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Original poster

Does anyone have Ménière’s disease?

21 replies

Elsiebear90 · 13/04/2022 10:23

I’ve been told by an ENT consultant that I likely have Ménière’s disease, for the past year I’ve been having episodes of ear pain, ringing and hearing loss in my ear, feeling of fulness and on and off vertigo like symptoms. He’s referred me for emergency hearing and balance tests and told me I need to inform the DVLA. I took three hearing tests online last night and all of them showed mild to moderate hearing loss in my affected ear at low frequencies, which is typical of Ménière’s, so thinking it’s more than likely I have it.

Just wondering if anyone else has this and if it progressed to more severe hearing loss? I’m 32 so it’s a bit concerning I already may have moderate hearing loss, the disease is incurable and progressive so I’m quite concerned!

OP posts:
Comefromaway · 13/04/2022 10:28

Yes, my husband does. He is a music teacher too!

I won't lie, it's not fun and he was unable to drive for several years but most of the time its manageble.

ihavespoken · 13/04/2022 10:31

My 75-year-old mum has it - she had a severe attack of vertigo in her 60s and it was diagnosed then. She has pretty bad hearing loss now which is counteracted by a bone-anchored hearing aid (BAHA) on one side and a normal hearing aid on the other.
She still drives though, and hasn't had any vertigo attacks for many years now.

Flowers.. hope you get some answers.

Original poster
Elsiebear90 · 13/04/2022 10:33

Sorry to hear about your husband, does he have any hearing loss?

I don’t have any issues yet with driving as the vertigo like symptoms only last a split second and are not debilitating, it’s just a horrible feeling and makes me feel unnerved and nauseous. The medication they’ve given me helps a lot too. I’m more concerned with the hearing loss as I naively thought since I’ve only had symptoms for a year I wouldn’t have any hearing issues yet.

OP posts:
Comefromaway · 13/04/2022 10:34

Yes, he has some hearing loss. It fluctuates though. It's bad at the moment as he recently had covid and that seems to have affected him. He also has this thing where he hears things at different pitches in each ear!

Are you on betahistine?

Original poster
Elsiebear90 · 13/04/2022 10:39

No I’m on Cetirizine, which has helped a lot. I have trouble listening to lower pitched noises, I can’t hear them very well and they make my ear hurt, higher ones don’t seem to be an issue as of yet. Has it spread to his other ear? As I’ve been having ringing and episodes of hearing loss in the other one at times now, and I read that it can eventually affect both? Sorry for all the questions, I’m just a bit worried that I’m going to end up deaf!

OP posts:
Comefromaway · 13/04/2022 11:08

Hmm, that's interesting. Cetirizine is an anti histamine and dh has been told he cannot take anti histamines as they counteract the effects of the betahistine which he takes. Betahistine increases the levels of histamine in your ear

LarkRize · 13/04/2022 13:06

My father had this and a friend has it as well. Both able to drive, both have hearing fairly severely affected and some balance issues but otherwise carried on fine.

Lucia23 · 13/04/2022 13:08

My friend has it and has adjusted her diet to help with symptoms - she loved to hike but now has to think more carefully about what she can and can't do.

Comefromaway · 13/04/2022 13:10

That's a good point. Following a very low salt diet seems to have a positive effect on dh's symptoms.

WildCoasts · 13/04/2022 13:17

In my experience it isn't progressive. It ebbs and flows. Sometimes it's better than others. At one point we thought it had gone away (it can burn itself out) then it came back worse than ever. A grommet and a course of medication fixed it so far. There hasn't been an attack for a long time. A low sodium diet also does wonders in my experience.

FKATondelayo · 13/04/2022 13:32

My husband has it. He took 2 years to get a diagnosis during which time he could barely work and not drive as his vertigo attacks were severe and frequent. He had to go private because NHS were useless - even though he mentioned it in his first appointment they were insistent it was a brain tumour (it wasn't).

Anyway, since diagnosis life has been so much better - amitriptyline and diet and a hearing aid have all made it very manageable. Low sodium didn't work for him but cutting out legumes / beans / lentils / chocolate / citrus / coffee and nuts have been game-changing (although a pain in the ass for meal planning!). He hasn't had a severe attack for several years and then got the DVLA to do a medical investigation which meant he could keep his licence.

It's still a challenge. Our kids have grown up very shouty because Daddy is deaf! But so much better than 6 years ago.

Comefromaway · 13/04/2022 13:56

@FKATondelayo

My husband has it. He took 2 years to get a diagnosis during which time he could barely work and not drive as his vertigo attacks were severe and frequent. He had to go private because NHS were useless - even though he mentioned it in his first appointment they were insistent it was a brain tumour (it wasn't).

Anyway, since diagnosis life has been so much better - amitriptyline and diet and a hearing aid have all made it very manageable. Low sodium didn't work for him but cutting out legumes / beans / lentils / chocolate / citrus / coffee and nuts have been game-changing (although a pain in the ass for meal planning!). He hasn't had a severe attack for several years and then got the DVLA to do a medical investigation which meant he could keep his licence.

It's still a challenge. Our kids have grown up very shouty because Daddy is deaf! But so much better than 6 years ago.

That mirrors our experience except dh went private a bit sooner when his sick pay ran out. He was investigated for strokes, brain tumours and brain cancer it was a horrible time.
SpringIntoChaos · 13/04/2022 14:14

My dad had it from being around 50-ish I'd guess.

I won't lie...it wasn't pleasant for him and he did ultimately end up with severe hearing loss (but this was many years after it started).

His vertigo attacks were awful, and he would often end up falling over when he was out, and vomiting where he lay, unable to move. The worst part of this, was that people assumed he was some old drunk in the street and walked around/over him, often saying nasty things to him. He was even kicked and spat on 😢

I have a feeling I'm going the same way, as I've had worsening tinnitus for years now...dad also started with this in his early 40s.

💐 for you OP.

FKATondelayo · 13/04/2022 14:21

Sorry to hear that ComeFromAway - agree it truly was a horrible process to even get an idea of what was wrong. For a while we thought he might be dying or would never work again and our kids were 2 and 7 at the time and the eldest hasn't recovered from the anxiety and stress. I don't know why we didn't go private sooner tbh.

SpringintoChaos - also happened with DH. He collapsed and vomited at a kids club and the reactions were awful. Hope your dad is OK.

SpringIntoChaos · 13/04/2022 16:57

@FKATondelayo thank you (dad died a few years ago...unrelated to Menieres though)

It's awful isn't it, that the 'go to' response to a man lying in the floor, is that he must be drunk? I doubt that women lying on the floor get the same response. My poor dad went through such an awful, awful time until they finally found the right medication to bring things under control 😢

JustDanceAddict · 14/04/2022 17:12

Yes - I have it & the vertigo is much better controlled with betahistine 16mg.
I am moderately deaf in one ear and have tinnitus but it’s not too debilitating in that way.
The progression of the condition is that the vertigo abates and the deafness worsens.
I had my first vertigo attack in 2012, then a gap of about 6 years. Touch wood not a bad one for 2.5 years now although I do occasionally get milder ones - best thing is not to move at all for me or I feel really sick (and have been sick).

JustDanceAddict · 14/04/2022 17:15

Ps; all nhs diagnosed for me - they’ve been really good.

TheSparkling · 14/04/2022 17:19

I was diagnosed about 4 years ago, this was after two years of awful vertigo attacks. I has lost my hearing on one side a few years before that.
I took betahistine for quite a while but things have been steady for some time and I seem to be ok. However my hearing is non existent in one ear and that causes some problems but the vertigo was definitely the worst part.
I was 33 when I lost my hearing. There is a long running thread about dealing with hearing loss and hearing aids in general health if you need any advice on that side of things.

nellysniche · 04/12/2022 22:41

Just read a few posts on here from months ago about menieres has anyone tried betahistine im on it been on it for 4 months the side effects started 2 months ago so itchy and pains in the stomach back to the drs on wednesday

Starrrz · 03/12/2023 17:43

@Elsiebear90 how arw you? Has anything helped ? Im 28 and im soo down because im not sure if this is what i have :( im struggling atm! U have a young baby. Ive been suffering with dizzyness for a while and ear pain. Then the vertigo started when i woke up with the flu! And im still not right 4.5 weeks on! X

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