By Mara, Psychogenic movement disorders, Hungary, March 1, 2020
"Its all in your head." "Its only psychogenic." "Get over it, its just in your head."
Just some phrases I have to deal with nearly every day.
I'm 21 and I suffer from Psychogenic-Non-epileptic-seizure-disorder. This means that I have several times a day seizures which look like generalized tonic-clonic seizures but they are not caused by epilepsy. The EEG doesn't show any Spike-Slow-Waves or any other forms of dysrhytmia. It shows absolutely normal brain activity during my seizures.
PNES is a shitty diagnosis. You have the same symptoms as someone with epilepsy (with some different like my seizures last much longer than a typical epileptic seizure) but you don't have any kind of medication which helps limiting the seizures. PNES is treated with e.g. CBT but for me it doesn't work. I am in treatment for over 9 years and nothing has changed yet. I get between 3 and 20 seizures daily, which can last between 5 minutes and over 1 hour. I have convulsions on my whole body and lose counsciousness. I have been in several inpatient treatments, I have been more times in hospital, ERs and ambulances than anywhere else. Actually, nobody knows how to help me. Therapists and doctors are helpless nobody has any idea how to help me.
People around me don't understand this disease because its not epilepsy. Nobody has ever heard of PNES and everybody thinks that it can be treated easily because "its just psychogenic". But it can't at all. These are real seizures, with real convulsions and cramps, with real muscle pain and really high risk of injury with no way to limit them with some kind of medication.
So I can only hope that maybe some day therapy can help me in some way or there will be found a special treatment for PNES.