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Balance & Dizziness Canada

Balance & Dizziness Canada

Supporting, inspiring and educating those affected by balance and dizziness disorders

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NAVIGATION
  • Balance System
  • Symptoms
  • Disorders
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    • Vestibular Disorders
      • Close
        • Acoustic Neuroma
        • Age-related Dizziness and Imbalance
        • Autoimmune Inner Ear Disease (AIED)
        • Benign Paroxysmal Positional Vertigo (BPPV)
        • Bilateral Vestibulopathy
        • CANVAS Syndrome
        • Cervicogenic Dizziness
        • Childhood Dizziness and Imbalance
        • Cholesteatoma
        • Dizziness & Imbalance after mTBI
        • Enlarged Vestibular Aqueduct
        • Isolated Otolith Disorder
        • Labyrinthine Infarction
        • Labyrinthitis
        • Mal de Débarquement Syndrome (MdDS)
        • Ménière’s Disease
        • Motion and Cyber Sickness
        • Otosclerosis
        • Perilymph Fistula
        • Persistent Postural-Perceptual Dizziness (PPPD)
        • Ramsay Hunt Syndrome
        • Secondary Endolymphatic Hydrops
        • Semicircular Canal Dehiscence
        • Vestibular Migraine
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        • Vestibular Paroxysmia
        • Vestibular Toxicity
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You are here: Home / Educational / Living Life with Episodic Ataxia Type 2 (EA-2)

Living Life with Episodic Ataxia Type 2 (EA-2)

October 11, 2018

episodic-ataxia-type-2

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

Filed Under: Educational, Stories

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