Update on VEEG

[momof3boys]

Well, 40 hours after stopping taking my medications, I had a seizure....

only this time, i had the same aura before, but I was consious through out the seizure. which in the past Ive never had that happen before. Ive always been unconsious. It lasted for a minute, and I could remember pretty much everything.

The nurse told the dr, and he came by about an hour after it took place and said it didnt register on the EEG. He thinks what happened is I had a aura and that didnt go all the way into a seizure. It was the same aura I always get, but like with a seizure, I also had the jerking on my right side, only I could tell what was going on during all that taking place.

It felt so weird. My hands and feet were alitle numb afterwords which then slowly went away. So, we sit and wait for more to come.

 

[Nakamova]

Well, that's a start. I feel weird rooting for someone to have a seizure, but...I'm rooting for you to have a seizure, one big enough to register on the vEEG.

 

[Endless]

I'm rooting for the seizure, too.

Go seizure go! GO SEIZURE GO! Goooooooooooooo SEIZURES!

:dancing2:


Yep, that feels weird.

 

[momof3boys]

Well, its now 11pm, my first seizure was at 2:30, and since then Ive had 6 seizures. The first two were not able to register on the EEG. But the last four, they said could have been strong enough to get something registered.

We wont know about anything on that til tomorrow when we see the dr.

My seizures were starting at 3 hours apart, then went to 2 hours apart, then 1 hour apart, half an hour and then 15 minutes.

I noticed with each seizure, my body felt numb in new areas. My hands, feet, upper legs, head and face would get so numb feeling during a seizure it was just so weird... hard to explain in words how it felt.

My last seizure was almost 2 hours ago. So for some reason my body quit having the seizures, which is weird since they were coming closer in time.

My body feel like a bad truck hit it a zillion times. They have the automatic leg massagers on my lower legs to prevent clots from forming and when I stiffen up during a seizure, those alone make my legs feel even worse with the sqeezing it does.


anyways, thats the update so far. They are keeping me up til 3am... another 3 1/2 hours... then I can sleep. but Im scared to sleep. I dont want to have a seizure while Im sleeping. My dr said he is not concered with how many I have, he just wants to get me to have a big seizure. He would like to see me have one grand mal. If I have one of those, he will then put me on the adivan and stop my seizures for me. But if I dont have one by tomorrow morning when I see him, he will try the lights and hypervenalation tomorrow.

 

[Endless]

Hi, Mom,

It's not unusual to have more seizures than usual when taken off your AED cold turkey. It can be a rather intense experience, with different and more intense auras and seizures both.

What you are going through isn't fun. Hang in there. <<<<hugs>>>>

 

[huskymom]

Stay strong!!!:rock:

 

[momof3boys]

Thanks everyone!

So far today, Ive had two.... they said they registered on the eeg, but my dr came in and said he wants me to have a grand mal. They will be giving me the lights and hypervenalation today. He then says, "Hey, its only midweek... we have plenty of time"...... Im getting tired of this stuff! I want out!

 

[Nakamova]

Why does he want to see the grand mals? Is he hoping to see the specific focus where it orginates?

 

[momof3boys]

Why does he want to see the grand mals? Is he hoping to see the specific focus where it orginates?

yeah he wants to see where they are coming from....

he just told us he wants to see me have a big one. the ones i have been having are nowbeing seen on the eeg... but he wants to see me have a big one. im still waiting to get the lights and breathing going....

 

[momof3boys]

my dr said he wont be having me do the lights of heavy breathing til tomorrow. Ive had 4 seizures so far today, so he wants to see what the rest of the day will bring. good news is, I am not having to be sleep deprived tonight. I dont think I really could handle another night of staying up... that was tough last night to do.