Please help, Ménière's disease

A family member has this, it’s very debilitating. She was referred to a specialist centre who prescribed medication which has really helped. I think there are a few around the U.K., it might be a good idea to get your GP to refer you.

You need to make sure you are fully hydrated and have a really low sodium diet, literally cut out all added salt and all foods with added salt. It helps to stabilise the viscosity of the fluids within the ear IIRC.

Also, when you have an attack, you just have to stop what you are doing and sit down for as long as it takes until it passes.

My father has this. I can remember when it first started, it was almost like he was drunk. He would then change colour as the blood drained and then he would just sweat from everywhere, you could see it beading it was that bad. I remember him sitting for hours at a time with a towel round him and then having to change clothes once it had passed.

It's a horrible disease, you have my sympathy. Have you had a look at https://www.menieres.org.uk/information-and-support/symptoms-and-conditions/menieres-disease ?

If you haven't done already, you need to be seen by a consultant who specialises in Menieres. My father had an operation to put a shunt in to drain fluid and relieve pressure. He was seen by one of the leading consultants (now retired unfortunately).

Mine went into remission OP. It lasted about 8 months and then disappeared. I was on betahistines.
Sending best wishes x

Hi @Tiredmumno1 👋

I was diagnosed with Ménière’s about 7 years ago now. I’m really sorry you’re going through this. It’s scary, unpredictable and can be quite debilitating. That said, there are ways to improve things and my life is basically back to normal now.

First up, the betahistine did sod all for me and my ENT told me that it was effectively used as a placebo. The other drug is the one to take when you start to feel sick as it helps with the throwing up.

Secondly, the thing that worked for me was having steroid injections into my eardrums. I had three rounds of 4 of those and have not had a spinning attack for the last 4 years as a result. I would recommend getting the ENT to consider those.

Third, try and work out what the triggers are. For me it was definitely stress, tiredness and dehydration. I also have to be careful to make sure I keep my sinuses clear so I used anything decongestion related as soon as I start to feel even a bit stuffed up. Sudafed (the stuff you get from the pharamacist with the pseudoephedrine not the over the counter stuff) is the best to get. Basically anything that might be creating any pressure in your sinuses/inner ears. I’d drink a lot of fluids too. Also, for me, if I was tired then I’d sleep as much as I could. Stress plus tired = shit Menieres symptoms (for me at least).

I can see you said you’d think about going to the GP - I’d get them to refer you back to the ENT or if you’ve got it call the ENT’s secretary and ask for an appointment explaining your symptoms aren’t being managed well. It was when I had a spinning attack on a bus and had to be removed into an ambulance because I couldn’t walk that the ENT started to take it more seriously for me.

There are lots of different ways to manage the symptoms and it’s a bit of trial and error. Check out the Menieres Society website too - that’s got lots of good advice. There was a section on there my ENT Consultant told me to refer my employers too.

I’ll keep an eye out for a reply - I’m really sorry you’ve going through this. It’s horrible but you’re not alone. Once you start telling people you’ve got Menieres it honestly seems like the world and his wife have got it too.

Just bumping for you OP.

I don't know anything about this but sounds like it would be worth pushing to go back to ENT and tell them this medication is making you feel worse.