Fucking seizures are returning again!!! am reducing me meds due side affects and am eventually weaning off them completely. Consultant said my seizures may increase in intensity and frequency, which I fully expected. But its still a fucker.
Where i'm at with my Meds:
Keppra (drug 1) 90% seizure control. Too many extreme side affects. Discontinued use.
Lamotrigine (drug 2) 50% seizure control. no side affects. continued use as a stabiliser.
Carbamazapine (drug 3) about 90% seizure control together with (drug 2). Crappy side affects. discontinuing use.
When completely off (drug 3) Will stay on (drug 2) as my base and try a new drug (drug 4)
Not sure what drug 4 will be yet, will find out when i'm totally off drug 3.
All this just to control my seizures!! When I have 90% control with my seizures, I do slowly forget what its like having regular seizures. How it effects my confidence and what i do day to day and how I shut myself away.
It's harder having seizures when I'm out on my own with jamie. He doesn't really understand and I'm worried he will run off! We do have a little code and he knows what to do. I just get him to wait by me and hold my hand till its over. But he's a nearly 3 yr old and there maybe times that he's not near to me! so when i have more seizures and there's no one to come out with us, I tend to stay in. As you can imagin with jamie and his energy, its a nightmare staying in for more than a few hours.
Oh and I dread getting a bus on my own when I'm having frequent seizures. They could happen when I'm trying to on or off the bus. Well you get the picture.
Not a happy bunny!! but hate crappy side affects, so it needs doing.
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I know what you mean about side-effects! I am on three different meds at the moment and just come off one which I tried for a month or so, but it was hellish! Made no difference to my seizures but left me feeling very unwell. I'm on tegratol retard, lamictal (I think) and good old clobazam. No problems taking those three together. What kind of seizure to you have? I have simple partials - no loss of conciousness, but unpleasant all the same. Usually have four of those a day of varying intensities. Had that for six years and very used to it now. Once you've got your meds o.k. then it's not so bad!
ReplyDeleteSnap, I have simple partials too. Effects the right side of my body. Do you still get imbarrassed having seizures in front of people?
ReplyDeleteNo, not really, but then it gets easy to hide them after a while. Most people don't notice them happening - a lot of the time it's where talking gets difficult that gives them an idea that a turn is happening (I call seizures turns, as it doesn't sound so severe). Friends just say "are you o.k.?" and I say "I will be in a minute". The talking part takes a bit of practice! I don't let it get me down though, but it can happen at akward times!
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