Glad to have found your site. I have had tinnitus in my left ear for almost a decade now after a rock concert, however recently started having vertigo.
I have seen 2 of the top menieres experts in Sydney who won’t diagnose me with menieres as I don’t have any verifiable hearing loss with these episodes, however they have diagnosed me with vestibular migraines.
The two worst vertigo episodes I have had have both started when driving and I’ve had to pull over and close my eyes while my wife drives me back. The biggest issue is though, ever since these episodes 2 weeks ago, the last 2 weeks I’ve had wildly fluctuating feelings of being almost fine, to then having unbelievable amounts of head and ear pressure and feeling woozy and dizzy. It changes all throughout the day and gets worse when driving. I feel like I can’t focus properly and my hearing gets more sensitive to annoying and loud sounds throughout the day as well.
I really think this must be menieres as I’ve had ongoing tinnitus in one ear for so long and my ears have had issues with fullness for years which were relieved with grommets. The Otologists are telling me it is a lot more likely MAV though due to not having hearing loss and the symptoms often mimic each other.
Is this correct? Can MAV cause vertigo and ongoing pressure in the head and ears and the feeling of being off balance and disassociated? Is it really just a hearing test that differentiates between menieres and MAV? Do my symptoms sound like MAV at all? Is there anything you can take for these symptoms?
MAV is a diagnosis, not an aetiology. There may be inner ear involvement. It’s not been ruled out or ruled in. Some believe it’s migraine, but they never explain what causes those migraines. I’m very sceptical of that explanation, because it isn’t one! I think it’s more likely MAV is a form of Hydrops, but has a different (set of ) cause(s), presentation and natural history to Meniere’s
I have Secondary Hydrops and it presents identically to MAV and has the same dietary triggers and treatment. You might also say I have MAV - I fit the criteria! I got my condition through injuring my ear which caused a perilymph leak and that caused a fluid imbalance that went on to give me MAV/Secondary Hydrops. This is probably much more common than people give it credit.
I agree tinnitus suggests inner ear involvement, but it doesn’t mean you have Meniere’s.
I have chronic tinnitus and very mild high frequency loss, but no low frequency loss nor spells of deafness like a Meniere’s sufferer has.
I’ve read a lot of people saying that menieres and mav have different treatment options, that’s why it’s useful to know. My vertigo does go on for hours and has me needing to close my eyes and just lie down flat on the bed in the dark and wait it out.
The ongoing periods of brain fog and a full head and feeling giddy all the time is the hardest part. I want to know if it can happen with MAV in between episodes of vertigo.
Absolutely. TBH, that’s partly because Meniere’s-specific treatment isn’t very good.
MAV may be more self limiting (mine has improved tremendously) Yes you sound like you might respond to the MAV protocol, detailed here in the Support Wiki.
People don’t talk a lot about Secondary Hydrops, but two of my doctors (I got 4 opinions) suggested the same drugs as the doctors who suggested I had MAV.
This may be a lot to take in, but might explain some of the confusion you’ve been having.
The MAV protocol is worth trying to see if you respond to it - I did. I am now off meds. I tolerate the remaining symptoms which still fluctuate.
I can highly recommend Amitriptyline as a first try but discuss this with an oto-neurologist.
I find it hard to get a concrete diagnosis as the top menieres experts in Sydney all say I don’t have the classic menieres symptoms of pressure in the ear, along with low tone hearing loss, aural fullness and violent vertigo followed by remission.
Reading online though, it seems many people have been diagnosed with menieres without all the classic symptoms being present. I wonder if hearing loss really needs to be observed for that diagnosis to be made? I had an echog done which did not indicate hydrops, but the jury seems to be out on whether echog’s are reliable either. It just seems like there is so much unknown.
They are not reliable tests.
I suspect that improvements in diagnostics and science will cast additional light on MAV.
Your best bet is to try the MAV protocol under supervision of an oto-neurologist and see if it helps you.
Some of the drugs target the neurological fall out of the condition and can make you much more comfortable and help you regain any lost sanity.
It didn’t do anything for my tinnitus and mild hearing loss, but that’s because I suspect the pressure has yet to drop far enough (this has never been measured btw, but it’s obvious to me as I no longer get as much audio distortion with loud noises). I no longer get vertigo (it lasted for a year or two).
Let me make one thing clear: inner ear hydrops <> Menieres. You can have the former without the latter. I was shocked that this was not more widely understood. So many people assume they are one and the same thing. This is not the case. Which is why a lot of people think there is just ‘migraine’ and ‘menieres’. That is not what the best doctors believe. A good ear doctor knows that after trauma, the ear can get into a hydropic state but that doesn’t mean you have classic degenerative Menieres. Think of it like a complex swelling that takes forever to subside (mainly because there are inherent exacerbations).
That is very helpful turnitaround
My Otologist said to me, only two things can cause episodic hours long vertigo and that is menieres or mav. No-one ever suggested I could have hydrops without it progressing to full blown degenerative menieres with hearing loss etc.
Your idea of a swelling makes a lot of sense, and is likely the reason the ear feels so full and loud noises distort and turn into a static like mess when it’s at it’s worst for me. It seems like I just really need to work on getting this swelling or pressure under control.
Keeping within strict committee guidelines, you may have MAV, but that doesn’t explain why YOU have MAV.
I hope you get the distinction.
It is my theory that most chronic tinnitus is due to a degree of Hydrops. Anyone can have it to varying degrees. For some it’s just tinnitus.
Your body does this on its own.
But I believe it’s very useful to drink lots of herbal tea and water, making the kidneys work hard.
Secondly, keep your head UP. Don’t bend down below your waist, keep your head up on a stack of pillows (I use three). Don’t strain (e.g. no lifting of heavy objects). Don’t do anything which increases head pressure basically.
It makes me angry to think that many who are being told they have a migraine, might actually benefit from knowing there are physical things they could also do to help themselves.
Sorry you are having doubts about yr diagnosis because one really does need a diagnosis one can believe credible. Having said that a definite, ‘it’s X, for sure’ isn’t likely to happen with MAV because there’s no test and it’s diagnosis of exclusion. If you can control it with migraine preventatives most consultants will tell you it was probably MAV in the first place! That’s about as scientific as it seems to get. Quite often it’s difficult to differentiate between Menieres and MAV I’ve read, and I’m sure you’ll find @sputnik2’s comments of use because if my memory serves me correctly she was many years misdiagnosed with Menieres and, as you say, treatment differs quite considerably. Apparently, just to muddy waters further, it’s not unheard if for individuals to actually have both.
Since spotting your post I’ve searched again but as yet failed to locate it but I know I’ve seen specific lists telling clinicians how to defferentiate the two. Search Practicalneurology.com site for info on Migraine Associated Vertigo has some info. Suggest before that you sit down and make detailed list of your symptoms than compare to VM/MAV symptoms list and Menieres. Although that’s not going to be foolproof I found because MAV changes as time goes by, it morphs, so it’s quite likely if your don’t display a particular symptom, it’s just because it hasn’t manifested, YET. This could of course also be the case with yr lack of hearing loss with Menieres.
Yes, absolutely. 24/7, and for some. (like me), for years on end. You can refer any consultant who disbelieves that to me directly! MAV doesn’t have to be episodic, it can be chronic, and that may well be ONE difference from Menieres. I understand that is only episodic. Obviously migraine associated vertigo should give some migraine type symptoms, ie headache, light sensitivity. True photophobia I’ve read is virtually exclusive to migraine, so much so as to be almost diagnostic. Thinking about it Aura must surely be too. To have MAV there should be a migraine history of some sort, either direct or familial.
Hope my comments may help. Good luck with your search for the answer. Helen