Does Juvenile Myoclonic Epilepsy go away?

[irish71]

I was 'diagnosed' with Juvenile Myoclonic Epilepsy when I was in 8th grade. This was due to a tonic/clonic seizure I had randomly during school one day, which I believe was provoked by stress brought on by finals week. For a couple weeks before hand I had been getting those jerks/twitches in my arms, but with no family history I thought nothing of them. I barely ever get them anymore and I'm now a freshman in college.

ANYWAY...shortly after I was put on the Lamictal regimen and 'diagnosed' with JME, although he could never really pinpoint my disorder. This was not enough, apparently, since I had more jerks and another seizure approximately a year afterword. So my crazy doctor added on Zonisamide. Thought everything was fine until a year afterword (10th grade) when I got my third. Had to up the lamictal to crazy amounts (thought I was for sure going to get SJS). And yet, I got 1 more seizure that summer. I thought I was cured since I didn't have a seizure again! (until a friggen week ago...). It was prob because of not taking my meds sometimes and fluctuating my levels b/c of living in a dorm/crazy college life (Docs then put me on Lamictal XR so I only had to take it at night). Could this seizure I had be due to the 'JME'? Or is it because I fluctuated my meds/did was college kids normally do in combination...?

Sorry for rambling, I just DO NOT want to have to take meds for the rest of my life

 

[Nakamova]

Hi irish71, welcome to CWE!

Below is some googled data on JME that might be helpful:

Risk of recurrence is more than 80% if anticonvulsants are withdrawn during adolescence or adulthood, even after many years of complete seizure control with low doses of appropriate medications.
Life-long treatment is usually necessary. However, treating a patient older than 60 years with this condition is rare. Whether JME spontaneously remits after a particular age is uncertain. Rare cases of late-onset JME have been reported as late as the eighth decade of life.
According to a long-term population-based study of patients with juvenile myoclonic epilepsy, between 1977 and 1985, the 24 patients in Nova Scotia who developed JME by age 16 years were contacted 25 years later. In 17%, all seizure types in JME had resolved; in 13%, only myoclonus persisted.

So basically the answer is... it depends on the individual and is tough to predict. It is definitely the case that taking meds erratically, or going off of them too fast can trigger seizures, so that could be what happened in your case. The stresses of being a freshman in college could also be a factor. If you can, do your best to be proactive with your overall health -- take your meds consistently, get enough sleep, eat health balanced meals -- and that will make it easier to evaluate if the meds are doing what they are supposed to. If you think they aren't, contact your docs about adjusting your dosages or trying a different meds. Often fairly low doses do the trick for people with JME, but some people do require more than one meds, and what works for one person may not work for someone else.

 

[RobinN]

I know someone whos daughter was diagnosed with juvenile myoclonic seizures and had many throughout the day. She is seeing an impressive reduction in seizures while strictly following the modified atkins diet.