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Hi, I'm Emily. I'm new here and I have a few questions. I wasn't really sure where to post this so I hope it's the right place.
First of all, I'm 19 and have had epilepsy since I was 13. It was controlled on Carbatrol for about 5 years. In the past year or so I have been having quite a bit of problems.
When I first found out I had epilepsy I was having tonic-clonic seizures and just one atonic seizure. I started taking Carbatrol and was fine after that (I would only have seizures when I forgot my meds).
About two years ago I started to sleepwalk. I would just get up out of bed and walk around the house semi-responsive and semi-conscious. I have done some strange things while sleepwalking (taking my indoor cat outdoors and putting her in the car, picking out a random book from a bookshelf and giving it to my dad.) When I wake up after I sleepwalk I remember it as a vague dream. I only sleepwalk about 2-5 times/month. I think it might be triggered by lack of sleep. My first neurologist assured me that it had absolutely nothing to do with epilepsy, but when I switched neurologists the new guy told me it was a 'type of seizure'. I have never heard of sleepwalking by people with epilepsy before, so my first question is does anyone else experience this or has heard of something like this before?
About a year ago I went to an amusement park with some friends. I was fine the whole night. There was no drinking or drugs at all. I got home around 3am and went to sleep (3am is not an abnormal time for me to go to sleep). I woke up and was extremely confused. I was conscious but sort of in a daze. I walked around my room for a bit doing kind of uncontrollable things like picking up random things for no reason. I went to tell my dad and I started to cry for no reason and couldn't stop. My head did hurt but it was not extreme pain. I went to my general doctor and she sent me to the Emergency Room. They diagnosed it as 'possible post-concussive'. After 24 hours, I was still quite confused, but it got better after about 4 days. (My neurologist later told me that he thought it was unrelated to the amusement park.)
After about 4 months, I went for a neurologist appointment. I was really curious as to why those things happened so my neurologist sent me to an epilepsy monitoring unit. There, they took me off Carbatrol and I had the sleepwalking problem quite a bit and one tonic-clonic seizure. A new neurologist came in and said that the sleepwalking was a 'type of seizure'.
I was having some difficult side effects with Carbatrol (drowsiness, really, really bad hair loss) so they decided to try to switch me to Keppra. After about a day on Keppra, I had a really bad panic attack. I was thinking I was going to die and there was more uncontrollable crying and paranoia and slight hallucinations. I went to the hospital and they said that Keppra can make a certain percentage of people have panic attacks like that. They took me off Keppra and put me back on Carbatrol.
A while later, after another neurologist appointment, they decided to try to put me on Lamictal. I spent about 11 weeks weaning off Carbatrol and increasing my dosage on Lamictal. Three days after I stopped Carbatrol completely, I started having really bad anxiety, it was like a milder version of the panic attack but with most of the same symptoms.
My neurologist told me that 'Oh, it must have been a coincidence'
onder:
I really doubted that but I went along with it. He told me that I should try decreasing my dose of Carbatrol more slowly.
That was 7 weeks ago. Two weeks ago, I was only on 100mg of Carbatrol/day. I started having anxiety again but now something different started happening: When going to sleep, I have crazy, random thoughts. They aren't bad or anything, just completely random and uncontrollable. Sometimes It feels like I am trying to think of something and I'm visualizing something completely different.
I get moderately painful shooting head pains in random places in my head sometimes. I find myself tapping my foot or my hand uncontrollably. My concentration is waay off (when I read or write something I'll skip over words and letters, I start doing something and lose interest). My memory is definitely worse.
I called my neurologist and he said ignore it and see what happens.
op:
I stopped taking Carbatrol completely on Sunday night. Now I'm taking 250mg of Lamictal/day. My big problem now is that I can't sleep at ALL. I try to get to sleep, have the random thoughts, ALMOST get to sleep, and wake up suddenly like someone would wake from a nightmare. My heart beats really fast. I'm planning on either going to the hospital if I can't get to sleep at all (I would call my neurologist, but I don't have one at the moment, I just switched insurance because I turned 19 on 10-30 and haven't arranged one yet.)
Sorry about the long bio, but I just want to see if anyone else has any of these problems or knows what my problem could be. I would really liked to get this fixed, whatever it is. To me it doesn't really sound like a form of epilepsy, maybe a type anxiety disorder...?
Thanks
- Emily
First of all, I'm 19 and have had epilepsy since I was 13. It was controlled on Carbatrol for about 5 years. In the past year or so I have been having quite a bit of problems.
When I first found out I had epilepsy I was having tonic-clonic seizures and just one atonic seizure. I started taking Carbatrol and was fine after that (I would only have seizures when I forgot my meds).
About two years ago I started to sleepwalk. I would just get up out of bed and walk around the house semi-responsive and semi-conscious. I have done some strange things while sleepwalking (taking my indoor cat outdoors and putting her in the car, picking out a random book from a bookshelf and giving it to my dad.) When I wake up after I sleepwalk I remember it as a vague dream. I only sleepwalk about 2-5 times/month. I think it might be triggered by lack of sleep. My first neurologist assured me that it had absolutely nothing to do with epilepsy, but when I switched neurologists the new guy told me it was a 'type of seizure'. I have never heard of sleepwalking by people with epilepsy before, so my first question is does anyone else experience this or has heard of something like this before?
About a year ago I went to an amusement park with some friends. I was fine the whole night. There was no drinking or drugs at all. I got home around 3am and went to sleep (3am is not an abnormal time for me to go to sleep). I woke up and was extremely confused. I was conscious but sort of in a daze. I walked around my room for a bit doing kind of uncontrollable things like picking up random things for no reason. I went to tell my dad and I started to cry for no reason and couldn't stop. My head did hurt but it was not extreme pain. I went to my general doctor and she sent me to the Emergency Room. They diagnosed it as 'possible post-concussive'. After 24 hours, I was still quite confused, but it got better after about 4 days. (My neurologist later told me that he thought it was unrelated to the amusement park.)
After about 4 months, I went for a neurologist appointment. I was really curious as to why those things happened so my neurologist sent me to an epilepsy monitoring unit. There, they took me off Carbatrol and I had the sleepwalking problem quite a bit and one tonic-clonic seizure. A new neurologist came in and said that the sleepwalking was a 'type of seizure'.
I was having some difficult side effects with Carbatrol (drowsiness, really, really bad hair loss) so they decided to try to switch me to Keppra. After about a day on Keppra, I had a really bad panic attack. I was thinking I was going to die and there was more uncontrollable crying and paranoia and slight hallucinations. I went to the hospital and they said that Keppra can make a certain percentage of people have panic attacks like that. They took me off Keppra and put me back on Carbatrol.
A while later, after another neurologist appointment, they decided to try to put me on Lamictal. I spent about 11 weeks weaning off Carbatrol and increasing my dosage on Lamictal. Three days after I stopped Carbatrol completely, I started having really bad anxiety, it was like a milder version of the panic attack but with most of the same symptoms.
My neurologist told me that 'Oh, it must have been a coincidence'

I really doubted that but I went along with it. He told me that I should try decreasing my dose of Carbatrol more slowly.
That was 7 weeks ago. Two weeks ago, I was only on 100mg of Carbatrol/day. I started having anxiety again but now something different started happening: When going to sleep, I have crazy, random thoughts. They aren't bad or anything, just completely random and uncontrollable. Sometimes It feels like I am trying to think of something and I'm visualizing something completely different.
I get moderately painful shooting head pains in random places in my head sometimes. I find myself tapping my foot or my hand uncontrollably. My concentration is waay off (when I read or write something I'll skip over words and letters, I start doing something and lose interest). My memory is definitely worse.
I called my neurologist and he said ignore it and see what happens.

I stopped taking Carbatrol completely on Sunday night. Now I'm taking 250mg of Lamictal/day. My big problem now is that I can't sleep at ALL. I try to get to sleep, have the random thoughts, ALMOST get to sleep, and wake up suddenly like someone would wake from a nightmare. My heart beats really fast. I'm planning on either going to the hospital if I can't get to sleep at all (I would call my neurologist, but I don't have one at the moment, I just switched insurance because I turned 19 on 10-30 and haven't arranged one yet.)
Sorry about the long bio, but I just want to see if anyone else has any of these problems or knows what my problem could be. I would really liked to get this fixed, whatever it is. To me it doesn't really sound like a form of epilepsy, maybe a type anxiety disorder...?
Thanks
- Emily