Meniere's syndrome

[Digit]

Anybody else suffer from this rotten complaint?

Roy.

 

[Routermonster]

Roy

We have a dear friend in our church - a young mum - who suffers from this condition. She seems to deal with it with great fortitude, even though it really knocks her back from time to time. She's devoted to her three boys, and she has a very supportive husband, and they all seem to cope together somehow.

I don't know whether all this is helpful to you .... I could ak her her if she's part of a support network if it helps.

HTH

Les

 

[Digit]

There isn't one locally Les but there are national ones. I've had the damn condition for nearly forty years but of late it has become more frequent. My GP gave me a different drug to try today which seems to be pretty effective so at least I damn well stand up!
Though the Mitre Sled that I posted pics of has yet to be fitted with a guard, due to the unsteadyness that goes with the condition I am normally guard mad. Better safe than sorry with all the sharp things we use!

Roy.

 

[Harbo]

My mother (aged 90) and my sister suffer from it - so far I seem to have escaped (touch wood).
My sister has very infrequent bouts but my Mum gets an attack every few months - she just lies down for the day until it passes. Lousy condition though. She takes a pill everyday to ward it off with another sort when she has an attack - don't know the names though - sorry?
I suffer from Carpal Tunnel which means I cannot grip things for too long - had to give up cycling because of it. Driving is not too bad as I can change hands on the wheel whilst flexing the other.

Rod

 

[dickm]

Next door neighbour suffers badly from Meniere's, but seems to find that physiotherapy on neck does help. He also swears that crystal healing helps too; I remain agnostic.

Interesting comment about Carpal tunnel - it developed in my right wrist after surgery for Dupuytrens. GP said "ibuprofen, physiotherapy or more surgery". Ibuprofen didn't work, wouldn't go near a surgeon after the previous op, so tried physio. And it's worked like a charm; problem completely solved.

 

[Digit]

I wasn't aware that there could be a genetic background, in my case I know the cause.
Both balance organs have been badly damaged, (mis spent youth again), the left one is 20% effective and the right one 50% effective so the MK1 computer gets confused.
The drugs I've started on today seem to be the most effective that I've tried. Long term? Who knows?

Roy.

 

[Digit]

Interesting bit about the neck there Dick 'cos I find that as I have a neck injury, don't ask, the condition seems to worsen if I have a stiff neck, usually from looking up, such as with painting eaves and so on.
I'll have a chat with a local Pyisio I think.

Roy.

 

[Stollo]

My wife was diagnosed with Menieres disease eight years ago. The disease caused her problems at work with bouts of vertigo followed by nausea and vomiting. Her hearing in the right ear declined until she was almost deaf and at that point her specialist decided that Gentamycin would be the best bet for her. This involved injecting the drug through the eardrum directly into the inner ear. This completely destroyed any remaining hearing and also knocked out her balance organ in that ear. This cured the vertigo/spins for about three months and then they started again. A further dose of Gentamycin was then given same as before, and to this day, seven years later, since the second Gentamycin episode, she has had no further attacks of vertigo/spins etc. As she now only had balance on one side, for a few months she walked with a stick until her confidence grew and she eventually left it at home. We keep our fingers crossed that she doesn't go bilateral whereby the other ear becomes a problem.
Her current deafness in one ear causes a few problems, especially in noisy surroundings when it is difficult to separate individual voices and she does have tinnitus quite bad at times but this is still preferable to the vertigo attacks that preceded it.

 

[Digit]

Her current deafness in one ear causes a few problems, especially in noisy surroundings when it is difficult to separate individual voices and she does have tinnitus quite bad at times but this is still preferable to the vertigo attacks that preceded it.

The problem of separating voices from noise is a real problem. I'm almost total deaf in the right ear and use a modern digital aid in the left, which is considerably better than the older types, but not as good as the 'real thing'.
Also I find loud, sharp noises, like our dog's early warning system, absolute murder!
Destroying your wife's hearing seems very drastic Stollo, deafness is very isolating I find and is certainly desperate measures.
My tinnitus isn't even of the musical kind, it sounds like a dog barking!

Roy.

 

[Stollo]

Her current deafness in one ear causes a few problems, especially in noisy surroundings when it is difficult to separate individual voices and she does have tinnitus quite bad at times but this is still preferable to the vertigo attacks that preceded it.

The problem of separating voices from noise is a real problem. I'm almost total deaf in the right ear and use a modern digital aid in the left, which is considerably better than the older types, but not as good as the 'real thing'.
Also I find loud, sharp noises, like our dog's early warning system, absolute murder!
Destroying your wife's hearing seems very drastic Stollo, deafness is very isolating I find and is certainly desperate measures.
My tinnitus isn't even of the musical kind, it sounds like a dog barking!

Roy.

Roy

By the time the Gentamycin treatment began my wife was virtually deaf in that ear and would almost certainly have been in another few months at the rate it was progressing, so not really any difficulty making the decision to go ahead. At the time, we understood that Gentamycin was the normal treatment. I believe they have stopped using it now and have less drastic treatments.
My wife's tinnitus is a loud clanging type of noise.

Dave

 

[Digit]

Get enough of us together Dave and we could make it into top of the pops!
There's no cure for me but I think there must be for some 'cos as I recall Alan Shepard, the first American in space, suffered from it but was successfully treated. He certainly flew again.

Roy.

 

[martlewis]

I too suffer from this. About 3 years ago I had an ear infection and dizzzy spell. After a few more my doctor referred me to ent clinic and they diagnosed. About every 6 months I get a week or so of headaches, full feeling in my right ear and dizzyness lasting a couple ofhours at a time.

As it happens I was at hospital today to be discharged, and am awaiting my appointment for a hearing aid fitting as I've lost all mid to low tone hearing in my right ear.

Mate it's a horrible disease, and I don't think ayone will really understand unless they are directly affected.

Mention of destroying hearing to stop the dizzyness being very drastic, well I've been in discusstion about this with the consultant. Until you experience how crippling the dizzyness is you won't understand. My attacks are so severe I can't stand and on one occasion it caused me to fall. I can do nothing but lay still for a few hours while the room literally spins. The slightest movement, even moving my eyes to look at something else causes me to be immediately sick.

Without exaggerating it really is that bad and I sympathise with anyone suffering with Menieres Disease.

 

[Digit]

My attacks are so severe I can't stand and on one occasion it caused me to fall. I can do nothing but lay still for a few hours while the room literally spins. The slightest movement, even moving my eyes to look at something else causes me to be immediately sick.

Believe me my friend, I know!
Despite having had it for 38yrs I have never been sick. I've been hospitalised and been reduced to crawling, but being constantly on the edge of being sick is, for me, the worst part.
In all that time I have never met a fellow sufferer and am very surprised at the response to my original post.
Best of luck with the aid as well, if nothing else they tend to make people shout at you so at least you can hear! :lol:

Roy.

 

[martlewis]

My attacks are so severe I can't stand and on one occasion it caused me to fall. I can do nothing but lay still for a few hours while the room literally spins. The slightest movement, even moving my eyes to look at something else causes me to be immediately sick.

Believe me my friend, I know!
Despite having had it for 38yrs I have never been sick. I've been hospitalised and been reduced to crawling, but being constantly on the edge of being sick is, for me, the worst part.
In all that time I have never met a fellow sufferer and am very surprised at the response to my original post.
Best of luck with the aid as well, if nothing else they tend to make people shout at you so at least you can hear! :lol:

Roy.

I'm sick every time I have an attack. In most cases I'll be sick 3 or 4 times. That and the spinning are by far the worst symptoms. I can cope wth the rest, evan the hearing loss and continuous tinitus that I suffer.

My consultant said 1 in 1000 people suffer from this, which is a pretty high number considering so few people know about it!

 

[Digit]

Surprisingly high, as I said I've never met another case. I feel for you, constantly being, or feeling sick, is awful.

Roy.

 

[Jake]

Sounds horrible.

 

[Jenx]

Sorry to hear that you gents are having to endure something like this. I'd heard of it, but have no real understanding of the condition... it sounds pretty awful.
Hope you find some form of treatment or medication that eases & minimises the effects and symptoms. Certainly doesn't sound a lot of fun at all.
I'm guessing that this must be a 'chronic' condition and that you'll never be completely free of it, even with a relatively successful treatment ?
From the level of response to Roys original posting, it sounds like its quite a wide-spread thing ?
Not a nice thing at all... really sorry to hear that you have to endure this on a daily basis, i really hope you get something positive done about it soon.
Does the NHS 'kick in' really well, as they do with the more 'heard about' conditions such as Thyroid problems, Hypertension or Diabetes ?
I'm 6 months into being diagnosed as a diabetic.
big lifesytle changes, and so far, so good.
HbA1c is down to 7.4 as of last week...
looking to get that to 5.8 or thereabouts, from the wrong side of 17 at the outset :shock:
The NHS care I get has been nothing short of fantastic.. their thinking being that its cheaper and easier to treat me now, rather than after the consequences of later diabetic complications.

Hope you get sorted out soon Guys.

All the best.

 

[Digit]

Like Diabetes Jenx it requires that you live within a certain framework, I know that looking upwards for a time will trigger an attack, so I try to work in way that prevents it happening.
Various drug medication is available, the last lot I was given was so toxic I was allowed only two days usage, the present stuff is much more a preventive mechanism.
The NHS have been marvelous, though some of their methods look more like torture sessions!
Imagine, strapped to a couch and suspended upside down, then warm air is blown into your ear drum then followed by cold air. Meantime you are wearing a special set of goggles and given a control pad, and whilst the world is going crazy you are trying to keep a spot of light under control.
Beats space invaders hands down! :lol:
One of the reasons that we live in a bungalow is that staring down a stair case which won't stay still can be lethal.
Replies to my post have shown that others are a lot worse off than me, and I do sympathise with them, the fact that they haven't mentioned it earlier shows that most have done the same as me, made the best of it and got on with life.

Roy.