Im home from my VEEGG, and was told....

[momof3boys]

that the time i was there, the seizures that i had were not epileptic seizures.
My dr saw little spikes on the EEG indicating that the epilepsy is there, but there were no epilepsy seizures occuring.

I went monday with no medications, and no seizures.
Tuesday, no medications, and started having seizures at 2:30pm.
Those stopped tuesday night at 9pm, then I went with no seizures til the following morning, wednesday morning and into the afternoon with seizures. They they stopped wednesday night and early thursday morning, around 5am, I had another seizure. Thursday they put me back on Keppra XR, and Ive been on that since and havnt had a seizure again.

Im no longer on the Carbotral.

Today when my dr came in, he said that the reason he put me only on Keppra XR is because he can see the small spikes on the EEG saying I still have it, but im not showing it by having a seizure.

Now one thing Im wondering is that when a person is completely stopped on Keppra XR, going cold turkey, and going days without it, could having a different type of seizure you never have had before, be a withdrawl symptom?


I ask this because Ive never before had the seiuzres I had starting tuesday, into thursday, (yesterday) where I was consious through out the entire seizure.

All my seizures before, have been where I lost consiousness. So these seizures that were occuring, were really confusing everyone. The dr thinks thats its stress related and wants me to see a dr in a week from now because he thinks its in my "head".... or are brought on my stress related things.

But the thing Is, like I told him, Im under alot of stress all the time. If he thinks these seizures are due to stress, and not epilepsy, then why havnt I had these before now?

Ive never been taken off my medications "cold turkey" before either. I googled information and found people who were weaning off medications, had the numbness or tingly feelings, along with some jerking movments. All of which I am having now, and started having tuesday, about 36 hours after I had my last medication dosage.

I just dont know what to think....

 

[momof3boys]

Ive been home since Friday at around noon, and Ive had 6 seizures saturday between noon and 1:30pm. last night, at around 3am, I had one seizure while I was sleeping. Today I feel ok, just weak, and I get that "feeling" that comes and goes before a seizure is to take place.

We contacted my dr yesterday when I had the 6 seizures in the hour and a half time span, and he said told my mom that its just the non-epileptic seizures like I had in the hospital.

What I cant figure out is that Ive never had these prior to them taking me off my medications monday morning. I started having these about 40 hours after my last dose of medications.

 

[Nakamova]

I think your neurologist is awfully quick with the PNES diagnosis, especially given that your seizures responded to AEDs. He does know that certain kinds of seizures originate to deep in the brain to show up on the EEG, right? And that going cold turkey off of AEDs can cause epileptic seizures (even if you weren't having epileptic seizures beforehand).

Any chance you can get another opinion?

 

[momof3boys]

I think your neurologist is awfully quick with the PNES diagnosis, especially given that your seizures responded to AEDs. He does know that certain kinds of seizures originate to deep in the brain to show up on the EEG, right? And that going cold turkey off of AEDs can cause epileptic seizures (even if you weren't having epileptic seizures beforehand).

Any chance you can get another opinion?

Yeah, I cant figure it out. Ive never had a seizure like these before I was taken off my medications on monday. I went all day monday without any seizures, and then starting tuesday at around 2pm, I started having these seizures where I was consious through out the entire seizure. I would get that feeling like it was going to come on, then my whole body would stiffen and Id be jerking all over. I could hear what people were saying to me while this was all taking place. There were sometimes during the seizure that It would get so intense, that I wouldnt focus on what the nurses were saying, that id be so into trying to stop the jerking. They would last between 1 minute and 3 minutes. I had these happen since tuesday now. Everyday since then.

Im just so confused as to why Im having these non epileptic seizures when Ive never had them before in my life. All my other seizures have been epileptic seizures where I go unconsious and wake to alot of slobbers coming out of my mouth, feeling confused, and with a headache afterwords. But like my mom reminded me too, that whenever I would have a seizure, right afterwords, she would give me a adivan. Which of course would knock me right out.

Ive been googling and trying to find what could cause a non epileptic seizure(s) to occur after being taken off of AEDs.

If these seizures are "stress" related like what my dr thinks... and Ive outgrown the epilepsy, then why havnt I had these seizures before I was taken off my medications? I just cant figure it out.

I told my mom I really was thinking of calling up my neurologist I see here in town, I mostly go to him once a year to just get checked out. I really want to see what another dr would think of all of this. But I dont know how they would be able to figure it out, cause I dont have no EEG to show them my results.

 

[Nakamova]

I encourage you to call up your local neuro!