I am hoping to start an open forum for those suffering from Labyrinthitis. Most information from medical professionals is unhelpful so as a sufferer I would like to give some helpful hints if anyone is interested.

Last reply: 26th Jun 2018 / 4 replies / Post by Goulah

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Posted by: Kezzaj
Posted: 20th May 2018

Kezzaj says: What is labyrinthitus? Reply


Posted by: Goulah
Posted: 20th May 2018

Kezzaj says: What is labyrinthitus?

Goulah says: There are many little bones in your ear and one area is called the labyrinth. Sometimes you can get a virus and the area is damaged and it affects you in many ways but usually quite violently. It can be hundreds of times worse than vertigo or any other balance problems and makes you violently ill. Best way to imagine it is to think of yourself looking at a poker machine whilst going round in circles like a roulette wheel whilst being on a roller coaster. The nausea is so bad that you can spend 24 hours throwing up, cannot walk as you fall over and cannot see. I was only able to crawl (a lot less distance to fall to the floor) as my legs would not work. It is not only the physical problems but if you don't know better you think you are going mad because the walls, floor and ceiling seem to move. Reply


Posted by: sonyabee
Posted: 23rd Jun 2018

sonyabee says: I'd be interested in hearing your hint's Goulah.


Posted by: Goulah
Posted: 26th Jun 2018

sonyabee says: I'd be interested in hearing your hint's Goulah.

Goulah says: My previous message disappeared as I was typing it so will try again.

Labyrinthitis can be a lot worse than the medical professionals say (and understand). The most important thing is to believe in yourself and don't put up with them saying it is not as bad as you make it out to be. I was advised it would pass in a week or two and I still get it after seven years. At first I literally thought the floor had collapsed as I could not stand, kneel or even crawl and I was violently ill. I finally managed to crawl to the bedroom and was horrifically ill and not able to move for 48 hours. Eventually I managed to ring someone and was taken to the doctor who gave me an anti nausea injection and sent me on my not so merry way.

Hint 1: Don't panic. Weird as it sounds, I found that swearing got me through because it to a certain extent gave me something to concentrate on so I did not hyperventilate.

Hint 2: Make sure you keep a bucket next to you at all times because your system takes over and you have no control over your bodily functions. Sorry to be gross but I was so sick for four weeks that I lost 10 kilos a week for two weeks and then five kilos for the next two weeks. I learnt that the best thing for me was to lie on the backroom floor with a doona around me and a sports water bottle next to me.

Hint 3: There are some self help groups around. I found a site that was based in the UK and it opened my eyes to what goes on and how to cope. The most helpful thing (after I had "recovered" enough to sleep in my bed once more) was that there is a form of physiotherapy that can help. You do have to persevere but it will eventually help.

Hint 4: Sod other people. Besides the being taken to the doctor and food being bought for me by my work colleague the first week, I had absolutely no help from anyone. Between the "woe is me" and the fear induced by the lack of bodily control, I did what felt better for me. For example I stayed in bed not moving for as long as possible but I forced myself to have a sip of water every hour even though I knew it would make me ill. I set my phone alarm to go off every hour for that sip and to make myself move as my body was "closing down" and not wanting to work. Having managed to ring my family (who live an hour's drive away) they said they would stay away as they did not want to catch what I had.

There are various levels of the sickness but they are all debilitating. If your legs don't work then crawl if you can. My problem was caused by a virus in my ear but it can be many other things that cause it.

Hint 5: See an ENT (ear nose and throat) balance specialist (mine was at a public hospital and surprisingly I did not have to wait long at all). Even after all these years I still get affected by nausea every so often and my balance is poor. Having had a couple of broken bones (nose, finger and two ribs) in separate accidents I also had to attend a balance clinic at another hospital

Hint 6: make up your own physio program when you have been "dismissed" by the doctors and specialists. I started doing my own exercises at the beginning of the year and it is finally starting to pay off. I don't fall flat on my face (or behind) as much as I was six months ago and can walk down the street and look in a shop window now.

Pardon if my ramblings are not quite as coherent as they should be but the main thing is that you should not let other people make you feel "small", do something for yourself and not what others say you "must" do.

Never doubt yourself and when you feel absolutely dreadful with nausea and lack of co-ordination, think of something absolutely ludicrous and laugh.

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