Does anyone else feel like no one KNOWS anything (about PNES)?
I originally posted this on reddit but am also posting here.
I hate PNES so bad. No one says the same information about it and everything people say seems contradictory to other research and/or my personal experience.
âYou get PNES from PTSD.â But my PTSD was CURED for two years prior to developing PNES.
PNES is called psychogenic, but itâs the only symptom under Functional NEUROLOGICAL Disorder that is called psychogenic.
âPNES can be cured through therapy!â My PNES started after five years of therapy, three different therapists, and many different types of therapy, including talk therapy, CBT, DBT, EMDR, and ART.
âOnce you get diagnosed with PNES the seizures should decrease/go away!â But my seizures didnât change once I received a diagnosis.
âYou shouldnât take medication for PNES because it wonât be affective (for long).â But medication is the only thing that stops my seizure clusters that can last for five hours straight.
âPNES are caused by stress!â But they also happen randomly, and while Iâm relaxed, and while Iâm happy. And itâs not just emotional stress either, any physical stress can also trigger seizures, so working out, being too warm, being too cold, or being in pain are all triggers too.
This stupid disorder has taken so much from me, my ability to drive, swim, bathe. Itâs dangerous for me to be alone. Itâs SCARY for me to be alone.
General care directs me to neurology, neurology directs me to psychology, psychology directs me to psychiatry, psychiatry directs me to neurology.
Will I ever get better? If my PNES are not tied to PTSD is there even hope? When PNES is tied to TBI, or autism, or EDS, or POTS, or some other incurable condition, can the PNES be cured? Do I have to live like this forever? With no one knowing anything?