tuna_fish9
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I'm new here - I could definitely use some advice!! It's so interesting to read everyone else's stories, so I guess I'll share mine (sorry it's so long!)
I'm a 20 year old girl. In 2003, I had a single grand mal seizure. I was referred to a pediatric neurologist. My EEG at the time showed no spikes, but general bitemporal slow waves, so I had an MRI, which came back with no problems.
Since I just had the one t-c, my neurologist recommended not medicating, which was definitely a good idea at the time.
Since January this year, I've been experiencing what my new neuro (outgrew the old one, unfortunately) thinks are simple partial seizures. 60+ twitches each day, mainly down my right side, plus 3 or 4 BIG jerks each day(the jerks are only down my right side). The jerks are noticeable enough to make me feel awkward - there's nothing like accidentally kicking someone, or unintentionally drawing on the table with a Sharpie!
I had another EEG this spring. This one showed the same bitemporal slowing, but also spikes in my left anterior temporal lobe (grade 4 disrhythmia, which I don't quite understand). Again, I went for another MRI, which was normal.
My neurologist believes that it's partial epilepsy. I saw him last in July. He ordered another EEG, and I will see him next on September 1st. He told me that we will decide (assuming the newest EEG shows the same spikes) whether or not to start treatment at the next appointment. He has no strong preference for medication vs. no medication, and told me he would leave the decision up to me.
I've been trying to weigh the consequences of treatment against the consequences of not treating in my mind.
- Right now, I'm not driving - I know it's not safe, for me, and for everyone else on the road, too. I really would like to be able to drive, though
- I'm in university, and I live away from home, with 3 roommates. For a lot of my day, I'm alone (walking on campus, working out, etc)
- The twitches and jerks seem pretty constant. I've been keeping a journal - they seem constant regardless of sleep, stress, menstruation, etc
- I do worry a bit that I'll have another grand mal; my neuro says there's no way of predicting that though.
- I feel awkward with the twitches and jerks. I don't like it when a kind stranger on the bus asks if I'm alright, or when I accidentally hit someone with my arm.
On the flip side:
- I understand that starting anticonvulsants is a long, long road.
- What if, in 5-10 years, I want to get pregnant?
- Side effects? Drowsiness, weight gain, etc?
I would really, really appreciate any advice, stories, etc, any of you might have. It's a big decision for me to make, and I want to make sure I've covered all my bases before I commit to anything.
Thanks for reading my super-long story!!
Una
I'm a 20 year old girl. In 2003, I had a single grand mal seizure. I was referred to a pediatric neurologist. My EEG at the time showed no spikes, but general bitemporal slow waves, so I had an MRI, which came back with no problems.
Since I just had the one t-c, my neurologist recommended not medicating, which was definitely a good idea at the time.
Since January this year, I've been experiencing what my new neuro (outgrew the old one, unfortunately) thinks are simple partial seizures. 60+ twitches each day, mainly down my right side, plus 3 or 4 BIG jerks each day(the jerks are only down my right side). The jerks are noticeable enough to make me feel awkward - there's nothing like accidentally kicking someone, or unintentionally drawing on the table with a Sharpie!
I had another EEG this spring. This one showed the same bitemporal slowing, but also spikes in my left anterior temporal lobe (grade 4 disrhythmia, which I don't quite understand). Again, I went for another MRI, which was normal.
My neurologist believes that it's partial epilepsy. I saw him last in July. He ordered another EEG, and I will see him next on September 1st. He told me that we will decide (assuming the newest EEG shows the same spikes) whether or not to start treatment at the next appointment. He has no strong preference for medication vs. no medication, and told me he would leave the decision up to me.
I've been trying to weigh the consequences of treatment against the consequences of not treating in my mind.
- Right now, I'm not driving - I know it's not safe, for me, and for everyone else on the road, too. I really would like to be able to drive, though
- I'm in university, and I live away from home, with 3 roommates. For a lot of my day, I'm alone (walking on campus, working out, etc)
- The twitches and jerks seem pretty constant. I've been keeping a journal - they seem constant regardless of sleep, stress, menstruation, etc
- I do worry a bit that I'll have another grand mal; my neuro says there's no way of predicting that though.
- I feel awkward with the twitches and jerks. I don't like it when a kind stranger on the bus asks if I'm alright, or when I accidentally hit someone with my arm.
On the flip side:
- I understand that starting anticonvulsants is a long, long road.
- What if, in 5-10 years, I want to get pregnant?
- Side effects? Drowsiness, weight gain, etc?
I would really, really appreciate any advice, stories, etc, any of you might have. It's a big decision for me to make, and I want to make sure I've covered all my bases before I commit to anything.
Thanks for reading my super-long story!!
Una