Ménière’s Disease

[JustDanceAddict]

The GP has suggested I may have this but I’m not sure. I have all the symptoms (inc clear MRI so nothing else causing the vertigo/hearing loss/tinnitus.
Deafness - one sided - is constant and permanent. Tinnitus - def worse when I have a vertigo attack. Vertigo - sporadic. No attack for 3 months after having them on and off every few weeks for about 9 months and also having it badly 6 years ago (not being able to get out of bed). When I get a bad attack now it’s exhausting - and I feel sick too.
Will getting a diagnosis make any difference to my life? I have some anti-emetics but I don’t find they make much difference. I think some antihistamines can help too.
Any advice welcome /. I can cope with the tinnitus and deafness but the vertigo is the killer.

Getting a diagnoses may help. After being off work for 6 months dh has just started in a phased return after getting his diagnoses and starting treatment. He has found the beta histamine is helping. He’s also worked out that salt is a trigger for him. Caffeine affects some people too. And certain lighting such as in supermarkets.

He is a professional musician & teacher which was horrifying for him.

If you work you will also be covered under disability legislation and can ask for reasonable adjustments.

Thanks - my line manager is v good about it, but I actually haven’t taken that much time off. I work p/t in a school so quite a few days I don’t work anyway. I’ve had to leave early a few times and had a couple of full days off.
Six months off sounds scary, but I can imagine with constant vertigo it would be really hard to work and function.
I haven’t found triggers yet - wish I had as I could avoid them.
I will ask gp for that medication although I have been told that they only prescribe it in the worst cases and I do function but have a lot of anxiety about having an attack.

My dh has this - my sympathies to you. Yes, I think getting a diagnosis is worth it. Not least, so your employer understands what is going on if something happens at work. With dh, it does come and go. There are good periods and bad periods. One of the main things that helped him was cutting his salt dramatically and he was also put onto two different medications: betahistine (which everyone gets on diagnosis) and the other is Bendroflumethiazide which was prescribed by his consultant. The truth is we have found the NHS to be truly lacking. Once, one of his meds (from the consultant) was discontinued and the GP randomly assigned another instead of admitting he didn't really know. It ended up being the wrong one and making him much much worse. The consultant he sees as and when needed (Dr Tony Wright in London) is a renowned expert on Menieres and has been wonderful. We are lucky to have private health insurance that covers it.

To add about triggers, Dr Wright recommends cutting down on salt. This has been very successful with dh. He also cut out caffeine and thinks it makes a difference. However, nothing is a complete cure. We did find that bright lights and loud sounds (like in the cinema) were a trigger - that was an experience I don't want to repeat! Generally, dh has had a few very good years recently with no major vertigo attacks. But he still gets mini ones which leave him quite exhausted after. We never see the trigger except of course the big one - stress.

I strongly suspect that DH has this too. It has been suggested by doctors but not formally diagnosed. It's horrible when he gets the vertigo. My sympathies!

Yes a lot of that ties in with the advice dh had. It all came from the private consultant though not the GP. After community ENT discharged him the GP Referred him to the hospital but the first available appointment isn’t until mid January next year.

Dh also saw someone in Manchester via the Musicians Union to get custom earplugs who turned out to be a consultant from one of the hospitals there. He was horrified by his NHS treatment and advised him to self refer if need be to him.

Thebig issue now is getting to work. He has lost his driving licence. He can’t use buses and at the moment is using thectrsin but noisy, public places are very difficult.

@AlexanderHamilton - check out Access To Work scheme. They can arrange for taxis to & from work for your husband if he qualifies. I just pay the cost of what it would be for me to get the train into work (return) and DWP pay the rest. It's been an absolute godsend for me.

Iklboo - I have a recent thread on that somewhere. He has been reccomended he apply but most seemed to think he wouldn’t be eligible.

www.mumsnet.com/Talk/employment_issues/3422654-Does-anyone-know-anything-about-the-Access-to-Work-scheme

It's worth giving them a call directly to ask. They're really helpful.

I have almost identical issues to your DH in terms of mobilising, using public transport etc triggering attacks. I've had ATW since July this year.

Sounds promising. I’ll get him onto it b

WiFit sorry to hear about your dh too. My employer is good and v sympathetic about attacks but i just want to be in bed! There is a bed there so i can lie down.
I have private insurance and live in London but I’m not sure if it would be pre-existing. I could investigate though.

Alexa -. I do worry about the driving aspect. I drive to work but I can usually feel an attack looming so I’m careful and will not drive then, but getting public transport there is a real pain in the arse. I’d be gutted to lose my licence as I drive a lot. Dh mainly drives at weekends thankfully but I use car in evenings to see friends etc.

My mum had this and your symptoms certainly fit the bill, sorry to say. Have they given you any medication?

Dd goes to college in the city where dh works and she’s had to move in with a host family because of it as he can no longer drive her there.

Sassitude I only have the anti-emetic from about a year ago as was getting bad attacks around Xmas.. doesn’t do much tbh. That’s when the GP mentioned Ménière’s.
I had 4 months with no attack recently and it was so nice but it comes back sporadically. Prior to that I had attacks every few weeks for 9 months! That was after 3 years of nothing too.,