Neuropathic Pain

I have had epilepsy since 3 mos. of age.  I was told in 2005 by a neuro specialist after some intense testings for 4 days, that my eeg showed no signs of epileptic seizure activity. He said i have pseudoseizures and explained his reasoning. I told him to please explain my past epileptic history before him.
He recc. to my local neurologist to slowly wean me off my meds at the time.  That was June, by Xmas, I had a multi hr. gran mal sz that ended me in the icu and on a vent 3xs.  I am now, trying how to manage this neuropathic pain I was told was because of this.

All for right now, I am trying still to find some avenues to take.  There is much more to this, but, I was wondering if The Cleveland Clinic has any specialists in this field of non-epileptic seizures or suggestions for me.  Any help would be more than I have received to this point.

The pain after a NES is excruciating.

Thank you.

[Abhijeet Deshmukh, MD]

Hello.

Why would you say that you have non-epileptic seizures? Absence of abnormality on EEG does not rule out a seizure.

Did you have an EEG "during" the seizure? And can please mention where you have the pain?

A true seizure leaves you tired, with muscle aches, temporary memory loss and confusion. A pseudo seizure does not have these effects. Also, the plantar reflex is positive after a true seizure.

Regards

[elnelson]

I was told by the specialist in Phila., PA, that since my Video/Audio EEG monitoring showed no true "epileptic activity" on the monitoring, that it had to be NES.  I hv pain & discomfort originally on left side head down to toes.

I feel likr my body joints are rubber like and very flexible after a seizure with all of the activity that had taken place.  I have numbness and tingling regularly.

I want to thank you for your input.

Could all this be a "stress" type after effect with all my body has experienced?

[Abhijeet Deshmukh, MD]

Hello.

If the EEG is normal 'during' an episode, it is pretty much against a seizure. I don't know your types of seizures in the past, but when you had the grand mal episode, you probably did not hurt or injure yourself. Did you have any tongue bite or fall down ever before?

Non epileptic seizures are also classified as pseudo-seizures or conversion disorder. These have a different basis. What I am concerned about is your history since 3 months of age. Did you receive any anti-epileptics in childhood?

Regards

[elnelson]

I have bit down on my tongue in the past. I have been on AED's since diagnosis was made.  Yes, the "specialist" did say they were called pseudo sz's. And that they would only occur if there was any trama in my life up to that point.

I said yes, there was alot of "trauma" that had occurred in my life since childhood.  He asked I told him about it. He said thats it! You are not an epileptic, never have been, and don't even consider being one.

He was n concerned anymore about the "event(s)" and discharged me. told me to seek therapy, get rid of my sz dog because i use him as a crutch.  I asked how could i not be both, because of my occipital lobectomy, and vns implant. he did not have an answr.


thank you again for your support.  I will be getting in touch by phone with the Cleve. Clinic to discuss my situation further.

Eric

[raymae]

hi there, have you ever had a sleep eeg? my son is 15 now and has had seizures since he was 5 months old, he has just been diagnosed has having dravets syndrome, but could of been diagnosed years ago if they didnt presume just because he had a normal eeg (except for a sleep one that had slight activity) that he would not warrent having a genetic test done to see if he tested positive for dravets)  dravets syndrome is very rare and a very complicated form of epilepsy and im pretty sure you have not got that, but my point is a normal eeg does not and deffinitly should not rule out epilepsy in any form. best of luck to you and i hope you get sorted out soon.