This is a pretty good overview of current research and treatment of epilepsy. Epilepsy is such a complex and idiosyncratic condition that any overview will be thin, but this article covers a lot – advances in diagnosis, medication, surgery, lots of personal anecdotes.
I was diagnosed with epilepsy in 1977, at age 25. I don’t have grand mal – blackout – seizures, but lose my speech and control of my limbs in a bad one. My seizures were pretty out of control from 1997-2003, until we found the right combination of anti-seizure meds.
I’ve spent weeks hooked up to EEGs and I’ve tried most of the meds listed in the article.
I haven’t had a big seizure in over 2 years but I live with brain damage caused by seizures during my 6 hellish years. I feel constant neuropathic pain and lost some cognitive skills: complexity, which I used to revel in, is now kryptonite to me. Having an intense brainstorming conversation, which I love to do, lights up my symptoms like a pinball machine.
Seizure medications have improved immensely in the last 30 years. My first longterm med was Phenobarbitol – it felt like living inside a baggy, muffling the world. My current meds, Keppra and Lamictal, are pretty gentle.
Six years ago when I was looking for a dog I saw an online post about an abandoned epileptic Husky. I drove over 1,000 miles to Saskatoon, Canada to adopt her. Mika’s seizures are spectacular but she hasn’t had one in years because I give her 4 pills of Phenobarbitol every day.
Back to rewriting Hel’s Bet, which I hope inspires people to figure out how brains work.
My web browser’s home page is a wiki page that I call Doug Goals. Today it reads:
- Current Challenges
- –Transcribe voice notes daily
- –Stop obsessive thinking
- –Implement Sunset healing practice
- Enjoy life
- Be Productive
- –Follow daily schedule
- –Write Hel’s Bet
- —-Current Tasks:
- ——Rewrite Dulles chapters
- Work with Brook as coach
- Be more social
- –Call friends regularly
- –Get active in facebook
- Be Healthy
- –Pursue new diagnosis and treatments
- –Work w Dr. Brendel on pain
- —-Use texture stim daily and when feeling bad pain
Wringing art and a pleasurable life out of my scrozzled brain is a daily trial. I’ve had a bad couple days so I knew I had to change my daily goals. I added the Current Challenges item at the top and listed some of the things I’m wrestling with.
Over the weekend I transcribed 168 voice notes, mostly for Hel’s Bet. I always carry my trusty little voice recorder and make notes throughout the day on current projects, wacky ideas, the deepest of insights, and random stuff.
Sorting and transcribing voice notes is one of those listing/complexity tasks that my brain loathes. I put off dealing with the notes until I’ve got a huge pile and then I bite the bullet and dedicate a couple of days to the unpleasant task. Two months ago I’d let over 400 notes accumulate.
When I finish a transcription marathon my brain is always spitting sparks and trailing whisps of smoke – I’m painfully fried and good for nothing until I’ve rested for a day or two. Yesterday was a voice note transcription hangover day. Spending yesterday afternoon in a dentist’s chair getting prepped for a crown was about all I was good for.
I decided to start each work day by dealing with ALL pending voice notes. First thing this morning I easily dealt with the 10 notes from yesterday.
My 2nd Challenge is to stop obsessive thinking. I’ve had a rough year and sometimes my mind gets into a destructive loop. I waste energy and feel even worse. This will be a continuing challenge. I went on a walk today to try to break out of a bad spiral but that was only partly successful.
My 3rd Current Challenge is to implement regular daily anti-pain neuroplastic exercises – trying to overlay my neuropathic pain with pleasant sensations. A couple times a day I’ve been taking 10-20 minutes to chill and pet my dogs, concentrating on the pleasurable tactile sensation of their fur (the dogs love it!) Yesterday I was doing some “heavy petting” at sunset and discovered that the multi-sensory pleasure was a plus.
So I am scheduling a daily Sunset Healing session. I’ll cue up a CD of melt-your-mind Breton harp music (Gwenael Kerleo), grab my balsam-needle-filled smelling pillow, and sit with my dogs and stroke their fur while I watch the sun set over Martel Lake:
An orgy of Tactile, Olfactory, Visual, and Audible pleasure. Maybe I should eat chocolate, too.