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anyone have meniere's disease?

(12 Posts)
mimsum Sun 16-Sep-07 23:18:07

my GP thinks I may have meniere's and has referred me to ENT - I've had a google and it all seems rather unpleasant and depressing. If anyone has it, how does it affect you and how do you cope? I had another acute attack of vertigo the other day and was completely helpless for hours and hours. Dh is just about to disappear to the Middle East for work for 6 months and I'm worried about how I'm going to cope with my dcs on my own if I keep having attacks of vertigo with no warning

any experiences gratefully received

thelittleElf Sun 16-Sep-07 23:20:09

Oh goodness, poor you. I've never heard of it i'm afraid so can't offer any advice. Hope you can be given some medication to control it? x

vole3 Mon 17-Sep-07 02:13:11

I don't have it, but my Dad did from about 10 years before I was born.
He was prescribed various drugs to get rid of the nausea, but they eventually tried surgery on his inner ear to help with the vertigo attacks. This was the 1960's and 70's, so I presume that treatments have progressed since then, but I do remember him hanging on to the floor trying not to fall off. The surgery did leave him with hearing loss, and I don't know how much it actually helped him, but what he found most difficult to deal with was the unpredictable nature of the disease.
The attacks did tend to turn him into a bear with a sore head, but he carried on working even when he was so bad that my mum had to drive him to and from work with my older brothers piled into the car.

I'm sure the ENT people will be able to help you and it may be worth ringing the consultants' secretary to see if they can give you an appointment sooner rather than later given your current situation.

arfishy Mon 17-Sep-07 04:08:22

Hi Mimsmum,

I was diagnosed with meniere's about 5 years ago. Oddly enough I'm much better now, so I'm wondering if they made a mistake with the diagnosis, as it's supposed to be degenerative.

It's a tricky thing to deal with. Had mine got worse then I would have rather had the op and dealt with being deaf.

At the moment I'm fine. I can't handle stairs too well (the vertigo returns) or go round in circles or move my head suddenly, but the clinging to the floor spinning and tinnitus has largely gone. I just took every day as it came tbh.

How are you doing? When's your appointment with the ENT lot?

NoNameToday Mon 17-Sep-07 08:07:14

Could be Labyrinthitis

mimsum Mon 17-Sep-07 09:27:06

thanks

I'm hanging onto the hope that it might be labyrinthitis, but my GP says a viral cause wouldn't usually be associated with hearing loss and tinnitus (both of which I have ) and that it would be unlikely to keep coming back

Most of the time I'm fine, apart from the incessant ringing in my ears although it does feel a bit like I'm walking through water, but it's the sudden acute attacks when I'm literally hanging onto the floor and don't know which way is up or down, continuously vomiting which I find hard to cope with - and don't know how I'm going to manage if it happens when dh is away

the appointment's at hte end of October and my GP says the waiting lists are so long at the moment she doesn't think she can get me bumped up at all - but it's good to know you're relatively ok arfishy

mimsum Mon 17-Sep-07 18:44:32

bumping for evening crowd

GreatAuntieWurly Mon 17-Sep-07 18:57:33

mimsum, poor you. I suffer menieres and (i think) tinnitus, as does my dad. Its a horrible illness. The first attack I had happened about 2 years ago and had me laid up in bed for 2 days. NHS direct told me was probably motion sickness, which I thought was rubbish as I was asleep in bed, had got up to get ds1 a drink from downstairs, felt a little light headed (thought I had got up too quick) and slumped at the end of the bed, unable to get up. Anyway, went to emergency doc unit where doc gave me a shot of anti-sickness stuff and wasnt too bad after that. Have noticed since then that when I have an attack I get fuzzy head-ache that tends to start over the right side of my head, almost above my ear, so any dodgy headaches I tend to stay at home just incase I get an attack.

However my dads is triggered by stress, I lost count of the amount of times one of us has found him slumped on the floor in a puddle of his own vomit (TMI, sorry), where the attack has come from no-where. His have become better since he has retired.

Sorry I havent got any advice, tis awful and make sure you keep some anti-sickness medicine in your cupboard and try to relax if you feel an attack coming.

arfishy Tue 18-Sep-07 04:40:40

Hi mimsum. I've just taken a look and wikipedia says that labyrinthitis can cause hearing loss and tinnitus, so fingers crossed for you that it is the case.

I'm really pleased actually (huge thanks nonametoday smile), because if it is what I've got I can sort out the vertigo, I sort of thought I was stuck with it.

Is there any way you can get a private assessment to speed things up?

NoNameToday Tue 18-Sep-07 13:19:51

Hi arfishy
hope you mangae to get things sorted, sadly private referrals do cost!

If it is labyrinthitis, my sympathies.

The good news is that you can recover.

Bessie123 Tue 18-Sep-07 13:29:15

I thought this thread was going to be about chocolate sad

porkpie Thu 20-Sep-07 16:16:56

Mimsum

You have my sympathies, I was diagnosed with Menieres disease about 5 years ago. I started out with mild symptoms of dizziness, which got progressively worse, then I developed constant tinnitus and severe rotational vertigo, which was horrendous. I saw an ENT consultant, and the hearing test showed that I had significant hearing loss in the affected ear, I was worried that it would deteriorate further, which is sometimes the case, or that I may end up with the other ear affected too.
However, I have been fine for the last couple of years, and at my last ENT appointment, my hearing loss is no more, it was normal.
I'm convinced that stress and exhaustion were to blame, at the time I was working very long hours, including shifts, and I was going out a lot socially, this was before ds was born!
Once I cut back on the work, and looked after myself a bit more, things improved dramatically.
My GP prescribed a drug called Buccastem, if I felt an attack coming on I could take one, and it certainly helped to lessen the symptoms, and I felt kind of safer to have them in my bag. Also, on the days when the tinnitus was louder and I felt really tired, that would usually be a warning that I may have an attack, so I would try and do as little as possible and just relax at home - not easy with small children though. Do yours go to school or nursery? Can anyone help you out while your DP is away? Really try to look after yourself, and stay positive, I know this isn't easy when the attacks keep coming, but it is possible to get on top of this thing.
Good luck x

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