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Menieres Disease

  • originaldave
14 years 2 months ago #51749 by originaldave
Replied by originaldave on topic Re:Menieres Disease
mcintosh wrote:

Hi Elizabeth,


I too have Menieres , bi-lateral. Have had it for about 8 years. I am now deaf in both ears :( Each day is a struggle as all my balance mechanism has gone. I am on incapacity benefit and not yet due for change over to esa until Dec 2011. I am also on HRM LRC indefinate. What the outcome of the Dec medical will be is anyones guess. I am not holding my breath, and thinking along the same lines as yourself, as must be many of our friends on this site. I am told by my consultant at Salford that 40% of patients who suffer from this, it doesnt go away, and I am one of them. ( Wonder if there is a tick box for that ?????

San


are you total deaf or low freq?

they also use to blame

they use to say Satan was the cause

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14 years 2 months ago #51753 by penthesili
Replied by penthesili on topic Re:Menieres Disease
I have Menieres too, and tinitus, reducing my hearing, do they got together does anyone know?

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14 years 1 month ago #53271 by Elizabeth
Replied by Elizabeth on topic Re:Menieres Disease
HI Pen. yes they do go together. Recommend Daily Strength Support site for Menieres. Lots of info for you in there. I am member too. Take care :-)

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14 years 1 month ago #53276 by mcintosh
Replied by mcintosh on topic Re:Menieres Disease
Yes they do go together. My hearing was greatly reduced for the first 5 years or so, then one day I just woke up and it had gone. My mothers sister who sadly passed on about 10 years ago also had Menieres and she too went deaf overnight, I know this doesnt happen to everyone, but it is how it was with me. I went to salford last week for my yearly appointment and was told, dont bother coming again as there is nothing we can do. So that made me feel more isolated than ever. No cure, not enough money with nhs cuts, to see people they cant do anything for.

San

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14 years 1 month ago #53405 by penthesili
Replied by penthesili on topic Re:Menieres Disease
Thank you kindly, Elizabeth and mcintosh, that's something I've been wondering about for some time.
Cheers, Pen.

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14 years 1 month ago #53477 by leapoffaith
Replied by leapoffaith on topic Re:Menieres Disease
Hi everyone...
I am 49 & have had chronic epilepsy for at least 20 yrs although only correctly diagnosed 10 yrs ago...
5 yrs ago I awoke in the night to my 1st MASSIVE vertigo attack... friends needed to break in & I was strapped to some kind of stretcher & rushed to hospital...
It turned out I had Labrynthitis (an inner ear problem) which lasted over 4 months... I know I don't need to describe the horror of it because we all know but I was a skeleton by the end...
Since then i have had constant attacks, the worst of which the spinning lasts for approx 4 hrs...they can then keep coming for weeks or drop off...
When they happen I have a feeling of paralysis...my head turns to the right & I can't move a finger,don't know where I am on the planet, am violently sick, sometimes incontinent & also sometimes have seizures at the same time...
I've had different treatments & rehabilitation but can't be operated on or take Stemetil because of my epilepsy so just have to endure...
I was told my balance centre is 50% damaged... Does anyone know what the 50% part really means medically??
I have awful balance problems, especially with steps, as everything seems flat so me & my brain finds it very hard to step down for some reason...
I was also told that although the hearing tests were normal my brain thinks my right ear can't hear & so my left ear compensates... though I don't have these last 2 points written down by anyone...
Sorry my post is long I am getting to my questions...
I also have some cervical spondylosis (degeneration of neck bones)confirmed by MRI...
This all means that my vertigo is caused by at least 3 different things.. i.e. Labrynthitis, epilepsy & problems with moving my neck or I may have Menieres & I do have Tinnitus...
In the new WCA vertigo & dizziness no longer score points (although there is some dispute about it affecting consciousness)& isn't considered as really dangerous!!! MY GOD are they MAD!!!
Anyway I want to ask: if I haven't had 'apparent' hearing loss does that mean I can't have Menieres?... Also my Nan did have Menieres...
Also does anyone also experience incontinence (usually bowel) when they have an attack?... I only lose control of my bladder in a seizure...
I have actually forgotten my original question cos I've gone on so much but feel there are great similarities between vertigo & menieres except maybe for the hearing loss...
How might I be tested for Menieres which my mom is convinced I've got?
At the moment my ears hurt & are full of noise etc. but I don't have bad Labrynthitis... on the 19th feb, however, I was cleaning the bath & hurt my neck again... since then I haven't had a full attack but I've got mild vertigo all the time with no peace... I have a new Dr who just seems to be accepting I have vertigo & can't take anything & that's it & he's about the same with evrything else & never seen him for longer than 7 mins...
I feel i need help & can't carry on like this... does anyone have any advice on what help i could ask for?
I'm afraid I will have to ask my original question when I remember it ha ha!... I know it's to do with ESA & WCA...
Best wishes to all...

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