Menieres Disease

Thank you polomint and silverling48, that’s a great help.

Huge sympathy to you both, and to BA69
It must be very frightening for you BA69 I hope you have support at home.
Sorry to have highjacked your thread, but hopefully it might trigger a bit more advice for you too.

Great that you have finally managed to get yours under control silverling48 after so many years.

I’ll make a note of Betahistine for future reference.
Every morning since my episode, as I step out of bed I brace myself……

The good news is Betahistine has helped me and it’s been a long time since my world was spinning. 😵‍💫

I had my first episode of labyrinthitis when I was mid 30 s. The next episode came 7 years later, the next 3 years and so on til it was very regular and then frequent . It was always called labyrinthitis.

My hearing got worse and tinnitus began. I was under St Thomas hospital and they diagnosed menieres.

So I think it’s the combination as above which changes the diagnosis but in my long experience the symptoms of both are exactly the same. Horrible. Truly horrible.

Thirty years ago I was diagnosed with menieres by having water put into my ears whilst lying flat on a hard trolley which the doctor turned up and down and sideways. I was so ill and dizzy but that's what happened

Thank you Chocolatepeanuts
There seems to be many conditions with very similar symptoms, vertigo, nausea etc, that I’m interested in how each diagnosis is made between them.

I had one ‘episode’ 4 years ago when the room spun like tumble dryer for 5 hours continuously. Nausea and exhaustion followed. An appointment with a consultant neurologist and 2 MRI scans 48 hours after the episode concluded a form of migraine?
I have been left with tinnitus.

I would be very interested to hear how everyone was diagnosed with their particular conditions, especially Menieres.

It's really a diagnosis of elimination. Apparently only able to be verified on autopsy.

Thank you Babs03

There was a belief at one point that I had positional vertigo and the manoevre was attempted by a GP, it only resulted in me being violently ill on his sugery floor.

I was diagnosed by an ENT specialist after having a CT scan to rule out anything else going on. This was after years of attacks of vertigo and ear problems.

For those of you who have a diagnosis of Menieres , may I ask how you were diagnosed please?

I still have the odd glass of wine or a long cold g and t but only one.

I can’t be 100% sure but as far as I know Bppv is something different. Benign positioning posture vertigo ..well something like that. There is a special manoeuvre to try to help.

Just recently I had an attack of vertigo and vomitting, fortunately fairly short-lived. I have written up my symptoms in the NHS app so it will be interesting to see what response I get. I suspect BPPV as it seems to fit.

I don’t drink anymore, never drank much before but with this kind of problem a sufferer can do without a substance that can cause feelings of being off kilter.
I heard a case of a vicar being hauled up for drunken behaviour which turned out to be Menieres. Though cannot vouch for its veracity.

After years of having bouts of "menieres disease" the doctor decided it was BPPV. Same issues there is a maneuver that is supposed to help but I've never tried it as it can make you very sick.

Babs I was at a fancy anniversary party of a wealthy friend. Ex friend now , another story.
I hadn’t been drinking as I was always careful with alcohol, but unfortunately out of the blue had a bad attack. From that time my friend who I had known since we were 6, believed it was alcohol however often I explained it wasn’t.

I had a family member progress from an attack every two years to at least one attack a day. There are methods of treatment. They haven't had an attack for a very long time now.

Meniere's sounds awful. So debilitating and likely to affect confidence in going out. I've had episodes of labyrinthitis and that was bad enough. You all have my sympathies.

silverlining48

We were both dressed up ready for the first dinner on our first cruise, lovely calm evening but suddenly for me, the cabin was spinning and I was violently ill as we gently sailed past Southampton….oh yes, I remember it well.
Husband dined alone that night and my lovely dress was ruined.
Thank goodness I felt better the next day.

What a shame, I go an attack at my friends wedding many years ago now, I staggered to the ladies at the reception to throw up and her new MiL pursed her lips thinking I was drunk.

We were both dressed up ready for the first dinner on our first cruise, lovely calm evening but suddenly for me, the cabin was spinning and I was violently ill as we gently sailed past Southampton….oh yes, I remember it well.
Husband dined alone that night and my lovely dress was ruined.
Thank goodness I felt better the next day.

Yes ive had a few instances of labyrinthitis and menieres which was very unpleasant. Im pleased to say i havent had a recurrence for 20years.

I would never syringe my ears, luckily I don't think wax is too much of a problem.
Would never go to sea either, a few years ago made the mistake of going on a ferry to Calais, was a fairly rough sea and the motion made my vertigo kick in and I was so sick and dizzy I had to lie across several seats with my head on my case, was practically carried off and spent the whole weeks holiday in bed. I took serious meds from a French chemist going back and slept the whole way.

Yes that operation was one of my options and am so glad I didn’t go ahead with it.

I am so pleased that, although it is horrible, medical science has progressed enough to be able to help.
My Uncle developed this disease in the 1950’s , it was so severe and debilitating that eventually he had an operation that made him totally deaf.
The Menieres was cured but the effects on my Uncle was dreadful.
He became morose and suffered from depression for the rest of his life.

Thanks silverlining48. Yes, that's the name, I'm almost sure.
I don't like to ask for any more as I haven't had an attack for ages.
I'm very wary to ask for something to be done about my ears. It is such a truly horrible sensation, isn't it. Perhaps if I need to see the doctor about something else sometime.
I'm sort of treating the whole thing with a 'let sleeping dogs lie' approach and just hope it never comes back.
Good luck that yours doesn't either...