Anyone else with Menieres? Feel very alone and isolated

anitadean

I have recently been diagnosed with Menieres and feel very alone and isolated with this condition. Is there anybody else in my area who also has this as there does not seem to be any help groups in Milton Keynes.

I dont seem to be able to get any help even though I cant walk very far without having an acute attack of vertigo and have gone from being very independent and outgoing to virtually a prisoner in my own home as I am too anxious to go out without having someone with me. When I am out I walk as though I am drunk so you can imagine what looks I get and if I have an acute attack of vertigo I have to sit on the ground close my eyes until it passes which can last from anything like 30 mins plus which if alone would leave me very vulnerable.

Before having this I worked full time but have been unable to work for obvious reasons since January this year thankfully my company are being very supportive but as I am on Statutory Sick Pay dont seem to be able to access any financial help to allow me to be as independent as possible.

In America Menieres is an automatic disability as it has no cure and no treatment but in the UK it seems that it isnt even recognised as anything Ive had to fight to even get a diagnosis since 2010. I suppose I should be grateful for a diagnosis but some help and support and not have the door closed everytime I ask for help would be appreciated.        

Lasian_Alumni

Hi @anitadean, welcome to the community!

I'm so sorry to hear that you're feeling isolated and you're not receiving enough help, I hope that we provide some support.

We do have other members that have Meniere's, although they may not be in your area. @redjune, @catherinerichards, @JayJay62 - are you able to share any advice or experiences?

Have you checked if you might be eligible for Personal Independence Payment, along with using our benefits calculator?

CockneyRebel

Hi anitadean and welcome

I am sure that we have member with the same condition who will be along soon
 
Have you thought about applying for PIP ?

Have a look at the B&W self test

http://www.mybenefitsandwork.co.uk/pip/indexxx.php

then come back with any questions

CR

atlas46

Hi  and a very warm welcome.

I understand your frustrations, as I have "unexplained" loss of balance and hearing loss.

It can be very frightening at times.

I have come across the Menieres Society tel: 01306 876883.

They have a local network of support groups.

If I find anything else, will let you know.

Best wishes

Atlas46

KSchall

I know this is a bit late to post, but hope it's usefull for others.

http://menieres.org is a good website to visit, lot of members who understand and can offer advice and a good shoulder if needed.

Myself I was diagnosed about 12 years ago.