Hi guys and girls
I just wanted to share my experience with you and see if you any of you have had a similar thing happen; I wouldn’t normally open up but seeing I’ve had a relapse at an older age it’s really getting me down.
I was diagnosed with generalised photosensitive epilepsy at 11 years old, started on Epilim. Over the next few years had increasing amounts of seizures and had massive doses of Epilim. Apparently most of my tonic-clonic seizures were whilst I was asleep and also some within 20 minutes of waking up but except for my very first one, none were ever during the day. My parents finally found a decent neurologist and I switched over to Dilantin. Also my photic stimulation seemed to cease. When I was 18 I stopped taking my meds as I saw no point. Bad move! Had a seizure late at night before bed. Started on Lamictal as it was new then. That was 1995. Everything was great for 10 years. Enjoyed the single life, didn’t drink too much, stayed up reasonably late, got married blah blah. 2005, sleep deprivation, food poisoning, a few of benign stress, bam! A seizure just after I had fallen asleep. And it was bad. My poor wife was 6 months pregnant too! I was off the road for 2 months and increased my night dose of Lamictal. I also limited my caffeine, alcohol and sleep became a priority.
Fast forward to April this year (2013); I’m 36. Due to a few weeks of not sleeping very well (sick kids), I had a seizure after waking up and going back to sleep at 6am. My wife’s alarm went off; I woke up, went back to sleep, then had a seizure. My neurologist (the same one!) put it down to sleep deprivation and also said the alarm could have assisted in bringing me out of that sleep. I started on Topamax 25mg, increased to 37.5g to control my myoclonus (which only occurs during sleep, and is now pretty much controlled).
Now come to July this year. I went to bed early. Woke up an hour later; I think the dog was tapping at the window. Went back to sleep. Then I had a seizure. It wasn’t as bad, and I have recovered a lot quicker (although still feel a bit dreamy). But of course the question remains – WHY????
I haven’t had alcohol in 3 weeks, I have been sleeping heaps, I’ve lost 8kg’s since my April seizure, I’ve been eating unprocessed/raw foods. The only thing I can put it on is – possibly dehydrated (from a stomach bug a few weeks earlier), possibly waking up from dog tapping at window, maybe something with my diet; oh, and the Topamax has been making me depressed about a few things, causing me stress, sometimes to the point of mania. But I don’t get it, and this is my key statement:
- I had gone for 10 years on minimal dose of Lamictal, pushing my boundaries hard, then another 7 years on a slightly increased dose. Then even with going onto Topamax I have a 2nd seizure in 4 months. WHY?????
My neurologist is away and I can’t contact her or anything; I have stopped driving and I don’t know what she’s gonna say. But under our National Driving Guidelines, if you have only sleep seizures and no waking seizures for 2 years, you can drive. So I don’t see why I can’t continue to. Her plan was to introduce some Epilim with my Lamictal if Topamax didn’t control my myoclonus properly. So unless my body is resilient against Topamax or something I don’t know. I was initially against going on Epilim as it did so much damage to me when I was a teenager, but it’s gotta be better than Topamax right now.
Have any of you had massive breaks in seizures, then had some you just can’t explain? It’s really killing my confidence, and especially if my neurologist won’t let me back on the road (I cannot see why), it’s gonna kill it further (no jokes about killing others please – I haven’t had a daytime seizure for about 22 years).
Thanks all
K
I just wanted to share my experience with you and see if you any of you have had a similar thing happen; I wouldn’t normally open up but seeing I’ve had a relapse at an older age it’s really getting me down.
I was diagnosed with generalised photosensitive epilepsy at 11 years old, started on Epilim. Over the next few years had increasing amounts of seizures and had massive doses of Epilim. Apparently most of my tonic-clonic seizures were whilst I was asleep and also some within 20 minutes of waking up but except for my very first one, none were ever during the day. My parents finally found a decent neurologist and I switched over to Dilantin. Also my photic stimulation seemed to cease. When I was 18 I stopped taking my meds as I saw no point. Bad move! Had a seizure late at night before bed. Started on Lamictal as it was new then. That was 1995. Everything was great for 10 years. Enjoyed the single life, didn’t drink too much, stayed up reasonably late, got married blah blah. 2005, sleep deprivation, food poisoning, a few of benign stress, bam! A seizure just after I had fallen asleep. And it was bad. My poor wife was 6 months pregnant too! I was off the road for 2 months and increased my night dose of Lamictal. I also limited my caffeine, alcohol and sleep became a priority.
Fast forward to April this year (2013); I’m 36. Due to a few weeks of not sleeping very well (sick kids), I had a seizure after waking up and going back to sleep at 6am. My wife’s alarm went off; I woke up, went back to sleep, then had a seizure. My neurologist (the same one!) put it down to sleep deprivation and also said the alarm could have assisted in bringing me out of that sleep. I started on Topamax 25mg, increased to 37.5g to control my myoclonus (which only occurs during sleep, and is now pretty much controlled).
Now come to July this year. I went to bed early. Woke up an hour later; I think the dog was tapping at the window. Went back to sleep. Then I had a seizure. It wasn’t as bad, and I have recovered a lot quicker (although still feel a bit dreamy). But of course the question remains – WHY????
I haven’t had alcohol in 3 weeks, I have been sleeping heaps, I’ve lost 8kg’s since my April seizure, I’ve been eating unprocessed/raw foods. The only thing I can put it on is – possibly dehydrated (from a stomach bug a few weeks earlier), possibly waking up from dog tapping at window, maybe something with my diet; oh, and the Topamax has been making me depressed about a few things, causing me stress, sometimes to the point of mania. But I don’t get it, and this is my key statement:
- I had gone for 10 years on minimal dose of Lamictal, pushing my boundaries hard, then another 7 years on a slightly increased dose. Then even with going onto Topamax I have a 2nd seizure in 4 months. WHY?????
My neurologist is away and I can’t contact her or anything; I have stopped driving and I don’t know what she’s gonna say. But under our National Driving Guidelines, if you have only sleep seizures and no waking seizures for 2 years, you can drive. So I don’t see why I can’t continue to. Her plan was to introduce some Epilim with my Lamictal if Topamax didn’t control my myoclonus properly. So unless my body is resilient against Topamax or something I don’t know. I was initially against going on Epilim as it did so much damage to me when I was a teenager, but it’s gotta be better than Topamax right now.
Have any of you had massive breaks in seizures, then had some you just can’t explain? It’s really killing my confidence, and especially if my neurologist won’t let me back on the road (I cannot see why), it’s gonna kill it further (no jokes about killing others please – I haven’t had a daytime seizure for about 22 years).
Thanks all
K