Hi guys,
This will probably be a long post as I have just found this place and wish to share my experiences with you and maybe get some hints or insight.
As mentioned in my other post, I don't have epilepsy myself but my girlfriend of 3 1/2 years was diagnosed in Oct 07. Just a random tonic-clonic seizure out of nowhere one night. She did have "weird" spells happening the day before which now we realise was a lead up. At the time we obviously didn't know what was going on.
I don't know if it can be mentioned here but we believe marijuana had been causing the tonic-clonics. She used to go on benders occassionally and at times smoking literally every waking moment. There wasn't an issue while she was smoking, it was a couple of days after having stopped that the seizures would kick in. Usually 2 or 3 in the same night.
Being new to it all, I rang the ambulance probably more often than I needed to but it scared the hell out of me and I didn't know what else to do.
The 2 years following the diagnosis she refused to face it so continued her life as if it never happened. Prescribed Tegratol first, when that didn't work she went onto Lamictal. Taking it at different times of the day and sometimes missing it all together. Smoking away then having seizures which drove me so friggin nuts. In a way it was easier for her because she obviously didn't remember seizures and didn't have to watch someone you love having one. As I said, being new to it scared the hell out of me every time. Basically no progress in these 2 years. Tonic clonic seizures every month.
Fast forward to Jan this year. Another big bender and a couple of days later on the 26th Jan 3 tonic-clonic seizures. It must have then clicked in her mind that she can no longer deny the links between weed and the seizures. It was hard for her because it was her one way of forgetting and not stressing, which i was able to relate to as I drink a bit and loved my cigarettes to calm me down and zone out.
Nearly 4 months now of not smoking and oddly enough no tonic-clonics! I am so happy about this but it seems another kind of seizure has developed. She started having random bouts of twitching, confusion and dizziness. We spoke to her neurologist and he claimed they were panic attacks, which I am open to as she does have anxiety and depression and the fact that epilepsy was now causing her so much distress, her panic attacks were manifesting themselves in this manner. She didn't want a bar of it and took it to mean she was faking and making it up.
She is still suffering these symptoms but slightly different as she now sometimes simply collapses. She is still awake and aware, just no energy to get back up and mumbles quite a bit. She is currently on 50mg Lamictal in the am and 200mg Lamictal in the pm. Due to the two years of no progress we are only in the early stages of finding the right meds.
What's more worrying at this point is her attitude towards what she has been dealt and what that is doing to her moods. As I mentioned she suffers depression and has for many years, so when epilepsy got thrown her way it has made things 10 times worse.
I don't know what i'm looking for here, if anything, just wanted to get stuff off my chest as at the moment I feel so useless and helpless. Have to just sit by and watch and hope changing meds, dosage and seeing a psychiatrist, psychologist, neurologist will all somehow magically come together and work out for her.
All she can say at the moment is "I just want to be fixed" and "I can't live with this forever" thats it.
Sorry for so much info at once and it's probably all over the shop but that's how my mind is working at the moment lol
Cheers
This will probably be a long post as I have just found this place and wish to share my experiences with you and maybe get some hints or insight.
As mentioned in my other post, I don't have epilepsy myself but my girlfriend of 3 1/2 years was diagnosed in Oct 07. Just a random tonic-clonic seizure out of nowhere one night. She did have "weird" spells happening the day before which now we realise was a lead up. At the time we obviously didn't know what was going on.
I don't know if it can be mentioned here but we believe marijuana had been causing the tonic-clonics. She used to go on benders occassionally and at times smoking literally every waking moment. There wasn't an issue while she was smoking, it was a couple of days after having stopped that the seizures would kick in. Usually 2 or 3 in the same night.
Being new to it all, I rang the ambulance probably more often than I needed to but it scared the hell out of me and I didn't know what else to do.
The 2 years following the diagnosis she refused to face it so continued her life as if it never happened. Prescribed Tegratol first, when that didn't work she went onto Lamictal. Taking it at different times of the day and sometimes missing it all together. Smoking away then having seizures which drove me so friggin nuts. In a way it was easier for her because she obviously didn't remember seizures and didn't have to watch someone you love having one. As I said, being new to it scared the hell out of me every time. Basically no progress in these 2 years. Tonic clonic seizures every month.
Fast forward to Jan this year. Another big bender and a couple of days later on the 26th Jan 3 tonic-clonic seizures. It must have then clicked in her mind that she can no longer deny the links between weed and the seizures. It was hard for her because it was her one way of forgetting and not stressing, which i was able to relate to as I drink a bit and loved my cigarettes to calm me down and zone out.
Nearly 4 months now of not smoking and oddly enough no tonic-clonics! I am so happy about this but it seems another kind of seizure has developed. She started having random bouts of twitching, confusion and dizziness. We spoke to her neurologist and he claimed they were panic attacks, which I am open to as she does have anxiety and depression and the fact that epilepsy was now causing her so much distress, her panic attacks were manifesting themselves in this manner. She didn't want a bar of it and took it to mean she was faking and making it up.
She is still suffering these symptoms but slightly different as she now sometimes simply collapses. She is still awake and aware, just no energy to get back up and mumbles quite a bit. She is currently on 50mg Lamictal in the am and 200mg Lamictal in the pm. Due to the two years of no progress we are only in the early stages of finding the right meds.
What's more worrying at this point is her attitude towards what she has been dealt and what that is doing to her moods. As I mentioned she suffers depression and has for many years, so when epilepsy got thrown her way it has made things 10 times worse.
I don't know what i'm looking for here, if anything, just wanted to get stuff off my chest as at the moment I feel so useless and helpless. Have to just sit by and watch and hope changing meds, dosage and seeing a psychiatrist, psychologist, neurologist will all somehow magically come together and work out for her.
All she can say at the moment is "I just want to be fixed" and "I can't live with this forever" thats it.
Sorry for so much info at once and it's probably all over the shop but that's how my mind is working at the moment lol
Cheers