Please help, Ménière's disease

[Tiredmumno1]

Sorry for posting in AIBU, but I really need some advice or help.

I have been suffering for more than a year and a half, it all started with what I now know as drop attacks, I would be severely dizzy and getting sick on these attacks, and the burning up was horrendous.

I was diagnosed a couple of weeks ago with Meniere's, it did come as a bit of a shock, I couldn't think of any questions at the time my mind just went blank.

I had been on Betahistine (3 a day) for a couple of months, the ENT consultant gave me Prochlorperazine, and told me to take when I was out if I felt really bad.

I haven't felt normal in such a long time, I am constantly lightheaded feeling like I am going to pass out. This feeling has been getting worse again and yesterday had another attack, I tried to take what the ENT had given me, but i got sick about 10 minutes later.

I went to bed and slept quite a lot, but have woken still feeling shaky and lightheaded every time I move my head, it's debilitating. It's scaring me and don't know what to do.

Please, please can anyone advise anything that will help me, I can't do this much longer.

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.

Thank you for that.

I just thought or hoped someone on here may have more knowledge, just to get me through the weekend. Will make an appointment with gp next week. Won't hold out much hope though.

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.

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

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).

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.

Oh my goodness, thank you so much everyone for replying, I didn't think I'd have any responses.

I will have a proper read through soon, I'm having a hard time digesting any information today, after last nights episode, really has left me out of sorts.

That is exactly how I have felt with this just so alone, I would say it's nice to know that others understand how I feel, but I really wouldn't want to wish this on anyone. I had kind of reserved myself to the fact I will feel like this forever.

I will be making an appointment on Monday with the GP, and ask for a referral to the ENT again(or someone who specialises in Meniere's). I really hope I don't get fobbed off, although I don't think my husband will let them do that to me again.

I will take a look at all of your suggestions of course because I really needed to hear from others. I really appreciate you all taking the time to respond, I honestly do.

Thank you.

@MiddayLibrary I am so sorry you had to go through that bus scenario, that's what scares me everytime I walk out the door, and yes to the other poster who spoke about the drunk like feeling, I feel like that everyday.

I have heard of the injections, but thinking about that scares me, do they hurt really bad?

I don't even know what ear is causing it, I am already deaf in one ear (since birth) is it possible that a deaf ear can cause this?

Sorry I'll probably need that answer from the doctor, I will ask that when I see them.

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.

What strength betahistine are you on?

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.

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.

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.

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!

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

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 😮

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.

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

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.

Thank you all for your time, I appreciate it so much. I am sorry I didn't return yesterday, I just felt awful.

@Puppupandaway

I have been taking Betahistine for months, I hadn't had a big attack for a little while, just the awful feeling everyday. I shall give ENT a call tomorrow. I don't really have a lot of caffeine, no coffee, barely any chocolate and decaf tea.

I am on 16mg, 3 times a day. I will also check out the FB group, thank you.

@Hungerbegone

Thank you for your advice, I have been trying for a while with the salt thing so will try harder. I drink robinsons no added sugar orange. I struggle to drink water on its own. Do you think that makes a difference?

@Drinkdrinkduuurink

It really is awful, so feel for your brother. Thank you for also recommending the FB group will check it out.

@MiddayLibrary

Thank you for being honest regarding the injections it may have to be something I look into. Also do you feel that your diet has no affect on it?

@turkeyboots

Thanks for that link, very helpful. When I took that tablet it was just ten minutes later that I got sick. I was obviously thinking how is it anti sickness if that's what happened.

@TherealmrsT

Thank you, I really am going to have to go back, at the moment I feel like I am just existing. I will be going through everything that everyone has said though, I just want my life back.

@WoolerOwl

I shall certainly ask the doctor for a referral as I hadn't thought of anything like that. I will also talk to them about my medication to see if things can be changed. I only have decaf tea and do not drink alcohol anymore. I hate flickering lights, I also hate being out like in a supermarket, it disorientates me, same as walking up and down stairs. I am very glad you are doing well now and I definitely appreciate the hug and advice.

Honestly everyone thank you, for taking time to talk to me, and for the hugs and good wishes

@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.

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.

@MiddayLibrary it's good to know you drink squash too, I am u sure of the diet think tbh, I really don't have much of the things that are mentioned but still have the attacks, they scare me so much.

@turkeyboots I had read about that somewhere but was u sure whether to try it, are there any side effects that you know of, or is it totally safe. I feel so anxious about everything, that I end up questioning my own decisions.

Do any of have any problems with remembering things, my memory has being awful at points, I forget words, trip over what I am saying, it's actually getting me down, I used to be quite sharp. Now it can take me a while to get out what I want to say if that makes sense.

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.