Labyrinthitis - "brain shifts"??

I am currently in my 13th week of labyrinthitis and the most severe symptoms of vertigo have gone. I spent 4 weeks not being able to move in bed as turning my head made the room spin and during the day, I had to lie down frequently. I had a couple of weeks when I thought it was getting better then I had some bad days, which you will all recognise. I was told by the Dr, however, that it would disappear as suddenly as it arrived so last week (the 12th), I had 3 good days and was too optimistic. I woke up without that awful full feeling in my head, I reduced my medication and did compensation exercises but the next day it was back to symptoms! So I am back to full medication, I realise I won't be able to do without that for some while yet. My short term memory is definitely affected; I can't always think of my words or get them out. Some situations are fine but others if I have to do too much too quickly make me feel dizzy.

I also think I am more irritable than I would be normally. It is difficult to tell people as it isn't an illness that you can see and if they haven't experienced vertigo, they have no idea what it can be like.

I look forward in hope that it will just disappear as it is impossible to live properly with this condition

Maggie

ps I will research VEDA website

I've been suffering with Vestibular Neurititis for almost 2 years. My first occurrence was Aug 21, 2011. I was so scared and I thought that I was having a stroke as well- I went to the Emergency in an ambulance. Since

that time, I've been on sick leave twice for a period of two months. The second time being in March 2012.

I've had numerous tests done Blood tests, CT scans, MRI. All were clear. I've also had balance tests done

at the hospital which took almost 3 hours to complete. In one test they put warm and cold water in my ears to test my balance. I also did Physiotherapy on two occasions for about a month which seemed to help.

In March of this year my ENT finally got the results back from my balance tests (it took 8 months to get the

results!!). He said that I have balance loss in my right ear. I'm back at work and I now only working 4 days a week with Wednesdays off so that I have a rest day in the middle of the week. I'm feeling better than I did in

the beginning, but it's never really 100% better. I can always feel my dizziness in the back ground, even on a good day- like turning my head too fast.

Yesterday was a really good day, I felt so good that we decided to go on an outing to a museum and then a

short walk thrrough the museum grounds where they have an outdoor garden and a park. Afterwards we

went shipping for an hour and I carried a few heavy bags to where my husband was waiting. While I was

shopping I started feeling very dizzy and lightheaded from scanning the store shelved too much.

Today I feel so awful and dizzy. I also felt nauseous, so much so that I couldn't finish my breakfast this

morning. This always happens whenever I get tired after doing something that over-exerts me.

Please feel free to ask me any questions that you may have.

Sincerely,

Helen

My first episode came completely out of the blue about 6 years ago. I was then in my late 50's. The day before it happened I had been on the roof trying to fix a television ariel. 

I woke up one saturday morning feeling very dizzy. Our bathrooms are downstairs and I managed to get down to use the loo. I couldn't get off the toilet and sat on the floor waiting for things to clear. They didn't so I called to my husband to help me. He knew something was up because I am very private about bathroom matters.

I had been a radiographer and my husband is a physician. I guess you go with what you know and what I knew was an Acoustic Neuroma! Not only was I familiar with them having worked in a neurological hospital but my brother-in-law had died subsequent to surgery for removal some 30 years ago.

My husband was quickly able to do some basic clinical tests to reassure me it was 'only' labrythnthitis or some other vestibular disturbance. I realise I was very lucky to have this quick reassurance at hand.

In the first acute stage I just wanted to stay in bed. I felt safe. I am a bit of a control freak and to go around looking like I had a hangover is not the impression I chose to give. However that is not the way to conquer this illness. You have to get up and acclimatise your body to your changed sensory perception state.

I play tennis and it's not easy when you try to smash. The first time I  actually fell backwards on the court.

The acute phase lasted about 4 weeks. Since that time I have had episodes completely out of the blue several times, never at the same intensity (or perhaps I am used to it!). I would say it always there at the 5% level minimum. If it gets worse I do the eply manoeuvre myself lying with my head hanging over the bed. It often helps (but not always!)

Oh by the way if you are wondering why I am on this website now. I've been here 3 weeks and have had labrythnthitis all that time, not so bad as my first episode but still not what you want when you are spending time with your grandchildren. I googles labrynthitis and stress because I wondered if they were linked (I'm not a stressy person but my daughter is and I wondered if her shouting at the kids was making me stressed). I was fine when I landed, so it doesn't appear to be the flight but had it when I woke up in the morning. 

Louise had put the bedside table on the right hand side and I had left my phone there. I always lay on my left side and when I perform the Eply manoeuvre I do it for the right side being affected. I do believe that's how this episode has been triggered.

Sorry if I am wittering on but I do think these anecdotes might help and if even one person is helped then it's worth it.

Good Luck everyone.

Jackie

I'm a previously healthy and fit (run 4-5 times per week) 34 year old male, I don't drink alcohol or smoke.

My story is slightly different from you guys. My vestibular problem was triggered after taking mdma (ecstasy) of which I'm a very slight user (2-3 times in 5 years). After suffering from what I had considered a debilitating hangover of feeling so dizzy every time I stood up i fell down and having waves of complete nausea (though never actually sick) for about 2 weeks afterwards I finally saw a doctor who instantly diagnosed Labrithisis.

It’s been about nine weeks now and the illness persists in many differing states of severity. The dizziness for me has subsided and hasn’t really been the real problem, but both the nausea and brain fog has become almost impossible to function with.

The nausea comes in waves and is usually worse at work when I’m concentrating on a computer or standing serving a customer. There is no immediate remedy for this nausea but I’ve found that eating something or going for a quick 5 minute walk in the fresh air will help (or maybe it’s just the action it’s self takes my mind of it somewhat). This is so physically draining, my energy levels just hit the floor when this is happening (I also completely get the irritability comment made).

The brain fog, this is a nightmare. As I’m writing this forum and the words that would usually just flow my mind instantly while writing are to lost in my brain somewhere and I’m having to stop writing in order to compose myself and think of the next appropriate word (sometimes this’ll take 1-2 minutes). At work, I’m running errands to which 30mins later I can’t remember if I’ve actually done it (though I remember thinking about doing it but not actually having done it). Things in my memory just aren’t coming naturally to me at the moment, it’s like my auto-pilot in my sub conscience needs recalibrating. Perfect example is this; I’ve driven my same car for the last 5 years. I got in it the other day and had to physically look down at the gear stick to find reverse, my automatic subconscious had forgotten where to find it so I had to consciously look down at it.

I have to say, I have had two bouts of 4 days at a time where I’ve felt near enough normal but after which I can feel the illness coming back. It is like a horrible fog descends on my head and the misery-go-round starts all over again.

It’s a real nightmare this thing, especially when the paranoia says that I’ll never be normal again. All my enthusiasm for life is getting drained by it, a cruel illness I think everybody will agree.  

Anyway, this is a relief that I’m not the only one inflicted, it sounds a lot like it’ll be just a case of sit tight and hopefully this rollercoaster will let me off sooner rather than later.  

Hope everybody gets well soon