Hi there,
Hope this finds everyone well.
I am 33 yrs old and was diagnosed with Juvenile Myoclonic Ep when I was 16. I was put on Tegretol which was no use. I had a series of Tonic Clonic seizures over the next few years - mainly sleep-deprivation related. Several of them were in different jobs in public, which I was so humiliated by. Esp the reactions I got! (I didn't know YOU had Epiliepsy...etc.).
To be honest I was quite in denial and wasn't taking meds completely regularly. Having said that, my granny was prescribed the same Tegretol at the time, for a trapped nerve in her back!
Anyway, I changed to Epilim and never looked back. I celebrated 10 years' seizure-free this past February, having taken 600mg of Epilim daily since 2002.
I am extremely private about my epilepsy, as I'd imagine many are - simply because of the complications of people in work - and potential employers who I know would not employ me due to lack of knowledge about the condition - despite the fact that I have been controlling it well in recent times.
I have joined this forum to meet others in the same boat and to share our thoughts, feelings and experiences. I have been a long time feeling lonely with this condition - you know - not meeting others with it who I can chat to. I've managed well since 2002, but now this year has 'thrown up' the thoughts of pregnancy, since I got married last year. I have met with my consultant twice recently and he has told me of the risks involved with Epilim + pregnancy; citing Keppra as a good med to change to. I am, to be honest, highly uncomfortable at the thought of changing from Epilim - my 'FRIEND' for this past 10 years. So comes the overlapping of meds; the weaning off Epilim; the total dependence on Keppra (which may not suit me) and then the hoping to get pregnant when I'm solely on Keppra. Lots to think about. Job is a massive issue, tbh, for me. My mother has pointed out that I may have to totally give it up, so I can grab sleep whenever I need it - with the baby (presuming all goes okay there)
So much to contemplate!
If you've read all of this - thanks so much for your time!
It's been so hard to write as I keep the whole thing buried away. So used to that by now!
Hope this finds everyone well.
I am 33 yrs old and was diagnosed with Juvenile Myoclonic Ep when I was 16. I was put on Tegretol which was no use. I had a series of Tonic Clonic seizures over the next few years - mainly sleep-deprivation related. Several of them were in different jobs in public, which I was so humiliated by. Esp the reactions I got! (I didn't know YOU had Epiliepsy...etc.).
To be honest I was quite in denial and wasn't taking meds completely regularly. Having said that, my granny was prescribed the same Tegretol at the time, for a trapped nerve in her back!
Anyway, I changed to Epilim and never looked back. I celebrated 10 years' seizure-free this past February, having taken 600mg of Epilim daily since 2002.
I am extremely private about my epilepsy, as I'd imagine many are - simply because of the complications of people in work - and potential employers who I know would not employ me due to lack of knowledge about the condition - despite the fact that I have been controlling it well in recent times.
I have joined this forum to meet others in the same boat and to share our thoughts, feelings and experiences. I have been a long time feeling lonely with this condition - you know - not meeting others with it who I can chat to. I've managed well since 2002, but now this year has 'thrown up' the thoughts of pregnancy, since I got married last year. I have met with my consultant twice recently and he has told me of the risks involved with Epilim + pregnancy; citing Keppra as a good med to change to. I am, to be honest, highly uncomfortable at the thought of changing from Epilim - my 'FRIEND' for this past 10 years. So comes the overlapping of meds; the weaning off Epilim; the total dependence on Keppra (which may not suit me) and then the hoping to get pregnant when I'm solely on Keppra. Lots to think about. Job is a massive issue, tbh, for me. My mother has pointed out that I may have to totally give it up, so I can grab sleep whenever I need it - with the baby (presuming all goes okay there)
So much to contemplate!
If you've read all of this - thanks so much for your time!
It's been so hard to write as I keep the whole thing buried away. So used to that by now!