Things I learned more about last week


  • Auras
  • Deja Vu
  • Hallucination Smells
  • Unprovoked Fear

All of which I’ve had before, but was unable to really understand at the time. These are all symptoms of Temporal Lobe Seizures… which I was having several of last week before truly realizing it.

My disease, primary angiitis of the central nervous system, damaged my temporal lobe which will make these seizures more likely to happen. We (Nicki and I) knew that but it’s stressful to not know if my temporal lobe seizures are being caused by previous damage, or a PACNS flare up.

After an MRI we were able to see that there’s no new damage to my brain and there is no inflammation in my brain — that ruled out a flare up of PACNS and that’s great news!

That’s when I learned more about breakthrough seizures, seizures that happen even though you’re on anticonvulsants (medicines that help prevent seizures). So “we” (not really me at all) adjusted the medicine I’m on and I’m doing much better.

It’s really comforting to know that this wasn’t a PACNS flare up. And, in a strange way, nice to have experienced the breakthrough seizures. Now I understand the symptoms more and have a better understanding of what is going on and what to do when these symptoms occur.

Education is great, sadly learning isn’t always enjoyable.