Menieres Disease

I was diagnosed with this. My eyes used to flick side to side like I had got off a fast roundabout. Looking up used to make it worse. My hearing is very poor but it did improve eventually.

I have this, and yes they can tell by the eyes, I take meds when the vertigo is bad to stop me feeling too nauseous. I cannot look or reach up, so putting washing out on a rather high line we have in the garden makes me want to fall over backwards, so my OH puts it out, he says he could adjust the line but hey I like him helping out.
Mine started with labryinthitis, an illness that affects the inner ear.
Try asking for meds if you feel nauseous, and if out alone when the vertigo starts do try to find somewhere to sit, or ask for help if in a shop etc., am sure they could bring a chair, or if nowhere near a chair or other person try holding on hard to your walking frame whilst keeping your head straight and looking straight ahead, don't be tempted to move your head I find that makes it worse, and don't let someone talk you into sitting down and putting your head between your knees, the worst possible position to get up from.
In all honesty you will get used to it and find your own ways of coping. Is just, as you say, gaining confidence.
All the best.
btw I find that too much screen time on my lap top or phone can bring it on.

Menieres is a well know condition, of balance and dizziness aka vestibular disorders.

Are you aware there is a Menieres society? Hopefully you can have some reassurance that you are not alone.
www.menieres.org.uk/
I think they have a Facebook page too.

I was diagnosed with menieres about 15 years ago. My first attacks were in my 40s, 35 years ago. Like Babs it was diagnosed initially as labrynthitis but progressed with hearing loss and tinitus to menieres. However symptoms were the same , violent spinning, vomiting, inability to walk. Woukdnt wish it on anyone.
I never lie flat, always have head raised. If I need to turn over in bed I do it slowly and in stages. If I am having an attack I dare not close my eyes but keep them open and focused on simething in front of me. I have a radio on quietly at night to block the tinnitus. Leave a light in at night as the eyes work as balancers if the ears are damaged.
There is an injection which our gp showed my dh how to use and this stops the spinning almost immediately. I spent so much time in bed because I felt safe there.
The good news is that I began taking Betahistine some years ago and the frequent attacks I used to have have all but stopped. They have helped a friend too.
You have my sympathy. 💐

Yes I can’t lie flat and for that reason struggle in a dentists chair, and I can only sleep on my right hand side, if I turn to the left to sleep the vertigo sets off.
At the moment though unless I do something that triggers it I haven’t had an attack for a considerable time. 🤞

I have a close relative who has had this for years.

But I havent even heard her mention it for several.
No idea if that is unusual or not.

I did take cyclizine for a while but will ask about betahistine if it starts flaring up again.

I have menieres too. I was diagnosed aged 28 and am now 79. If an attack happens and I usually have warning signs like a day or 2 before with a feeling that somethings not right. I take 2 serc( antihistamine tablets) in morning, 2 In afternoon and 2 at bedtime. That usually does the trick. If I don't catch it in time, I spend 2 days in bed unable to move or I would be sick. Thankfully that happens only rarely now as I now how to avoid it. Unlike the other lady, I do have keep my eyes closed as everything swirls around. Strong sunlight can bring it on plus if I'm very anxious about something. You will hopefully find the triggers that set It off and you can then avoid them. It is very scary at the beginning when first appears. Good luck in controlling it as it can be done

I've had this for many years.At the start the vertigo attacks were totally debilitating.One would come on without warning.I'd get a deafening noise in my ears,my balance would go completely and I'd feel so sick and ill.During an attack I couldn't move which wasn't good if I was out and about.I must have looked drunk.
These days I think my brain must have adjusted to the vertigo as it's a lot milder when it comes.Still unpleasant but not incapacitating.I was recommended exercises by the specialist I saw to move your head certain ways.This brings on dizziness but retrains the brain.Not that I did them as the thought of bringing on dizziness wasn't for me.I can't remember what they were called but you could Google them.I hope things improve for you.It's a horrible illness and not well known as you say.

Was diagnosed about 8 years ago after several bouts of vertigo.
I keep betahistine up my sleeve anx take it if feel an episode coming on.
The thing to avoid is alcohol. That doesn't help.

@polomint no I close my eyes during an attack but was assuming the OP was asking about an attack while out and about and closing her eyes might not be a safe thing to do. Luckily I haven’t had an attack whilst out and about on my own but will now get some betahistine to keep in my pocket.

I agree that attacks do seem to become less frequent or as bad. So there is hope BA69.
🌹

I was diagnosed back in my thirties. The attacks were infrequent but quite severe when they did happen. Lying down, but with my head raised, was the only option to ease it.
Eventually I had a drug which I always carried with me. It began with B but I can't remember it's name. I have no tablets left as they date expired ages ago.
The thing is, I haven't had a bad attack for years now. So I'm hoping it never comes back. But I often wonder.....
One unfortunate side effect is that I cannot have my ears syringed. As soon as the nurse starts the procedure the whole room tips upside down. So ear wax is a problem for me.

Hello Henetha. You may be thinking of Betahistine which I mentioned has helped me. I still take one a day even though I have not had a vertigo attack for a few years but can’t risk it happening as I spent whole weeks in bed.
As for ears syringing, I get mine suctioned at the hospital now, and it’s been fine until last time when the dr put some liquid in my ear and the room immediately started to spin. She did say it happens sometimes with or without menieres, but I won’t have any liquid put in again and it’s on the notes.

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...

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.

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

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

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.

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.

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.

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.

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.