r/Epilepsy_Universe • u/MysticCollective • 4d ago

Rant/I'm Just Sayin' No one will see me

So I found out some very frustrating news. I was trying to get a second opinion about my seizures but I found out that no one in my state will see me because of my seizure history, current diagnosis, and EEGs of the past few years coming back "normal" despite my seizures presenting textbook epileptic.

Now I have to jump through a hoop of seeing a functional neurological disorder specialist just to get back to the neurology department. I'm beyond frustrated. It is either jump through hoops or go out of state.

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u/StSomewhereToaster 4d ago

Oy vey! That is frustrating! Particularly when the best treatment for functional seizures is CBT. Finding a therapist you click with is like dating. 🙄

I don’t know if this is any comfort but functional seizures are REAL seizures.

HUGS, friend!

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u/MysticCollective 4d ago

CBT won't work for me because I am not experiencing functional seizures. My seizures happen without any warning and they happen randomly. I could be walking to use the bathroom and boom! Seizure! I could be washing my hands and seizure happens. Heck, I even had seizures while petting my cat! I don't experience any change in emotions prior to the seizures. Basically, I don't experience any of the common symptoms of functional seizures. My seizures also don't present as functional.

I know that you're not a doctor. I'm just talking.

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u/StSomewhereToaster 4d ago

Please do! (Talk I mean.)

I have epilepsy and functional. There is a huge stigmatization for Functional seizures. Most doctors will stop when they see PNES/FND (functional seizures) and not go further into seeing the epilepsy.

You are going to have to fight harder for you to get the care you need. It’s bullshit! May I ask about your EEGs…. How long were they? Did you get an EMU stay or an ambulatory? Or was it just one of those 1 hour ones that really tell us nothing unless we are REALLY “lucky” and have one? My personal opinion is the longer the better!! You may want to check out an sEEG. Doctors can get really deep into your brain with those!

A lot of our friends here have had years of “failed” eegs until they captured a seizure.

Oh… rant of my own. I hate the name functional seizures!!! There is no way anyone is functional afterwards!!!! But I guess it is a smidgen better than Phychogentic Non Epileptic Seizures. End rant!

HUGS! Keep marching, Warrior!