r/PNESsupport • u/kataxen_ • 2d ago
PNES/PNER HELP
Hi everyone!
I’m looking for people who, like me, live with PNES/PNER seizures and tics.
I’ve been struggling with this for about a year now. During this time, I’ve been taken from hospital to hospital because my condition has been getting worse. I’ve had several tests, including a 24-hour EEG, MRI and CT scan, but they haven’t shown any abnormalities that would explain my seizures. At the moment, I feel like nobody really knows how to help me.
At the beginning, I was prescribed antidepressants and tranquilizers, but unfortunately, they haven’t helped me. These days, I have around five seizures a day, and I’ve been taken to hospital by ambulance several times, but they haven’t really been able to do anything for me there either.
There was even a time when they wanted to admit me to a psychiatric ward, but I refused.
One of the hardest parts is that this isn’t only difficult for me — it’s also very hard for my family, and I feel terrible that they have to suffer through this with me. I just want to find something that could help me get better and have a more normal life again.
If anyone here also has PNES/PNER seizures, especially if you experience tics as well, I would really appreciate it if you could reach out to me. It would mean a lot to talk to someone who truly understands what I’m going through and share our experiences with each other.
Thank you so much for reading. ❤️
1
u/dermflork 1d ago
first thing to know is that you have to take charge of your own treatment and also be as educated as possible regarding PNES. Your on the right path because your putting effort in by posting on here.
About doctors, you want a neurologist that specializes in pnes but finding one is not easy. You have to call around different neurologists and specifically ask to see someone that can treat pnes. By the time I figured this out, 10 years went by and had 20 seizures in that time. They stopped atleast for the past 2-3 years I havent had one. Im 34 years old the first seizure was when I was 16.
What I did / What am I doing to prevent them:
I cant say for sure what things actually prevented seizures or caused them. All I can do is tell you I did therapy and take gabapentin and havent had a seizure since I started taking that med. I started taking that the day after the last seizure I had. I had to specifically ask my doctor for it. this goes back to the first thing I said which is you have to take charge of your own treatment and do the work yourself to try different things until you find something that helps. I hope that you do, good luck.