When you say seizure free, what do you mean????

[wowthissuxass]

Are you guys usually talking about free from T/C's, or are we considering any and all partials as well. I know this may seem like a strange question, but I wanted to know what you guys thought. i still have 3-20 partials a day, but no t/c's since 6-4. I am wondering when my "3 months of seizure free time" will be over.

Thanks

[RobinN]

I would say nothing, nada, non ...
In two years Rebecca has mostly just had tonic clonic's but she has had a handful of simple partials , and I write those down as seizures. Whether it be her head turning to the side uncontrollably, or her hand shaking without her able to stop it. Those are seizures.

I want it all gone, before she takes the wheel of an automobile. I want a year free and clear. Then I will know she is healthy. For us ... this will mean med free.

[Loudmouth]

I have now, thanks to a combo of 1200mg/day gabapentin & 75mg/day topamax, 2-3 atonic szs per month and 5-6 complex partial's a day. it was many more only 2 weeks ago...the complex partial's DO count,if you are talking about for automobile purposes....it only takes 1 complex partial to kill you/your passengers/pedestrians....

[Meetz1064]

which DOES suck......I'm sorry. BUT, safety, not only for you, but of others, too, has to be considered. I know it doesn't seem fair.....but that's the way it is......

So, when you get to a point when you have NONE, then start counting 3 months from there.......

[brain]

And Epilepsy stinks big time no matter
how you paint it on the canvas, seizures stinks,
whether it's simple partials, complex partials,
absence, tonic-clonic, whatever you want to
call it - it's "hell on earth"!

No one wants it.
Everyone wants it to be exterminated forever!
It kills.
It destroys lives.
It tears families up.
It does so much more and beyond.
It's even worse when one's intractable / refractory.
It's insulting when one is a baby or a little child.

I could go on and on and on and on and on ....
but you get the generalized idea ... IT SUXS BIG TIME!

Everyone from the individual who has it to the very
parent of the child who has it wants nothing more
than to be "E-FREE and PERMANENTLY!"

I've had periods of being E-free from as long as several
months to nearly 5 years under medications (but mind
you, that was a lot of meds back then); but it would all
come tumbling down when my body began to develop
tolerance / resistance to it (the meds). Then a whole new
episode of another 'honeymoon' of titration of another batch
of toying with anti-epileptic drugs to try out to control the
seizures.

BUT THE GOOD NEWS IS ...

NEUROSCIENCE IS PROGRESSING IN ALL
DIFFERENT DIRECTIONS!

It's not all just anti-epileptic drugs and Surgery anymore, they've
also turning to alternatives such as Neurofeedback
which they've concluded that it works! RNS which is
undergoing research is also having a look-see with
good positive results as well. Instead of Neurology
becoming narrow-mindedness; they've now broaden
their horizon and expanded to look at other methods
and manners to treat Epilepsy that works.

Here in CWE - we provide resources, information, both
invasive and non-invasive issues, updates, and so much
more - and not just a place to chat and meet other folks
and a place to unleash and unload and have fun too!

[Georgiagirl88]

Thank you for asking that question..I actually wondered myself and think it is a great question for those of us that aren't as checked out as others.. I am unsure if I am still having them in my sleep and don't know . I used to be startled awake and was fully aware..but thankfully haven't had one like that since I was up for 48 hrs. when my Mom died.I don't think I have had any.. hope not.

Michelle

[Bee91]

I say any seizure like activity at all. Even if I just pass out when it isn't epilepsy related. If it keeps me from driving, I count it. Or if it could affect my driving I count it. That's how I look at it. That's ok. I don't like to drive anyway...

[skillefer]

I've gotta agree with everyone else.....seizure free means absolutely NO seizure activity of any kind whatsoever.....sorry.

[Nancy]

One more person agreeing completely .....
"Seizure free" means not having ANY seizures.

[wowthissuxass]

Well, I guess the unanimous conclusion is that ANY seizure activity is counted, I guess I didn't have to wait too long for that answer. I am in the midst of being taken off Dilantin and being moved to keppra, which i am not too excited about based on the comments I have seen on here about the drug. That being said my seizure activity does seem to be decreased over the past few days. I just moved up to 750x2 a day on the keppra. He has my max dose set to be 1000x2 a day, which seems low compared to some of the people on here, especially for the type and amount of seizures I was/am having.

[Bernard]

As far as the DMV is concerned, the moratorium on seizures has to do with impairment of consciousness (and thus the ability to drive safely). If you have a complex partial seizure while driving, you really aren't in control of the vehicle.

[Belinda5000]

seizure free is not having any seizures.
Which I'll most likely never be.

Belinda

[Cint]

Yep, the conclusion is ANY seizure activity is counted! I take Keppra 3000 mgs a day plus Topamax 200 mgs a day and I still have complex partial seizures on occasion. I noticed your in Broomfield, CO. I'm here in Lone Tree and see a dr. at University of Colorado Hospital.

Cindy

[Loudmouth]

but I Am of the opinion that I will NEVER be safe to drive, as even when my old NEUROLOGIST was telling me I was seizure free ( for 54 weeks!) it turned out that I was having nocturnal szs the whole time!

[Belinda5000]

In a lot of states when your just having nocturnal seizures your allowed to drive.

Belinda

[Loudmouth]

UK's rules seem to be much stricter than USA but after my 54 weeks seizure free, i would have been allowed to drive after 52 weeks....two weeks after that I went into status...QUITE GLAD I hadn't gotten around to renewing my driver's license by then!! I think even a year might not be long enough especially when you bear that in mind. I will NEVER risk driving now. EVEN if I ever qualify again.

[epileric]

Depending on what province you live in. Where I used to live I would have had to go 3 years without a seizure. Where I'm living now I'd only have to wait 1 year (I still don't expect to drive though).

[Meetz1064]

Really? What province is that? Just so that if I ever decide to move to Canada, I won't move there..........ehhehehe

[epileric]

Though it's British Columbia where it's only 1 year.

[Meetz1064]

I will keep that in mind if I ever move up north...doubt I will though, with my arthritis and all.....