Tinnitus Menieres and Balance problems

[eTaukei102]

I am new here and am looking share experiences of tinnitus, menieres and balance problems

[starveycat]

My menieres started some forty years ago. Went through all the loosing balance, nausea tinnitus etc. Now my balance isn't that great, a walking stick is very helpful. And the tinnitus is just an aggravating old friend.

I decided after various medication, doctors visit and hospital visit that they didn't seem to help. I joined the menieres society for s few years and got good advice and guidance

Menieres is an evil condition I always called it the devil on my shoulder. It does eventually burn itself out. But you are left with some hearing loss and the wonderful tinnitus.

I never go were it's quiet as noise does distract the brain.

I send you gentle supportive hugs . Try to stay strong as you progress through this condition. Good luck

[Hidden in reply to starveycat]

Hi Starveycat - I've had the annoying T for 20 yrs and was diagnosed with Meneires Disease 8 years ago. Two years ago I had my first vertigo attack, not a dizzy spell, vertigo, it threw me back and I hit the corner of a trunk. I started having one-two attacks every week and I would throw up and want to sleep for the whole day. I recently found a new ENT that prescribed betahistine for my vertigo attacks and balance issues. I have been on this new drug for almost 3 months now and have had only one episode since I started this Med. You mentioned something about the Meneires eventually burning itself out.... Can you please explain this? I have not heard that Meneires will burn itself out leaving me with hearing loss, which I've had hearing loss for 15 years.... This evil vertigo just hit me with no warning....it's a nightmare having vertigo, I actually thought about ending my life, it was too much for me to deal with. I also wear 2 hearing aids 😕

[starveycat in reply to Hidden]

Eventually you will find that it just becomes less and less severe. Very very rarely will I have any vertigo episodes, just the tinnitus and balance.

I used to have drop attacks very dramatic, but I knew nothing about them. I would just see absolute black the tinnitus would stop then I would find myself on the floor. Luckily it never led to any serious injury, just embarrassment and bruises.

When the vertigo hit I would repeat over and over to myself it will pass.

I think unless you have menieres you cannot understand it.

Never never never think of ending it. It will get easier, I promise, it takes time .

I made it and so will you.

[Hidden in reply to starveycat]

Omg seriously, the vertigo attacks will burn out, they will eventually go away?? Thank you.... You have given me new hope. This horrible disease rules my thoughts 24/7

How many years did you go through having vertigo attacks? You must feel like a new person!

[starveycat in reply to Hidden]

To be honest they did go on for a few years. Yes I am a new person as now I have severe asthma and being tested for Parkinson's. You cannot help but laugh. Luckily I have a very positive attitude to life. I have what I call my blip days but they pass. Do just stay strong and positive

[eTaukei102 in reply to Hidden]

Hi outdoorgal

Sorry to hear about your experience. I have been suffering with tinnitus for over 30 years. Over the years I have learnt to live with although, at times, it gets difficult. I had two episodes of vertigo out of the blue and have been taking betahistine since.

Mr Jonathan Hazell, who was the top tinnitus consultant at the time also said I had menieres. Lost all hearing in my right ear.

He also told me that there was no medical treatment for tinnitus.

Also dizziness/balance problems that wd come and go.

However, at the moment this is constant, made worse by the worst hayfever I suffered

ever. Also suddenly lost some hearing in my good year. GP prescribed fexofenadine which has made my balance problems worse.

Then was prescribed Mometasone spray when unlocked the ear. But balance is still bad. My physiotherapist is helping me with eye exercises via zoom.

[Happyrosie]

Hello eTaukei. I don’t have menieres (fingers crossed) but do have the dreaded T and episodes of benign positional vertigo.

To get over the vertigo I’ve been given specific exercises which are of limited benefit, and I do take seasickness tablets when there’s a stronger than normal episode - I don’t know whether they might help you? I have used a walking stick to help when I go on walks in the woods.

I deal with the T by ignoring it. Mostly. It’s not going to go away so there’s no point in getting anxious or stressed.

[eTaukei102 in reply to Happyrosie]

Hi,

I had one or two episodes of vertigo many years ago. I take a daily dose of betahistine.

Like you I am doing eye movement exercises to start with with the help of my physiotherapist.

I will be asking my GP to refer me to an ENT consultant. I am supposed to have a hospital appointment at the audiolofy dept but with the pandemic I will have to wait for months.

I have a small medical insurance which I only use when really needed. They have agreed to cover for a private ENT consultation but they need a referral letter from my GP. I will find out about seasickness meds that you take. This balance problem does feel like being on a boat at sea.

[Hidden]

Hi! I have meniers disease, and tinnitus, and balance issues, and vertigo attacks!

When it rains it pours! 😕 My balance was getting so bad and a couple vertigo attacks every week, I almost wanted to end my life!! A new ENT prescribed a drug called betahistine, it's a compound drug, and I must say, it has helped with my balance immensely and ONE vertigo attack.... I have been on the medication for almost 3 months now.... Although it's always in the back of my mind.... I got my life back 👏

[Hidden]

Hi Fellow Ménière’s sufferer here.

About 8 years now. It started badly with severe vertigo, sweating, vomiting etc attacks that lasted an hour or so.

Then over the year they got less and would be about 10 to 20 minutes of dizzying head. I found if I sat very still focused on one thing like a finger it would calm down.

I was stuck with bad tinnitus and about 50% hearing loss in the affected ear.

I then had 2 years of no attacks, but patches of varying tinnitus and ear fullness but manageable. I thought it was over but then had a severe one but I think because I’d stopped taking betahistine. I stupidly thought maybe it wasn’t doing anything so stopped taking it, it took 2 months to remind me.

I’ve recently had a couple more, one bad one one not so bad. Stress?

The Ménière’s society say it goes in stages with the final stage being tinnitus hearing loss and balance issues But no attacks. Who knows.

I may be one of the lucky ones, I have no balance issues unless I’m having an attack.

It’s an awful disease, the uncertainty of it being very hard to deal with. That fear that I may have an attack in public. Luckily my severe ones have been home or somewhere that I was able to get help from those that know me.

I do not hide that I have this so that if an attack comes my friends can help and not call for an ambulance which is what happened until I was diagnosed.

I wish you the best of luck.