Cabinet of Curiosities

Johann Georg Hainz's Cabinet of Curiosities, circa 1666. Courtesy of Wikimedia Commons
Johann Georg Hainz’s Cabinet of Curiosities, circa 1666. Courtesy of Wikimedia Commons

Dear Internet,

This morning I met with my neurologist to confirm if my epilepsy has returned.

For this to make better sense, we need to go back to 1975 where Lisa, age 3, has a grand mal seizure. Over the course of the following decade, we would head to Detroit Children’s Hospital, where I was poked, prodded, and EEG’d to death to see what was the status of my brain. Drugs were taken, phenobarbital, mebaral, and lord knows what else. It is during this time it is discovered I’m allergic to the aforementioned drugs as well as penicillin.

Sometime in 1982 or 1983, the visits stop and I’m declared cured? Better? Healthy? Something? All I know is that at the age of 11 or 12, there are no more drugs or visits to Detroit’s Children’s Hospital.

In the later years, the stigma of being epileptic follows me like a lost dog. Some of my medical records have it listed and if it is missed in any kind of interview, it comes up with my drug allergies (“Why are you allergic to anti-seizure medications?” “I had seizures when I was a child.” “This could complicate things.).

It’s a shadowy grey area. Am I epileptic? Am I not? How much do I disclose when asked and do I make mention of this at all to anyone – employers, lovers, friends?

Over the years,  I disclosed on when necessary and when warranted.

I did not have any seizures, that I can recall, in the intervening years.. That changed a few years ago, long before I started any of my second round of bipolar drugs, I had two of what I termed as seizure within six months of each other. One when walking through a tunnel in a fun house that had the pulsating lights and the second when watching the Kanye West video for “All of the Light”1 .

This was in late 2011 and early 2012.

When I had the first ankle surgery in June 2012 and the follow up surgery in January 2013, the triggering EPILEPTIC on my medical history was potentially problematic with anesthesiologist.2 And it was because of this that I decided to finally make an appointment with neurologist this spring, but there was nothing available for nearly six months.

Which brings us to today. I was so nervous, I showed up 25 minutes early.

I walked Dr. T. through all of my issues, matters, and concerns. After the interview, Dr. T. then put me through a series of neurological tests, which some of them made me giggle. After the tests were done, Dr. T. explained that he believes I did have epilepsy when I was younger, for there is a type where it starts out in very youngs kids and as you age, it starts to dissipate. By the time you’re late teens / early 20s, the epilepsy is gone and typically never comes back. He thinks this is what I had.

But do I have epilepsy now? Unknown. What he does think is what I thought to be seizures were actually migraines triggered by stress or other factors. Since I did not smell anything or get auras or get a build up, then I never associated with what was going on in my brain, in addition to the brain freezes (tremors, sometimes loss of feeling, sense of deja vu). I never thought of them as being migraines. This was news to me. When I told Dr. T. I didn’t take drugs for my headaches, he seemed incredulous.

What’s next? EEG to confirm the epilepsy (or not). That will be good times!

The most interesting thing out of this whole experience today was the discovery that phenobarbital and mebaral cause bone density problems. I have bones like a 90 year old, and they are so fragile at my first ankle surgery in 1994, they were surprised I had not broken anything before that. So drugs make my bones brittle, I have a double fracture in my right ankle, which then sets in arthritis that is the worst my orthopedic surgeon has ever seen.

It’s all goddamned connected.

Dr. T. is also ordering a bone density test and then depending on the results, vitamin therapy will be applied.

Can I get a new brain please?

xoxo,
Lisa

This day in Lisa-Universe in:


1. The video was tagged by Epilepsy Action to potentially trigger seizures and I ignored the warning.
2. My neurologist says this is a teaching moment – anesthesia does not trigger seizures so riling me up before the surgery was unnecessary.

  • Kate

    If it helps, I get migraines from flashy lights too. Sometimes they are blackout-bad. I know the smart doctor types have been thinking that migraines and epilepsy are related, but I haven’t really delved into that theory too much.