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  • Sister with Menieres, needs help!

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    Old 10-10-2015, 12:33 PM   #1
    Dizzysister
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    Sister with Menieres, needs help!

    Hi, I'm new here and talking on behalf of my sister who is at the end of her tether!!

    Brief history is she's been suffering on and off for 8 years with what has provisionally been diagnosed as Menieres. She takes some medication every day which for a long time did the trick and she had no attacks. However it suddenly hit her again about 4 months ago and she went on to have regular bouts of the dizziness but has found taking a tablet (not sure what it is) as soon as she feels it coming on and lying down really keeps it at bay but she's left feeling really wiped out and groggy for a few days after.

    She has been seen at an ENT clinic where she lives and a Consultant earlier this year suggested it maybe migraine related and was going to refer her to Neurology but nothing appears to have been done about that. She had an MRI two months ago and finally had the follow up appointment yesterday which was useless. The "Specialist" suggested she has an MRI (d'uh, she was there for the results which were in her file in front of him!) and other than confirming she didn't have a brain tumour couldn't offer any explanation or real help....even went as far as to blame women for getting "too stressed about every day life" if you can believe it!!!!

    Anyway, I have been doing some research and found there is a clinic and Specialist in London and wondered if anyone had been there recently and how we might go about getting her referred there? The Specialist is Prof Luxon and I believe runs an Audiovestibular Clinic? My sister is based in West Yorkshire but she could possibly get a private appointment I guess or does anyone know if the help is available on the NHS as I understand you can choose who get referred to.

    I really feel for her, she's under a lot of stress generally which we are sure doesn't help and maybe the anxiety is a cause but it's a vicious circle as the threat of having an attack at any time is a constant worry for her. She goes about her every day life the best she can but can't enjoy things and gets very anxious that she'll get struck down in the middle of a shopping centre or whilst driving for instance. I don't know how to help her directly especially as I'm based down South so can't be on hand when she's ill so the next best thing I can do is try and find someone who can help her understand how to manage this condition. My worry is the cause of it can't be easily pinpointed as there are potentially so many reasons so it may never get a specific, accurate diagnosis.....

    If it's relevant she is 47 and apart from this problem has always been fit and healthy.

    Thanks for reading!

     
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    Old 11-11-2015, 09:32 PM   #2
    Slerickson
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    Re: Sister with Menieres, needs help!

    Hello, the vertigo you speak of is truly an awful thing. I was diagnosed with meneires when I was 30 back in 1981. I had 4 surgeries that in my opinion destroyed most of my hearing. But the severity and frequency made living not worthwhile. Worst case vertigo is when you spin or things turn so fast it's all a blur. I found the episodes usually lasted about an hour. To keep from throwing up I would lay down and find something to stare at and keep one foot on the floor. I'd be sweating profusely but once I got a chill I new the episode was ending. Then I would fall asleep feeling worn out.
    I too tried the antivert meds, tranquilizers, diuretics, anti histamines and alcohol to quell the episodes. Looking back I'd say it was only time that resolved the problem. As I read somewhere, with meneires you have to live through the process of your vistibular system being destroyed and then it stops. I was told it'd take about 8 years and found that to be true in my case. I've lost 80% of my hearing, have loud pounding tinnitus in both ears, and occasional nauseous feelings and some balance issues but nothing severe. My balance relies on visual cues so if there is no light I am staggering like a drunk.
    So it's not a good thing to have especially if it's bi-lateral. Since the cause of it is unknown, there is no cure. I sincerely believe mine came from being in a motorcycle accident as the first symptoms started about 6 months afterwards and over a period of 9 years grew more pronounced and frequent. It was when I noticed a drop in hearing in one ear that I finally went to see an ENT doc and got the diagnosis.

    Last edited by Slerickson; 11-11-2015 at 09:35 PM.

     
    Old 11-11-2015, 09:59 PM   #3
    Cindy89
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    Re: Sister with Menieres, needs help!

    Sorry your sister is going thru this,its awful experience. I don't have answers as i just started experiencing something similar about 2 months ago. I hope she gets relief soon

     
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