Videoed EEG in three days. input desired. How to manage stigma, how to broaden scope of evaluation.

Hi all,

- Hmm, details and background information- - wonder just how long they want this- hehe

Basically, I haven't been here for a long time because of my daily seizures- reeking havok with my life, compression of my brainstem causing more double vision and a broken computer.

But my question has to do with how to manage this upcoming videoed EEG.

I never had seizures until 2 months after my open heart surgery. Shouldn't that tell someone something? You'd think-

In 2006 I had a VEEG and they told me my seizures were psychogenic- sent me back to my psych who couldn't do anything to help. After 3 a day, with periods of being unable to call for help/ speak, or move/ even find my limbs- I went to the Chiari Institute. They were able to help me in 2007, mostly with cervical traction devices. (They aren't working any more) 

But now my seizures are worse and I'm scared to death I'm submitting myself for this testing just to be humiliated again. I've spent the last hour re-contacting my neurosurgeon and geneticist hoping they will contact the overseeing Neurologist to influence him to broaden his scope of evaluation-

(they never include the cranio-cervical junction- seizures arising from that region- or conditions like Dsyautonomia) I have Functional Cranial Settling and Instability, and Tethered Cord, Ehlers Danlos Syndrome and Dsyautonomia of some form- probably POTS.

My worst seizures occur in car rides- I was thinking of inviting someone to come shake my bed- - to stimulate the vibrations of a bad road- try to do some light jumping- (I can just barely do that for a minute) Or if I massage cysts and bumps on my head/ some on my chinbone ,eye socket bone, neck- -- or read or write maybe for too long-  but I think these are more partial seizures that come on instead of the real bad babies.

Hmmm. Request bright lights, noise and try to 'be active' on or beside my bed?

I'm afraid if they tell me the seizures are psychogenic again and send me home to suffer more- I'll lose it- (and I can lose it big time- with Dissociative Identity Disorder- believe me.) My psychologist put the altars I have that need to be Not included in a 'safe place' where they can't hear or see anything- I'm still afraid. It's not just one part but every part of me that wants to fLIP, rip wires from my head - escape the hospital- won't go into all the possibilities-

I've done all I can do, except gather more hard data on different kind of seizures. It seems to me all they consider is whether the things are epilieptic or not- but I've been told there are 23? segments of the brain- so there are fAr more than just 2 kinds of seizures. Why are they so short sighted?

And I've also read in numerous places, been told that the EEG is a very gross sort of test- why do they rely on it so heavily??

I've been told and I've seen my eyes dialate before and stay that way after a seizure- which indicates some mild, but nontheless- brain activity, does it not?

Where shall I put my rage if they pigeon hole me, keep me hooked up, humiliate and shun me? I've been through this just way too many times and I'm ready to give up on the whole medical quest.

Well, if you have any input, or whatever~ 

I'm not over the rainbow at the moment-

and just found out I can't get rides to my appointments anymore. have to have an attendant. - what am I? rich or something?

i give-