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  #21  
Old 04-08-2013, 04:56 PM
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Originally Posted by AndrewIrish View Post:
I feel like I've found a like mind in you, lol.

I tried Magnesium once and it didn't work... but concerning the other 'myococlonically' effected here, whom it's severe for, had some results, I'ma go out and buy some Magnesium!
Increase the Magnesium and Stop the Vitamin D unless your MD has a good reason for you to do otherwise.
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  #22  
Old 03-30-2014, 04:45 PM
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Vitamen D


my son started to have seizers head jerking and eye fluttering also they tested him low vitamen D, ive done my research on this cause the GI put him on 50,000 iu and he flipped into a seizer that lasted longer than any of them no doctor listen to me on this so i took it upon my self to do as reccomend on the institute of medicine they have a scale on there site to show you level my son was at 23 so it stated for 150 lb person with that low need to take 2,000 iu hes 127 lbs but i have done that with him at night and so far so good. ive read too much vitamen D can trigger seizers but to low can too there has to be a balance. colnazapam is very addictive just remember dont stop taking it all together you can go into psychosis, seizers, panic attacks and more i was put on it for sleep when they kept upping the dose i said no more stupid me stopped.. i had to be put back on it and tapered myself done im off the beast i have nerve damage because of it just be careful with it.. we tried our son on it he got hives and alot of anxiety then we tried triptal he would crawl around and bump into stuff he couldnt see he doesnt have seiazers often like once or twice a month ive read metal and certain food additives can cause seizers too still digging good luck
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  #23  
Old 05-09-2014, 12:40 AM
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Hi, I too am plagued by these jerks. I have found a Myoclonus fact sheet explaining them , it is only 2 pages. Try NIH into google, or it's full title is National Institute of Neurological Disorders and Stroke. I fell asleep around 1am and was awoken 5ish by the radio still on,
now I cannot return to sleep otherwise I jerk. Good Luck. These things are sent to try us and by God they do !
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  #24  
Old 02-25-2015, 12:07 PM
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Myoclonic jerks


I have had these myoclonic jerks for several months on two separate occasions. On each occasion I took an antihistamine for allergies before the myoclonic jerking started. The antihistamines triggered myoclonus. I took the pills only once each time but it caused myoclonic jerks that lasted for months. On the first occasion the minute I started on the heavy duty (and bad for your ovaries) drug Depakote at 900 mg a day the myoclonic jerking stopped. Depakote is an anti-epilepsy drug and myoclonic jerking must be epilepsy related because the Depakote stopped the myoclonic jerking almost immediately. I would suggest not trying to fool yourself with vitamins, I tried those and they didn't work. The only solution is to accept that myoclonis means unusual electrical brain activity and to take your anti-epilepsy drugs. Keep in mind that this doesn't have to be forever as on one occasion I took the Depakote for only two months and the myoclonus did not return for more than a year and I was drug free for a year. If Depakote isn't an option I think that Tegretol, Keppra and Klonopin, other anti-seizure meds can help stop the jerking. In my case the jerking severely interrupted my sleep to where I got almost none. Not taking a drug was not an option for me.
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  #25  
Old 02-25-2015, 01:05 PM
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Originally Posted by Marshellette View Post:
I have had these myoclonic jerks for several months on two separate occasions. On each occasion I took an antihistamine for allergies before the myoclonic jerking started. The antihistamines triggered myoclonus. I took the pills only once each time but it caused myoclonic jerks that lasted for months. On the first occasion the minute I started on the heavy duty (and bad for your ovaries) drug Depakote at 900 mg a day the myoclonic jerking stopped. Depakote is an anti-epilepsy drug and myoclonic jerking must be epilepsy related because the Depakote stopped the myoclonic jerking almost immediately.
Yes, myclonic jerking IS a type of epilepsy, as are simple partial and complex partial seizures. Depakote is one of the many anti-epileptic drugs out there used for different types of E (and Bi-polar, BTW). I've also had a few myclonic jerks over the 30 + years I've suffered from E, but never tried Depakote. I have taken anti-histamines but they don't seem to bring on seizures for me. But Benadryl can bring on seizures. I was told not to take that OTC med.

Check these out for info about myclonic seizures and OTC meds:

http://www.epilepsy.com/learn/types-...lonic-seizures
http://www.epilepsy.com/learn/trigge...er-medications


Originally Posted by Marshellette View Post:
Keep in mind that this doesn't have to be forever as on one occasion I took the Depakote for only two months and the myoclonus did not return for more than a year and I was drug free for a year. If Depakote isn't an option I think that Tegretol, Keppra and Klonopin, other anti-seizure meds can help stop the jerking. In my case the jerking severely interrupted my sleep to where I got almost none. Not taking a drug was not an option for me.
Also, keep in mind that this is an individual thing. Just because Depakote works for your myclonic seizures, does not mean it works for everyone. Depakote is usually used for simple partial seizures and Tegretol is for complex partial and temporal lobe epilepsy. I use Keppra and I still have complex partial seizures.
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  #26  
Old 03-07-2015, 07:16 AM
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I am on tegretol for tonic clonic seizure since 10 years. It work really well . In december I had sleep myoclonus. My neurologist add clobazam to my med . It work. Before going on benzo, I tried Vit D , magnesium. Nothing work..
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  #27  
Old 03-08-2015, 02:46 PM
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There are a lot of kinds of myoclonic jerking that are not epilepsy, and there are kinds that are. Mild hypnic jerks are pretty common. I wish I knew the answer--increasing keppra and other meds, vitamin D, magnesium and potassium plus dietary changes have helped me reduce them a lot. But they have not made them go away, and for me personally, after 2 years of trying different things, different doctors, etc, I'm thinking they may never at this point. Mine are not only just as I fall asleep but often all through the night (and at one point, during the day) and often wake me up. Before I got off gabapentin I was actually getting physically fit from all the jerking around. I go through periods where I have none, and periods where I have them a lot. Supplements made a big difference for sure, and benzos worked but I will not take them anymore. I feel for everyone on here who suffers from them--while they aren't as 'severe' as tonic clonics, they can destroy your quality of life through sleep deprivation. Good luck to everyone!
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  #28  
Old 03-08-2015, 06:05 PM
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Originally Posted by lindsayschu2 View Post:
There are a lot of kinds of myoclonic jerking that are not epilepsy, and there are kinds that are. Mild hypnic jerks are pretty common. Supplements made a big difference for sure. while they aren't as 'severe' as tonic clonics, they can destroy your quality of life through sleep deprivation.
Yes, I'm not really sure if the ones I get at night are actual seizures or not (the occasional grand mals are pretty clear). I have actually kicked the dog out of bed more than a few times. He forgives me, thankfully but both of us end up sleep deprived on nights like that. I find that trans-dermal magnesium applied directly to the legs before bed really helps.
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  #29  
Old 05-09-2015, 03:10 PM
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help for the jerks


came across a thread form a Parkinson patients about how you can limit the movements with things like reading or anything that takes concentration.I always wondered why this happens sort of a the way DBS works for Parkinson patients,i t works well with me and being busy.The only problem is if im sitting to long when i get up I have to deal with some walking problems but not always.
Wonderd if any of you used these helpers.
Havn t had luck with benzies so far does it take awhile .
I do get some help though with ibuprofen.
Hope you all have a pleasant day.
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  #30  
Old 01-23-2016, 06:36 PM
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Hi. I am not a doctor, but I do have some potentially useful information regarding this subject.

From what I'm reading in these posts, you all sound like you're experiencing propriospinal myoclonus at sleep onset, and its generator is thought to be within the propriospinal tracts of the spinal cord rather than the brain. There are a few potential causes for this condition, but it can also be completely idiopathic. Potential diagnosable causes include tumors of the spinal cord, a few types of cysts within the spine, spinal cord injury, ruptured or herniated discs putting pressure on the spinal cord, degeneration of the myelin sheath caused by n2o induced b-12 deficiency, infections, etc...

Long story short, get the following tests done:

Blood tests for iron, magnesium, and b-12 deficiencies. Also test thyroid stimulating hormone levels to rule out hyperthyroidism.

EMG to rule out neurodegenerative disease.

If all else fails, see a neurologist that specializes in movement disorders, and have him/her do an MRI of the entire spine. If nothing correctable is found, the symptoms can be managed with clonazepam, valproic acid, levetiracetam, and/or primidone. Clonazepam is typically the most effective thing, but because of tolerance issues, your dose will have to be tapered up to a maximum dosage your doctor is comfortable with, then you will have to switch to another medication for a period of time to get your tolerance back down. Clonazepam is also a schedule 4 controlled substance, so be prepared for your doctor, pharmacist, and insurance companies to be a pain in the ass about it; they tend to act like you're the zodiac killer, and they're handing you a loaded gun.
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  #31  
Old 01-30-2016, 08:50 AM
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I agree on the propiospinal myoclonus and came to the same conclusion. But I don't really agree on ratcheting up on a benzo as the solution. Yes it controls the myoclonus--it's also highly addictive and the only way to continue to control the seizures is to continue to increase the dosage indefinitely as your tolerance adjusts. They cause irreversible dementia even if you quit--and you eventually develop interdose withdrawal and your symptoms of whatever you taking them for get worse. Not a popular opinion but I won't take daily benzos ever again after being on them for 7 months and 5 months of withdrawal. I've done the approach of magnesium, optimizing B12 and electrolytes and reducing glutamates, reducing stress, trying to get as much sleep as possible. They are not gone but much improved, especially once I completely cleared the benzos. That's the best I'm probably ever going to get, but beats being a slave to benzos the rest of my life--at least that's my take. I was in a car accident and had trauma to my brain and spine--dr thinks its idiopathic generalized epilepsy but I think it's the trauma to my spine personally (never had these before in 48 years of having epilepsy nor have I had absence seizures, so there's that).
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  #32  
Old 01-30-2016, 02:18 PM
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with Lindsay. I just got off one of the meds on Sizzlechest's list (Valproic Acid) and I am sleeping much better without any disturbances.

Tossing Benzos at an issue that could be solved with supplements makes no sense to me.
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  #33  
Old 01-30-2016, 04:00 PM
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I completely agree that benzos, or other seizure medications are not ideal. That's why I gave a list of things to rule out before turning to seizure meds as a last resort. Many times, this can be caused by something completely treatable, but in my case, it's turned out not to be. My case has also progressively escalated to the point where it's no longer a nuisance, but rather something that the sleep deprivation alone would kill me by the time I hit 50 years old, and an entire shelf of supplements I can't reasonably afford doesn't really make any noticeable dent in. If supplements help you, however, absolutely go that route.

Each individual should consider their options carefully should they find themselves facing the idiopathic diagnosis. One should ask their self "Is your sleep deprivation causing more damage than the medications would?" In my case the answer was yes, and in yours the answer may be no. Research these medications carefully; know the risks. Also, know the risks of long term sleep deprivation if that's an issue for you.

Also remember that "idiopathic" is not synonymous with "psychosomatic". Idiopathic simply means there is no known, or provable cause. In my case, I believe it was also caused by spinal injury stemming from a 60mph car wreck. An MRI didn't show anything, but that doesn't mean anything other than there was nothing the MRI could detect.

The reason I made my previous post was not to advocate for the use of potentially dangerous medications, but rather to make known the options people have facing this issue. I went to doctor after doctor, and researched this topic for nearly a decade, and only managed even get a diagnosis in December 2015. I'm hoping to save someone that hassle. My diagnosis, and subsequent treatment came just in the nick of time. I'd reached a point where my 'jolts' were so severe and persistent, I was ready to take my own life. I wasn't sleeping for a week at a time, and trying to go to sleep felt like receiving electro-shock therapy. If this information saves one person that torture, it's worth having typed these walls of text.

Best of luck to you all.
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  #34  
Old 01-30-2016, 04:07 PM
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Sleep deprivation is recognized by the Geneva Convention as a form of torture. I totally agree that it can wreck your life.

Glad everybody is on the same page about trying less toxic options first.
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  #35  
Old 01-31-2016, 10:15 AM
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Sizzlechest I was at the exact same place--myos all night long, every night, no deep sleep for months. I get where you are coming from and appreciate your post. I was on three meds all at high dose--that's too much, and benzo withdrawal was brutal. If that's the ONLY solution for someone it beats the torture you and I and others have endured. But for me it would always be a last resort. Glad to see you got off Valproic Aloha! Some day I'll drop Topamax the rest of the way and be down to just Keppra; just have to get rid of these pesky cycles and stabilize a bit more first!
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  #36  
Old 04-18-2018, 07:16 PM
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I'm not alone!


I am so happy to have found this post because now I know I'm not alone in this, but at the same time I am saddened that all of you have had to deal with this.

I have had these for almost 15 years now. I can identify with almost all of the symptoms everyone here is having. These myoclonic jerks mostly happen when I'm trying to fall asleep and can be so severe they keep me awake all night. Definitely raises my anxiety.

For a very long time I have not looked into epilepsy forums because I also have major depression and have been on antidepressants for 20 years. Doctors say the jerks are triggered by my anxiety and prescribe clonazepam, but you see, that's hardly the whole picture. I actually think I have these jerks as a side effect of the medication. It's hard to tell though because it has been happening for so long and I get them both when I am on and off antidepressants. However, seeing the long-term adverse effects that even a single dose of antihistamine can do, I would not be surprised if it is an adverse reaction of antidepressants. When I am on the drug the jerks are manageable and I usually sleep okay. It is when I try and get off the antidepressant (even tapering reasonably slowly - but apparently not as slowly as some "survivors" have recommended) that I get incredibly intense myoclonic jerks every two minutes and they keep me up all night, super-fire up my anxiety, and I can go for a few nights without sleep before I have to take a sleeping pill (Stilnox or clonazepam) or go crazy. For the longest time I have attributed it to antidepressant withdrawal, and that is horrible enough on its own, but now that I see people here having the same issue without seemingly having been on antidepressants, I'm thinking it could be a separate problem to adverse drug reaction.

I have been going the route of supplements. Tried recently to wean off the antidepressant but hit a horrible wall. Had to go back on the last small dose. Just the withdrawal from antidepressant has convinced me that I will not take another benzo ever again, because even doctors tell me they're addictive, even though they're not willing to admit that antidepressants are also addictive (something I have had to learn the hard way). Well, if I have such a hard time coming off antidepressants, I don't want to imagine how hard it will be to come off benzos especially if I've taken it long-term.

Made an important discovery the other night, when I was desperate because the jerks were still keeping me awake even after reinstating the antidepressant. Out of desperation I took a few things together, and miraculously the jerks went away and I was able to sleep. It's only been a few nights but it has really helped. I know it's early days, but this just goes to show that we should really exhaust the supplements avenue (like many of you have) before accepting that we should take medication long-term, especially ones with serious tolerance/withdrawal.

In case you are curious I took EPA/DHA, zinc picolinate, magnesium glycinate and active B6. I plan to slowly isolate them (when I get a few more nights of proper sleep) and find out which one exactly, or in combination, helped me.

In saying all this, please bear in mind this is what I am experimenting with at the moment. I am not passing any judgment on anyone who requires medication and has found them helpful. (After all I am on antidepressants still.) Also, those supplements above may not help you.

Thanks for reading, and wishing you jerk-free, deeply restful nights.

Last edited by tarutaru; 04-18-2018 at 07:19 PM.
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  #37  
Old 04-22-2018, 09:01 PM
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I find it interesting that these are myoclonic jerks. They sound more like hypnagogic jerks, except that they are severe enough to wake you up and prevent you from falling asleep. Myoclonic jerks would be experienced any time of day, or even during sleep, not just as one is falling asleep.
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  #38  
Old 04-23-2018, 08:58 AM
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Hay tarutaru, welcomone!

You might be interested in this recent article https://www.nytimes.com/2018/04/07/h...-cymbalta.html about trying to quit anti-depressants. Anxiety and "brain zaps" can be some of the symptoms people experience when trying to withdraw. And as you note, benzos can be even tougher. I'm glad you've found something to work for you.
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Old 04-23-2018, 08:12 PM
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Nakamova, thank you so much for the newspaper link. This is exactly what I have been going through but finally a major newspaper article in 2018 is telling our story clearly and accurately. I eagerly await the results of that antidepressant tapering research trial.

Since reinstating my previous dose of antidepressant, I have stabilised somewhat. The jerks have largely gone away and I am able to sleep again. I still take the zinc + magnesium but I am 90% sure it's the antidepressant "working" again. I am more than convinced now that my twitches are directly caused by antidepressant withdrawal (although I remain open to theories about why it does that, seeing that other people who have not been exposed to antidepressants also have the same issue). In the last few weeks sleeping pills have not really worked, benzodiazepines have not really worked, but my antidepressant "works" like the best sleeping pill ever, I take it right before bed and it "helps" me sleep. My brain will have nothing else after all these years being on it.

Sorry to divert this forum onto an antidepressant withdrawal tangent, but at least now I'm a bit clearer on what's happening to me.
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