At school in England I was never any good at sports because I would get out of breath very easily and my legs would become “rubbery.” Also, I would often get dizzy and fall over. I had to stop taking rides at the fun fair because I would become dizzy and throw up. Consequently I didn't have many friends at school.
As a teenager, when I took the train I would become dizzy and sometimes throw up in front of people. I started carrying a bag with me, but I was scared of what people would think if I threw up. Nevertheless, I did it for a couple of years, putting it down to motion sickness.
I also remember several times where I became very hot, felt unwell and had to either walk very carefully or sit down. These episodes never lasted very long and after a short rest I would feel better. I'm sure there were many other events that I can't remember.
Because of the problems I was experiencing, I was admitted to hospital twice for observation, once having a lumbar puncture, but they found nothing physically wrong and put it down to “nerves.”
Since coming to Canada these episodes have been less frequent. Between 2000 and 2013 I had several instances where I lost control of my arms, became dizzy, lost my balance and had slurred speech. I had many tests performed on me and it was generally thought that I was having a transient ischemic attack (TIA) each time.
In 2013 my neurologist suggested I may have “cerebellar ataxia” and that there's no cure. I went on the Internet searching for medical sites, case histories and more information. I believed I had Episodic Ataxia Type 2 (EA-2) from what I read. I then found that the only neurologist in BC that has knowledge of EA-2 works at UBC. So I asked my current neurologist to give me a referral, which he did. I have seen her four times to date. She thought I had a different type of ataxia based on the onset of my symptoms, but genetic testing proved that I do have EA-2.
I am currently taking acetazolamide which has really helped with the episodic part of EA-2. However, my condition still affects my balance so I have to watch where I put my feet. Even something as simple as uneven pavement can cause me to lose my footing.
Here is a recent example of what life is like with EA-2. I was walking on the sidewalk past the entrance to a parking lot. I noticed that a car was waiting to leave the parking lot. It seemed to be waiting for me, but, when I was directly in front of the vehicle, it started moving and I could see the elderly driver looking to the left at on-coming traffic and not at me. I hit the hood with my hand and shouted, jumped sideways and lost my balance. I also lost control of my arms and legs (ataxia) and hit the road hard. Fortunately, the car didn't hit me. - David J. Smith, Vancouver, BC