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Old 03-03-2012, 01:32 PM
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Unhappy treatment for myoclonic jerks


Hello to all of you. I am new here.

About three weeks ago, I noticed that my body was jerking the minute I officially went to sleep. I didn't think much of it back then. But it kept on happening and then for a couple days it stopped. I had GREAT sleep those couple days. But then it returned. I was at a point where I had no sleep for four days. I finally decided to go to my rheumatologist and figure out what is happening to me. She diagnosed me with myoclonic jerks. She prescribed me premidone but that pill was too strong for me. I woke up in a different state of mind but, I just slept it off and was back to normal. I told my doctor about that and she gave me clanozepam instead. The next night, I slept well mainly because I was really exhausted. Right now, as I am trying to go to sleep, the jerks are not letting me go to sleep peacefully. I am trying my best not to worry about it but every time I jerk, my anxiety goes through the roof. This is really effecting my life as I am a college student and I have three tests next week. I don't find the will to do anything. I was not like this before this started happening.

Have any of you been fully cured and are off any medication? Because the thought of taking a pill to go to sleep really bothers me. It's as if I am drugging myself to go to sleep.

Thanks for reading.
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Old 03-03-2012, 04:11 PM
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I just did a search for other conversations about Myoclonic seizures and I found this:
Progressive Myclonic Epilepsy treated with NAC

You might also consider other vitamins and minerals that are helpful for brain and body health. I recommend that you do some research on them and consider an individual trial of them.

A member here DogtorJ , is a Veterinarian able to reduce seizures in his animals through a nutritional approach, posted this recently on his Facebook group:

"I think you are already aware of, such as vitamin D3 (crucial!!!) antioxidants (e.g. resveratrol, grape seed extract to counter the free radicals in pollution), magnesium, B complex (B12 especially, sublingual), omega threes (always important), selenium, and now zinc is getting some attention. Most do great as long as the diet is cleared up but others need more. Getting the D3 levels normalized and checking thyroid function are clearly the two most important in those that continue to seize on The GARD."

(The GARD is a dietary approach he has come up with to help animals and their owners raise their seizure threshold. If you want more info on the subject you can review his site at http://www.dogtorj.com )
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Old 03-03-2012, 04:45 PM
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Hello Robin. Thanks for your reply.

I do not know if I have what you call epilepsy. I don't know if I have seizures. I am new to this whole epilepsy world. I get jerks in my hands, legs, mouth, forehead, neck...anywhere you name it and the funny thing is it only happens when I am trying to get some sleep. It doesn't happen anytime else except sometimes here and there. I don't even know if you would call these myoclonic jerks or just hypnic jerks. My rheumatologist prescribed me Clanozepam and I know this is an addicting drug. I do not want to use this for the rest of my life and be its slave. I refuse to take this drug. However, my general physician ordered a vitamin d and other blood tests. Everything came back normal except for the vitamin d. She said my vitamin D is very low but she also concluded that the lack of vitamin D is not the cause of my jerks. I do not know what to do. I guess I might have to take the Clanozepam but, it is making me very depressed. I guess I should be lucky that I do not have bad epilepsy like most people on this forum. Anyways, do you know if Vitamin D has anything to do with it?
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Old 03-03-2012, 08:07 PM
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Hi PhillyEaglesFan,

First of all, welcome to CWR

Here's a thread discussing Vit D and seizures. My post tells about my positive experience with Vit D, but more importantly, Nakamova posted two links to NIH studies about Vit D and seizures.

Vitamin D deficiency cause seizure/epilepsy?

Good luck!
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Old 03-04-2012, 02:21 PM
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Hey PhillyEaglesFan,
I am epileptic, and in my case the first signs where myoclonic jerks, and eyelid fluttering i also didnt think these where seizures but 10 years later when i had my first grand mal i was sent to a neurology centre, where i was tested, all came back fine but i was still having the jerks (bear in mind this was all day and anytime - not just when going to sleep) 12months later i was diagnosed with Juevanile Myoclonic Epilepsy, i was immediately put on Keppra and since i begun my medication i have not had a single myoclonic jerk since or any other form of seizure, both the myoclonic jerks and eyelid fluttering where seizures i think my neurologist described them as a temporary lapse in conciousness. I hope you can get some answers and get yourself sorted out soon, i know how frustrating the myoclonic jerks are!! i made a show of myself a few time (more than a 'few' if im honest) at one point i was walking down the street and had a myoclonic jerk that affected my arms and i hit myself in the face with the food i was eating...if i didnt laugh id cry! best of luck!!! x
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Old 03-04-2012, 04:23 PM
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Originally Posted by PhillyEaglesFan View Post:
Hello Robin. Thanks for your reply.
I do not know if I have what you call epilepsy. I don't know if I have seizures. I am new to this whole epilepsy world.
Did you know that the label of "Epilepsy" only means two or more seizures?

My daughters "seizures" eventually have been diagnosed as being caused by hypoglycemia. At least some of them were.
Quote :
The term used for this constellation of neurological signs and symptoms as a result of hypoglycemia is NEUROHYPOGLYCEMIA).
Others were caused by medication that we experimented with under the doctors recommendation, to treat the seizures. Since she stopped taking medication those seizures stopped.

So for what ever reason you are having these neurological disturbances, there is a cause. Some people can never figure out the "cause". While others know, but would rather stick with the medication since it is working. I on the other hand wanted to figure out the cause of my daughters seizures, and it has thankfully taken us to a place where she is not experiencing any seizures. Might that change in the future? Perhaps, but if she keeps her seizure threshold high, she might be safe for years to come.

I offered the information to you, with the idea that you might consider some alternative approach, other than the conventional one size fits all approach so often used in medicine these days.
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Old 03-04-2012, 04:23 PM
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I understand that you had foot flaps and you began taking vitamin D and calcium. Now did your foot flaps improve immediately or did they improve over couple weeks?

lucycherish
Thank you for your reply. I hope I never get epilepsy and my myoclonic jerks improve.

It's funny because the way how the jerking started really questions me. Let me tell you my story. It is quite long but please bear with me. On August of 2011, I had creepy/crawly feeling on my left foot. My doctor told me that it was a B12 deficiency and prescribed me Lyrica. I took Vitamin B12 daily and showed improvement. I also took the Lyrica on a daily basis for two weeks. I then had a night with hypnic jerks. Hypnic jerks is when your body jerks when it is about to doze off to sleep. I was very anxious so I wrote about whether or not Lyrica causes hypnic jerks in the steadyhealth.org forums. I have not had hypnic jerks since until there weeks ago.

Now three weeks ago, someone had replied on that forum and I was sent a notification by email. I checked the forum and the guy the replied said that he has had hypnic jerks ever since he was on Lyrica. THIS FREAKED ME OUT. From that day onwards, I have been having jerks as I doze off to sleep. I do not know if this is anxiety related or not.
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Old 03-04-2012, 04:37 PM
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RobinN

I am sorry about your daughter going through what she is going through. I am assuming she is very young. It sucks when health problems show up at a very young age. I am glad that she has stopped medication and is doing better. That is kind of the reason why I am against chemical manufactured drugs. They are disgusting pills that give side effects and when it comes time, you have to increase the dose.
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Old 03-04-2012, 04:47 PM
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My daughter was 14 when she had her first seizure. She is now 20.
My intuition pointed to a nutritional "cause" but I was told by the neurologist that diet did not play a role in seizures. Ya... It didn't take long on Google to prove that one wrong. He also said that hormones do not play a role. All I had to do was put seizures and hormones into a search to prove that one wrong as well.

I am telling you this, because you should be open to all of the possibilities, no matter what they try to label it as. Our bodies are unique and some are highly sensitive. Keeping records (a journal or calendar) is very important if you are searching to find answers. The traditional tests did not help me much. They only threw me off course for quite some time.
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Old 03-04-2012, 05:50 PM
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Hi PhillyEaglesFan --

You might want to try taking a magnesium supplement. Magnesium plays a HUGE role in a number of body functions, including nerve and muscle health. Muscle spasms, jerks, tics, cramps and hiccups can all be caused by a magnesium deficiency.

Different things can cause a magnesium deficiency or speed up the depletion of the body's stores of it. Too much calcium is one cause (calcium tenses muscles whereas magnesium relaxes them). Stress, intense physical activity, coffee, sugar, high sodium, cola-sodas, smoking, hypothyroidism, and diabetes can all play a role too.
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Old 03-05-2012, 12:38 AM
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[QUOTE=PhillyEaglesFan;157184]Travel Bug
I understand that you had foot flaps and you began taking vitamin D and calcium. Now did your foot flaps improve immediately or did they improve over couple weeks?

It took about 5 days to a week.

I hope this (or something) works for you soon. I know how frustrating it is to try to sleep when your body isn't co-operating.
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Old 03-05-2012, 12:42 AM
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Originally Posted by Nakamova View Post:
Hi PhillyEaglesFan --

You might want to try taking a magnesium supplement. Magnesium plays a HUGE role in a number of body functions, including nerve and muscle health. Muscle spasms, jerks, tics, cramps and hiccups can all be caused by a magnesium deficiency.

Different things can cause a magnesium deficiency or speed up the depletion of the body's stores of it. Too much calcium is one cause (calcium tenses muscles whereas magnesium relaxes them). Stress, intense physical activity, coffee, sugar, high sodium, cola-sodas, smoking, hypothyroidism, and diabetes can all play a role too.
Thanks for this info. I'm afraid I've fallen into the "if a little is good, more is better" mode of thinking. I should know better. Back to the recommended dosage for me. (I'm talking about Calcium and D, not anti-seizure meds. I'm not that foolhardy:P)

Last edited by travel bug; 03-05-2012 at 12:45 AM.
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Old 03-12-2012, 09:49 PM
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Just wanted to drop in and say that my Myoclonic Jerks went away. I was diagnosed with Vitamin D deficiency. So I started taking Vitamin D and Omega 3/6/9 every night before bed and a couple days later the jerks are almost completely gone. I still have some here and there but the worst of it is gone. I hope I am not speaking too soon.

Although one thing still lingers around. I can't sleep at all in the afternoons no matter how tired I am. Whenever I doze off to sleep in the afternoon, my brain sends an electric shock to my chest the minute I officially doze off causing me to wake up. I don't know what is causing this. I get very anxious to sleep during the afternoon which makes it worse. I hope it is just anxiety that is causing it. I will be taking a multi-vitamin once every day and see how it goes.
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Old 06-26-2012, 06:41 AM
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Just want to see how you're getting on PhillyEaglesFan. I am at the moment going through something very similar to you. About two months ago I had a severe bacterial infection in my leg. Was prescribed some antibiotics for it and soon as I took them, boom, bad reaction. I started to have these myoclonic jerks as I begin to dose off. My anxiety also hit the roof and has since been going through CBT therapy + antidepressant. To sleep I need to take zopiclone (sleeping tablet) every night. My therapist would have me believe that the jerks are an expression of my anxiety. Now two months later my anxiety is mostly fixed and my mood is quite neutral during the day, but the jerks are STILL THERE. In fact they wake me in the morning when the action of the zopiclone has faded.

I was encouraged when I saw your post, just to know that getting a mineral / vitamin screen of my blood might be another thing to do next. But how are you getting on? Is it still working?
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Old 02-06-2013, 07:53 AM
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Hi,

I wonder how you're doing PhillyEaglesFan. I've also been having this for over 2 years now. I'm 27 years old who almost lost my job because of this. I've also had been to a point of not sleeping for 3 days straight. But I've never gotten to convince myself to take those sleeping pills. I finally took magnesium supplements and my jerks alleviated, didn't really go away completely. Now that I'm trying to slowly get off magnesium to experiment a bit if I'll be fine without it but my jerks have gotten worse again. So I guess I'll just resume the magnesium and I'm thinking of including vitamin D as you suggested.

It was so depressing and frustrating at first when I didn't know how to handle it. I also tried practicing deep breathing and meditation-like mind conditioning when it happens. And it helps put off the anxiety and doesn't bother me as much as it used to. Because this gets heightened by anxiety. I tend to also drink a few bottles of beer sometimes when I need to because it helps. I know it's not healthy but it works. I would recommend learning meditation to anyone who gets this jerks. For me it's the key for me that kept me from going insane.

I tried to do a full research 2 year ago about this and not too many topics have been made about it. There were a lot of complaints in forums but not a lot of solutions and explanations and seemed like nobody really understood this and considered it "normal" phenomenon. Now, it seems like a few remedies have finally been discovered. I don't get why the medical field aren't paying much attention to this since this is quite a serious issue. Which may lead to depression and severe anxiety if not handled right and can really affect and ruin one's life.

Regards!

Last edited by redclay; 02-06-2013 at 08:11 AM.
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Old 02-06-2013, 08:46 AM
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Hi redclay, welcome!

Quote :
I tend to also drink a few bottles of beer sometimes when I need to because it helps.
Beer has B vitamins (niacin, riboflavin, B6, B12) which are important for brain health. Maybe you should add a B-complex supplement to see if it helps.
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Old 02-11-2013, 03:49 AM
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Hi Nakamova! Thanks for the advice.
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Old 03-29-2013, 08:16 PM
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Originally Posted by PhillyEaglesFan View Post:
Hello to all of you. I am new here.

About three weeks ago, I noticed that my body was jerking the minute I officially went to sleep. I didn't think much of it back then. But it kept on happening and then for a couple days it stopped. I had GREAT sleep those couple days. But then it returned. I was at a point where I had no sleep for four days. I finally decided to go to my rheumatologist and figure out what is happening to me. She diagnosed me with myoclonic jerks. She prescribed me premidone but that pill was too strong for me. I woke up in a different state of mind but, I just slept it off and was back to normal. I told my doctor about that and she gave me clanozepam instead. The next night, I slept well mainly because I was really exhausted. Right now, as I am trying to go to sleep, the jerks are not letting me go to sleep peacefully. I am trying my best not to worry about it but every time I jerk, my anxiety goes through the roof. This is really effecting my life as I am a college student and I have three tests next week. I don't find the will to do anything. I was not like this before this started happening.

Have any of you been fully cured and are off any medication? Because the thought of taking a pill to go to sleep really bothers me. It's as if I am drugging myself to go to sleep.

Thanks for reading.
If you're an adult with healthy renal (kidney) function, I highly recommend you take 1,000+ mgs of Magnesium everyday. Give it about a week and your symptoms should stop. Make sure you take one tab about an hour before bed. It too me over 35 years to discover that Magnesium has the potential to completely stop myoclonic jerking. I take it the poor man's way... 1/2 tsp highly crushed Epsom salt stirred into a glass of Orange juice. You have to be crazy not to look into this method, particularly when all else fails,
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Old 04-03-2013, 11:09 AM
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Originally Posted by redclay View Post:
Hi,

I wonder how you're doing PhillyEaglesFan. I've also been having this for over 2 years now. I'm 27 years old who almost lost my job because of this. I've also had been to a point of not sleeping for 3 days straight. But I've never gotten to convince myself to take those sleeping pills. I finally took magnesium supplements and my jerks alleviated, didn't really go away completely. Now that I'm trying to slowly get off magnesium to experiment a bit if I'll be fine without it but my jerks have gotten worse again. So I guess I'll just resume the magnesium and I'm thinking of including vitamin D as you suggested.

It was so depressing and frustrating at first when I didn't know how to handle it. I also tried practicing deep breathing and meditation-like mind conditioning when it happens. And it helps put off the anxiety and doesn't bother me as much as it used to. Because this gets heightened by anxiety. I tend to also drink a few bottles of beer sometimes when I need to because it helps. I know it's not healthy but it works. I would recommend learning meditation to anyone who gets this jerks. For me it's the key for me that kept me from going insane.

I tried to do a full research 2 year ago about this and not too many topics have been made about it. There were a lot of complaints in forums but not a lot of solutions and explanations and seemed like nobody really understood this and considered it "normal" phenomenon. Now, it seems like a few remedies have finally been discovered. I don't get why the medical field aren't paying much attention to this since this is quite a serious issue. Which may lead to depression and severe anxiety if not handled right and can really affect and ruin one's life.

Regards!
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!
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Old 04-03-2013, 11:10 AM
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I've always felt like the epilepsy community kind of disgards 'myoclonus' as some kind of nuisance when it can be so, so, so much more then that and very deabilitating.
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