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Fellow Meniere's sufferers--wobble over here and speak to me please!

(16 Posts)
Greatresult Fri 28-Sep-12 13:27:30

Mine was diagnosed 4 years ago but has been dormant for a good 2 years. I am really annoyed it is back. I had a spectacular spinning collapse in Waitrose 2 weeks ago and am now terrified it will happen again.

Saw my ENT consultant who has me on Serc--never needed to take it before. I feel fine on it and am putting a lot of faith in it. I can live with the quite mild tinnitus and I am getting help for hearing loss in affected ear. Just the one ear, thank goodness. My confidence is slowly returning--have been out and about on buses today, but I have not driven since Waitrose incident.

Would love to hear positive, encouraging (?!) input from others.

ICantStandLosing Fri 28-Sep-12 13:36:31

Hi Greatresult, fellow Meniere's sufferer here.
I was diagnosed 3 years ago but have been having symptoms for 8 years.
They're currently under control (ish) and I'm not taking any medication right now. I didn't find that SERC made any difference to my symptoms so I stopped taking it.
I have permanent tinnitus and profound hearing loss in the affected ear. My other ear has very good hearing (thank goodness) and I wear a hearing aid sometimes, when I'm not going to be in crowds. Background noise disorientates me and I don't find the hearing aid helpful when there is a lot of noise around.
I totally understand the fear of having a spin or attack at any point - I've had quite a few on the tube or worse still, on the platform.
Regarding your recent attack, I would watch out about driving if I were you - have you informed the DVLA and your insurers of your diagnosis? If not and you have an accident, you may find you are not covered. Also, you would probably have your licence suspended anyway. My consultant won't allow me to drive until I have 2 symptom free years. So you may find that you'll have to give up the driving again sad

Greatresult Fri 28-Sep-12 14:26:05

Hi ICantStandLosing, good to hear from you. Yes, I have written to DVLA and told insurers. I live in a city, so loss of car not too bad. My teenage son just got his licence and is more than happy to drive me places. Letting go of the anxiety is the hardest part. Hate to read it is supposedly triggered by stress--makes me wonder if I will literally be in a spin if I get upset about anything! My consultant says not to look for triggers and was dismissive of salt etc being implicated. It is hard to resist scrolling through the internet, but I do think there is a lot of rubbish written on there regarding this disease. Must resist!

tb Fri 28-Sep-12 22:15:10

My uncle had something similar, and was treated by having some sort of manipulation of his head while lying down. He had to turn his head in a particular way. Since then, he hasn't had any more problems.

Greatresult Sun 30-Sep-12 14:03:55

Your Uncle's problem sounds more like BPV. I am afraid that head movements don't help Meniere's.

JourneyThroughLife Thu 01-Nov-12 19:13:01

Hi, I'm pretty new on here but not new to Meniere's which I've had since 2003. Then it was only a vertigo attack once per year or less, these days it's full blown, massive attacks regularly, horrible sickness and days of dizziness afterwards. Attacks seem to come in clusters with some respite in-between. I was diagnosed properly in Spring this year but have been on Serc tablets and Stemetil for much longer.

I would love to have contact with other sufferers. I joined the Meniere's Society a couple of years ago and read their magazine regularly but there never seems to be any contributers either near my area or available to contact so I've never actually been in contact with anyone else.

Meniere's is really terrifying when attacks are bad and I get vomiting which goes on for hours and hours and hours, it is the sickness which is my worst problem.

How do other people cope?

greatresult Thu 01-Nov-12 19:26:04

Hi journey. What part of the country do you live in? I am in Scotland. So sorry to hear of your suffering. It is a horrible, unpredictable disease. Since I last posted I have had a grommet put in my ear. Too soon to tell if it is working, but my consultant says 50% of patients are helped so worth a try. It was a very simple procedure. Are you under the care of an ENT specialist?

OhWhatAPalaver Thu 01-Nov-12 21:32:28

i also suffer with meniere's, it's a pain to say the least. mine is somewhat unconventional as i have gradually got more and more deaf in both ears over the years, i have permanent tinnitus in both ears and the meniere's has appeared on top of this but seems to be the left ear that causes the vertigo etc.

it started relatively mild but seems to be getting increasingly worse each time i have a bout of it. thankfully i haven't had anything major for about a year, i am counting my blessings!! touch wood it will stay at bay for a while. has anyone had trouble getting an ENT consultant to formally diagnose? only one ENT consultant has ever said the word 'Menieres' and he was very vague about it... :/

greatresult Thu 01-Nov-12 21:58:37

AFAIK the diagnosis can only be made when three symptoms are present...hearing loss, tinnitus and vertigo/nausea. I think a lot of other illnesses include some of these symptoms which makes it confusing.

VillaEphrussi Thu 01-Nov-12 22:07:00

Hello, I hope you don't mind me joining in as it's not actually me that has Meniéres, it's my dad, but I've been living through it and understand how dreadful it can be. I have permanent tinnitus and fear that as I get older I might develop Meniéres too. Do any of you have a hereditary link to it? My dad's had gradually been getting worse, i.e. more frequent bouts, always very unpleasant attacks, but he has not had one for a relatively long time, I think a couple of months, which he puts down to the acupuncture treatment he's had. At first I was a bit sceptical and wondered if it could really change things, but, and I don't want to jinx things, but it seems to have made a huge difference to him.

greatresult Thu 01-Nov-12 22:11:16

I am also having acupuncture and I do believe in it! Very relaxing at least. No one else in my family has it. I don't think it has a strong genetic link. I really hope my DC don't get it.

OhWhatAPalaver Thu 01-Nov-12 22:14:50

yeah it is difficult to make a diagnosis as i am already moderately deaf and already have tinnitus! the vertigo and nausea/vomiting came later but my hearing and tinnitus does seem to get worse during an attack.

I've read about acupuncture being beneficial. i think i might try it if mine flares up again. after i typed my first post above my ear popped in a funny suspicious way and i thought i had jinxed myself by saying i hadn't had an attack for a year!! i didn't materialise though thank god...!

janesnowdon1 Thu 01-Nov-12 22:40:28

OhWhatAPalaver - I was tentatively diagnosed with Menieres 16 years ago, though my consultant preferred to say I had endolymphatic hydrops. I was discharged from NHS as although I still had attacks I was deemed to have "corrected myself".
My attacks got bad again afew years ago (dizzy, vomiting etc) although the symptoms never really disappeared - it's just a question of degree. I managed to get a referral and this time they said I had Migraine Associated Vertigo as my hearing loss had stabilised - and that he believed 90% of menieres has been misdiagnosed in the past. Now on the "migraine diet" and have tried zombifying pzitofen tablets. If it is MAV then it does have a strong genetic element.

Does anyone ever wish they could just pull their ears off and have a clear head? On bad days I jsut don't feel like me anymore - but kind of outside of myself. I have never met a fellow sufferer in RL either. I am in Sussex.

Wishing everyone a peaceful evening

OhWhatAPalaver Fri 02-Nov-12 07:39:20

thanks for the info jane smile i will google endolymphatic hydrops and MAV. my mum suffers with migranes regularly but without vertigo and they have been brought on by the menopause :/

JourneyThroughLife Sun 04-Nov-12 18:21:16

Hi Greatresult, I see you're in Scotland, I'm at the other end in Southern England!
Yes, I'm under an ENT consultant, the hospital has been very good. I also went up to London to enquire about joining a trial they're doing with Meniere's patients, looking at the difference between using gentamicin injections and steroid injections into the inner ear, but I declined the trial because the treatment makes you very ill indeed for some while, and you can't choose which drug is administered. I then paid to see a private specialist - just in case there was anything else possible - he confirmed everything I'd already been told about Meniere's. He also said the steroid injections are available privately (not on the NHS) but they cost a lot, were painful and not very effective for most people. I'd been very ill with the Meniere's for months and I was so desperate I would have tried anything, but then thought better of it.... and then, lo and behold, my Meniere's attacks stopped. They have been in remission since the end of August so I've been able to operate normally for a change, go to work and so on, which I haven't been for almost a year.
I understand the attacks come in clusters and then clear, and then come back. I'm sure mine will come back (sometimes I'm dizzy but it doesn't turn into an attack, so I know it hasn't gone away completely) but at the moment I'm enjoying a bit of freedom. I also want to see what the disease does before I accept drastic medical intervention - if I'd paid for steroid injections I would have thought it was those stopping my attacks, but in fact it happened spontaneously.
I also cut out salt in my diet as much as I possibly can. It doesn't stop the attacks but there are certainly more of them if I eat salty food - anything salty in fact. I've tried experimenting with cutting out coffee, but that makes no difference at all although I know it helps some people. I also don't find stress affects me....sometimes I'm stressed out and have no attacks, at other times I'm chilled and on holiday and I have masses of attacks, so I don't think any correlation there...

greatresult Sun 04-Nov-12 18:53:14

Hi JOURNEY! So glad to hear you are feeling better. I agree it is very frustrating trying to find out what triggers the attacks. My consultant told me not to waste time trying to analyse it. I too am feeling much better. Difficult to say if it's the Serc, acupuncture, or the grommet! I suspect that the cluster of attacks are just petering out for the moment. I suppose all we can do is enjoy feeling normal.

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