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.

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

@VestaTilley yes, the balance part is really difficult, I have to try so hard not to fall over, luckily I can hang on to my husband when we are out, I shall look up the support groups, thank you.

@merryandbrightdelight I really feel for your Aunt too, it's horrible knowing you can't just take a tablet and it'll all just vanish, the anxiety part is horrid, the only time I go out now is shopping with my husband or in the car and that's it, I feel so restricted.

Thank you for your message.

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).

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.

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

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