Any new treatments for Myoclonus?

[AndrewIrish]

I have known for years now about pericetan, magnesium and Neurofeedback but are there any other new(prefarably cheap) alternatives? The jerks don't bother a lot of people but overt the years I have realized I have one of the most severe cases of it from anyone I have ever talked to. It has deteriorated to the point ai can't hold a conversation anymore if it is longer then a couple minutes. I end up jerking and sputtering and my speech gets thrown out in clips and I get massive headaches. I know I'm in the minority in kicking up such a fuss about it always but has anyone ever found the jerks to be severely disabling like this or am I just a special case? These jerks can effect my entire body but usually my arms shoulders and neck and often they knock me to the ground. I feel like no one in the medical fields takes myoclonic jerks seriously when I am a living example of how horrible and detrimental they can be in certain cases. Aww... and on this note to explain my situation with these methods - I am of the understanding Neurofeedback is out of my price range, magnesium didn't work and I have not been able to find pericitam. I am seeking an over the counter or alternative treatment that is economic that doesn't require a doctor.

 

[AndrewIrish]

Also I was diagnosed years ago with JME but in doing some research is it possible I have Progressive Myoclonic Epilepsy and if so what's the difference between the two epilepsies As I understand it I have Action myoclonus but I don't know if that's a factor. The more and more I read I begin to think I have PME but the main component in that is "neurological declin" or dementia. I am 25 and I don't feel "demented" but would I even know if I was getting less "sharp" as years go by?

 

[AndrewIrish]

God the more I read about PME the more frightened I get. So what? If that's what I have no drugs are gonna work and I'll decline to the point where I can't "think" or "move?" I would become a vegetable? Jesus...I have read that in JME the jerks are early in morning or coupled with other seizures whereas in PME the myoclonus is deprecate from seizures and begins effecting speech and coordination which had happened to me... Fuck I really think I have some type if PME and I don't even have a doctor now... God...

 

[moongal]

Hey Andrew, I'm not sure if you're talking about what I had but used to get those jerks too as a teen if I didn't take my meds, especially in the morning I would drop things, spill stuff, sometimes it would even take the legs from under me. My doc has diagnosed me with JME. I am now 29 and my epilepsy has also developed into catamenial epilepsy. Andrew you seem to need to speak with a professional about this maybe you should go and talk with your doctor, neurologist or epileptic nurse about what is going on with you. Self diagnosis never helps and can cause a lot of anxiety. Keep yourself well Healthy mind means healthy body

 

[KarenB]

Ketogenic diet? Since you're an adult, probably would need to do Modified Atkins. But you could try simply reducing carbs and cutting out sugar and adding in a little fat just to see what happens.

http://www.ncbi.nlm.nih.gov/pubmed/16793577
Small study of 11 children with myoclonic-astatic epilepsy who had already failed about 5 meds.
5 kids dropped out in first 3 months (either diet didn't work, or were ill)
6 kids had good results: 18 months later, 2 were seizure free;2 had 75-99% decrease in seizures; 2 had 50-74% decrease in seizures. The 2 that were seizure free were weaned off all their meds, and eventually weaned off diet in several years, without any more seizures. The others were able to reduce meds.

http://www.epilepsy.com/epilepsy/keto_news_march07
This article summarizes some of the studies done on the Keto diet or MAD (Modified Atkins) with adults who didn't respond well to meds. Results good in at least half.

calcium supplements?
http://www.healthresearch.com/myoclonic.htm - written by Dr. Thiel, who is a naturopath
"While working with a child with both Down Syndrome (DS) and Lennox-Gastaut Syndrome (LGS), this investigator noticed that variations in his nutritional regimen (ketogenic diet with supplements), specifically supplements that were related to calcium changed the frequency of myoclonic seizures he was experiencing; this investigator also noted a similar pattern in a non-DS adult with myoclonic seizures.
"it was noted that too much magnesium seemed to increase the incidence of myoclonic seizures"
After playing around with supplements -- esp. dosage of magnesium and calcium, the researcher found that the (non-DS) adult with myoclonic seizures improved significantly without the ketogenic diet.

 

[Nakamova]

Piracetam is available -- you can order it on Amazon. Another supplement that may help is N-acetylcysteine, which in one study was used to treat PME. As always with supplements, proceed with caution, and keep your doctor in the loop.

 

[Chaz1]

Piracetam, hmm..just looked this up 1st time. any users with experience?

Andrew, feel for you big time, worry same for my Son..he is 27. For back pocket..

The Monarch System - "external pulse generator and electric patches placed on the forehead"
http://www.neurosigma.com/index.html

 

[KarenB]

Piracetam mainly works as an adjunct med for myoclonic seizures by enhancing the efficacy of the other AEDs, but is sometimes used as monotherapy for myoclonics. It isn't especially helpful for other types of seizures although when used with adults with myoclonic seizures it DID also help with tonic clonic seizures in those individuals (in one small study).

We used Piracetam in the past, not for seizures but for cognitive enhancement, as Jon has Down Syndrome and also acquried aphasia from either seizures and seizure meds. It does help with verbal skills. He's not on it now because of all the other crap he has to be on. But the nice thing is that the side effects are mild and usually transient, if you experience them at all.

You do need to use quite a high dose for seizure control. It's used commonly in UK and throughout Europe, not FDA approved in States (except orphan status for myoclonus, I think) but as Nakamova mentioned, you can order it online.

Here's some studies on Piracetam & seizures:


A use of high dosages of piracetam in the treatment of Kozhevnikov epilepsy syndrome
http://www.ncbi.nlm.nih.gov/pubmed/18379510
Russian study, 2007, on Rasmussen disease. 6 child patients (9 to 16 years) who received 1 g per kilo body weight Piracetam per day (intravenous) up to 35 g/day. Treatment for 30 days.
Results:
3 became free of myoclonic seizures; other 3 received 75% improvement.
2 became free of focal clonic seizures; other 4 decreased in frequency
2 became free of secondary generalized seizures; other 4 had 50% or greater improvement
Neurological improvement in 5 out of 6
Hemiparesis intensity reduced in half of children.
Cognitive functioning enhanced in 5 out of 6

http://www.ncbi.nlm.nih.gov/pubmed/11346373
http://archneur.jamanetwork.com/article.aspx?articleid=779361
Canadian study, 2001. 11 (age 17-36) patients w/ progressive myoclonus. Initial dose 3.2 g/day, titrated up to 20 g/day. 12 month study. Significant overall improvement. 2 patients received dramatic decrease in tonic/clonic seizures. Side effects: 2 patients reported drowsiness in first 2 weeks of treatment. 1/3 of patients experienced gastrointestinal discomfort, but no diarrhea, and effect was temporary. Best effect when given as an adjunct with Valproic Acid or Clonazapam.

Piracetam in the treatment of cortical myoclonus
http://www.ncbi.nlm.nih.gov/pubmed/10338109
French study, 1999. 12 patients, double-blind w/ placebo. 7 year study. Dosage 7 to 48 g daily. Tolerability on long-term, high dose quite good. No serious adverse effects. “Marked and sometimes spectacular improvement” that continued for up to 7 years. Researchers recommend the daily dosage be increased until improvement seen (since tolerability is high). They also recommend usage as adjunct or monotherapy, and as first line treatment for cortical myoclonus.

Piracetam relieves symptoms in progressive myoclonus epilepsy: a multicentre, randomised, double blind, crossover study comparing the efficacy and safety of three dosages of oral piracetam with placebo.
http://www.ncbi.nlm.nih.gov/pubmed/9527146
Finland study, 1998. 20 adult patients. Doses ranged from 9.6 to 24 g/day. Study measured improvement in functional disability caused by myoclonus epilepsy, and found improvement in motor skills and other assessments. Improvement significantly related to higher doses, although significant improvement seen even at lower dose. Side effects mild and transient.

Clinical use of piracetam in epileptic patients
http://www.sciencedirect.com/science/article/pii/S0011393X05804072
Pakistan & Belgium, 1992. 60 patients with epilepsy (adult & child), double blind. 15 age matched control subjects. Prior to study and at conclusion, each subject tested for memory, intelligence scale, EEG, and neurologic exam. Piracetam enhanced cognitive scores for patients with epilepsy, did not interfere with AEDs, and enhanced performance of some AEDs.

 

[AndrewIrish]

I wonder... Do people without JME or PME ever experience the 'jerks' in the same fashion but in obscutia?

 

[KarenB]

Um...first, I'd need to know what "obscutia" means...

 

[Chaz1]

I am going to read ALL you provide Karen! Thanks a million.

Always a ray of hope here at CWE!