Myoclonus or Myoclonic Jerks
Myoclonus or myoclonic jerks is a symptom. According to the website wemove.org (a site dedicated to movement disorders), "Myoclonus is a neurologic condition characterized by sudden, abrupt, brief, involuntary, jerk-like contractions of a muscle or muscle group."
The best information I have gotten about myoclonus is here. http://www.wemove.org/myo/
More links to info about myoclonus can be found at the end of this page.
It can be a result or symptom of many things such as Alzheimer's, physical trauma (such as resulting from a car accident), Parkinson's disease, Celiac disease, some prescription drugs, exposure to toxins and many more.
But, apparently, in many cases the cause for myoclonic jerks are never discovered.
First: In my updates I share that have gotten this issue mostly under control, via diet and supplements! Yay!
Second: To my surprise this webpage at one point was ranking highly on Google for the word "myoclonus" and was getting a lot of traffic. I wrote this webpage simply out of my personal desire to write about what my own experiences with strange, unusual and uncontrollable movements that I was experiencing and never thought so many would ever find it. So I'm not sure it will be very useful to those who read it.
If you found this webpage it's likely because you or someone you care about is experiencing uncontrollable movements as well. Although I don't know if this long-winded page of my health history will be of much help, I hope you will be able to find the answers you are looking for somewhere soon.
My Story - Am I Experiencing Myoclonus?
I will probably end up accidentally leaving things out. There are things I have forgotten, and also as I learn more I realize that there are things I did not see as relevant that really are and so I may inadvertently leave things out for those reasons. I may also end up including things that may be irrelevant...it is hard to know sometimes what is and what isn't in cases like these.
Over ten years ago I began occasionally experiencing odd jerks that would just happen now and then. I remember once startling my roommates as I began eating some ramen noodles with chopsticks, only to have the chopsticks go flying out of my hands and across the room as a hard jerk suddenly went through me. Nothing else happened. I felt fine. Not knowing what happened, why or what to do I just went on with my day.
Eventually though I began to experience full blown convulsions, where I would be on the floor jerking around uncontrollably. I ended up in the emergency room one of these times, but the doctors found nothing wrong with me. My mom had heard of a woman who was having convulsions as a result of severe magnesium deficiency. So I started taking magnesium supplements and didn't have problems again.
A few years after that I came down with what I think was mono. I was in bed for a week feeling too sick to move. And after that I was never the same. Although my other symptoms disappeared the fatigue never went away after that. In fact, there were days I woke up and wondered how I was going to get out of bed to pee, because I was That Exhausted, even after eight hours of sleep. The doctors I went to didn't seem to listen. Anti-depressants seemed to be their usual answer in response to my visits with them.
My mother had CFS (Chronic Fatigue Syndrome) and Fybromyalgia. My symptoms seemed similar to hers. So I began reading up on that, decided that CFS was probably what I had. In my reading about CFS I found that the few people who seemed to get better made drastic lifestyle changes, mostly in regards to what they ate and in taking nutritional supplements. Although I didn't make as drastic of a change as I probably should have for optimal results, with the changes I did make I began to see definite improvements. I was still tired, but not so fatigued that I could hardly get out of bed. About a couple years ago I began seeing a naturopath and started to do even better.
But every now end then my neck would jerk to the left side and then immediately go back to normal. Like a twitch. It would happen so rarely, like just once every few months. So I would forget about it immediately. Then a few times I would notice it happening more frequently and closely together. At those times I would notice that if I would take a sub-lingual B12 vitamin it would improve. Maybe it's weird, but I honestly didn't think of too much. I thought maybe it was just tension in my neck or something.
Back around January 2012, approximately, though everything changed. Suddenly they were increasing in frequency. Other times they increased in strength. They were happening every day, usually at least a few times a day. I remember one evening while watching a movie on tv having these jerks happening repeatedly one after another, at most a minute apart for two hours. There were a few times where they were so close together that it looked like I was having convulsions.
I began trying to research what the cause of this could be. Since I did not even know what to call this I got practically nowhere. But because of the experience I had with convulsions and magnesium in the past I started looking into whether nutritional deficiencies could cause this. While looking at information about calcium, magnesium and B vitamins I thought it was a possibility and went to the naturopath to ask him. (Most medical doctors are not taught about nutrition, while the naturopath I know has been.) He thought it was a possibility and recommended a very good liquid calcium and magnesium supplement he knew of. And taking calcium supplements seemed to help. The symptoms decreased very quickly. I thought I had found my answer. For awhile. But maybe it was just coincidence that they had almost stopped completely when I started taking the supplements. Because the jerks re-appeared after awhile, worse than before.
I currently do not have a job and have no health insurance. Knowing that finding out what this could be could take several tests and even then they might lead nowhere. And having little faith in medical doctors based on previous experiences with them I was reluctant to go to the doctors. But it seems like I have no other choice. There is a clinic for low income families where I live and I went there. There they ordered an EEG. I had to wait a month for my EEG appointment (and go to a hospital in a city 45 minutes away from where I live). In the meantime I kept searching online for information.
I finally stumbled upon the site wemove.org. I went one by one through each movement disorder they had listed. When I came across the part on myoclonus I felt like I had finally found what described me. Reading the section of the forum on myoclonus further confirmed that this seemed like what I was going through. People were saying things like their head would jerk so hard they "gave themselves whiplash." Something I had said myself on occasion. They also said that it happened more often when they relaxed (I had been noticing it happened less often when I was at they computer typing or moving the mouse, but more likely to happen when I was staying more still...I thought that was odd ...and still do). That fluorescent light made it worse (I am rarely around fluorescent light, but times like when I was at the clinic that did have fluorescent light it seemed worse). And more.
It was such a Relief to find others like me.
And of course, at this point no medical professional has told me that this is myoclonus or are myoclonic jerks. Just based on what I've read and videos I've seen online, I believe that is what they are.
But then I realized...this is just a symptom. And reading further that in most cases they never discover what causes it. And then...that in most cases it will never go away.
It's hard to drive when your head jerks hard to the side so you are looking, albeit briefly, out the side window instead of the road in front of you. Others with this symptom of myoclonic jerks have said that they can manage it enough while driving by being "active" as they drive (since it's more likely to happen when being still). But I've had them happen while I drive and it makes me very uncomfortable with the idea of driving and having a really hard jerk happen at the wrong time. For me this means possibly losing my independence. If you live in a large city where there is public transportation this might not seem so hard. But in a more rural area it means not leaving home to do things like shopping unless you can find someone to drive you. For me this has been the greatest difficulty. The most depressing. The only thing about it that has scared me. Yeah it's uncomfortable, occasionally it's painful, and I look really odd when it happens. But I can live with that. Not being able to get out and about as I please, because I don't know When it will happen....it's almost devastating.
Rapid, Body Jerks
This is the first video I made when I still didn't know what to call what was happening to me. At this point they looked and felt more like convulsions. After starting taking calcium with magnesium supplements this type of rapid, repeated jerking movement has stopped. And instead I have more brief, but sometimes more violent jerks (I have almost fallen over at times when the jerks have been hard enough). I'm not sure if the supplements were what changed things or if it's just coincidence.
So Now What?
I had my EEG. It was an interesting experience. But I won't go into details here.
I have an appointment on January 17th. And so I get my results from the EEG then. I hope.
I also read on the wemove.org site that one disease that can cause myoclonus is Celiac Disease. Of all the medical conditions they had listed on their site this was the only one that sounded like me. Although symptoms for Celiac's can vary, a lot of the other symptoms do match symptoms I have (but I also know those symptoms describe a lot of other things as well). So I intend to get them to have me tested for that as well.
I've also noticed that there are those with CFS/ME (in Britain CFS is called Myeloencephalitis or ME so you will often see it called CFS/ME online when someone from Britain is writing about it) that say they have myoclonic jerks as a symptom. I haven't run across someone in the United States saying they have it as a symptom, but I may just not have seen any yet. So perhaps my myoclonic jerks is a symptom of CFS.
But I've started to wonder if maybe I have had something else all along. (While my mother still has fibromyalgia she found out she also had a tumor in her parathyroid that was causing some her health problems, and after surgery many of her symptoms improved a lot.) I think what I have done over the years, trying to improve my health with nutrition and such, was still the best course of action for me. I don't know what else I could have done other than taking the anti-depressants pushed on me when I did not believe I had clinical depression. I don't know that even if I had pushed doctors harder if they would have found anything then either.
I've had at least one friend (who is not a doctor or in the health field at all) tell me that they think it's psychological. And that is on the list at wemove.org as one possible cause. I do believe in a mind, body health connection. So I won't rule it out completely. But so many of the triggers and aspects of what I am going through do not seem psychological to me. Hopefully the EEG I took will help discover if it is psychogenic. I know most people hate to be told that it's "all in their head." And when you know deep down that something serious is going on and no one takes you seriously I understand that. But on the other hand...if it really was all in my head then I could know it wasn't some degenerative disease where things get progressively worse. On the other hand, I've heard of too many times where people were told by doctors that it was "all in their head" only to find out years later that they had a serious, deadly illness.
So for now...I just find out what I can from the EEG and then the Celiac test and other blood tests I believe. And I should work on improving my nutrition again...since I have only halfway improved in that area. Even if I don't have celiac cutting back even more on things with refined flour may be good for me.
Head Jerking Motions
So this is another video I made while at the computer. I actually am less likely to have them while I am at the computer, I think because I am moving my arms and head as I type and use the mouse or my digital drawing tablet. But this day I was having them a lot so I started filming myself. It's boring to watch as most of the time I am just reading what's on my computer screen, then for a brief moment there will be a head jerk. But I thought I should include it since I have it.
April 23, 2012
I still do not have a diagnosis.
Although at the clinic they did not determine a cause the only thing they would do for me is prescribe an anti-seizure medication. But after looking into the side effects I decided that they were worse than what I was experiencing. Especially since it said something about many should not drive if they use this medication.
So instead I went to a Doctor who is also trained as a naturopath (which since I could not afford it my parents kindly paid for the visit for me) and he gave me a homeopathic remedy called Cuprum which has helped me. Which I find amazing. But it really does seem to help me.
And I also many years ago found I was deficient in zinc and got a liquid zinc product called Zinc Status that can be used to "taste test" how deficient in zinc you are. I have also used other forms of liquid zinc and that seems to be the only form that I absorb well. Anyway, I hadn't taken it for years but when I started taking the Zinc Status again that and the Cuprum seemed to have reduced my myoclonic jerks significantly, although I do have them some still.
I think other supplements such as calcium and sub-lingual B-12 vitamins seems to help too.
I actually go days without having any jerks at all, but other times have just a few a day.
I hope to continue to make changes in my health that will reduce them even more and hopefully eliminate them entirely.
July 23rd 2012
I still have been doing much better. The myoclonus happens rarely. But it still happens. So...
Awhile back I had heard that some people with Celiac's Disease have myoclonus. The one test I had done for Celiac's did not show anything. And I didn't really pursue it further. I kept saying I would start cutting out wheat/gluten and see if it helped. But I only have started trying in the past week or so. I haven't cut it out completely. I am just avoiding the obvious stuff such as pasta or bread. Some other health problems I've had, such as bloating, have improved almost immediately. And I just feel a general sense of feeling better. So I have hopes that this is a good sign and I plan to continue on this path and see what develops.
Thinking that wheat based products or other foods could be causing problems I found an app called Doc's Diet Diary for smartphones that I can use to keep track of what I eat and any symptoms I have. If you are experiencing myoclonus, or any other symptoms of an undetermined cause, I'd recommend keeping a food diary to see if the symptoms may be triggered by things you are eating. It's worth a shot. I've had a hard time keeping a food diary in the past. I think this food diary app will make it easier for me to keep one.
April 23rd, 1014
Hooray! I hardly ever have these myclonic jerks anymore. I do still have them now and then at odd moments...kind of like I did many years ago...spaced so far apart that I tend to forget all about them. When I do have them I notice I sometimes start having benign muscle fasiculations first (which is one of those things I'm pretty sure I've forgotten to mention above that I sometimes have too). I am pretty much convinced now that most of the problems are/were nutritional related, malabsorption of nutrients perhaps due to inflammation and/or leaky gut. I'm still trying to eat healthier than I do and remember to take supplements that help, but I think I have it largely under control now almost exclusively through diet.
Links to Info about Myoclonus
- Myoclonus - Wellness Info
Myoclonus is a brief and rapid twitching of a muscle or muscle groups. The twitching or jerking happens suddenly. It cannot be stopped or controlled at will. There are different types. Some occur normally, like the hiccups or a movement while fallin
- Myoclonus, Extrapyramidal and movement disorders, Medical signs, Seizure types
Myoclonus is a brief, involuntary twitching of a muscle or a group of muscles. It describes a medical sign and, generally, is not a diagnosis of a disease. Brief twitches are perfectly normal. The myoclonic twitches are usually caused by sudden muscl
- WE MOVE - Myoclonus
Myoclonus is a neurologic condition characterized by sudden, abrupt, brief, involuntary, jerk-like contractions of a muscle or muscle group. (This site is no longer around, but I have linked to an "archived" version of the site.)
- Myoclonus - Imitators of Epilepsy
Myoclonus is a particularly protean movement disorder; there are many potential etiologies and pathophysiologies. In fact, myoclonus may be either epileptic or nonepileptic.
What I Am Doing To "Treat" This
I am continuing to work on improving my health through diet, supplements and reducing/eliminating things like refined sugar and wheat/gluten. I am finding myself less and less liking sweets as much, finding them to be overly sugary where once they seemed wonderful. When I buy store bought yogurt I buy a carton of plain yogurt as well and will mix half of the sweetened yogurt with half of the plain yogurt before I eat it to make so it is not so overly sweet to my taste buds (and it is healthier as well).
My jerks are at what I consider to be a manageable level. Happening almost only in the evening and only once or twice at that and many days I experience none at all. What a relief compared to how they were frequently happening right after another.
I cannot guarantee that what I am doing would help anyone else out (I can't even be 100% positive that anything I'm doing is why I have improved a lot...I just believe that they have).
What I am Taking
Here is a list of some of the supplements I have been taking. Plus a book I have found very helpful. They may not be of use to anyone else (and this info is in no way intended to be taken as medical advice or a substitute for such...I take no responsibility for others experience with any of these products).
I have tried all the brands below, but sometimes I have used other brands as well. I recommend trying different brands to find what works for you...what is best for one person is not always best for another.
I have also taken things like CoQ10, Alpha Lipoic Acid, Vitamin A and D...but those I am not sure if they have any effect on my jerks or not. I am also taking Ginko Biloba, but that is to help my circulation (my fingertips and other extremities get cold very easily) and if it helps with the jerking too I am not aware of it.
This is the product that seems to help me a lot. Many years ago when I found myself exhausted all of the time I ended up reading a book called Why Am I Always So Tired? that talked about Zinc Deficiency and Copper Overload. The symptoms of these conditions described me to a "T" and after following the suggestions in that book a lot of the extreme fatigue I experienced melted away and my life became more normal. I used liquid zinc (the Zinc Status brand seems to be the easiest to find) to help me. I eventually stopped taking it though.
Then I ended up getting some again and thought I'd try it again. To my surprise it seemed to have an effect on my weird jerking movements. If I stop taking it the uncontrollable movements seem to increase and if I take it they seem to decrease.
I could not say whether it will help anyone else. I cannot even guarantee that it is helping me...and can only say that I do really think it seems to be helping me. This is also not intended as medical advice, just my own experience. I take no responsibility for others experience with this product.