Myoclonic Jerks/ Triggers for?

[drummerchica02]

So I've had simple partial seizures (Jacksonian motor kind...messes with my speech and goes down the right side of my body) for a few years now, controlled with 3000mg Keppra since late spring of '08. Well this summer, while I was taking generic Keppra (which we knew didn't work well for me and finally got back on brand name in August...long story) I noticed a new thing. I get these jerks, like a cold chill on steroids, that affect my neck and mainly my arms. Anyways, they didn't go away when the meds were regulated and kept getting more frequent and stronger. When I saw my new neurologist (I moved), he said they were probably myoclonic jerks, ran some blood work that I haven't seen the results for yet, and prescribed generic Klonopin .05mg at bed time. Well, I've been on that for over a month now and they still appear, often. I've noticed that they seem to happen more often when I'm playing drumset. I'm the drummer for the praise band at my church and we practice one night a week. In between songs, and especially after ones that require a lot of energy and concentration, my jerks go crazy. I was wondering if anyone has any idea why they might be happening more during band practice than any other time? They happen other times, of course, but they are more likely to appear in clusters during practice. Also, I go back to the neuro in February, and was wondering if this was something worth mentioning?

Now that I think about it, my simple partials (when not controlled by medicine) happened a lot at the end of band practice, as well. Thanks for any insight you guys might be able to give.

 

[flinnigan]

I had minor ones years ago that only happened when I was going around a sharp turn on the highway and as a child when I changed suddenly direction while walking. One Dr. blew them off but then I read about reflex epilepsy. This is an interesting link I found some time ago, see if it fits anything you're experiencing.

http://emedicine.medscape.com/article/1187259-overview

 

[flinnigan]

Oh yea the other one that really triggered them bas as a child was that silly parachute game they make little kids play in gym class where you hold a parachute and shake the balls around or try to run under it - I hated that thing. It still gives me the shivers thinking about it.

 

[AndrewIrish]

I'm there with ya...

I've actually got JME (Juvenile Myoclonic Epilepsy)

My 'jerks'(twitches of my arms, legs and sometimes my whole body, even...) have a very specific trigger, mostly.

That being concentration and calculation.

I can't really do math, absolutely can not play chess or any other game which involves deep strategy and a contemplation of what to do next.

I can imagine that when 'drumming' you're constantly trying to stay 'in tune.' That requires calculation of exactly the moment when to strike the drum and you have to have it in your mind what you're doing next.

Sounds as if you're in the same boat as me. If you're not careful, especially when they come in 'clusters', I think you're at a deep risk of having an absolute Grand Mal - at least, that's how it is for me.

I've found when I'm jerking, my body is absolutely sending up warning flares that I'm over-exerting myself.

My suggestion? It's horrible... I don't want to say it... but give it up.

I've had to give up a lot of things I love (Chess, for one... pretty much.... shit, anything...) to go about life. I'm untreated though right now, not on a diet and have had a couple people mention taking Magnesium in different forms, yet everything I've ever read and doctors I've talked to have said - the 'myoclonic' jerks, no real overcoming them. If you have them as regular as me (many,many times a day...), frankly you need to just start giving up things which are your 'triggers.' Sad, unfortunate, but for the time being until you find a way to control them or a solution, you need to stop before you allow those jerks to become overly bothersome or even evolve into something worse on a more permanent basis.

I've no real knoqledge, I'm not an expert - just my opinion but trust me - I absolutely know your pain. It's horrible, it's frightening and if people catch you doing it, it can be embarassing, especially in public in a band.

I say, give it up, try to overcome it slowly.

 

[DLThrasher]

drummerchica02... My son is a drummer too. I think that if he had to give it up it would devestate him. I understand how passionate musicians are about what they do.

Have you tried doing a search on calming the nervous system? f you do that, please be careful and thorough in your search. Some of the herbs that are suggested could trigger seizures in some people.

I have found that chiropractics and accupuncture, take Vit B and other supplements have helped my daughter.

 

[Bernard]

Piracetam

 

[flinnigan]

Hey AnrewIrish, Love that name by the way. You should check out that link I posted also it talks about just that concentration induceiong seizures. My father was an amazing thinker,he was a chemist and would write out the most amazing mathmatical formulas. He reminded me of the man in "ABeautiful Mind" Here it is again.


http://emedicine.medscape.com/article/1187259-overview

 

[matchu]

I get the jerks in my arms, head will jerk to the side and body jerks as well.
Sometimes I will make noises as well. It is as you described... chill/jerking like a shiver but more violent.

 

[Abynorml]

What aggravates my jerks the most is lack of sleep and cold, sometimes a good work out. I also found out last year the hard way that the supplement 5Htp can greatly aggravate Myoclonus, to the point I think it triggered a full tonic clonic seizure, I cant be sure, the doctors never agreed on that one, hell one of them argued weather or not I had myoclonic jerks, but I didnt have any major problems after about a week of being off the 5htp. A year later Im doing pretty good, though the season seems to have retriggered the jerks a little, that and the stress of work and relationships and lack of sleep. I have Essential Tremors too, its a neurodegenerative disorder that causes my hands to shake, I take primidone for it, and they seem to be aggravated by alot of the same things that aggravate epilepsy, mainly stress lack of sleep cold and poor diet.

 

[j.j.]

Could I ask if when you are having your jerks do they happen over a long period of time without it progressing into a seizure. I have sps left temporal lobe and have started with jerks which involves my right side,sometimes it progresses into an episode where my right leg contracts and goes rigid and I carry on jerking down my right side, I don't loose conciousness just go a little off. I am on 2250 mg Keppra.

 

[matchu]

I have experienced that before as well.

 

[j.j.]

Machu, Have you had a diagnosis for your jerks.I have not spoken to doctor yet about the jerks.

 

[matchu]

the only diagnosis I have been given was PNES.

 

[drummerchica02]

Thanks

Thanks everyone for replying. I'd rather have the jerks than give up drumming. I play with friends, anyways, and it never happens during a song...just afterwards. Now my jerks are just happening ALL the time. I saw my neuro, and he didn't say much, but just upped my Klonopin. He suggested some other meds we could try if this doesn't help (I think depakote was one), but is worried about side effects. I'm beginning to wonder if the myoclonic jerks are just something I'm going to have to deal with and laugh about.

**Warning, the following is partially just a rant about this because no one else really gets it***

Today, I had a rather upsetting event. I had a gathering I was supposed to play for with some musicians I'm unfamiliar with but songs I knew. We practiced for about an hour and a half when I started feeling weird. I took my meds (it was time for them) and drank some water. It was about that time that the world started to look a little fuzzy and my right arm started shaking. Everyone kept asking what was wrong, but I couldn't really tell them due to my speech slurring. Luckily, one of the guitar players goes to my church and knew what was going on. He told the guy in charge, and he and someone else helped me get to where I could lie down. Of course, once they found a private place for me, the sp was almost over. After resting a bit, I felt fine...but they wouldn't let me play for the actual gathering and didn't let me drive home. It was so frustrating!!!! Everyone was really nice and all...but I just wanted to cry. This is the first seizure (beside the myoclonus) since I've been regulated on the brand Keppra. I have no idea why it happened. (slept fine, ate fine all day...it was stressfull at school, but music is my stress release). The frustrating part is that I just saw my neuro on Tuesday, so I won't see him again until August. Is this something I should call and let them know about?

 

[Nakamova]

I think you should call. Anything out of the ordinary, a new kind of seizure, an escalation of seizure frequency or type -- all worth contacting your doc about.

 

[C0urt]

mine are actually caused when I relax, usally right after i quit ding something.
I did have one while having a hair cut yesterday. managed to pull my head away in time.

they also happene when I get nervous, and women