Labyrinthitus

Like janerowena, I had my first attack when pregnant with DD1. I was in bed for 3 weeks, unable to move without the room spinning and my throwing up. Afterwards there is always a period of a few weeks where I feel 'spaced out'. I have had several bouts over the years, but have learnt what movements to avoid, which rules my life to a certain extent. I automatically turn my head gently, use blocks to stop my head going too far back during sit-ups in exercise classes, don't look up at tall structures or the sky, only sleep on my left side, and change orientation very slowly.
When experiencing this condition for the first time it is very distressing, but mostly it is possible to avoid or lessen any further problems.

One of my memories of a sudden attack includes my (now ex) DH refusing to stop the car whilst I vomited out of the door! He later suffered himself and apologised for his lack of sympathy!

my son had labrynthitis and every so often it comes back - his doctor said that's just how it is

OMG thank fully I don't have a boat to steer but I did go completely blind again in my left eye when negotiating the fell roads around Swaledale. Luckily stopped in time and swapped with DH.

My grandfather used to get it really badly, I was with him once when we were about to cross the road. He suddenly grabbed the lamppost and started swinging round it. Round and round he went, until I realised what the problem was and supported him.

On another occasion he lost his balance while he was steering his rather large boat on the Thames, we were all on board, the whole family of about 30. He took us to the wrong side of the river, and other men were shouting at him and accusing him of being drunk.

I think I have been let off pretty lightly so far, the longest bout I had lasted for about three weeks, but it was bad timing as DS was a new baby so of course I had to carry him up and down the stairs. I was so scared during that time, I used to bump us down on my bottom.

Hello Teetime,

You understand. A bad bout of Lab., such as we have suffered is a complete nightmare. I had to take 3 weeks off work when mine was at its worst.

My doc reassured me that it is very unlikely to happen again so that is reassuring.

I really don't want to risk the exercises they recommend because I'm afraid it will make it worse.

I also walk oddly when I'm dizzy and really have to concentrate. I think I might be having a stroke but my ears will suddenly ache and I know it's the Labyrinthitus having a go.

I think we'll wait and see how many responses this thread gets and see if a support group could be possible. It's an unseen illness because there is nothing visible really and people are not that sympathetic.

falconbird I'm the same I had such a bad bout of labyrynthitis I had a few weeks off work, I was blind in one eye and completely deaf in the affected ear. Its has left me with occasional dizziness especially if I have a cold, a visual disturbance if my head is not on straight so to speak and a definite list to starboard when walking. I manage it by making sure I rest when its happening and if I'm nauseous take a Stemetil. Otherwise as you say I live in fear of it happening again- perhaps we should start a support group? Best wishes and I hope you don't have any more attacks.

My dizziness comes and goes. I can go weeks, months, without a single symptom and then whoops - back it comes. Never as bad as before but disconcerting. My doc said the best thing is to keep going as eventually the brain will readjust. I occasionally have the feeling that the ground is moving under my feet as well.

Luckily I don't have tinnitus which must be difficult to cope with as well as feeling dizzy.

Interesting that it seems to go with tinnitus. I have a variety of tinnitus sounds most of the time. An almost constant ringing, a clicking sound which seems to come at times of stress and in my car I get a noise as if I have a dangly earring touching a metal brooch. I have searched the car but can't find anything touching so I assume it is in my head (I don't get it in other cars and DH can't hear it in mine.) The tinnitus is in the opposite one to the one which caused the vertigo.

Yes, I have it off and on. Firstly when I was pregnant 20 years ago, which was dreadful as my balance was bad enough as it was - turning my head to look right and left when driving used to set it off beautifully. My last bouts were only a couple of weeks ago, on three separate occasions. I never know when it happens, but once I was in an earthquake and it feels a bit like that, as if someone is trying to sweep your feet from under you, if you are upright. I have tinnitus after the event quite often, too.

Yes Falconbird it is a horrid illness which has left me with tinnitus, but that's another story.

Yes I too get moments of dizzyness which seem to last only a moment or two and then are gone. The moment I feel it I stop what I am doing and just rest a moment and it goes. Don't know if this is your experience ?

I had a bout of vertigo, which the doctor said was Benign Paroxysmal Positional Vertigo. He did a thing called Epley Manoeuvre and gave me an exercise sheet for Brandt Daroff exercises which are for that condition. You can find these exercises on YouTube. I hope they will help you. He told me the vertigo was caused by tiny crystals which find their way into the wrong part of the ear and trigger the hairs which affect balance. (I'm not a medical person but that is roughly the explanation.). It was a very weird experience when it happened.