is minerse disease a disability

mandy2008

mineres disease is it a disability if so what entitlements and i eliable for,
this is brought of by ear infections thats caused profound deafness in both ears and cost me to wear hearing aids inboth ears and cannot go out the home due to all sorts of symptoms brought onby them ineres disease, is there any other persons out there that are suffering the same as i am? if so what help do u get and where do i start?

kind regards
MANDY X

Icewytch

I have Menieres disease, for which I take regular Betahistine hydrochloride. When it first struck nine years ago it was so bad I was hospitalised, then slowly had to relearn to walk, feed myself etc again, like a baby.
Even today, I always feel as if I`m on a moving boat, but it`s managable with the betahistine.
Because of that I was refused Incapacity Benefit as I was told if the medication makes it managable for me to lead a `normal` life then I didn`t qualify.
It does affect my life....I live on an island and used to love travelling to and from mainland. But Menieres has made any boat or plane journey a nightmare, so I have to plan well in advance and take into account when I step off the boat, which moves, (on top of my already `constantly on a boat` condition) then I`m useless for at least half an hour til my balance improves.
And I have days where it`s pretty bad, like now, if I get a head cold and it seems to aggravate the Menieres.
There`s a Menieres Society ...

http://www.menieres.co.uk/

which is worth joining, and they will help you re benefits and coping, etc.
Good luck! I was told it`s a condition one can have for the rest of their life. But with good treatment, it`s liveable with.

Errata

But with good treatment, it`s liveable with.

I'd second this. Attacks tend to come in clusters, so it's possible to feel dreadful for a while then pretty much ok for a while. A positive attitude, learning what will trigger an attack and avoiding that if possible, are both immensely helpful. I wear hearers in both ears, but they bring my hearing up to an acceptable to me standard, so I'd never class myself as disabled because of that. I've had time off work with it, but not a significant amount and probably the longest period was after I'd fallen over and broke two ribs -
my GP put his foot down and told me I wasn't Superwoman.

mandy2008

thanks so much for the positive support you have both sent me, and to know im not the only one out there thats suffering alone, i also take betahistimenes to control my balance im currently on 8mg per day and it doesnt seem to improve the sicknes and balance, i also have to take diazipam for anxiety, tramadol for pain and zopliclone to help me sleep.
i get incapacty benifit and dla, because of health, which i hate the stigma "disabled", i just feel unfortunately unlucky that the drs and ent specialist have failed me to get rid of an ear infection which has never healed in 36 years, and this is why ive now got this disease, so why in the first place with todays advance tecnology cant they find a cure for an ear infection?
its very frustrating, errata may i ask u did ur mineres come on through ear infections? or is it through another cause?
icewytch i can sympathise with u having to learn to rewalk as i feel also like a baby having to hold on to furnature to move about my home and eating sometimes is impossible to the stage where ive litterely dropped from 17stone to now 9 stone, this is causing me a great sense of stress which i know aint helping the situation on bit

Icewytch

Mandy, you`ve got my sympathy, the stress of an attack can be crippling, I know. (((((((hugs))))))
Stress can make it worse though, so it can become a vicious circle...an attack stresses you out which makes you fear a worse attack which in turn stresses you out.
Maybe you could ask the doc for something else to try if the betahistine isn`t working well for you?
I took the high dose too at first and know it takes a while to `kick in` but nowadays have to admit I don`t need it quite so much.
Like Errata said, learning to recognise triggers..with me it`s travel motion, such as boats, cars etc, and things like fluorescent lighting which is in many shops.
Simple things too like learning not to move your head too suddenly, or bend forwards without having something nearby for support
Please give the society a try, they really are helpful with lots of up to date info.
My menieres was triggered in the first place by a virus which struck the island here, causing labrynthitis for everyone. Everyone else got better with Stugeron but I didn`t recover and ended up in Aberdeen hospital having to relearn to walk again.
But I did it! It does ease up in time, Mandy, so hang in there.

Icewytch

PS meant to add, be wary of certain painkillers or sleeping pills as the ones that make you drowsy can also aggravate the menieres.

Errata

errata may i ask u did ur mineres come on through ear infections? or is it through another cause

I wish ! Might have avoided it then. No, I'm afraid half the relatives have it as well. Poor genetic material in my case I'm afraid.

If you had/have had an ear infection for 36 years, have you ever thought about lodging a formal complaint against those who've treated it and failed? Because I most certainly would.
The hanging onto the furniture bit rings a bell. Sometimes I realise my balance is starting to get iffy when I find myself automatically holding onto whatever's available as I walk around the house, which is really helpful as I know I'm going to have to take things easy for a few days or so.
I'm lucky that I can avoid boats, so you have my sympathy Icewytch. The only travelling problem I have is when I'm driving and have to stop at traffic lights but it feels like me and the car are still moving ! The other problem I have is because over the years I've learnt to use my eyes more as an aid to balance, I'm totally useless in the dark and can lose my balance and fall over very quickly.

Savvy_Sue

Icewytch wrote: »

PS meant to add, be wary of certain painkillers or sleeping pills as the ones that make you drowsy can also aggravate the menieres.

I would second that, and a review of your medication might be worthwhile. If you could manage to start by reading the Patient Information Leaflet with each of your meds, you might find warnings about dizziness etc with some of them. GP prescribed an anti-inflammatory for me recently (stronger than ibuprofen) and I felt my labyrinthitis was starting again so had to stop them. Even now my head's not quite right ... so I'm hoping it's not coming back in force because it is No Fun! Also think my tinnitus is getting worse, mostly it doesn't bother me but I've started getting deafening spells of it, which feels ridiculous because I know the noise is only in my head!

mandi

Does the tinnitus effect your hearing Savvy, as in everyday conversation .

I find I can hear higher pitches, rather than lower ones, Im always saying Eh sorry to my BF ( who has a veery deep voice ):o

Savvy_Sue

mandi wrote: »

Does the tinnitus effect your hearing Savvy, as in everyday conversation .

I find I can hear higher pitches, rather than lower ones, Im always saying Eh sorry to my BF ( who has a veery deep voice ):o

It never used to, but I think it may be starting to. Bad burst at the end of church today, during which no-one was talking to me, but I don't think I'd have been able to hear them very well! Although one ear is 'normal', but I get distracted by the other one, IYSWIM.

You're like me, it's the lower frequencies which have gone in my deaf ear. Which makes us unusual!

Icewytch

Yup, got the hearing loss too with the tinnitus!
It means I turn the tv up louder, much to the consternation of anyone else in the room, and remind meself of my gran and grandad who were almost deaf at the end and had the tv on full blast! We`d to wear earplugs as they watched Allo Allo, hee..:rotfl:
I get the car moving thing too, and if I go in an elevator, and step out, it still feels like I`m moving.
I think the scariest thing for me is the feeling of no control....we take our bodies for granted, so when they screw up on us in any way, that loss of control is terrifying. Well, tis for me...but I`m a control freak, har...:o
There seems to be little to do with Menieres aside from controlling it with drugs, sadly. And because it`s a `hidden` illness, nobody else sees it so doesn`t really grasp the effect it can have on our lives.
I was in town on mainland once when an attack hit. I`d to cling to a shop wall, swaying and feeling sick. Some teenagers saw me and gave me a helluva time, saying I was drunk (it was eleven o`clock in the morning!) and I felt pretty humiliated but so sick and dizzy I couldn`t even refute them.
(also made me realise how few folks will stop to offer help to someone if they think they are drunk, and considering how many illnesses can imitate the symptoms of drunkeness.....)