Hi everyone I’m new here. I’m 30 years old, and my seizures started in May of 2012. At the time we had no clue that it was a seizure, as the only witnesses were my 23 3rd grade students. I remember not feeling well that morning, but still going to work. The whole morning is still foggy to me – I remember sitting down at my laptop to take attendance, and honestly the next thing I remember is being in an ambulance. My kids were wonderful from what I’m told– 2 were quick thinking and went and got other teachers – one of whom had to pick me up, and he laid me on the floor until I woke up. My poor kids were then moved into another classroom.
At the time, the ER still didn’t think it was a seizure since there was no one to know what had happened. I did have an MRI, but since nothing was found, they assumed it was heat stroke since it was an especially hot day even for May - in the past I have had problems with this and have passed out.
Then 2 months later in July my mother and I were doing yard work and went inside for some lunch. While sitting at the pub-height table, I apparently pointed to the TV and stared off into space, and then started talking nonsense to my mother and she realized I was starting to have a seizure. She ran over and had to help me to the floor. Then she called the ambulance since we live in the country and were there without a car. When the call went out, the father of one of the students who witnessed the first seizure heard it (even though he was off duty) and came up to help. This is the nice thing about small towns – he grew up with my brother, and I taught his son, and he wanted to be there to help.
Again, I don’t remember anything except a few bits and pieces of things from the ambulance ride. This time in the hospital I was admitted and stayed overnight, since my mother witnessed the whole incident. I had another MRI and a CAT scan, along with and EEG. I met with a neurologist, and was diagnosed with grand-mal seizures, and was put on Keppra.
The Keppra was horrible!!! I hated taking it – I had the worst mood swings – I was always crying, felt like I was always mad at someone, could never focus on anything, and my memory was horrible. There were so many other terrible side effects. In September and November I had 2 more seizures while still on the Keppra. All of these seizures completely knocked me out for the rest of the day. I don’t remember the episodes, and I slept most of the rest of the day.
Since the seizures were continuing, and the side effects were horrible, I asked to be switched.
My neuro switched me to Topamax, which I am still currently on. In terms of side effects it is much better than the Keppra, but I have had another seizure – I had another in January. However, this seizure was a little different. I was getting ready in the bathroom and could tell something was “off” so I sat on the edge of the tub. I knew I must have had a seizure, because when I “woke up” I looked at the bathroom counter and everything was all knocked down. Afterwards, I went downstairs to mention it to my parents – they thought the noise they heard was just the cat! Anyway, this one was quick, and I wasn't nearly as tired, so it may not have been a grand mal, but no witness, so who knows! Either way, I still went to work, but did call the doctor and tell him so he could keep track.
That means I've had 5 total, one on average once every 2 months. The only month I've skipped is this current month, March, so I’m crossing my fingers I don’t have another.
I honestly don’t know why my seizures decided to start when I was 29 years old. My father also has seizures, also grand mal – he didn't start having them until he was in his 40s, but has only had 2, and hasn't had one in 20 years and is still on Dilantin. My neuro said he wouldn't consider prescribing that for me due to the side effects, even though it works for my father, unless we get through a long list of others that don’t work for me.
I’m finally ok with the whole epilepsy label now. The diagnosis doesn't scare me as much as it once did. What worries me now is that I am now living alone. I was living with my parents, and am now by myself, so I worry about what could happen if I have a seizure when I am home alone. I also worry about telling people about my seizures. A part of me thinks that I don’t really need to tell many people, which I haven’t, but at the same time, I want some people around to know, in case something happens they will know what to do. Obviously my whole family knows, my close friends. And only about 5 people at work, including the school nurse.
Anyway, thanks for listening everyone!
At the time, the ER still didn’t think it was a seizure since there was no one to know what had happened. I did have an MRI, but since nothing was found, they assumed it was heat stroke since it was an especially hot day even for May - in the past I have had problems with this and have passed out.
Then 2 months later in July my mother and I were doing yard work and went inside for some lunch. While sitting at the pub-height table, I apparently pointed to the TV and stared off into space, and then started talking nonsense to my mother and she realized I was starting to have a seizure. She ran over and had to help me to the floor. Then she called the ambulance since we live in the country and were there without a car. When the call went out, the father of one of the students who witnessed the first seizure heard it (even though he was off duty) and came up to help. This is the nice thing about small towns – he grew up with my brother, and I taught his son, and he wanted to be there to help.
Again, I don’t remember anything except a few bits and pieces of things from the ambulance ride. This time in the hospital I was admitted and stayed overnight, since my mother witnessed the whole incident. I had another MRI and a CAT scan, along with and EEG. I met with a neurologist, and was diagnosed with grand-mal seizures, and was put on Keppra.
The Keppra was horrible!!! I hated taking it – I had the worst mood swings – I was always crying, felt like I was always mad at someone, could never focus on anything, and my memory was horrible. There were so many other terrible side effects. In September and November I had 2 more seizures while still on the Keppra. All of these seizures completely knocked me out for the rest of the day. I don’t remember the episodes, and I slept most of the rest of the day.
Since the seizures were continuing, and the side effects were horrible, I asked to be switched.
My neuro switched me to Topamax, which I am still currently on. In terms of side effects it is much better than the Keppra, but I have had another seizure – I had another in January. However, this seizure was a little different. I was getting ready in the bathroom and could tell something was “off” so I sat on the edge of the tub. I knew I must have had a seizure, because when I “woke up” I looked at the bathroom counter and everything was all knocked down. Afterwards, I went downstairs to mention it to my parents – they thought the noise they heard was just the cat! Anyway, this one was quick, and I wasn't nearly as tired, so it may not have been a grand mal, but no witness, so who knows! Either way, I still went to work, but did call the doctor and tell him so he could keep track.
That means I've had 5 total, one on average once every 2 months. The only month I've skipped is this current month, March, so I’m crossing my fingers I don’t have another.
I honestly don’t know why my seizures decided to start when I was 29 years old. My father also has seizures, also grand mal – he didn't start having them until he was in his 40s, but has only had 2, and hasn't had one in 20 years and is still on Dilantin. My neuro said he wouldn't consider prescribing that for me due to the side effects, even though it works for my father, unless we get through a long list of others that don’t work for me.
I’m finally ok with the whole epilepsy label now. The diagnosis doesn't scare me as much as it once did. What worries me now is that I am now living alone. I was living with my parents, and am now by myself, so I worry about what could happen if I have a seizure when I am home alone. I also worry about telling people about my seizures. A part of me thinks that I don’t really need to tell many people, which I haven’t, but at the same time, I want some people around to know, in case something happens they will know what to do. Obviously my whole family knows, my close friends. And only about 5 people at work, including the school nurse.
Anyway, thanks for listening everyone!