'My vision seemed to disconnect from my body - as though they were working separately"- Carmel O'toole

 

 

BDA spoke to another balance disorder sufferer, Carmel O'toole, a 51 year old Senior Lecturer at Sheffield Hallam University and this is what she had to say;

 

 

 When I first experienced any symptoms;

 

I was on a Mediterranean cruise four years ago in Marseille, walking up a steep hill to the Cathedral de Notre Dame and noticed I was feeling as though I was going to fall off the edge of the hill from dizziness. I was feeling like the ground was moving below me. It was very frightening at the time as it was a sheer drop over the mountains into the sea.

 

 

The symptoms I experienced;

 

 My vision seemed to disconnect from my body - as though they were working separately and I was vaguely dizzy the whole time and you literally cannot think straight. It affects your cognitive ability, which for a lecturer is not easy to manage.

 

Balance disorder I was diagnosed with;

 

Labrynthitis - which is a vague diagnosis that can cover a broad spectrum of symptoms. At one point I was also told I might have Menieres Disease which is more serious.

 

 

Misunderstood by GPs;

 

I sought GP advice and was prescribed anti psychotic drugs at first which were awful - worse than the symptoms I display so I refused to take them - after that I sought alternative therapy from a vestibular therapy specialist in Aberdeen, Scotland who tailored a series of rehabilitative exercises to retrain my brain and eyesight back to some kind of normal.

 

 

Emotional, psychological and physical effects;

 

 It can be quite depressing as you don't know when things are going to get better. You just have to stay positive and try to find expert advice which is short on the ground. I was told not to drive by my GP and it affected my cognitive ability to retain and pass on information.

 

 

Living with a balance disorder;

 

It is frustrating and perplexing because generally so little is know about it by the medical establishment. It is not life threatening so the big drugs companies are not interested in investing in research into treatment. You are just advised to allow the condition to settle which in my case took 7 months. Every now and then when I'm tired or working too hard it comes back in a minor way but I have strategies around exercise which I use to get back into balance. I don't think it ever goes permanently but you learn to adjust and to learn ways which help you cope. My family had to be patient and supportive. They were really good at listening and trying to understand.

 

 

Advice to someone who has just been diagnosed with a balance disorder;

 

Try to get expert advice asap - GPs don't tend to know much at all - you need expert advice from the start.

 

 

Doctors to recommend;

 

 Alan Seeley at his Vestibular Disorder Clinic in Aberdeen