Just an update really

[Loopy Lou]

Thankfully i haven't had any tonic clonics for nearly four months now (woohoo!!!) but i am still having partials. Like today for example. Had quite a lot of partials today. Just a bad day i think. Felt better after going for a "little snooze" that turned into a 7 hour flat out sleep.

As much as i dislike the Tegretol for weight gain, sleepiness, general fuzzy headedness and sore feet/legs it actually seems to be working for the tonic clonics. My neurologist is wanting to increase it but so far i've refused. Do you think if i increased it then it might stop the partials too? I just really hate the side effects and the way it makes me feel.

I'm currently on 3000mg keppra and 600mg tegretol.

Is it normal for a medication to control one type of seizure and not another? I wouldn't go so far as to say i'm completely controlled, but going for four months is prettty good. I usually have nocturnal tonic clonics and simple and complex partials. I read on my tegretol information that it's not supposed to be used on people with multiple seizure types so i'm not entirely sure why my neurologist put me on it.

I think i may put off changing any doses until i see the neuropsychologist, but i'm still waiting for the referral to come through. Could take up to 6 months >.<

 

[epileric]

If you see the Tegretol helping I think you should wait longer & see if either the side-effects subside or you learn to deal with them in a way that they don't disrupt your life as much. Then consider upping the dose.

Of course that also depends how often you get partial seizures like the one you described & how much they are disrupting your life.

 

[Loopy Lou]

They're pretty much still ruining my working life and mean that i can't drive and stuff. For some reason the people at work assume that since i'm still having partials that it's "only logical" that i could have a tonic clonic at any time at work. I think their definition of logic is way different to mine and my neurologists =/ . Anyhoo hopefully a new job soon lol.

Sometimes i can have a really bad week with partials or just a bad day and then sometimes i can go for a few days having very few. I still haven't managed to work out a pattern to it at all. Except of course when i'm either tired or stressed. They can make me very tired if i have a few in one day. I think my main problem with tegretol apart from the weight gain is the tiredness. I'm rarely awake for more than 8 hours at a time. I was hoping that being more active would help so i've been going out more, taken up ice skating and am joining the gym. So far still constantly tired though haha.

 

[epileric]

I really wish I had better advice for you.

Meanwhile all I've got to give is my sympathy & empathy and you've got 'em both.

 

[momof3boys]

I hope things get better and you dont have any more seizures. I was on 3000mgs of Keppra and 1200mgs of Carbatrol for over 12 years and it was a wonderful combination for me!