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Original poster

Does anyone have Ménière's disease?

46 replies

ivfbabymomma1 · 02/01/2021 12:16

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 😭

OP posts:
frustrationcentral · 02/01/2021 14:46

Ah that's crap Sad. I don't have menieres , but have had tinnitus for the last 9 months of so, seemed particularly annoying last night so you have my sympathies

Original poster
ivfbabymomma1 · 02/01/2021 14:59

@frustrationcentral it's horrible isn't it!!! So annoying! Have you found any ways to drown it out? I just have to try and not think about it! Which as you know is easier said than done!

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79andnotout · 02/01/2021 20:43

Ive got vertigo and tinnitus, developed them three months ago. Haven't had a diagnosis yet as covid has swamped our area so my gp said to come back in a couple of months.

What are your symptoms like? Do you know what triggered it?

TheRedShoes75 · 02/01/2021 21:55

Hi @ivfbabymomma1. I was diagnosed with Menieres about 4 years ago and it’s currently behaving itself after two rounds of dexamethasone injections into the affected ear. Do you find stress brings on the increase in tinnitus? It seems to be my main trigger. I use rain apps on my phone to drown it out at night when it’s bad.

Winginit73 · 02/01/2021 22:47

Hello, yes I have Menieres. Was only diagnosed in my 30s but had a cluster of attacks and n my late teens/early 20s. I had a few clear years due to a combination of serc, a diuretic and possibly because I had a course of 2 steroid injections. Unfortunately have had a bad 6months and the recent large dose steroid injection has not helped. My follow up appointment was cancelled during 2nd lockdown so didn't have second injection but may move onto gentamicin due to lack of positive from the steroids this time. Would be interested to hear if anyone has tried that treatment and if they had even more hearing loss as a result (I was given a hearing aid just before the 1st lockdown.) I try to be careful with salt intake, only have decaff coffee and minimal alcohol.

Shewhoisnotseen · 02/01/2021 23:13

Hi, I've had Menieres for 32 years.
I've never had any luck with ENT's, and GP's rarely understand so mostly have had to deal with it on my own.
I have phases of feeling very sorry for myself and then feeling guilty because there are people much worse off but when I'm having a really bad flare of attacks, it can be a very lonely place.

Original poster
ivfbabymomma1 · 02/01/2021 23:37

Oh wow I'm so pleased to finally speak to people who have it! I've never ever found anyone! Mine started about 5 years ago. I take bentihistamine 3 times a day to control it but in due to have my steroid injections in feb. It's all on one side though, does anyone else experience that? It's all in one ear, which im basically deaf in aside from bad tinnitus. Stress and alcohol are my main triggers. I probably have 2 major attacks a year which result in hospital visits for an injection to make me stable again!

OP posts:
dillydallydollydaydream7 · 03/01/2021 00:02

Ah OP my lovely auntie (65) has it so you have my sympathy! She was put on long term sick a while ago with it because her attacks became more frequent. She has the tinnitus and she often gets dizzy spells. My mums convinced her to start using a walking stick when she's out just to steady her because she never feels steady on her feet these days

ChristmasinJune · 03/01/2021 00:05

My mum had it and the dizzy spells got so bad her life was severely restricted. She had an operation about 10 years ago though and it completely sorted it. These days she's fitter than ever and never stops.

Original poster
ivfbabymomma1 · 03/01/2021 00:05

@dillydallydollydaydream7 ahh what a shame for your auntie! It is really scary, I'm not a dramatic person but before my diagnosis I was thinking of brain tumours and all sorts because it's just on one side of my head?! This thread has already made me feel so not alone anymore!! Thank you for all your replies!!

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Original poster
ivfbabymomma1 · 03/01/2021 00:07

@ChristmasinJune so pleased she is better! What operation did she have?? Mines manageable (for now) in that I can have a job, a child etc but I've seen on the internet some cases are so bad they are bed bound! Yet it's not considered a disability!?

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Original poster
ivfbabymomma1 · 03/01/2021 00:08

(I'm 33 if that gives any perspective, probably started about 5 years ago)

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ILikeToBeBesideTheSea · 03/01/2021 10:40

Does the tinnitus come and go with this or is it always there? In one ear or both?

Original poster
ivfbabymomma1 · 03/01/2021 11:22

It comes & goes! But after an attack it can be there 24 hours for weeks! My attacks are caused by stress or a hangover! And for me it's all in one ear! The other ear is absolutely fine thankfully! Are you experiencing this too?

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ILikeToBeBesideTheSea · 03/01/2021 12:02

No, 'just' tinnitus that I've had for 3 months now, no idea why but something going on with ears. Nothing treatable as far as I'm aware unfortunately. Horrid.

hiredandsqueak · 03/01/2021 12:07

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?

79andnotout · 03/01/2021 12:14

Any of you got autoimmune thyroid disease too? I've read they can be linked. I've had thyroid problems for a decade now and wondered if this was a new phase of problems...

Original poster
ivfbabymomma1 · 03/01/2021 12:14

As far as I'm aware labyrinthitis goes away eventually whereas Ménière's is a life long thing? But I could be wrong....

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Original poster
ivfbabymomma1 · 03/01/2021 12:15

@79andnotout I haven't personally... not yet anyway!!

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Original poster
ivfbabymomma1 · 03/01/2021 12:16

I'm not deliberately putting all the lines around Ménière's disease by the way... autocorrect is doing it for me 😆😆

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AlexaShutUp · 03/01/2021 12:20

My DH has it. He isn't suffering too badly at the moment, though. No vertigo attacks for ages and the tinnitus is relatively mild at the moment.

Kittyshopping · 03/01/2021 17:45

Yes, and I’ve been free from it for years, so there is hope.

TheRedShoes75 · 03/01/2021 19:17

The consultant I see is one of the lead researchers into the condition. His view is that betahistine only works as a placebo, salt and alcohol do nothing to trigger attacks and he advised me to eat and drink whatever I want and to ditch the betahistine. So I do and have.

The only thing that has helped is the steroid injections. I haven’t had to resort to gentamicin yet (which I know carries with it a risk of significant hearing loss). I’ve had two rounds of four steroid injections. The first didn’t really do much. The second lot, seem to, have bought me a year’s respite so far.

Surgical options - cutting the hearing nerve- aren’t something I’ve had to consider yet. I was born with hearing loss anyway so I’ve got a bit of a head start because I can lip read. On bad days my hearing aid helps. I have been occasionally guilty of playing up how much I can’t hear so I can avoid conversations with people I’m not fond of Grin

TheRedShoes75 · 03/01/2021 19:19

As I understand it menieres can burn itself out after 10-20 years or so. But I’m not counting on that. I just am grateful for the good days. I’m also planning on paying off my mortgage as quickly as I can as I can’t see how I’ll be able to work for as long as I otherwise would. The menieres fatigue is like nothing else I’ve had really. I’m completely knackered almost all of the time,

iklboo · 03/01/2021 19:27

I have yes, on my left side. Horrible tinnitus, full feeling in that ear, reduced hearing. Then there's the dizziness & drop attacks! I have the injections too but not been able to have them since March. Symptoms are starting to come back.

It does come under Equality Act protection if you've had it long term. It took me quite a while to get work to understand though - ended up with an Occ Health doctor telling them they were in breach before they really got it.