New...curious about Juvenile Myoclonic Epilepsy

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Ella

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Hey, I am new to this site...new to any epilepsy forum actually. I'm 24 and have juvenile myoclonic epilepsy.

I've joined this because I'm curious....I've never met anyone with epilepsy before. Except my aunties who also had it. Or at least I've never met anyone who said they had epilepsy.

Does anyone else have juvenile myoclonic epilepsy, how is it affecting your day to day life?
 
Hello Ella,

A big warm welcome to CWE.

My Son who is 26 has Epilepsy, diagnosed 2.5 years ago so around your age then. He has Tonic Clonic's and all types of partial seizures. Not controlled by medication at the moment (was for a long while) so we are back on the rollercoaster to get them back under control. Stress brings them on (can be positive or negative stress)

He is in final year of college, has part-time job, lives with his partner and though the seizures do knock him down all too often, we are always on the outlook for the positive...He takes supplements and is in NFB/Bio feedback therapy (Brian training) and is learning to recognize more and more what triggers seizures and slowly facing up to these (you kids are young and he big time social dude).

How about you, do you take meds and your seizures and well controlled? When were you diagnosed? Coping well?
 
Hello and welcome to CWE. My daughter was diagnosed with JME about 3 months ago. She (Paige) is 14 and we are finally up to her therapeutic level of meds - lamictal XR. I have found this site to be a wealth of information and support. Are you on meds? How are things going? Again, welcome!
 
I am coping very well, recently my only issues have been difficulty concentrating some times, and very slight myoclonus. I was diagnosed when I was 11, so about 13 years ago. My seizures are controlled with lamictal.

I work and go to uni also. 24 is an unusual age to discover epilepsy I think, what brought it on? It sounds serious, does it affect his studies or his job?
 
chop456, things are going well. I am on lamictal also. I saw a neuro psychiatrist this week and he told me I had juvenile myoclonic epilepsy, which I didn't know, though I have known I had epilepsy for years.

I think lamictal is the best medication. I have been on different ones over the years and had bad side effects but when I changed to lamictal when I was 22 my life improved dramatically - work, uni, friends.

I want to do a graduate program next year in business, so at the moment I am just about to start slightly increasing the lamictal to improve my concentration. How is your daughter coping?
 
Thanks for asking about Paige. It seems that her body is adjusting to the lamictal. She has had some dizziness when the dose has been increased. She is leveled off now - 200 mg every morning. Paige was very aware something was going on when the myoclonics started and we had her to the doctor only 3 weeks after she mentioned the morning jerks. The EEG showed "classic JME" and was started on lamictal. She has not had a T/C but the EEG did show 1-2 seconds bursts of absence. We had no idea she was having abscene - never saw them.

Paige is running track, plays tuba in band and sings in choir. I am hopeful when I hear of people such as yourself managing university, work and life in general. We are still relatively new to this and I am trying to let Paige have her independence yet still being cautious. She is going to Washington DC on her class field trip without her dad or I. Makes me nervous bur I know she is in good hands. I am glad you have found CWE and hope to keep in touch!
 
while were on the subject, is it common for someone with JME to have occasional simple partial seizures?
 
I don't know anything about simple partial seizures. So no, it's not common that I know of
 
Abynorml,

"is it common for someone with juvenile myoclonic epilepsy to have occasional simple partial seizures?"

absoutley - yes.
 
Welcome to the site Ella, this place is great for info.

Thanks Chaz, I couldn't find info saying the two could manifest together, it looks more and more like that's what I got, a few years ago I didn't know what myoclonus was till a neurologist noticed, and asked if I jerk a lot, I'm on Primidone for them, since being raised to 300mg a day, I seem to be jerk free "YAY" he also put me on klonopin as needed. Last month the dosage he had me on wasn't enough, the stress and
Lack of sleep plus lack of oxygen on a plain gave me two simple partials, on two different flights, I've had one T/C that I know of(I live alone), apparently if the myclonics get bad enough they spread and can generalize, or become partial seizures.
 
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I am not sure about simple partial seizures and JME. What I can tell you is that Paige's neurologist mentioned that there are 3 types of seizures (potentially) involved in JME - absence, myoclonic and tonic/clonic. If I am not mistaken, JME is classified as generalized epilepsy - whole brain is effected. I would be interested to learn more if partial seizures can be related to JME.
 
Sorry, I should rephrase.

Sometimes the electrical charges spread resulting in a change in seizure type and frequency.

Abynorml, definitely run it by your neurologist
 
Hey,

I'm 24 as well and have JME.

Welcome to the board. I was diagnosed several years ago but have been untreated for lengthy periods of time in between due to bad circumstances. I've had several TC's and my myoclonus until recently has been tremendously severe. I'm now on a mixture of valproic acid and ativan which has helped my jerks out a ton. The valproic acid causes me terrible heartburn and the ativan is pretty much causing me to have an addiction to benzos, but on the plus side - seizure free pretty much now.

I can also confirm the pattern of JME. Whenever I have a TC, it's preceded by SEVERE, BAD myoclonus which travels across the nervous system generally which morphs into a TC which is typically due to lack of sleep or stress.
 
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