Any way I could reduce Myoclonic Jerks

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I don't mean perminately, I know that can only be settled through medication.
I get my Jerks most days, they don't always lead to full seizures.
I was just wondering if anyone has any tips to reduce them once they have started.

I mean if I am out somewhere and I need to get home without wanting to lay around for them to pass or for my seizure to come.
 
Medication is intended to help the jerks, too, not just the full seizures. If I'm interpreting your post correctly, it sounds like you don't take medication to control or reduce the jerks at all? Is this your choice, or have you run out of medications to try? What medication(s) do you currently take? Are the full seizures controlled or reduced with this medication? Are there triggers for the jerks?
 
I am on lamotrogine and topirimate.
I also take clobasam tablets, they help control the jerks.
Medication doesn't really control my seizures, it has been agreed that I am one of the few people medication doesn't work for.
The medication I take stops my seizures being so painfull, and means I wake up sooner.

But what I meant was when I get my jerks I sometimes get them for 10 mins, sometimes they just keep going until I get a seizure.

But if I catch them early on I take a clobasam tablet and they usually stop quite quickly. I just wondered if there was anything else I could do to help them stop once they had started.

- like people say to drink water upside down if you have hiccups. (does that explain it better)
 
Yup, clear now :)
You'll find a lot of people here are not controlled with medication, so you'll get lots of support and empathy in that respect.
I had more of a problem with random myoclonic jerks before starting keppra. Now they largely appear only following a strong seizure and sometimes before, and aren't as strong as they used to be at all. I find staying away from my computer and bright light helps, and avoiding doing anything that requires fine motor skills. Generally following a strong seizure I am unable to work or go out shopping (etc.) anyway because of the usual common post-seizure symptoms. Doing gentle stretches or a very light work-out sometimes helps me as well.
 
I can't really keep upright for long enough to do stretches or things like that. My legs give way and if I move my arms too much I tend to end up hurting myself.

My jerks have always been bad, but this medication is giving me a side effect of more jerks.
I am sticking to it because it is the least painful my seizures have ever been.

I just worry when I am out and I feel myself jerk and I know I need to get home - I don't really have the option to pop a pill and lay down ina dark room when I am in the middle of the street.

I just don't like scaring people haha
 
I don't know if these were myoclonic jerks or not but I had a time about 2 years ago that I would get twitches in an arm or leg that would go on for hours.

The first time it happened was almost like a tonic clonic but it wasn't. I wasn't even having a seizure. I went to the ER because my whole body wouldn't stop shaking. It did stop about an hour after and was sent home.

After that I would have parts of my body shake. Maybe my arm, hand, foot or leg. I couldn't get it to stop if I tried. They would shake for a maybe a few hours and it would happen several times a day.

This lasted at least 3 months. As time went by the shaking wasn't as bad, wasn't as long and didn't happen as often. Then one day it just stopped. They still don't know what caused it.
 
I think if I were you I'd talk to the neurologist again, and tell him/her your situation. Say you would prefer not to be taken off the current medications because they seem to partly help, and that you're wondering if another one could be added to better control the jerks. I was on Tegretol, made the jerks worse but the Tegretol seemed to be having positive effects on the full seizures so rather than lose that benefit, keppra was added. I'm not saying Keppra is the right one for you since everyone is different but under your neurologist's guidance be willing to try different medications and you just might hit on the "magic bullet" yet :)
 
Have you tried taking a magnesium supplement? It won't stop the jerks after they've started, but it might help prevent them or reduce their numbers. Magnesium plays a huge role in brain health as well as in releasing muscle tension. So it can potentially help with jerks, spasms, twitches, cramps of all kinds, and blood pressure (since the heart is a muscle too).
 
Ugh...I hate those myoclonic jerks.

I don't have any better suggestions, I just wanted to say hi - I, too, have JME. It's nice to meet people with my same kind of epilepsy.
 
My dear friend... I'm the King of CWE when it comes to trying to get myoclonus to lessen... I know what you feel... my heart goes out to you...
 
And funny as it is, I essentially have a PHD in Myoclonus... and this is the ironic part... can't get into it 'cuz I'm 'jerking' pretty well right now...
 
Have you tried taking a magnesium supplement? It won't stop the jerks after they've started, but it might help prevent them or reduce their numbers. Magnesium plays a huge role in brain health as well as in releasing muscle tension. So it can potentially help with jerks, spasms, twitches, cramps of all kinds, and blood pressure (since the heart is a muscle too).

I discussed this in my most recent examination with a Neurologist and he intimated that only in VERY high doses after about 6 months, would that provide any kind of benefit and he indicated there's not enough research to document that it does much at all. While some have sworn by it, the magnesium didn't work for me and it wasn't recommended by at least one physician - just my two cents, not to say ''nah, nah, nah' to Nak, lol (God Bless her)

Okay, realized I'm spamming the thread, so I'll try and work out the best options for myoclonus as I've researched them, my personal experience and what have you...

I have many triggers for my jerks... and I jerk 24/7... I get not wanting to scare people 'cuz when I jerk, I guess my face contorts and obviously I 'skip and stutter' on my words as I'm talking and it scares and confuses people and theyy look at my like I have two heads as I try to continue speaking... and failing to do it... have it happen everytime I talk baseball with a friend from work and he looks at me like an alien when I jerk... mine are violent too and I work at a desk and constantly smack things side to side and make a commotion and spectacle of myself... alas... here's what I know.

Pirecetam and Klonopin are the two VERY BEST medications to get a hold of to actually reduce myoclonic jerks - many general anti convulsants actually WORSEN myoclonus.... those two medications taken in conjunction with an convulsant are the magical package if you have a doctor and can get 'em...

Pirecetam isn't available in the US so I haven't tried it... but Klonopin works very very well... it's just not meant by design as a long-term solution.. but in relaity, there aren't any for myoclonus so absent a medication that 'abates it', I say take the lesser of all evils and get on Klonopin.... most doctors have a reservation to precribe it because it's a benzo and they're insanely addictive but frankly, if you want my opinion, I'd greedily absorb a dependency to a low active benzo(which it really is) rather then live with constant jerks... so a doctor might be really reserved in prescribing Klonopin, but I'd at least fight for if I were you and see how you did on it...

I was recently on Clobazam as well and it didn't do enough for me... was crazy expensive too...

Magnesium? If you're in for the long haul and don't have high hopes, start taking one thousand milligrams of magnesium citrate supplements daily and give 'em about 6 months to kick in and hope for the best......

Meditation/Workout: These actually, as I've been researching more, aren't actually productive to myoclonic jerks. The jerks are a result of too much electrical activity along certain neural pathways... that's why the best 'natural' cureall for anyone with myoclonus is to lay down in a dark room and try to... 'think of nothing.' And completely just not think of ANYTHING AT ALL... 'cuz the slower our thought proccesses get the less we jerk... it's actually focusing/fine motor activity/thoughts that provoke the jerks.

YOU ABSOLUTELY MUST GET 8 HOURS OF SLEEP A NIGHT: This goes double beyond a normal epileptic - because the jerks come out TENFOLD on ANY LACK OF SLEEP.

Caffeine? Kill it. If you're a coffee drinker, say cyanara to it. Tea drinker? Take it without sugar. You need tranquil things that slow down your mind.

If you're having a HELLISH day with jerks and you can stomach it, I actually advise drinking alcohol. Get a mild buzz , enough to feel tipsy... when you're drunk, you probably won't jerk much at all... the hangover the next day is a lethral threat and risk, but if you have plenty of time to sleep, don't get much of a hangover and it's a really 'jerky' day, I say get drunk. That's going to be pretty blasphemous and controversial advice there but in that kind of limited situation, I think it's very practical.

I would avoid smoking marijuana. Some swear by it and as much as it's a 'depressant', I believe it also tinkers too much with some pretty fragile brain chemisty to begin with.. and it ramps up my own jerks personally 'cuz when I smoke, I get paranoid... I get paranoid? I jerk.

Best advice if you're on the go and don't have time to lay down in a dark room to answer your question? Prescription drug-wise, your best bet is Klonoopin. If you don't want to go the precription-route ; drink a couple beers. That or take some OTC sleeping pills in very low dosage.
 
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I hear you about the magnesium -- it doesn't work for everyone. But there's plenty of research showing it can help with a variety of muscle-related disorders, and there have been studies indicating that it can play a role in seizure control as well. It's cheap and easy to try. Even better if you can get it from your diet (green veggies, beans, whole grains, nuts and seeds are all good sources of magnesium), and avoid things like sodas that wash it out of your system.

http://www.ncbi.nlm.nih.gov/pubmed/22547512
http://www.ncbi.nlm.nih.gov/pubmed/7852227
http://www.ncbi.nlm.nih.gov/pubmed/18399283
http://www.ncbi.nlm.nih.gov/pubmed/8879973
http://www.ncbi.nlm.nih.gov/pubmed/1566765
 
...
I was just wondering if anyone has any tips to reduce them once they have started.

I mean if I am out somewhere and I need to get home without wanting to lay around for them to pass or for my seizure to come.

I'd suggest you check out:

[ame]http://www.amazon.com/exec/obidos/redirect?tag=projectmana0a-20&path=tg/detail/-/0802774652/ref=ase_projectmana0a-20?v=glance&s=books[/ame]

It describes some CBT techniques that might be helpful in "short-circuiting" seizure patterns. See also:

http://www.coping-with-epilepsy.com/forums/f22/has-anyone-used-will-power-stop-seizure-1289/
 
This post may contain affiliate links for which Coping With Epilepsy Forums may be compensated.
I hear you about the magnesium -- it doesn't work for everyone. But there's plenty of research showing it can help with a variety of muscle-related disorders, and there have been studies indicating that it can play a role in seizure control as well. It's cheap and easy to try. Even better if you can get it from your diet (green veggies, beans, whole grains, nuts and seeds are all good sources of magnesium), and avoid things like sodas that wash it out of your system.

http://www.ncbi.nlm.nih.gov/pubmed/22547512
http://www.ncbi.nlm.nih.gov/pubmed/7852227
http://www.ncbi.nlm.nih.gov/pubmed/18399283
http://www.ncbi.nlm.nih.gov/pubmed/8879973
http://www.ncbi.nlm.nih.gov/pubmed/1566765

Yea, I understand ya.

Just trying to frame a realistic goal concerning it - when I first heard about it, I thought it wa ssome kind of miracle cheap drug and it wasn't the case... just trying to help keep expectatiions in line....
 
No, not a cure-all, unfortunately. I guess that would be too easy.
 
Its a pain in the arse when I have got all dressed up to go some where and I start getting them.
I stay at home enough as it is, you'd think that when I was spending the day with my friends they would chill out.
 
Your mileage may differ ...

Zonismide halved my Myclonics but when they increased my meds I got a serious case of the brain cooties (irrational thinking).

Clobozam was used as a rescue med so they could suddenly cut the increased Zonismide completely knocked both me and the jerks on my arse but couldn't function, as a benzo it was short term at 20 mg withdrawal was meh.

Would second getting plenty or sleep and reviewing yOur meds.

Good luck

Q
 
JME that is hard to control

Hi there,

My daughter is 18, diagnosed with JME three years ago. It's been a long haul, too many doctors, uncontrolled seizure activity, not being able to live a normal life. I've heard this is the best type of epilepsy to have but that's not been my experience.

I'm not extremely happy with doctors so far. I got the name of an epitologist 2 hours away. What's been your experiences with epitologist as opposed to neuro? Should I keep searching for answers or throw my hands up. I'm truly tired and so is she.

Thanks for input! Very disappointing disease!
 
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