I also suffer from vestibular migraine (VM). I first had an attack when I was 18 and a fresher at university. This was in 1986 before this disorder had been recognised. Nobody knew what on earth was wrong with me and I was told it was stress. I was dizzy virtually 24/7 for a whole year with crushing headaches. I was nearly chucked out for failing my preliminary exams but then overnight my symptoms disappeared and I was fine for the rest of my degree course. They returned with a vengeance after graduation in 1988. I was so ill I had to give up a career as a graduate trainee in merchandising and live at home with my parents for 3 years. Brain scans were all clear and I was told it was all ‘in my head’. In 1991 an enlightened psychiatrist told me she could find no evidence of any psychiatric reason for my illness and she thought I had an unusual form of migraine. I was feeling somewhat better by then and went to UCL and trained to be Speech and Language Therapist as I couldn’t really get a job in any thing rise having not really worked since graduation. I was afflicted by attacks occasionally but gained a distinction in my Masters degree.
I worked as a clinician and married and had a family, but after giving birth to twins the attacks floored me again, triggered by the hormones of childbearing. I was often rendered incapable of looking after my daughters. My GP thought I was ‘anxious’. My protests that it was migraines fell on deaf ears. I would lie in bed too dizzy to eat or move for weeks on end. My marriage completely broke down and I lost custody of my daughters because I was deemed unable to look after them due to mental instability.
Since then I have had long periods of being well but also long periods of sick leave and am currently having a severe relapse due to the hormonal triggers of the peri menopause. I am gaining some relief from the medications topiramate and pregabalin but am still fairly housebound at present.
This disease is horrific and ruins the lives of sufferers and their families and I thank you for publishing Lydia’s story.
I eventually got a definitive diagnosis of Migraine Associated Vertigo or, as it is now called, Vestibular Migraine, at the Balance Clinic at UCLH by Dr Doris Bamiou, neuro-otologist. She said I was a’ textbook case’. Since then I have been treated by Dr S. Surenthiran, neuro-otologist at The Balance Clinic at The Medway Maritime Hospital, Gilingham, Kent, one of the few experts in this disease.