Wednesday, 21 September 2011

Living with Meniere's disease

I am very lucky to have a wonderful Mum, we are very close, have always got on well and although over the years she may have driven me slightly mad (but that's including going back to live with her twice as an adult so it's not bad!) you cannot fault the way she powers on through any obstacles that come her way.

One of the obstacles she has to face is the fact that she suffers from Meniere's disease, a disorder of the inner ear


Meniere’s Disease (Syndrome)  equals  Tinnitus - Vertigo - Deafness

People say they:
Have a fuzzy head, feel light-headed, feel woozy, have eye pains, noise or pressure in their head or ears, double vision or blurred vision. See moving objects and rooms spinning. Sickness, nausea, have burping. Feel they are in a virtual reality, have a sensation of not being in the room when they are, become forgetful and lose concentration. Have a drunken feeling, a staggering walk and veer from side to side. Bump into doors, have feelings of falling all the time and some actually fall. Feel they are swaying.

Logo - Meniere's Society

People do not necessarily experience all of these symptoms; it affects everyone in different ways.

Attacks can occur at hourly, weekly or monthly intervals, depending on the condition at the time, ranging from several incidents a day, but it can also go into remission.

1 in a 1000 people develop Meniere’s. The condition starts in one ear only. The other ear is also affected at some stage in about 4 in 10 cases.

Mum has kindly written the following post about her experiences...


I for one certainly did not, way back in the 1980’s, I like many people, had never even heard of it. I phoned the Tinnitus and also the Meniere’s helpline, they were marvellous to talk to and I realized I was not alone. They both provide information sheets and support to sufferers and carers.

Mine started with Tinnitus in my left ear, the first sound that I awoke to one morning and I wondered what was happening. After awhile I began to get dizzy spells, the worst time in the beginning happened while I was out shopping, I felt that I could not walk out of the shop and wondered how I would get home. I should have asked for a chair to sit on, but I steadied myself and with sheer will power arrived home.

After a few more such events, I finally went to my Doctor, who arranged for me to see a Consultant at the Hospital. I attended many times, each time I was given an audiology test. This proved over many months, that my hearing in my left ear was fluctuating. Quiet sounds became hard to hear and loud sounds became even louder.
I was finally diagnosed with Meniere’s disease and given Betahistine Hydrochloride (Serc) tablets to take, which I still take to this day.
  
In the early days I experienced times of sickness, and actually cried at one time, wondering when it would stop. Thankfully I do not experience that anymore.
After a while I started getting drop attacks, one minute I would be standing, the next without being able to help myself, I would fall down on the floor and the next minute  get up and be fine. This was the beginning of being concerned about going anywhere on my own, which now days, I do not.

I can remember sitting down for a dinner of sausage and mash one evening, but feeling a bit dizzy, as I looked at the sausages on my plate, they looked just as if they were going round and round, hence that’s where I left them. I have laid on the bed at one time when the room was spinning round and round, the pictures on the wall, moving up and down, shutting my eyes, so I could block it out but still feeling as though I was spinning. Every so often opening my eyes to see if the world had returned to normal and having to shut them again, till a couple of hours later.

I am a fighter and one of my problems is probably that I never give in; I always try to show the Meniere’s whose boss! and more often than not, there is a funny side to events.

Whilst on holiday with my Daughter, many years ago - it was role reversal, she was looking after me! While waiting for the receptionist to order us a taxi, the reception desk was very high, I had a drop attack, imagine her face when she turned round and thought we had gone, she could not see us as my daughter was kneeling beside me, on the floor. Within minutes the cab driver came in, and I thought to myself, his probably thinking that woman’s drunk already, but I can assure you, it was not a case of take more water with it, I had only been drinking water! Just one of a few tales that can be told.

Luckily I always have help at hand, my wonderful husband, daughter, son-in-law and friends.



If you (or someone you know) suffers from Meniere's here are some contacts which may be useful.
                                                      
British Tinnitus Association -   Helpline 0800 018 0527              
Meniere’s Society - http://www.menieres.org.uk/index.html   Helpline 0845 120 2975  

13 comments:

  1. http://www.youtube.com/watch?v=Um1-xvFXNVA

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  2. The truth about Meniere's disease
    http://www.youtube.com/watch?v=Um1-xvFXNVA

    ReplyDelete
  3. My late father had this disease. It is a horrible thing. What a brave, informative  and interesting post. You are very courageous.

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  4. I have never heard about this disease, and it sounds quite dreadful. Thanks to your mum for writing such an informative post. She sounds like a strong woman. 

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  5. my husband is having tests for this. thanks for this post because I had no idea what it is. x

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  6. Thought this was a lovely informative post, think your Mum is clearly a very strong lady living with such an awful desease. I had never heard of Menieres before reading this.  Well done to your Mum on a great post x

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  7. Please tell your mum a big thank you for writing this post. I'd never heard of this condition until today.

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  8. I'd heard the name but never knew what it was. I had some dizzy spells last year on waking up and had to grab hold of the bed to stop myself from falling off as the bed turned over. Obviously it was all in my head but that's what it felt like - very frightening. I wish your mum as easy a time as possible xxx.

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  9. Thanks for that, I had no idea what this disease was all about. Wishing you lots of strength.

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  10. A friend of mine developed this when she was only 23 years old, and after a nasty divorce (can it be stress-related). One day she just collapsed on a zebra crossing, and she became frightened to leave the house. It changed her life. She was outgoing, lively and a bit crazy. She became introverted and nervous. It is always good to see someone 'coping' and doing what they can to overcome a disease like this. Thanks

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  11. Ah, hope all goes well for him.

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  13. Cheetahs In My Shoes9 October 2012 20:31

    thanks to your mum for writing such an honest and informative post.  I had ear/balance for a while (in the end down to something else) and it is so disorientating - I hope she continues showing it who's boss!

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