Jerking (myoclonic)

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Jerking (myoclonic)

Postby andrewbfs on September 11th, 2012, 5:23 pm

I have had BFS-like twitches for most of the past 3.5 years. Over the last 6 months, however, I have bouts with "jerks," mostly when sitting/lying still. They happen most often when I am in between being asleep and awake, but also occur while wide awake but sitting still, and also when I lie in bed awake in the morning. Most commonly involved are my shoulders, thighs, and neck. Sometimes it's a wrist, finger, ankle, but mostly it's closer to the trunk. Happens on both sides about equally.

I know that many people here mention having sleep starts / sleep jerks. I'm not sure if what I'm experiencing is quite the same, however. They're not "brain zaps" - they don't "take place" in my head at all -- strictly in the muscles. Also curious is the fact that it waxes and wanes -- I may have a serious issue with it for 4 or 5 days, then it diminshes greatly for a week or two.

Around the same time that the jerking began, I also occasionally experienced "ratcheting" muscles. That also waxed/waned, but hasn't been much of an issue since going on paroxetine.

I have GAD (primarily, health anxiety) and am on paroxetine currently (SSRI), which I know has muscle movement side-effects, but I've noticed this particular problem for 3 months longer than I have been on that drug.

Also seems odd to me that this would start almost three years into my BFS adventure. Makes me wonder if it's not at all related.

I made the mistake today of consulting with Dr. Google regarding myoclonus, and find no mention of anxiety in the causes of such jerks that extend beyond the typical sleep starts. Only bad things. :(

My primary concern is Parkinsons, as I have what I would consider to several risk factors (age 48--getting close to the time frame for that disease....a serious head injury as a child--risk of PD increases from under 2% to closer to 20% for those w/ serious brain injuries....various essential tremors--another increasing risk factor).

Combined with the various other neuro things I've had going on over the past 3 years (twitches, occasional tingling, numbness in fingers when sleeping, ratcheting, jerks, etc.), it's often hard to keep my health anxiety under control.

I've had several appointments since the twitching started with a neurologist, who was convinced that I was a basket case anxiety-wise, and wrote everything off as anxiety-related. I have had 2 clean brain/cervical MRI's, and a clean EMG/NCS. Those were all before the arrival of the jerking, however. I have not been officially diagnosed with BFS, but do feel that it would be appropriate, with regards to my twitching. Not so sure about some of this other stuff, though.

I have an appointment with a new neurologist coming this fall/winter. In the meantime, I'd appreciate hearing any insights into the jerking that any of you may experience, or any comments on the above information.

Thanks in advance!
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Re: Jerking (myoclonic)

Postby Carts on September 11th, 2012, 5:50 pm

I bascially get everything your talking about. My jerks, spasms and twiches sort of come and go. I get them both awake and while sleeping. Been going on a couple of years. 2 clean EMGs and the Neuros told all of it is benign. I'm finally accepting it and this seems to help. I'm also on Celeixa for aniexty. Good luck.
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Re: Jerking (myoclonic)

Postby seventhcandle on September 11th, 2012, 5:59 pm

My God, I could have written this post. I am only 3 months into BFS Hell and I have all of those jerks (including a repetitive one in my neck) that happen every night and sometimes keep me from getting any sleep at all. And I totally understand about them not being typical brain zaps, Andrew. They are basically like periodic limb movements while semi-awake. I hate them, hate them, hate them, but they won't go away. Not a night goes by that I don't have at least two or three.

I know Matt gets jaw clenching on a nightly basis, which sounds a lot like the neck jerking I get (every night) and he wears a mouth guard for it.

My grandmother died of Parkinson's and I have no doubt that our condition has something genetically to do with it, but I don't think you have Parkinsons Disease - just an awful case of BFS like me.
Been on the BFS journey since 6/26/12...

Twitch way do I go from here?

BFS does get better with time. Almost two years in and able to do almost everything I could do before I had this condition. Still twitching away of course...
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Re: Jerking (myoclonic)

Postby marbito11 on September 25th, 2012, 2:42 pm

just so you know, parkinsons is geneticall.
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Re: Jerking (myoclonic)

Postby andrewbfs on September 27th, 2012, 9:15 am

marbito11 wrote:just so you know, parkinsons is geneticall.

I have to respectfully disagree with this assertion. There may be a genetic predisposition, but there is a large body of evidence that indicates the disease is more prevalent in those with a history of brain injuries, or possibly environmental exposures. To say that that PD is only genetic would be ignoring that body of evidence.

FWIW, as an update, my jerking muscles continue to wax and wane. Since my original post 2 weeks ago, I've had a week where they reduced to almost nothing, and have since gradually returned. Primarily shoulders and quads, when sitting still or lying still. Most often at bed time. I wouldn't say that they correlate to anxiety directly, but it's hard to say for sure. I've been sleeping OK, just having a little bit of trouble falling asleep due to the jerking.
My fasciculations are at an ebb, as they have been for several months. I still get hot spots almost daily, but the non-stop "drops in a puddle" feeling that I've had for much of the past few years is basically at a low point. So, I guess I've got that thing going for me!
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Re: Jerking (myoclonic)

Postby marbito11 on October 19th, 2012, 9:25 am

[quote="marbito11"]just so you know, parkinsons is geneticall.[/quot
I meant parkinsonis not gentical.
Anyways, i feel like im the person writing your post. I have the same exact symptons, the limb jerks when sleep, awake, seme asleep. it happens..and btw, im also scared of parkinsons. however, it mostly develops within 1-2 years of mild symptons. if youve been experiancing this for 3 years and no major parkinsons symptoms then i think youre ok. for me, ive only experianced this since 7months ago. most of my bfs symptoms (muscle twitch) have gone away with excercise. i recently started to work out alot and my muscle twitches is mostly gone.

take care
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Re: Jerking (myoclonic)

Postby andrewbfs on October 19th, 2012, 4:21 pm

Thanks for the clarification, marbito11 -- the word "not" makes all the difference! :)

While my fasciculations have been going on for 3 years, the limb and neck jerks while lying still have only been going on for about 6 months. That's part of what concerned me about them -- they seemed to be unrelated, based on the fact that they started so much later. They continue to wax and wane on a day-to-day basis, but never completely go away.

I have read that there are subtle signs of Parkinson's that can be seen before disease onset, sometimes many years before (reduced arm swing in one arm, etc.). Part of that factors into my concern about PD, along with the other "risk factors" I mentioned in my original post.

I also sometimes have subtle "ratcheting" of muscles that, when they were at their worst, worried me as being rigidity. They've mostly gone away, but not completely.

I've also noticed that my typing ability has noticeably decreased in the past 6-12 months. Don't know if that relates to anything at all, but it is annoying and sometimes concerns me. It's not really a physical thing -- meaning, I don't have trouble hitting the keys. Rather, I tend to type the wrong letters, transpose letters, etc. I might do things like type "tellers" instead of "letters" for example.

Some days I worry more than others...sometimes I just think -- whatever happens, happens. I was disappointed to find out that I won't be having an appointment with a new neurologist any time soon. The neuro group which my previous doctor belonged to has not found a replacement yet, and they refuse to schedule me with someone other than a movement disorder specialist, since that's what my previous neuro specialized in. :(

Anyway, thanks again for the clarification, and I'm sorry to hear that you are similarly experiencing the limb jerks...but I'm glad to hear that your twitching is mostly gone!
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Re: Jerking (myoclonic)

Postby marbito11 on October 19th, 2012, 8:09 pm

andrewbfs wrote:Thanks for the clarification, marbito11 -- the word "not" makes all the difference! :)

While my fasciculations have been going on for 3 years, the limb and neck jerks while lying still have only been going on for about 6 months. That's part of what concerned me about them -- they seemed to be unrelated, based on the fact that they started so much later. They continue to wax and wane on a day-to-day basis, but never completely go away.

I have read that there are subtle signs of Parkinson's that can be seen before disease onset, sometimes many years before (reduced arm swing in one arm, etc.). Part of that factors into my concern about PD, along with the other "risk factors" I mentioned in my original post.

I also sometimes have subtle "ratcheting" of muscles that, when they were at their worst, worried me as being rigidity. They've mostly gone away, but not completely.

I've also noticed that my typing ability has noticeably decreased in the past 6-12 months. Don't know if that relates to anything at all, but it is annoying and sometimes concerns me. It's not really a physical thing -- meaning, I don't have trouble hitting the keys. Rather, I tend to type the wrong letters, transpose letters, etc. I might do things like type "tellers" instead of "letters" for example.

Some days I worry more than others...sometimes I just think -- whatever happens, happens. I was disappointed to find out that I won't be having an appointment with a new neurologist any time soon. The neuro group which my previous doctor belonged to has not found a replacement yet, and they refuse to schedule me with someone other than a movement disorder specialist, since that's what my previous neuro specialized in. :(

Anyway, thanks again for the clarification, and I'm sorry to hear that you are similarly experiencing the limb jerks...but I'm glad to hear that your twitching is mostly gone!



as to a hypocondriac to another. stop worrying. i have anxiety issues. youre anxiety goes up and symptoms star to appear. i dont know how old you are but you sound like youre 40 or 50s....youve lived a long life. what ever happens, happens. you cant control it. you could be worst off. im in my early 20s, it would suck if i get a bad disease in the future, however, i cant controll it...what ever happens, happens. we will deal with it when/ if it comes....try to stay on the positive side.
god bless
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Re: Jerking (myoclonic)

Postby andrewbfs on October 19th, 2012, 9:15 pm

marbito11 wrote:as to a hypocondriac to another. stop worrying. i have anxiety issues. youre anxiety goes up and symptoms star to appear. i dont know how old you are but you sound like youre 40 or 50s....youve lived a long life. what ever happens, happens. you cant control it. you could be worst off. im in my early 20s, it would suck if i get a bad disease in the future, however, i cant controll it...what ever happens, happens. we will deal with it when/ if it comes....try to stay on the positive side.
god bless

Thanks for the "pep talk" - much appreciated! I would not refute the hypochondriac tag, that's for sure. And I do try to stay positive. Some days are harder than others, but it's a process. When your body does weird things that it didn't used to do, like nonstop twitches and such, it can be a tough thing for people like us to come to grips with.

I'm 48 and have a wife and 3 young kids, and sometimes that's a double-edged sword. When my anxiety gets the better of me, I think about the negative impact a bad disease would have on them, and my ability to enjoy them and provide for them, which I think just feeds into the anxiety and makes things that much worse. I try to tell myself "life is a journey - enjoy the ride" -- and I do enjoy it...except when the body starts doing weird things!

I think those feelings are pretty common on this board.

Anyway, enough navel-gazing for today - thanks again and good luck with the twitches, jerks and what-not.
"Illegitimi non carborundum"
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Re: Jerking (myoclonic)

Postby seventhcandle on October 21st, 2012, 1:30 pm

andrewbfs wrote:
marbito11 wrote:as to a hypocondriac to another. stop worrying. i have anxiety issues. youre anxiety goes up and symptoms star to appear. i dont know how old you are but you sound like youre 40 or 50s....youve lived a long life. what ever happens, happens. you cant control it. you could be worst off. im in my early 20s, it would suck if i get a bad disease in the future, however, i cant controll it...what ever happens, happens. we will deal with it when/ if it comes....try to stay on the positive side.
god bless

Thanks for the "pep talk" - much appreciated! I would not refute the hypochondriac tag, that's for sure. And I do try to stay positive. Some days are harder than others, but it's a process. When your body does weird things that it didn't used to do, like nonstop twitches and such, it can be a tough thing for people like us to come to grips with.

I'm 48 and have a wife and 3 young kids, and sometimes that's a double-edged sword. When my anxiety gets the better of me, I think about the negative impact a bad disease would have on them, and my ability to enjoy them and provide for them, which I think just feeds into the anxiety and makes things that much worse. I try to tell myself "life is a journey - enjoy the ride" -- and I do enjoy it...except when the body starts doing weird things!

I think those feelings are pretty common on this board.

Anyway, enough navel-gazing for today - thanks again and good luck with the twitches, jerks and what-not.
"Illegitimi non carborundum"


I got like a one week break from this myoclonic jerking only to have it come back full force last night (totally sleepless night) thanks to some lavender oil. Also got a likely permanent increase in frequency/intensity/location of twitches. So easy to get worse...takes forever to get better.
Been on the BFS journey since 6/26/12...

Twitch way do I go from here?

BFS does get better with time. Almost two years in and able to do almost everything I could do before I had this condition. Still twitching away of course...
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Re: Jerking (myoclonic)

Postby marbito11 on October 28th, 2012, 10:40 am

seventhcandle wrote:
andrewbfs wrote:
marbito11 wrote:as to a hypocondriac to another. stop worrying. i have anxiety issues. youre anxiety goes up and symptoms star to appear. i dont know how old you are but you sound like youre 40 or 50s....youve lived a long life. what ever happens, happens. you cant control it. you could be worst off. im in my early 20s, it would suck if i get a bad disease in the future, however, i cant controll it...what ever happens, happens. we will deal with it when/ if it comes....try to stay on the positive side.
god bless

Thanks for the "pep talk" - much appreciated! I would not refute the hypochondriac tag, that's for sure. And I do try to stay positive. Some days are harder than others, but it's a process. When your body does weird things that it didn't used to do, like nonstop twitches and such, it can be a tough thing for people like us to come to grips with.

I'm 48 and have a wife and 3 young kids, and sometimes that's a double-edged sword. When my anxiety gets the better of me, I think about the negative impact a bad disease would have on them, and my ability to enjoy them and provide for them, which I think just feeds into the anxiety and makes things that much worse. I try to tell myself "life is a journey - enjoy the ride" -- and I do enjoy it...except when the body starts doing weird things!

I think those feelings are pretty common on this board.

Anyway, enough navel-gazing for today - thanks again and good luck with the twitches, jerks and what-not.
"Illegitimi non carborundum"


I got like a one week break from this myoclonic jerking only to have it come back full force last night (totally sleepless night) thanks to some lavender oil. Also got a likely permanent increase in frequency/intensity/location of twitches. So easy to get worse...takes forever to get better.




lol,same thing here. i had like 30 sleep starts last night. only had like 3 hours of sleep. well, thats what i get for drinking caffein. btw, has anyone had weird finger twitches? like the ones that move your entire finger for a second? it happened 3 times just now with different times in between them. im starting to think it may be myoclonic siezures.
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Re: Jerking (myoclonic)

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