, I am not in a position to offer advice - just to share my experiences, in case it may help you. My whole, long story is in another category - Information vault - Alternative treatments - ‘My experience with supplements…’ .
Most of what you describe above is what I have had for the past 40-something years. I was eventually diagnosed with Meniere’s and operated on. I do not know EXACTLY what the op was - probably more invasive than anything to-day would be. I still have a sensitive dent in the bone behind that ear. I had already lost a good deal of hearing in the affected (left) ear by the time I found an ENT who offered a diagnosis, and was told that the op would prevent further hearing deterioration.? Be that as it may - I was still declared ‘socially deaf’ in that ear after the operation, (as Spinninggirl says) - I have lost the ability to tell from which direction a sound comes - and the tinnitus, vertigo/spinning/dizziness and head/ear fullness still remain. I continued to have ‘visits from Mr. M’ as it became known in our household on and off. Usually I would suffer episodes lasting between about an hour (sometimes up to 3 -5 hrs) of vertigo - mine often felt like I was staring into a waterfall - the world rushing ‘downwards’(??) - and sitting or lying absolutely still for the duration was the only option. Occasionally If it was a very bad attack - there was nausea and vomiting. However (unlike MAV), once the episode was over, I’d feel O.K. and able to get on with life till the next one. (Sometimes a hung-over feeling the following day after a bad bout) These clusters of episodes would last a few weeks or months, then disappear for months, and later, years, until the next time.
In Dec. 15 - it came back in full force after years of freedom!! I spent one of the most awful days of my life on the re-arrival, and then continued with the epsodes, except that this time I was more tired and miserable between - which I must say I put down to age, as I am now 68. I had about 3 months clear and then it all returned in a different form which more closely resembles MAV. Basically - short, violent upheavals feel as if the earth is throwing me off my feet, etc, etc, …but mostly there was the fairly constant feeling of being off-balance, just on the edge of nauseous, exhausted, and generally uninterested in doing anything - also moving, bending, vibrations would make it worse.
At the end of last year I embarked on a concerted effort to improve, (pretty much) cut out coffee and chocolate (caffeine in any form) and started taking supplements and herbal remedies. I gave up added salt 'back in the day ’ . 'Whether this what is keeping me almost symptom free or whether it is all in remission again - I can’t confirm - only that I mostly feel human again and can get on with my life. For me - a drop in the air pressure is a definite trigger!!! So when the barometer drops - there is no coffee or chocolate for me!
I must add that the tinnitus is a part of my life -it never completely abates, but does fluctuate. Hearing has never returned, but I cope pretty well (most of my peers are going deaf these days anyway 
) - except in a crowd or if there is loud music or other background noise - then I cannot hear what anyone is saying!
I have definitely come to the conclusion also that I am treating the symptoms - I don’t care what name you put on the beast itself!
Please don’t just give up!! Admittedly I have been surprised (and sad) to find that basically little new is known about any of this since 50 years ago!! All that is out there are drugs to help certain symptoms, it seems. But if you can find the right drug for your situation, as James has - go for it!
However…medical science is moving at galloping pace…if you can hang in there, I would probably not go the surgery route yet - only to find that they come up with a viable answer the following year!!!
Wishing you well.
Yeah its ridiculous given how so much progress has been made with, for example, computers over that period. Imagine having to use a computer from 1967?! Yet in ENT medicine little seems to have changed since Paracelsus in the mid 1600’s!
I think a possible way to tell MAv from MAV and BPPV is nystgamus (eye twitching) .
I dont get any classic eye movement when testing - have been ruled out as having any ear related (balance canals) problems but have many MAV symptoms including the sleep Vertigo shock which seems to be a rare symptom.
You’ve done well and should be proud of yourself for coping and sounds like you live a fairly normal life.
I think we are all feeling great when we no longer think about the symptoms every five minutes. That’s when I know I’m free and happy and my personality is shining again and rebuild my self with confidence etc.
I will keep going on but will look to get allergy tests done and see what I’m lacking etc. All this is just what ifs and maybes which is so frustrating.
No one has a clear cut it’s this or that.
We can’t worry about absolutely everything we may eat or consume or weather climate etc.
It’s got to be in my opinion foods that I eat or stress and recently what I have thought it could be to do with weather. It’s all assumptions. I don’t have any clear triggers etc and I hate that. It’s like I can’t seem to do anything about it.
Here’s what frustrates the life out of me when I have a attack.
I eat pretty much the same all year round and done the same thing s for a few years like work and sports so I could understand more if foods that I ate changed around the time I had a attack etc but they don’t. It’s so annoying.
Ok yeah I’m kind of lucky in one way that it only kind of happens once a year and last a month or so but I still need to get to the bottom of it and try to stop having to depend on meds every day.
Perhaps we all just have dodgy ears!! Goodluck anyway.
Thank you- I have had no option but to carry on leading as normal a life as possible, frustrating though it sometimes is!!
There is a lot more known about allergies and things these days, so that might well be helpful! Going on your ‘seasonal’ bouts, it would seem that (if my original diagnosis was correct) you possibly fall within the Menieres spectrum - although I am of the opinion that all these names are branches of the same tree.
I have become pretty certain that a fall in the barometer pressure is my main ‘trigger’…followed by too much screen (p.c., tablet, phone) time, and more than a little caffeine (in any form) on top of those is BAD news! So far, I have found no evidence of any other food triggers and do not follow a diet. I gave up added salt way back when, but now add a little, though I have largely lost the taste for it. Alcohol never was a problem for me, but cutting it out is no longer the problem it would have been back then 
Have had no reaction to a beer or good brandy of late.
Have you ever tried taking a Magnesium supplement? - research seems to indicate that we all lack this in our modern diet, and I believe that it has been a help for me on several fronts.
I will be interested in the results of your allergy test. I turned one down , as it is very expensive here and I don’t need to go broke and then feel guilty about eating everything I enjoy!
Oh where do you live Beth?
I will look into magnesium too thankyou. I will get a allergy test then look to see a nutritionist to see if they can help with a structured vitamin intake.
Yes you said it could be menieires moreso however docs said the moreso migraine associated vertigo coupled with some menieres so it’s true what you say that it all just blends into one and that’s the frustrating part as nobody knows exactly the causes to a certain point.
There’s lots of what ifs or it could be this or that . There are also a lot of other problems that people have that go unnoticed due to lack of tests etc and these also present the same kind of symptoms as mav and menieres so I really hope that something comes of light re the allergy test as I doc
Cont… I hope something positive comes from the allergy test and that it’s something that can be repaired etc. How long have you suffered for Beth?
And your age also ?
I’m glad you can go about things quite normally.
I can also but it’s very tricky day to day when I’m suffering.
Thanks
I am in South Africa, 68 yrs old and started with ‘the dizzies’ around age 20. Could’nt get a diagnosis for another 10 years - and little has changed since then it seems!!! I got nothing useful from my own GP except a script for Stemetil ‘in case’ for nausea. and even less from the ENT once he decided I did’nt have BPPV - his specialty, it seems. He was not one bit interested in my history or anything else.
Definitely, seeing the many symptoms listed here, I recognise a lot of little things that have been part of my life for ages…are they related to all this??? who knows!!!