Can you tell me about your experience with Ménière's disease?

[Puppupandaway]

So, since the start of December I've had ear symptoms and my gp thinks it's menieres. I'm waiting for an ENT appointment to come through. I'm just interested to see if anyone else with menieres agrees with my gp diagnosis. I'll list my symptoms:

Ear pressure (not every day)
Distorted hearing (some days worse than others, but most of the time music sounds out of tune and people sound robotic)
Woken up 3 times in the last month to vertigo symptoms, which last up to an hour.
My one ear definitely hears things much louder than the other, uncomfortably so at times.
Mild headaches

I've had ear wax removed, taken antibiotics in case it was an infection, but the symptoms continue. It's been 5 weeks now.

Does this sound like menieres??? I don't think it can be labrythinthitis as I've not been completely floored by the vertigo. I am currently taking prochlorperazine.

Thank you x

Oh and I forgot one symptom, tinnitus. Crazy loud at times.

I have had labyrinthitis and ended up having vestibular rehabilitation therapy. I don’t think there is any cure for any of these inner ear issues however with menieres there can be a trigger - possibly food - caffeine chocolate etc…could be worth keeping a good diary just to see.

I'm wondering now whether it's chronic Eustachian tube dysfunction.... anyone? I'm going crazy with this ear pressure and tinnitus.

It could be menieres. Hopefully not but if it becomes clear that it is, hopefully you will have many years to adjust and put in place alternatives. Lip reading, family learning basic signing and the one that catches a lot of people unawares, not being able to drive. And in the future, which is a big step forward for menieres you might be offered a cochlear implant.

A relative of mine got to the point of almost daily vertigo attacks. It can be successfully treated. They haven't had one for a few years now. Get an ENT doctor who knows their stuff with Menieres.

Thank you. I'm really hoping it's not menieres.

I have Menière's. It's horrendous. I wouldn't wish it on my worst enemy. I feel you would really know if it was. I'm dizzy every single day unless I take a cocktail of tablets. All sorts can trigger it, it affects you every day. I really hope it isn't! A diagnosis can also take bloody ages!

You know they can do better than that for you?

I had another dizziness spell this morning. Woke up with roaring tinnitus, feeling like I was drunk. After an hour it passed and my ears felt much better. Tinnitus is still there, not as loud, but the pressure and muffled hearing is much improved. Does this sound like menieres? The symptoms seem to hit a peak then you get relief for a while??

My mum has this, she has bad flare ups now and again but anti sickness meds help as does napping during the day and not letting yourself get too tired. She doesn't drink or smoke as they can trigger it in her.

I have it - among other ailments 😆 - I’m on betahistine but I’m not sure if it works or I’m just in remission.
I’ve had it for 11 years, and was diagnosed until about 5 years ago. Started off waking up with awful spins, had tinnitus and realised my hearing was going. Then the spins stopped for about 5 years so didn’t seek medical intervention after that. Assumed it was a virus.
it started up again 5 years ago -then I had an awful couple of years where I was randomly getting the vertigo at work and just felt mildly vertiginous constantly, etc which is when I got the meds. Now when I have an attack (about 1-2 a year) it’s again, when I wake up in the middle of the night and includes vomiting and I often can’t move for hours. I work hybrid now which is good (once I worked from bed recovering). I do have constant tinnitus and can pretty much predict an attack as my hearing gets distorted and tinnitus ramps up. I’m moderately deaf in one ear.
I have a check up every 9-12 months with a vestibular specialist ENT.
I don’t eat much cheese 😞 , don’t have much caffeine and watch my salt intake.

Thank you @Goatymum for your detailed response. It sounds eerily similar to my experience.

I'm seeing my dr tomorrow and was going to ask if I could try betahistine. I'm thankful for the prochlorapazine but I can't stay on it indefinitely. I hear mixed views on its effectiveness. Suppose you don't know til you try.

Good luck @Puppupandaway - it’s a horrible condition. I count myself relatively lucky as when you go on forums about it, some people can barely get out of bed let alone work. If I’m home for an attack, it’s nasty but at least I’m at home.
I did have one at a training course once - I was sick and everything. It was near my house and I stupidly went when I was feeling a bit wobbly thinking it would ease off on the walk / it didn’t and it was awful (everyone was really nice but it was mega cringe for me)! My advice is always listen to your body. Don’t go out if you feel an attack is imminent. I used to go to work and regret it.

I had another vertigo attack half an hour before my dr appointment so he was able to see how I am. He did the Dix-hallpike test and my eyes were flickering so that was telling. They've decided to send me for an mri and to put me on betahistine tablets. I'm so fed up of this now. Bloody NHS waiting times, I'm just hoping the tablets kick in and the vertigo will lessen.

Have a look at website www.labyrinthitis.org
best person to see is Prof Luxon in London for diagnosis and Dr Pavlou if you need any assistance for VRT. Best wishes.

What? Both my DF and DSis have menieres and it hasn't caused deafness or impacted driving (except when having an attack obv).

It is totally debilitating when having an attack, but the rest of the time life is normal.

I have a family member with this and it has caused deafness in one ear and they did lose their license for a time. That was when they were having daily attacks though.