Meniere's disease, (inner ear issue) anyone had or have it?

[nicoala1]

Oh my word.

It is bloody awful and limiting. One minute you are doing things, next staggering around like a drunken sailor and feeling sick. And then need to lie down for a few hours.

I have had three episodes now and it is really dreadful. The first one was the worst, my family were meeting for a meal in a local restaurant. I was staggering. OH helped me get in the door but I fell down, and of course everyone in the place thought I was pissed. Far from it. So embarrassing.

Just venting now. And the episodes come on without any warning too. Very limiting and debilitating. Don't know what to do now. I really hate the fact that when I have the attacks they come on so suddenly. Terrified of going out now.

AAAAgh. I know this condition is not life threatening, but it is life limiting. Just wondered if anyone else has had it. thanks.

I have had meniere's disease for about 12 years now. Your post reminded me of what it was like when I first suffered from it. The attacks were hideous and the vertigo would make me throw up, and I would always have to sleep afterwards.

I don't get attacks like that now, and haven't for many years. I had a bit of a flare up a few years ago and now can't lie down completely flat otherwise the room spins. I also have issues with dizziness and popping ears if I get overtired or eat too much salt, which is my downfall as I have a weakness for anything salty. Touch wood, I have only ever been affected in one ear. My hearing in that ear is very poor now but my other ear is fine and I have adapted.

It all sounds a bit gloomy but really it doesn't affect me too much now. I was so despondent at the beginning, particularly after reading some horror stories online, but the vertigo attacks do die off and the rest has been manageable for me.

Yes. Awful disease. Had regular treatment. After 2 years it doesn't affect me but it took my hearing with it. Really feel for you.

Dh was diagnosed recently. He had 6 months off work and has lost his driving licence.

In the end he had to see someone privately. He is now on medication which helps a lot and he is eating a low salt low caffeine diet. Noise cancelling ear plugs, and tinted glasses help too.

Yes and it's horrific, thankfully touch wood it's not too bad now, I sometimes just spin out for no reason and it's over in seconds, my worst was 3 weeks glued to sofa and crawling to the loo as laying flat or standing up was unbearable.

Dh is a musician and his ears are his livelihood.

Thanks so much for the validation of this, and for sharing your experiences.

The biggest issue for me now is that I don't know what I would do if I am driving, or going out somewhere where people might think I am falling down drunk.

The fatigue after an attack is unreal too, ok if you can go to bed but not so good if you are out and about or at work.

Makes me very nervous, which doesn't help. Awful experience. Thank you for sharing your stories.

Dh voluntarily surrendered his driving licence as the attacks come on with no warning.

Hello I'm sorry to hear you're suffering, have you been referred to a specialist? I had a very bad flare up during and after my second pregnancy and eventually have found a combination of service (betahistine) and a diuretic have kept them mostly at bay. I've only had one mild attack last year and one full 12 hour job the year before. I was prescribed prochlorperazine buccal tablets, I think known as stemetil to prevent the sickness that comes with the attacks. When they were milder I used to find sturgeon travel sickness tablets quite effective. I do sympathise and hope you find they settle. Like another poster, I keep to a low salt diet, also no caffeine and very little alcohol.

Sorry, SERC not service!

What do you all do if it happens when out and about. That is my biggest fear. It really is awful and can last for a few hours in my own experience.

The fatigue after an attack is not pleasant either unless you have immediate access to a sofa or bed either!

Good thing is, it is not fatal. But it is bloody awful!

I have been taking SERC but don't see any difference tbh.

Doc says Stemetil might help. Will pick them up tomorrow. Sorry to be so self indulgent when others are going through life threatening illnesses.

But OMG this is something else.

Good to know I am not alone. You are very kind to share.

I can recommend the menieres society. They've a helpful leaflet on their website here www.menieres.org.uk/files/pdfs/controlling-your-symptoms.pdf I've bookmarked it and find it helpful.

Mine is really bad at the moment. Hopefully there's something there that might help you.

Thanks Becca.

I am in a difficult place at the moment. Awful in fact. Seems to happen every third day now. Not pleasant at all.

I have never had any form of treatment. My GP knew nothing about the illness but at the time we had health insurance through DH's work so I saw a consultant privately. He confirmed meniere's but offered no medication and just told me to stay away from reading worst case scenarios online.

I stuck rigidly to a low salt diet at first but found it very difficult, especially when away from home as anything vaguely processed was off limits. I do now drift with my diet and only stick to it when I feel symptoms returning.

I totally understand your fear of it happening when you're out. It only happened to me a couple of times and actually wasn't as bad as I expected, though embarrassing to look drunk in the middle of the day, but the constant worry that it would happen really knocked my confidence. The exhaustion was overwhelming too, and I felt I aged overnight. It is tough but please hold on to the fact that for many people it does get a lot better with time. Sadly the hearing doesn't.

Granyan,

Hearing in left ear is nearly gone now anyway. I had meningitis and sepsis at age 23 so docs think this is the result.

Hopefully the spinning and eye movement left and right will recede in time. That is what I hope. But my confidence in going out or driving is knocked a bit now.

But onwards and upwards. So good of you all to share your stories, I don't feel so freaky now.

I started having attacks about 12 years ago but now I take betahistadine three times a day and haven't had an attack for a few years. I had steroid injections through my ear drum for a couple of years but I'm not convinced that they made any difference. I've lost almost all of my hearing in the affected ear but that is so much better than having Menière's attacks. In the past I've experienced a couple whilst on my own out of the house and the only solution is to lay flat and get someone to call a friend for you. Yes, its tremendously embarrassing but I don't think anyone ever died of embarrassment or of Menière's. If you want to talk to me feel free to send a PM.

Lizsmum thank you so much.

Not sure how how to a pm, but will figure it out in time, when I am not spinning around the place!

Awful sensation TBH.

Thanks everyone, great to know I'm not alone in this. Spinning now again and it has taken me some time to focus and to post. But off to the bed now, only solace.

Hopefully it will recede in time. And thank you everyone.