I have the diagnosis of Psychogenic Non-Epileptic Seizure disorder, and I was playing my piano. They had stopped.
Then they came back. Increasingly longer, increasingly frequent, and increasingly violent. They were causing me asthma attacks, because the seizures would stop my breathing.
So we called the neurologist again.
“Are you sure it’s just PNES?” We asked.
This time it was an ambulatory EEG at home. I was free to go where I wanted, when I wanted, and do what I wanted. I liked it better, because it wasn’t in a controlled environment. They were really getting me.
It was unpredictable. One day I had three seizures. The next there were five of them. Some I could sense beforehand, others hit me out of the blue.
I had them on stairways, at the library, and awoke from a deep sleep because of them. The bruises tell the story of all the times I fell unaware of my surroundings.
I broke my glasses. I had to get a new pair.
The predicting was new. First, it was just colors when I could sense them. But now I get the aroma of burnt toast, and I know. I know I’m about to collapse into a convulsing fit. I don’t always get the smell though, sometimes they still just start and I have no say in it.
The glue was a pain in the butt, as it seems to be part of the routine when removing the electrodes. This time the products I used last time didn’t work. I soaked and soaked and soaked in oil, but the glue was stubborn. They clung to strands of my hair like stuck gum on a shoe.
We tried a different brand of bond remover product. It was more of a lotion. I slathered that all over my head like it was a mayonnaise home treatment.
Then strand by strand, I slowly combed out the pieces of glue. It hurt. It pulled. I lost some hair. But this time, I was a pro at it. It was nowhere near the disaster it had been before.
Now we wait. Again.