Please help, Ménière's disease

Yep, and absolute medical nonsense. Have reported as advertising spam.

spend time reading this thread to find the update is a fucking advert🙄

If it is Meniere's and you are like this, you should be seeing an ENT that sub-specialises in Meniere’s (other ENT’s should know who these are). Exploring steroid injections, and if that fails possibly gentamicin injections (esp if it’s made you deaf/hearing decreased anyway), or in severe instances not responsive to any treatments removal of your labyrinth system on that side, for which you will need intensive vestibular rehab afterwards for your body to readjust to this being the new normal. Obviously really low sodium, no caffeine, cut out the alcohol etc as baseline management. Easy to say reduce stress but I’ve never understood that if people are severe as obviously the condition itself and never knowing when you will have an attack causes constant stress.

Hi @Tiredmumno1 is your hearing affected at all? If not, you might also want to look into Vestibular Migraines which has very similar symptoms (and is often misdiagnosed for MD). A lot of people have both (I think I do).
Drop attacks often occur with VM, as does that light headed feeling, brain fog and feeling of derealisation. They are treated differently though. Might be worth seeing a vestibular/balance specialist (in addition to ENT).

Hi op, sorry you're feeling this way with this. My Aunt has had it for a number of years, and when she has a flare up, she feels the way you are for a day or two after the initial attack. Hope you feel better soon

So sorry OP. Just to say, my late DGM had Menieres, it came on in middle age. I know she had a really rough few years with it (not aware if she was medicated as this was in the 1970s/80s) but it did calm down. Her balance wasn’t great and her hearing declined (not sure if the latter was related), but I think the nausea and general illness symptoms faded. Obviously every case is different, but do hang on in there and look up specialist support groups/helplines.

Oddly, I was prescribed diuretics to help manage my Menieres by my London based consultant ages ago. Drying out my system seemed to help more. It's seems rather hit and miss what works for any one person.

@Tiredmumno1 Honestly, nothing I’ve eaten or drunk or not eaten or not drunk has seemed to have any effect apart from making sure I drink enough. It’s almost as if the gunk in my ear gets thicker the more dehydrated I get so I just drink a lot of squash.

I'm so sorry you are experiencing this. I understand how scary and debilitating it is. My Dad has Meniere's and I was initially diagnosed with the same, but actually have non-headache vestibular migraine, which can have similar symptoms.

I highly recommend asking for a referral to the neuro-otology department of UCLH, wherever you live. They are incredibly specialist and I felt very well cared for by them in the five years or so that I was under their consultants.

The first thing is to be sure that the diagnosis is correct. They need to do all the tests to work out if this is an inner ear or a central brain issue. GPs are not always good at knowing what is what.

For the vestibular migraine diagnosis (so more brain related than ear), there are other treatment options. I am on propranolol and very low dose amitriptyline, which have been great at controlling the symptoms. I also have the buccal version (under my top lip) or prochlorperazine, which I carry as a rescue medication in case of an attack. It works quite quickly to stop the rotational vertigo.

For Meniere's, some people do have success with betahistine, but it takes a while to build up and take effect.

I did the Cooksey-Cawthorne exercises previously, and also watched YouTube videos of scrolling blind and horizontal patterns to desensitize myself and get my brain used to the kinds of images that would sometimes set off my vertigo. I'm very careful to use saltwater spray and decongestant when I get a cold virus to keep my Eustachian tubes clear.

Very low caffeine and no alcohol has helped me. Also avoiding flickering lights.

Please push for a clear diagnosis and treatment plan. I also had CBT to help with the anxiety symptoms that it brought, because I was scared of having an attack in public/at work (I have a public facing and exposed role).

I am now doing well. There is hope. But sending a hug because I know that the symptoms and consequences can feel overwhelming.

No advice, other than to say that Prochlorperazine is simply an antiemetic, meaning that they're just anti sickness pills

I had attacks in 2020 then clear to end 2022, then clear to August this year then lots of attacks.

I have asked everyone I have seen what I can do to help myself and consistently have been told:

• vestibular physio - exercises regularly
• low stress
• low alcohol
• low sodium
• low caffeine
• drink lots with a suggestion of 3l a day.

I have the buccal version of prochloroperzine which the consultant gave me just in case which helps if I take it just as an attack starts, and just started betahistine but whilst I know it doesn't work for everyone seems to be helping at the moment.
I am with the ENT at Guys and told to get in touch if I am having attacks.
Finally, I found attacks were triggering BPPV so also do the Epley manoeuvre if I feel generally a bit off balance.

I was diagnosed with this a few years ago in the hospital at ENT clinic. They told me I had it and sent me on my way. After reading the comments I feel like I've been massively fobbed off not being given anything to help it 😮

Buccastem is a version of prochloroperzine (forgive my spelling!) which you put between your gum and cheek and is really good for the vomiting attacks. It's available OTC.

I've had Menieres for years and second all low salt diets, and would add in low caffeine too. It also seems to get worse just before my period.

And there is specialist physio you can do to train your inner ear to adjust. Get your ENT to get you some support, but you can follow the basics at home. This is a US site, but will give you the basics
www.webmd.com/brain/what-are-cawthorne-cooksey-exercises

They numb your eardrums for the injections so it doesn’t hurt so much as feel uncomfortable and odd. The liquid going in does sting but for about 1 minute and it’s worth a shot.

It’s odd to see the other advice being given to other MD people. The ENT MD specialist I see (I’m in Norfolk if that helps I can always say who I see - he’s very well regarded/ does lots of research) says that diet has been proven to have zero effect. He told me to eat all the salt and drink all the caffeine I fancied. Which was lucky because I really, really love tea!

My brother has it OP. When it was at its worst it was like the room was spinning. He had to lay down stationary for a few hours.

As @Puppupandaway mentioned, use the support group so you can learn more about it and what others do to treat it. Best of luck.

Hiya, my husband has menieres Disease and it is totally debilitating when having attacks as you describe. Firstly you need to drastically reduce your salt intake and secondly drink as much water as you can stomach so that you urinate more and flush the salt out. Also low sugar.

You need the ENT to prescribe you with a heavy dose of steroids to reset you.

My husband went round and round in circles with the NHS and eventually went private and saw an amazing specialist. If you need any other advise give me a message and I can put you in touch with my husband.

There's a wonderful support group on Facebook (choose the uk version). They've helped me enormously since I started with menieres symptoms last year.

What strength betahistine are you on?

Hi, I have suspected menieres. Betahistine needs to build in your system, usually takes about six weeks to take effect. They don't stop it completely but do reduce attacks.

If you've already seen an ent you don't need another referral, instead find out the phone number of the secretaries for the department and phone them asking for another appointment. That's what I did and I got seen within a month. You are on their books now so should have direct access.

Cut out all caffeine,so no chocolate, coffee etc unless it's decaf.

Take it easy, rest as much as you can. Things will improve.