can you get Juvenile Myoclonic Epilepsy as an adult?

[Abynorml]

When I talked to my new neurologist Wednesday and told him about my myoclonic jerks and the seizure I think I had last year he said it was possible I had juvenile myoclonic epilepsy, but I thought it was something that mainly happened to younger people, Ive noticed the jerks for the last few years, and Im 32, is it possible the primidone Ive taken since I was 22 for essential tremors, masked the juvenile myoclonic epilepsy? Or possibly my marijuana use, I know some people like a family member who self treat epilepsy with marijuana. I have noticed since I quit the marijuana for the last few weeks the jerks are worse than ever, but maybe thats just cause of the increased anxiety? From what Ive read on the threads on juvenile myoclonic epilepsy, I do fit some of the criteria, a family member with generalized epilepsy,(she had tonic clonics) I get the jerks when I wake up and when I am sleep deprived, or have to much caffiene, and last year I experienced what by description was a tonic clonic. So I had yet another sleep deprived EEG this week get the results a week from now, I had a few good jerks during it, even one that made both my legs give a good kick, and made the tech stop mid sentence for a sec, so Im hoping it finally shows something, the last EEG I didnt have any jerks, but I was on Primidone and Topamax and I think I was just to medicated to show anything.

[lureswinger]

i suffer from myclonic jerks and i am 43 these usually happen either first thing in a morning or if i forget to take my tablets can continue most of the day they drive me nuts sometimes i find its a sign of bigger things to come

[lureswinger]

btw like the feskies

[Abynorml]

Thanks those were my first three, my stooges! I got two deaf ones now, they make me laugh cause I still talk to them like they could hear me.

Sometimes I get what could possibly be auras too, a weird feeling, in my head, kinda like when you get a sudden elevation change, its similar to when I came off of Paxil 10 years ago\ and had the brain Zaps (talk about hell!) but not as severe, and different just weird and unsettling.

[Abynorml]

And the jerks arent always that bad sometimes there barely noticable, but they are distracting and unsettling and once in a blue moon I drop stuff, my poor dishes.

[Abynorml]

Was just reading the age of onset can vary from 6 to 36 years of age, this is starting to look like a probable cause of my symptoms. I hate having to wait for results from an EEG.

[lureswinger]

get used to it ive smashed loads of dishes.
i was once sat in my conservatory at the computer about to open a bag of sweets and just as i pulled the bag open i had a myclonic jerk,
well lets say the dogs thought all their christmasses had come at once lol

[Abynorml]

I have kinda gotten use to it, I've had good and bad days with the jerks for years now, I'm just concerned that I find the cause, if indeed it is juvenile myoclonic epilepsy I need to do what I can to avoid another seizure, I was lucky last year my general MD didn't report me to the DMV, I commute to work it's about an hour and a half drive, if I lose my license I lose my income, and i worry about my career, it's stressful and the hours are long and change alot so I often get sleep deprived and rely on to much caffiene, and ofcourse all that stuff aggravates the jerks, I'm afraid it will cause a tonic clonic one day while I'm driving or working somewhere dangerous up high, or in the middle of a show. I'm worried about the rest of the month, this is my last real day off starting tomorrow I work every day till like March 8 or so, and I worry to much! I quit marijuana 3 weeks ago for a pre-employment drug test and marijuana was great for my anxiety, now I worry of I'll be clean enough long enough for the hair test at the end of the month, if I lose this job, I'll have really bad hours and be back to getting up at 4 am to work 16 hour days with only 8 hours off at times, and I don't think my body can do that anymore. Specially commuting back and forth. I'd either have to move to the city, lose a crap load of money on my house, or find a new line of work, in a small town with very few jobs.

Sorry just needed to rant and vent a little.

[lindsm66]

Hi there,

I came across this thread and my son has juvenile myoclonic epilepsy - he was just diagnosed last year and is 15. But, I have done a LOT of reading to figure out what we were dealing with and what the future might look like. In my reading I came across quite a lot of people who were diagnosed in their 20s + or correctly diagnosed having been misdiagnosed for years.

It sounds like you have some other things going on with anxiety etc and you are right some of what you have been taking could have masked the jerks etc. Topomax is one drug that is used to treat juvenile myoclonic epilepsy. While the marijuana might have helped the juvenile myoclonic epilepsy plus other issues - the problem now is it complicates the true diagnosis/determination of what the meds were truly doing - so I guess it's good you're off it right now.

Here's the good thing - juvenile myoclonic epilepsy is often under or misdiagnosed. It is unfortunate because in many cases it is actually very well controlled with medication. Of course every age is different and every brain is different but right now my son is controlled on 1000mg of Keppra daily. He does have to make sure he has enough sleep etc but he seems to be doing pretty well. He had twitches he never told me about (were never obvious) and has had one observed Tonic Clonic seizure - he was diagnosed a week later via an abnormal EEG. He has not had another seizure and his twitching is gone (he tells me)...fyi his legs still twitch slightly during medical procedures but they are telling me that is just anxiety not the epilepsy (only the EEG will tell). He does have anxiety issues too and always has.

So - if you can get a handle on this you can likely really improve your quality of life. You may need to be on more than one medication to treat your anxiety as well as the juvenile myoclonic epilepsy (assuming that's what the EEG shows).

Hope this is helpful! Hang in there!