Sue (age 60) Labyrinthitus, 2014, E. Sussex

In January 2014 I was heading for a shopping trip with my daughter in her car. It was a normal day and we were chatting away. However, in a second things became very different. Completely out of the blue I became dizzy. This is a bit of an understatement because it was more like being on a fairground ride where I didn’t know where I was – the right way up or upside down. I was spinning at 100 miles an hour. I thought I was dying or having a stroke at least. I remember saying to my daughter ‘help me’ and she asked me what on earth was wrong. I was then violently sick in her car. I couldn’t get out or even open the window because my body just didn’t seem to know what to do! This was alarming to her and me and she wanted to rush me to the nearest hospital. My home was about the same distance and I begged her to take me home. I was too ill and scared to face sitting in A & E. My husband was at home, luckily, and he more or less carried me indoors, where I continued to be sick. I couldn’t walk, crawl or anything. I have never been so scared in my life.

My husband somehow got me upstairs and into bed and called a doctor. The doctor gave me an anti-sickness injection which I think helped, but I couldn’t stop the constant spinning, whether I sat up, lay down, eyes open or shut. I was prescribed Buccastem M tablets which didn’t seem to make much difference. The doctor told me to get a good sleep and that I would be better in the morning. I wish!!

I remained in bed, still spinning continually for over a week. I had to be helped to the toilet and couldn’t do anything for myself. We called out another doctor who said it was nothing worse than labyrinthitis (though at the time I could think of nothing worse) and prescribed Prochlorprrazine, which again had little effect. I also experienced some deafness and noises in one of my ears, headaches and general lack of concentration and a feeling of heaviness in my head, as though there was something sinister going on. I honestly thought I had a brain tumour. I was gradually able to get up but couldn’t do much due to the brain fog and dizziness. I walked slowly and held onto walls or furniture.

When I was well enough I was taken to the doctors. I had to be helped into the building and was all over the place. I got disapproving glances as I am sure people thought I was drunk. My own doctor was very sympathetic and arranged an ENT appointment and an MRI scan.

These appointment arrived fairly quickly and again I had to be taken along as i couldn’t drive or use public transport. At ENT I was given exercises to do, which I did religiously. I also followed exercises on YouTube and they definitely helped. I visited a chiropractor and unfortunately it was a waste of time and money in my experience but I was desperate enough to try anything.

My MRI scan was approx six weeks after my symptoms appeared. I was dreading it due to claustrophobia but actually it was fine and it actually relaxed me if anything. The results came through showing that nothing was unusual for my age, what a huge relief as I was still convinced I was dying!

I returned to work reduced hours after two months. Colleagues would drive me and I still had to hold on wherever I walked. I couldn’t turn my head and my neck was stiff and painful. I was not well enough by far to be there but I was a project manager and if I wasn’t there then the job wouldn’t get done. I was useless. I couldn’t concentrate and the brain fog was hideous. I was so tired too. I used to go home and sleep.

I think it was about nine months before things gradually improved enough for me to cope a bit better. I went on holiday and was scared the flight would bring it all back. But it didn’t. At Gatwick, the noise, lights and movements freaked me out but I was determined to get on that plane. The holiday wasn’t as active as it would usually be, and I didn’t drink and had early nights. Looking back, my husband was so patient and a massive support to me. Some friends and family stayed away because I don’t think they knew how to deal with the new, boring me! Some also feared it was catching.

Now, nearly eighteen months on, I have taken voluntary redundancy from work, partly due to restructures at work but mostly for my well being. Anything that reduces stress seems to help.

I am fairly active. I have tried the gym and aerobics classes but still spin when I lie down or get up so that wasn’t too successful. I walk with a friend, about seven miles once a week along the seafront, and have the occasional wobble, where I bump into her!!

I know my limitations. Alcohol makes me worse. Even a glass of wine or two leaves my head very foggy, supermarkets are a necessary evil and if I have a cold or virus I feel more off balance. Other than that, I’m getting there, though don’t feel as though it will ever go away completely. We are all different, so please, anyone reading this, don’t feel disillusioned.

My dad had a neurological illness in later years, cerebellum degeneration, which I have been assured isn’t what I’ve got.

I can live with the occasional wobble, spinning and headaches but never, ever want Labyrinthitis to strike again. My problem is, I have always been young and active for my age and want to live life to the full, kick a football with my grandsons etc. The older one understands that I can’t go for a bike ride with him, for example, but I can do most things and I’m lucky.

Good luck to fellow sufferers.

Sue Stevens