Epilepsy medication

ripcord

Hi all,

In 2001 I started having blackouts. No warning. Bascially I would lose consciousness for a second (just collapse). When I wake up, I would have temporary loss of memory, and be extremely tired - to the point where I had to sleep straight away.

I got all the scans doctors suggested - eveything was fine! I think they just assumed it was epilepsy, I'm not sure if this is usual - do many epileptics have clear scans and tests?

Anyway I was put on Epilim Chrono 300mg twice/daily. This didn't work. I was still having blackouts every 2/3 weeks. Then they also put me on Lamictal 50mg twice/daily. The combination of both did the trick - so I assume it is epilepsy. Thank god I have not had a blackout in 10 years.

My last time at the neuologist I asked him about coming off the tablets. He gave me a 6 month prescrition that would gradually bring me off one then the other.

Here's the kicker. I would be lost without my car. If I come off the tablets and I have a blackout, I will be off the road for a year. (Worse - the blackout could happen when I was driving).

I was wondering if anyone had any thoughts/experience on this? 10 years is a long time to be on medication that I might not need. The neurologist agreed that it was a tough decision.

Thanks

Birdsong

Hi OP, just had to reply to your post.

I too have epilepsy, got it in my early teens, now mid 30's - nocturnal only, and am on Epilim Chrono 1000mg per day, and was seizure free for a number of years.

In 2009, I got lazy about renewing the persrciption, thinking had i grown out of it, questioned did I need it, in the end I didn't get take the tablets for about 3 or 4 months and I had a seizure in my local Aldi. I was taken by ambulance to nearest hospital and had to face the music when i came around. I did quite a lot of damage to my face & eye, ended up with severe bruising but at least it was only myself, it could have been a whole lot worse.

unlike yourself though i didn't discuss if i could or should have, I did this on my own.

I was very very lucky, I could well have been in my car when i got the seizure, minutes earlier. Back on medication, was off the road for a year, that was the hardest year of my life in many ways.

For me now, taking medication is a small price to pay & i won't ever be questioning if I need it again.

Sorry for the ramble, but I know what your thinking.

ripcord

Birdsong wrote: »

Hi OP, just had to reply to your post.

I too have epilepsy, got it in my early teens, now mid 30's - nocturnal only, and am on Epilim Chrono 1000mg per day, and was seizure free for a number of years.

In 2009, I got lazy about renewing the persrciption, thinking had i grown out of it, questioned did I need it, in the end I didn't get take the tablets for about 3 or 4 months and I had a seizure in my local Aldi. I was taken by ambulance to nearest hospital and had to face the music when i came around. I did quite a lot of damage to my face & eye, ended up with severe bruising but at least it was only myself, it could have been a whole lot worse.

unlike yourself though i didn't discuss if i could or should have, I did this on my own.

I was very very lucky, I could well have been in my car when i got the seizure, minutes earlier. Back on medication, was off the road for a year, that was the hardest year of my life in many ways.

For me now, taking medication is a small price to pay & i won't ever be questioning if I need it again.

Sorry for the ramble, but I know what your thinking.

Jesus sorry to hear that Birdsong. What your describing is a nightmare scenario for me. The thing is, even though the doctor gave me the prescription to wean myself off the tablets - he couldn't say what the result would be. I've heard alot of epilepsy control is trial and error.

Thank God you weren't in your car. The results could have been disastorous. I've blacked out in a few public places (argos in jervis street!) - hit my head a few times but no magor damage. Its scary when you think about it.

Its a big gamble. The tablets are really just an inconvenience. Even more so because I am travelling Asia for 6 weeks in sep/oct. I'm not even sure if I'm allowed get extra on my monthly LTI prescription to cover me when i'm out there :eek:

Thanks for sharing your story. Food for thought.:)

Birdsong

Only getting back to you now, I dont think there would be a problem with getting your perscription up front from your chemist - you probably use a regular one any way who knows you. Indeed twice I have found chemists to be brilliant, at times when I have been away and forgotten my medication, I went into a chemist and explained the situation and they gave me enough to carry over FOC.

Now I no longer think of epiliepsy or the taking of the tablets as an inconvienience, after what happened to me & talking to the nurse on the Brainwave helpline I have changed how I feel about it. There are many different illness's I could have which are worse & the consequences of not taking medication are scary & I had a narrow escape as did others if i had been driving. She suggested things like phone reminders for taking tables which helped me.

sorry for waffling on, but I know how you feel

thesimpsons

similiar situ wth very close relative. seizures now controlled 8 years, back driving, etc. last year after various routine blood tests results showing high liver function tests and after putting on alot of weight, thought about coming off the medication thinking it was the medication. Consultant was willing to assist with weaning off the medication (similiar 6 months setup to yourself), however, he did warn me that there are no guarantees that seizures would or would not return, and if they did return they could be worse than before and/or happen while driving or similiar activity. Relative really felt he couldn't take that chance with his/other people's lives, he couldn't survive again without his car (he was without car for 2.5years before he got controlled). Following a change of diet & lifestyle, routine blood tests are now very normal again. guess it wasn't the medication but a lazy lifestyle afterall ! anyway, no one but yourself can really make that decision.

regarding the travelling, chemist has had no problem giving 2 months worth of tablets for times when travelling. one thing is just to remember bring the prescription with you when travelling - mainly for proving to customs why you have a large supply of tablets and secondly, in case you loose your medication, you can at least show chemist overseas what you are on.