I don’t want to bore anyone with my medical details and, frankly, think the details are meant to be discussed with only my doctors and the closest people in my life. However, if you read this rambling blog, you will encounter some advocacy posts about my various causes and interests.
Aura: Vertiginous Epilepsy
I ride a trike because I can’t ride a bike safely and shouldn’t drive a car. I have epilepsy. It is as simple and complicated as that. Saying I have epilepsy is about as specific as someone saying they have a virus: there are lots of different kinds. My kind relates to pretty specific seizures, yet they are hard to nail down.
My first known seizures occurred in 1999 and for years they were only witnessed by an abusive partner. He didn’t report the details observed thus an incorrect diagnosis of “vasovagal syncope” kept me from proper medical care until much more recently. (I’ll save my domestic violence soapbox for another day.)
A seizure (please don’t refer to seizures as “spells”) may or may not begin with a short warning called an “aura”. Some people hear things or see lights as an aura, I have a few seconds of spinning known as a vertiginous seizure. It is kind of like vertigo, except the direction of movement is very specific and always the same. It is not super common to have vertiginous seizures, but they often accompany temporal lobe partial seizures as an aura. That’s fits with my experience: I mostly have partial seizures that begin in the temporal lobe and sometimes generalize. I don’t always lose consciousness and I almost never shake, bite my tongue, or foam at the mouth.
The times that the seizures generalize (spread to the entire brain and knock me out), I end up with a migraine and severe fatigue after I wake up. Usually I don’t want to leave my bed for 12-24 hours, but even after that I’d not be safe to drive for a while. This only happens a few times a month and hopefully less given the right combination of drugs (AKA anti-epileptic drugs or AEDs).
Unfortunately, the spinning sensation is not limited to aura. On days when I am very tired or have a lot of stress, I will have “dizzy” moments several times during the day. So far, I have not tried to differentiate between the vertiginous aura and daytime vertigo… it feels almost the same to me. I once tracked the daytime dizzy moments for a week and had 11 in one day but 1-3 other days. It is hard to say if these are epileptic. While stress and fatigue are known to lower seizure thresholds so it make sense that these breakthroughs would happen, I believe they have more to do with moving my head position. My hearing isn’t great and that predisposes me to regular vertigo. On a bike, even regular vertigo will leave me in the ditch or, worse, pitch me into an oncoming car up to 11 times per day. On Nellie, I can close my eyes and hang on during dizzy moments without overturning.
But I know you and you haven’t had trouble driving before except a few days per month. What gives? Over the past several months I have been struggling with wicked insomnia. This is on a different level than a handful of sleepless nights. I average about 15 total hours of sleep every 5 days. (You may notice that I blog and then edit posts over about the same period. Brains need sleep to do things like read and write.) I have tried just about everything, but nothing seems to make it go away. When I haven’t slept for 3 or 4 days, my reaction time, memory, cognitive function and general coordination is off. Some studies suggest that driving with severe sleep deprivation is similar to driving while intoxicated (I can’t drink caffeine or alcohol due to medication, by the way). Mix in the fact that fatigue increases the frequency of dizzy moments and suddenly I am walking because I can’t even ride a bike!
The Walk Score for my current house is 4 (AKA lousy) which is why I am selling my house. I hope to find somewhere affordable to live with a Walk Score over 50. Do you know your Walk Score? Check it out!
I am not asking for donations and links are not meant to solicit donations.
I don’t know the artist for the etsy link from the photograph above. I like having a pretty medical alert bracelet instead of the standard kind. I thought someone might like this one.