PNES: My Blackhole Journey to Treatment
“My life is just like dominos”
For the last month (almost two months), I’ve been having these “seizure like” episodes. I couldn’t tell you how many night I spent going to the ER. Every single time we would go, they would give us a different answer.
I finally got my neurology appointment boosted (yay!) , to see what was going on. He suggested I get an EEG (which I already had one and it came out negative, but ok boomer), and if the results are normal, I would have PNES. Well, here I am. Writing about my diagnosis with PNES. But this is only the beginning of a dark road.
My neurologist said that there was no medicine he himself could put me on, and that my psychiatrist would have to go to the underlying cause of them. However, once I went to my psychiatrist, she also said there was nothing she could do, because to her they look more than “psychogenic”. Ok great, this again.
My seizures come and go, but when they come, they happen unexpectedly, and I always wake up confused. It saddens me that there is no treatment for this, I just have to deal with it.
The psychiatrist did say to get a second opinion from another neurologist, so that will be my next step. In the meantime, I hope you’re doing well. XO
Gentle Hugs,
Alyssa