Martyn Hurt here – you may remember me from my previous blogs!
Before being diagnosed, I had never heard of ataxia at all, never mind different types. I knew my dad had dizzy spells, but not much more than that. I didn’t see him from the age of 2 until 14, and then infrequently after that until his death. As far as I know, he was only ever diagnosed as having basilar migraines.
Dizzy spells and periods of feeling unsteady always affected me from a young age, but they were irregular and always attributed to other things, such as the side effects of asthma inhalers. It wasn’t until 1999, when we were watching The Matrix at the movies, that things changed.
I remember seeing the adverts and the start of the film, the next thing I remember is being in an ambulance. My wife helped me out of the screen after I confessed that I was feeling really ill, and I collapsed in the foyer.
At the hospital, I was told I had an enlarged heart and discharged after a night and they arranged for me to see a cardiologist (who then said nothing was wrong with my heart). A few weeks later, I started having seizures and was diagnosed with epilepsy (I’ve been seizure-free for 17 years now), and the unsteadiness, light-headedness and dizzy spells started occurring regularly. My sister has epilepsy, and our youngest son had epilepsy from around six months old until he was 16.
Originally, the spells lasted a few hours and were infrequent, but the frequency, length and severity soon started to increase.
I went through dozens of diagnoses. From basilar migraines to labyrinthitis, Meniere’s, to panic attacks and psychosomatic illnesses. I was given dozens of different medications, none of which helped the symptoms and often made them worse or had severe side effects.
I was having seizures, loss of balance, extreme migraines, itching all over as if I was covered in ants, loss of energy and fatigue, extreme vertigo, mood swings and blurred and double vision and more.
Eventually, in 2009, my GP referred me to the National Hospital for Neurology and Neurosurgery in London. On my first visit, after some very thorough questions and tests, I was diagnosed with episodic ataxia type two (EA2). Dr Parton was fantastic, going through all the information in a way that I understood.
I was relieved. Having a clear understanding of what I had made a huge difference and proved I wasn’t imagining things. To anyone newly diagnosed, I would say stay positive, as it can make a huge difference in your mental health.