JME question
- Thread starter chop456
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guitarlady
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Hello,
I too was diagnosed with JME at age 15. I had a grand mal seizure and was then diagnosed with a seizure disorder. The drugs have changed so much and for the better. At age 30 I went to an epileptologist...a neurologist who specializes in epilepsy. That is when I was told I have JME. I have been doing well I went to college, Became a radiologic technologist, married, had 3 children and I still work till this day doing mammography. My point is that you can live a normal life. It's important to not miss taking medication. I did notice that when I had the jerking in my hand and if I was holding something I would drop it. I learned that that may be a pre cursor to a seizure. I never had more than 1seizure a year sometimes I would have 2. I was very lucky. Now with new medication I have been seizure free for 18 years. If you have any questions feel free to ask. My best piece of advise is go to a specialist..an epileptologist. Any neurologist can treat epilepsy but go to someone who only does that. I have been in the medical profession for 30 years. Good luck
I too was diagnosed with JME at age 15. I had a grand mal seizure and was then diagnosed with a seizure disorder. The drugs have changed so much and for the better. At age 30 I went to an epileptologist...a neurologist who specializes in epilepsy. That is when I was told I have JME. I have been doing well I went to college, Became a radiologic technologist, married, had 3 children and I still work till this day doing mammography. My point is that you can live a normal life. It's important to not miss taking medication. I did notice that when I had the jerking in my hand and if I was holding something I would drop it. I learned that that may be a pre cursor to a seizure. I never had more than 1seizure a year sometimes I would have 2. I was very lucky. Now with new medication I have been seizure free for 18 years. If you have any questions feel free to ask. My best piece of advise is go to a specialist..an epileptologist. Any neurologist can treat epilepsy but go to someone who only does that. I have been in the medical profession for 30 years. Good luck
I don't think my daughter had any myoclonics before her first TC. Something was going on beforehand that we were unaware of - Absences, I think. I only recently learned that teachers in her primary school made comments like was she "on drugs". (Yay, wish they'd bothered to mention this to us).
Her first TC was in March 2008. She had another six months later then all quiet until 2012 when her seizures returned, which is when she was put on lamotrigine. She has only had one or two TCs since. A meds increase seems to have got the absences under control as long as she gets enough sleep but the myoclonics have got worse (as can happen with lamotrigine).
Her first TC was in March 2008. She had another six months later then all quiet until 2012 when her seizures returned, which is when she was put on lamotrigine. She has only had one or two TCs since. A meds increase seems to have got the absences under control as long as she gets enough sleep but the myoclonics have got worse (as can happen with lamotrigine).
I was diagnosed with TLE at 17 had full control in my mid 20's after a couple of years was weaned of meds and was 10 years seizure free. 2 years ago I had a breakthrough T/C seizure but I then started having myclonic seizures, which I had never had before, so I was diagnosed with JME at 37 which I think is pretty old for juvenile anything. But, to your question I had T/C's long before myclonics.
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chop456
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I ask because my daughter has had myoclonics for 3 years but not had a grand mal to date. It seems much of what I have read says that JME begins with myoclonics and progresses to a grand mal a few years after the onset of the myoclonics. I am hopeful her medication will keep the grand mal away.
Fingers crossed for you and your daughter, Chop. As ever, very little is "typical" with epilepsy so it isn't a given that she will ever have a tonic-clonic seizure. My daughter's No.1 trigger is lack of sleep, followed by stress, which does seem to be pretty classic for JME, so guard against those.
Do you mind me asking what meds your daughter takes?
Do you mind me asking what meds your daughter takes?
chop456
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Jane ... Her triggers are the same! Lack of sleep for sure. Stress is up there. She also has some photosensitivity. I agree .. No typical path for epilepsy. We have our plan in place if and when a grand mal should appear.
She takes 250mg lamotrigene extended release. I also pursued diet changes and Paige follows the MAD protocol. She has been following the diet for 15 months with a slow and steady increase in carbs.
What meds does your daughter take?
She takes 250mg lamotrigene extended release. I also pursued diet changes and Paige follows the MAD protocol. She has been following the diet for 15 months with a slow and steady increase in carbs.
What meds does your daughter take?
Rosie is on lamotrigine too, Chop. She takes 200mg a day (not the XR version), having gone up from 150mg a few months ago, the increase being due to having quite a lot of absences.
She was also diagnosed with photosensitivity but despite that lights don't seem to affect her - she is 18 and a big music concert-goer. Her initial diagnosis was idiopathic generalised epilepsy but last year I realised it could probably narrowed down to JME.
Lamotrigine has probably increased her myoclonic jerks but she has decided to live with that given it seems to work pretty well for everything else an that it seems to be one of the least "nasty" AEDs x
She was also diagnosed with photosensitivity but despite that lights don't seem to affect her - she is 18 and a big music concert-goer. Her initial diagnosis was idiopathic generalised epilepsy but last year I realised it could probably narrowed down to JME.
Lamotrigine has probably increased her myoclonic jerks but she has decided to live with that given it seems to work pretty well for everything else an that it seems to be one of the least "nasty" AEDs x
about a year . When I was 15 my left hand would shake for one second once in awhile and Id feel weird . I was worried about it and thought "brain tumor" but shrug it off , was at an age when death seems impossible . Then I had a gm. and was relieved to know what it was ,well, ..I couldn't look into the future . I thought eat a pill youre cured! ha ha .