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Daughter diagnosed w/Juvenile Myoclonic Epilepsy
Fri, 01/28/2005 - 03:40Comments
RE: RE: RE: RE: RE: Daughter diagnosed w/Juvenile Myoclonic Epi
Submitted by Bonny on Tue, 2005-04-05 - 17:52
Hi everyone,
Robyn here i have JME and have had it since i was 12, im now 21. For the last 3 years i was successfully on lamictal with no petit-mal seizures which was great!!!
However about 5 months ago i went off the pill and thats when the seizures started coming back and all we can figure is that somehow it mucked up my hormones. Anyway New Years Day i landed myself in hospital, after having a series of quite full of myoclonic seizures i had a grand mal seizure, which i never have. I eventually went back to see my neurologist and for he as well as my usualy dose of lamictal, for the last month i've been on TOPAMAX.
However he wants to get me up to a dose of 200mg and that will take 2 months because it has to be brought in slowly, but so far i am only on 100mg, and the seizures havent stopped, and im also experiencing a lot of tingling in my feet, and a lot of dizziness especially at night when im trying to go to sleep. And if this medication doesn't work then he says that our last option is Keppra.
So i was wondering if there is anyone out there (especially 'hypnotiicxo' who i read her previous post who's topamax) that can help me by giving me any information they have on the side effects of topamax and keppra or just sharing their experiences.
Thanks
Robyn.
Hi everyone,
Robyn here i have JME and have had it since i was 12, im now 21. For the last 3 years i was successfully on lamictal with no petit-mal seizures which was great!!!
However about 5 months ago i went off the pill and thats when the seizures started coming back and all we can figure is that somehow it mucked up my hormones. Anyway New Years Day i landed myself in hospital, after having a series of quite full of myoclonic seizures i had a grand mal seizure, which i never have. I eventually went back to see my neurologist and for he as well as my usualy dose of lamictal, for the last month i've been on TOPAMAX.
However he wants to get me up to a dose of 200mg and that will take 2 months because it has to be brought in slowly, but so far i am only on 100mg, and the seizures havent stopped, and im also experiencing a lot of tingling in my feet, and a lot of dizziness especially at night when im trying to go to sleep. And if this medication doesn't work then he says that our last option is Keppra.
So i was wondering if there is anyone out there (especially 'hypnotiicxo' who i read her previous post who's topamax) that can help me by giving me any information they have on the side effects of topamax and keppra or just sharing their experiences.
Thanks
Robyn.
RE: RE: RE: RE: Daughter diagnosed w/Juvenile Myoclonic Epileps
Submitted by seanz51 on Sun, 2005-03-27 - 19:14
Maybe get a second opinion. Also, really ask her if the counsellor is helping her move forward in what she thinks the problem seems to be. I have JME, and became very withdrawn, ended up seeing a psychologist for 2 years, (which when I look back on it did not help me much.) This time could have been spent focusing on what the real problem was. Also find out if the reason she is not attending school is due to because she is depressed (or afraid) that she could have a jerking seizure at school; or because the side effects of meds/maybe the depression. These are 2 different things. Another thing I wish I would have done when I was going through a similar expierence was, I was depressed, i wish this was treated separatley from the epilepsy. I believe half the time I was so depressed I did not want to go to school. And try to salvage the school year as best you can.