Seizure Diaries: Minimalism

It has taken me a long time to respond with the latest for the diary, because the last few months have had their ups and downs! Since my last doctor’s visit (July 6, 2017), I have had fifty-seven (57) seizures all together. I saw her again yesterday, August 17th.

I keep daily records of my condition: over the last six weeks, nine (9) seizures were Petite Mals (Complex Partials) and nine (9) were Grand Mals (Tonic Clonic). The rest (39) were Petite Focals, which are just known as Focals. A Focal is a seizure that lasts between 10 – 20 seconds. I can hear noises and voices, but I am unable to respond to anyone for a short period of time.

Several weeks ago, I had such a severe Tonic Clonic that I stopped breathing. This seizure scared my wife, Steph, nearly to death. She was about to call 9-1-1! With the help of Ian, my son, they got me breathing again. I made a particular note on this severe seizure and brought it to the attention of my doctors.

My neurologist and the Neuropace representative are trying to reduce the number of Grand Mals and Petite Mals to a minimum. Their current strategy is to slowly increase amperage of the implant. They have just increased the amps of my Neuropace from 4 to 4.5 amps.

The medical professionals are grateful that I take the time each and every day to keep records and to scan myself. With those scanned images, they can gather all the information about my brain activity.

What the scans showed was how my seizures were occurring within the brain and it was not just happening one side. Both sides were effected at the same time. It is amazing to get a computer’s view of one!

Not that I am surprised at this point, but they do see me as a unique case. The Neuropace team is constantly looking for ways of get the seizures to a minimum. It would be ideal to stop them all together, but for now we are trying to get the number down, little by little.

That’s the latest. It’s all I can think of for now!