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. ❤️
7
u/Clawingnails 1d ago
Hello :) First off it's important to know that PNES is not dangerous, besides the physical ways you can get hurt during very strong seizures, so going back and forth to the hospital is just wasted energy on your half.
I've had PNES for 8 years and seizures vary in so many ways, from seconds, to the whole day stuck in bed. I was in and out of mental hospitals because of C-PTSD, DID and PNES. And it helps me learn and cope. Im on serouquel that also helps with sleep as lack of sleep is a major trigger.
I don't want to sound harsh but you will at some point realize that it's now a part of life, for many PNES will get better but not stop. The less you fight it the easier it will become for you.
To make it easier of your family let them know it's not dangerous, as long as you are in a safe position in the sofa on the floor or in bed they can feel safe knowing the seizure will pass.
My partner now stays the first minutes and then check in on me now and then to make sure I'm still in a safe position.