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Myclonic Epilepsy

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I have had as what I call muscle jerks from a young teen. Never paid much attention to them until I got a little bit older in my early twenties; of course I did alot of drug abuse which made them worse. I went to a doctor when I was 25 due to falling down in the shower due to my legs jerking. The doctor told me it sounded like JME; I did a little research on it and decided that is what is. He also told me drug abuse would bring it on worse so I stopped the abuse besides the occasional marijuana to help with my sleep. My dad has muscle jerks as well but not as severe; he still has them and he is 70. I decided to not take any prescriptions and to just watch my sleep habits. I have trouble sleeping and often take tylenol pm to sleep at night.

I am now 30 and recently have been having muscle jerks quite regularly due to my sleep schedule being messed up and or stress. I started a job in April (quit smoking before the job in February) and worked strennous hrs with hard work for about a month with no jerks. Ended up taking a different job at the place that had audio stimulation from a headset while lifting heavy objecta. This job had the stimulation for 10 hrs a day 4 days a week with stress caused to meeting a goal. I ended up having a muscle jerks for what felt like 2 hrs worth in 1 day; I ended up pushing myself to finish the "store" I was on that ended up caused me to black out. The supervisors came to me asking me all kinds of questions like what are you doing in which case I was like I'm trying to work. I had a cut on my hand due to a jerk which I didn't know about. They ended up sending me home and said see a doctor before you can return to work. I have yet been back to that job to work and have seeked a less stressful and strennous job with no luck.

I ended up going to the doctor that I saw back when I was 25. We ended up doing all kinds of test MRI/EEG. The MRI came back fine but the EEG had some irregularities. He decided to put me on Depakote (1000mg) took it for about a month and still had jerks so he decided to put me on 2000mg which caused high nausea. He bumped me down to 1750mg and after about a week of that I had serious depression so I stopped taking it. The doctor ended up sending me to a seizure specialist in which case he thought I had myclonic epilepsy. He said there was no real cure for it and that I might grow out of it. He also said that it would be trial and error with medication that is out there since Depakote didn't work for me. The timeline for me jerks are: early teens (muscle jerks in my arms; not severe at all), early 20's (more jerks in my arms and the one time of falling down), 30 (same jerks as my 20's in my arms, more jerks in my legs and jerks in my jaw. I can usually tell when my sleep schedule is messed up; jerk in my jaw (I'm ok just know I need to go to bed a little earlier), jerk in my arms (need to take something to sleep thru the night to get more sleep or take naps during the day), all 3; jaw, arms, legs(need to sit down and relax watch a movie or take a nap in the next couple of hrs.

I decided I didn't want to be on pills the rest of my life. I haven't been on Depakote for about 2 months now and can manage the jerks with a steady sleep schedule. Of course I started taking sleeping pills to manage the sleep and stopped taking when I started to smoke again about 4 months ago. I quit about a month ago and have been cold turkey; just trying to really push myself with work I can do on my own daily. I had trouble sleeping last week for about 4 days and I could feel the jerks coming on. By the 3rd day of barely sleeping and the occasional jerk I broke down and got 4 advil pms. I took 2 at 8pm fell asleep great but woke up at midnight and took 2 more in which case took 2 hrs to fall asleep; slept maybe a couple of hrs. I ended up only getting 6 hrs of sleep. In which case having minor jerks that led up to me throwing things with my arms and once with me legs jerking. At the time I was a little depressed and anxiety and or stressed caused by not having a job due to the jerks. I ended up taking 1mg of Xanax which caused the jerks to slow down to a minimal in 3 hrs and allowed me to sleep. I ended up falling asleep after 3 1/2 hrs and got 5 hrs of sleep with no problems. Woke up with no more jerks for the rest of the day and slept great that night with no aide.

I have been taking Melatonin to help with my sleep bout 2 days ago. It helped with the first night but definately not the 2nd night (now). Had a extreme nightmare (don't know if caused by the herb or not), but I can't sleep now. This is my first time on this site so I'm looking for more people like me that have found aide in herbal remedies rather than the docs advice. I'm now starting to wonder if I have a sleep disorder or should I just get prescribe Xanax or benzodiazepines to help with my sleep. I don't want to file for disability due to the limited restraints it causes. I am wanting to go back to school but want to get this under control before I start. Any advice would be appreciated.
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replied December 18th, 2011
Was your EEG a sleep-deprivated EEG performed on awakening? Did you sleep during the test?
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replied December 18th, 2011
No I was awake during the test and wasn't sleep deprivated.
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replied February 15th, 2012
Hi, have them as well.......some days lots of jerks, and other days none. No luck with doctors or drugs. Actually just put up with it.
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replied March 21st, 2012
Experienced User
I was first diagnosed with epilepsy when I was about 13, when I started having Myoclonic Jerks. These would take the form of Jack Douglas in any of his roles in the "Carry On" films (something, incidentally, I always found highly offensive).
I was given all sorts of different types of medications (I was even prescribed Sanatogen Tonic Wine at one point), but nothing worked. Then, they tried me on Epilim, which triggered my first Grand Mal attack. I was immediately taken off of the Epilim, and was returned to randomly trying out all the different meds that were available, and various combinations of the same, but still, nothing worked.
Eventually, a neurologist wanted to try putting me on Epilim again - something I was NOT happy about, because of its previous history with me, but I went through with it anyway, and amazingly it brought me under control to such a level that I only have attacks once every Lunar Month (4 weeks).
I have recently had my prescription changed to Epilim Chrono, but whether or not it will make any difference remains to be seen.
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