Does anyone have Ménière's disease?

[ivfbabymomma1]

It's pretty rare so not expecting loads of answers but if does anyone have it?
I've had it for 5 years and just wanted other people's experiences? I'm currently supporting the loudest tinnitus I've ever experienced it's deafening 😭

@TheRedShoes75 that's really really interesting thank you! It would make sense as benti is all I take and I never really feel much better! Here's hoping the injections help! Are they as horrific as they sound?. I would give you complete hearing in that ear to not have tinnitus!! I also rely heavily on lip reading which is a nightmare with masks 😂😂

@Kittyshopping that's really good! Did anything in particular make it go away?

@iklboo that's really good! My work are useless with understanding it! And the horrible office lights (you know the long tube ones) set me off something horrible!!

@ivfbabymomma1 - the injections aren't that bad. You get an anaesthetic cream first, which sounds weird going in. Then the injection, which can make you a little woozy but it doesn't hurt. My consultant tells me to lie down & relax for 30 mins before getting up & going home. My ear is a little sore afterwards but worth it for the symptoms relief.

I’ve had it for about 15 years, just on one side. I’m profoundly deaf in that ear, with permanent tinnitus.
For the first 5 years it was really awful, attacks all the time including drop attacks. Serc and dietary changes made no difference nor did taking a supplement regime which I tried for about 6 months.
In the end, touch wood and keep everything crossed, the attacks grew less severe and less frequent and I’ve not had any for a good while now. Even got my driving licence back, although I’ve not dared to drive yet.

So I’m hoping it has burned out, which can happen, and I’ve “only ” been left with the deafness and tinnitus.

At its worst I was under a really specialist team at Charing Cross Hospital who gave me all sorts of tests but allowed me to make my own treatment decisions. If you can get referred there I’d recommend it (no idea how that works - I live nearby and was lucky that my GP referred me there when I asked)

Like others have said, it eventually burned itself out. I’m 60% deaf in one ear and wear a hearing aid. All other symptoms have gone.

The injections are fine. Sound a lot worse than they are. In my experience they’re worth having but I think they’re worth a try because anything’s better than regular attacks. I don’t drive much and I do stay at home most of the time because I’m scared of having an attack in public (with the uncontrollable D&V that almost always accompany it).

My mum has this, she's in her 80's

She will have an attack if she does too much, especially things where she is bending down like gardening.
If she's in a noisy environment that 'jangles' her ears to much.

Last bad attack was during a concert last year. She was sick, fainted and then knocked herself unconscious.

The tinnitus is managed most of the time.

Yes, I’ve been diagnosed in the past year.
I take 16mg of betahistine 3 x a day which pretty much keeps the vertigo at bay.
I have continual tinnitus and am also partially deaf in that same ear.
Have had some horrible vertigo attacks in the past, but not for over a year now although I do have ‘off’ days. I wfh partially because i then don’t have to worry about attacks at work.

Not sure if this bit of history will be of practical help, but I suppose it might be of interest:

thejns.org/view/journals/j-neurosurg/131/1/article-p304.xml#:~:text=On%20May%205%2C%201961%2C%20Alan,M%C3%A9ni%C3%A8re's%20disease%2C%20until%20William%20F.

@JustDanceAddict you've basically written exactly what's happened/happening to me! I almost want a hearing aid now! I can only use my phone in one ear!

Thank you so much for replies! So interesting/reassuring! I don't get many drop attacks but the tinnitus/deafness is my main issue! Tilting my head a certain way can bring it on! And that's looking down, I have to then look up to counterbalance it!

Oh yes to noisy environments! And going to the cinema can be an absolute nightmare.

@hiredandsqueak

I had, what was thought to be labyrinthitis three months ago where I had tinnitus and awful dizziness. I'm left with tinnitus in one ear (that I notice more mornings and evenings) and occasional dizziness. Anyone know what's the difference between labyrinthitis and Menieres?

I had labyrinthitis about 15 years ago. My left ear has never been quite right since. I get the dizziness back if I am severely dehydrated. I assume is not Menieres but who knows 🤷‍♀️

I don't have Menieres but do have tinnitus and hearing loss. I had labyrinthitis years ago which eventually cleared up.

Out if interest, what does your audiogram look like? In my left ear, it's curved downwards in the middle like a cookie bite, indicating severe loss in the mid frequencies and mild at the other ends of the spectrum. In my right, the line goes straight then does a sharp downturn, indicating high frequency loss.

Also, what is your tinnitus like? Mine is hissing on both sides but, weirdly, I barely notice it on the left even though it's deafer. I also have a lower tone on my right, like a finer running around a glass.

The main reason I am asking is because I do wonder if Menieres could be a possibility

My husband has it. Not so bad at present, but the tinnitus can be bad fornhim its also wrecked his hearing, should wear aids bit doesnt mainly certain pitches. He has subtitles on tv and its on loud. He doesnt complain about to much 😉

We got my mum Bluetooth headphones that work with her TV. - she uses them and subtitles so the tv isn't vibrating the whole house.
Her hearing is terrible but the hearing aids can sometimes be too much for her.
The other day her ear popped and the volume in her hearing aids meant she could suddenly hear us in the other room so load she felt sick.

She's lucky in that she can tell if she is near an attack most of the time and can act accordingly.

She's on betahistines too.

Ivfbaby - I have been offered a hearing aid but so far resisted as I mainly find it annoying when I’m out with background noise - I have found w wearing masks I do rely unintentionally on lip reading. A friend of mine has hearing loss in one ear too so when we go out we have to be careful where we sit in relation to each other!!
I expect my right ear compensates for my dodgy left and I’m sure I’ll have to have aids in a few years’ time (I’m late 40s).
I can live w the deafness and tinnitus but the vertigo is the bad bit. I have had weeks where it’s there ‘in the background’ & even if betahistine is a placebo it’s well tolerated so will carry on!!

Vertigo tends to go in the end and you’re just left w the other symptoms - maybe I’m heading that way? I had first vertigo attack 8 years ago but I had a big gap of 6 years with no attacks.

My tinnitus is v high pitched whistling which can ramp up & become really loud. High pitched noises set it off & quite painful. All symptoms worse when I'm tired or stressed. Nothing much other than lying down eases them when I'm having an attack. No vomiting but very nauseated & diarrhoea. Which makes going to the toilet while dizzy fun!

Do u know what type of operation did she have?