Hi everyone,
i am so pleased to have found this forum, to have others to talk to who know what you are going through and to be able to support others in need.
Well as for me, i am a 45yr old mother of 2 from Aussie. i have lived with Tonic Clonic seizures for 20yrs. i am apparently one of 3% whose seizures cannot be controlled by meds and surgery isn't an option. although i only have seizures monthly i don't get any warning or identified triggers at all, so have to try and live life as best i can knowing that i could seize anytime.
I have tried just about all meds over the 20yrs, most recently trialling VIMPAT. as of yesterday i was taken off it as it wasn't helping. now my Dr says that i need to pick a med that i have had least side effects with and stick with that, knowing it won't prevent seizures 'anything is better than nothing, even if it just delays that inevitable fit that takes me out'. Despite having this illness for over 2 decades i continue to grieve after every visit to my specialist as for me there is no answer.
Sorry guys didn't realise how depressing this all sounds. which is kind of ironic since i was about to mention i self-published a book called SPARK OF HOPE - Living with Epilepsy. i have been trying in vain to get work, what with not being able to drive anymore coz of unpredictable seizures plus having to tell employers i have an uncontrollable illness as well as a deformed leg which means i can't walk miles or stand for long time and of course the fact i am over 40 doesn't help either.it seems my experience and skills count for nothing!
Anyway thats more than enough about me for now, i look forward to getting to know you better and learning and sharing together.
Cheers Westy
i am so pleased to have found this forum, to have others to talk to who know what you are going through and to be able to support others in need.
Well as for me, i am a 45yr old mother of 2 from Aussie. i have lived with Tonic Clonic seizures for 20yrs. i am apparently one of 3% whose seizures cannot be controlled by meds and surgery isn't an option. although i only have seizures monthly i don't get any warning or identified triggers at all, so have to try and live life as best i can knowing that i could seize anytime.
I have tried just about all meds over the 20yrs, most recently trialling VIMPAT. as of yesterday i was taken off it as it wasn't helping. now my Dr says that i need to pick a med that i have had least side effects with and stick with that, knowing it won't prevent seizures 'anything is better than nothing, even if it just delays that inevitable fit that takes me out'. Despite having this illness for over 2 decades i continue to grieve after every visit to my specialist as for me there is no answer.
Sorry guys didn't realise how depressing this all sounds. which is kind of ironic since i was about to mention i self-published a book called SPARK OF HOPE - Living with Epilepsy. i have been trying in vain to get work, what with not being able to drive anymore coz of unpredictable seizures plus having to tell employers i have an uncontrollable illness as well as a deformed leg which means i can't walk miles or stand for long time and of course the fact i am over 40 doesn't help either.it seems my experience and skills count for nothing!
Anyway thats more than enough about me for now, i look forward to getting to know you better and learning and sharing together.
Cheers Westy
