myoclonic jerks

[bm]

I have recently had substantial trouble sleeping. For the past few weeks, it seems like as soon as I fall asleep, my body (usually my upper torso, but sometimes my legs or arms) jerks me awake.  This will happen several times repeatedly, where I fall asleep and am immediately awakened by a jerk.  I also started to get small twitches in my body during the daytime.  I went to my family physician who said I have myoclonic jerks and prescribed klonopin, and told me they would go away.  He also said as a precaution I should see a neurologist which I am doing so in late October.  In the meantime, I have been taking the klonopin before bedtime which allows me to sleep at night.  I have had two nights in the last 10 days where I have been able to sleep without the klonopin.  My questions are, is this the sort of thing that usually goes away by itself, or can it stay with you a long time and get progressively worse?  And if it does stay with you isnt there a likelihood that tolerance would develop with klonopin, and are there any other treatments that could work?

[CCF-Neuro-M.D.-JT]

From your description of the jerks at the onset of sleep, it sounds like you have a sleep disorder (parasomnia) called somnolescent starts or hypnic jerks. As you fall asleep, motor parts of your brain become spontaneously excited and cause you to jerk. Fortunately, it is not associated with epilepsy and it is a common benign condition. However, in many patients this can be frustrating as it significantly disturbs their sleep as it did in your case. Your doc put you on the right medication which can certainly suppress your symptoms so that you can sleep once it is titrated to the right dose for you.  Unfortunately it can come right back in most patients once they stop their meds, even if the symptoms have been controlled over a long period of time. It can also be made worse with stress and fatigue. I can understand your concern for tolerance with long term therapy, but that has not been a major problem for our population of patients.

You may benefit from an overnight sleep study with EEG recording to accurately define your problem. Your neurologist should be able to direct you properly after a careful history and neuro exam.

For more information, you can go to the American Academy of Sleep Medicine webpage at www.aasmnet.org or call [phone]. Best of luck to you.

[jan]

Hi bm,
I have had myoclonic jerks I think forever, but it had stopped for the most part quite some time ago. Now, I only get them when I am really tired, like with a 48 hr video/eeg I just had. They really sleep deprived me!!!  I would start to doze just to be jolted awake, several times, before actually being able to sleep and during the day I was experiencing them, also. I was thinking great, here I am being video taped for seizures (to rule them out)jumping all over, I just hope there wasn't any correlation with eeg changes. My husband and son also have these, but just 1 or 2 before going off.
I was wondering if you get any strange sensations also, like a tingling from head to chest and into arms before dozing? The back of my eyelids go from dark to real light, too. These don't coincide with the jerking, but happen with the same timing as the jerks would. This has just started happen'g to me in the past several months and it can happen several times just as I am dozing and I have to seemingly start over again as with the myoclonic jerks.
Does anybody else experience this? If so, do you know why?

[shamrock]

I don't know if the following will help you, but I thought I'd pass it on.

Last week, after 3-1/2 years of suffering, I was diagnosed with hypnagogic jerks which is a sleep disorder.  I told the neurologist just as I was drifting off to sleep my body would jerk or sometimes it was just my head. It was awful.  Sometimes it was relentless, sometimes not so severe.  Either way, it prevented me from a good night's sleep, even consecutive hours or minutes of sleep.  Two years ago I was so desperate I checked myself in at the local hospital for their sleep study, but as my luck would have it the symptoms were not that severe that night and the dr. said it was probably anxiety.  Things got worse being so sleep deprived and I finally sought the help of a neurologist, who sent me for another sleep study (to a different hospital) on 9/01/01.  This time it showed up.  I was told there are four stages of sleep and I miss 2-3 of them and my body jerks because I'm falling so quick and hard to stage 3 and 4 passing up stages 1 and 2, so my body is startled and pulls back or forward to adjust for that "free-fall".  I was diagnosed with a sleep apnea.

I also asked what the difference was/is between a myoclonic jerk and a hypnagogic jerk and the dr. told me hypnagogic usually is associated with sleep where myoclonic jerks you would feel limbs or body movements throughout the day.

The dr. put me on clonazepam which seems to help somewhat.  It is only my fourth day taking the new medication so maybe it has to get in my system some more to really be effective.

I also asked how does someone get this?  She said there really is no answer, just like how does someone get cancer?

Hope this helps.


Shamrock

P.S.  I had a cat scan, EEG, blood work, echocardiogram and one sleep study and everything was negative.  I think it's great that you're going to a neurologist, because she finally help me.

[bm]

jan

How were you treated for your myoclonic jerks?  Did you take any drug therapy? was there any non drug therapy that worked?  Did the problem just go away by itself for you?

[jan]

Hi bm,
I don't know why my jerks stopped. Maybe it is the beta blocker I am on? I really don't know. Sometimes (rarely) when my legs are crossed I will get one, it looks like someone is testing my reflexes. One jerk that hasn't stopped is in my neck, that is a little bit painful and embarrassing, but it doesn't happen all that often, either.  I am sorry I am no help.

[CHADDY]

Hello, I read your comments.  I have experienced these for a long time.  I thought it was normal stuff though, because it's happened for so long.  I have been on Ambien for a little while now and take it as needed and it seems to do the trick for me.  It seems that when I take it, it is the only time that I get a good nights sleep.  You might want to ask your Doc about that and see if it would help.  (Just a suggestion though, because I take it because of the epilepsy medication I take keeps me awake and makes me hyper sometimes.)  It is nice to have a place to read what others go through, it makes you not feel so alone.

[jan]

Chaddy, funny that you mention epilepsy, because I know that the dr. posted it has no relation to myoclonics, but...  The fact is it doesn't for all, but for some yes it can be related. If you just use a search engine and type in myoclonic you will find this to be the case. It was actually harder finding the fact that it wasn't necessarily from epilepsy, that those w/o epilepsy could have it, too.

[bm]

Hi chaddy and jan.  I am curious as to how much the jerks effect or effected your sleep.  Did you or do you have the same problem as I do whereby as soon as you are falling asleep you get a jerk that wakes you up? and do these jerks happen to you repeatedly throughout the night?

[CCF-Neuro-M.D.-JT]

I caught your comment about myoclonus and epilepsy with regard to hypnic jerks by chance, and just wanted to make sure you (as well as others reading about this common disorder)understood the difference. Myoclonus is definitely related to epilepsy and there are many syndromes that tie the two together.  What you may be confusing is hypnic jerks which are the recurrent bodily jerks at the BEGINNING or ONSET of falling asleep with nocturnal myoclonus (a misnomer anyway) that most people experience DURING the deeper stages of sleep. It's the little jerks you can see people have when they're deep asleep and is a normal phenomena. The biggest difference between myoclonus in epilepsy and hypnic jerks and/or noctunal "myoclonus" is that there are no EEG changes in the latter two. There is a related sleep myoclonus that occurs in the hands and face of men associated with sleep apnea, but this does NOT usually cause loss of sleep. It seems like just a matter of semantics but there are very important differences in the diagnoses and treatment of these various disorders. Just wanted to set the record straight.

[jan]

Thank you for the comment, but now I am really confused. I was told that what you are describing as hypnic jerks were myoclonic. When I looked up myoclonic I found it relating to epilepsy, but with mention of it being seen in normal individuals just as they would doze and that that was normal. ???

[jan]

bm,
Usually, when I had them, it was just once or twice as I would doze off. (Yes, they would wake me up). But each time I was in the hospital I had them throughout the night, so maybe it was just stress then. I don't know. It was so hard for me to sleep in the hospital, all that noise,the lights, and being wired up (for cardiac monitoring and eegs)! Again, I apologize for not being able to give you any ideas or help.

[Magdalena]

Wow, can I relate!

I suffered from these for a long time.  Clonazepam helped and over a years or so, they dissipated.  I do ocassionally get them but infrequently.

Mine was also very severe.  It started with something like the sleep starts you described.  Gradually, they affected my entire trunk.  They also occurred on and off all day long when I was trying to read, watch TV, or just in a relaxed state of mind.  It was awful.  I would get wave upon wave of severe truncal sustained jerks (I guess you can't call those jerks at that point) that seemed like they would never let up.  My abdomen was so sore from these contractions.

No one knows what caused these to this day.  I live in fear of them recurring.  Sometimes, when I do get a jerk now and again, it seems to also be stimulated by a sound.  Don't ask me why, but some sounds seem to cause me to jerk.

You might ask for a 48-hour ambulatory EEG.  I had several and they all showed abnormalities (slowing of waves where there shouldn't have been none) during the day.

Who knows.  No conclusions were drawn from that except to state that my test results were abnormal.

I'm no longer on clonazepam (Klonopin) because I do take Dilantin now for seizures.  Are these related?  I don't know because I'm not a doctor.

Hope this helps.

[jan]

I was just diagnosed with seizure disorder Friday. :o(  The epileptologist thinks that I had a stroke (MRI shows a lesion) and that it has caused seizure activity. Also, that the one and only (thus far) seizure I had was brought out by Zoloft.
Anyway, how long I have had this "stroke" is not known, some say maybe I had it in utero, but the epileptologist thinks it happened a few yrs. ago when my troubles began.  ???
I am posting this because maybe that is why I had the jerks? I do notice since the seizure that during the day my limbs jerk, but I haven't really had the ones falling asleep for some time. My right sided is affected by all this (numbness, tingling, heaviness, tightness that is painful). They are, also, doing tests tomorrow to rule out MS because of the combo of symptoms I have.

Mag, I just read, somewhere, today that with epilepsy music tones can trigger some seizures. 'Not saying you have epilepsy, but if it can do it with epileptics???
My 3rd EEG showed only slowing, but my 48 hr. video/eeg showed the spikes. Were you sleep deprived for your eeg?
Did you have an MRI?

[CHADDY]

Hey you guys,  I've been reading your comments and thought I would say that the Epitleptologist found slowing on the LTL area that sometimes would show up in the RTL area as well, but not all of the time, while the LTL is always.  
The sleep problems that I have had would be the jerks but that has stopped but one night my wife woke me up and said that I was jerking repeatedly during my sleep in a short amount of time.  She has been woke up from me doing this before.
I am kind of wondering because lately, I have had speech difficulties like speaking and then it's like my brain is put on pause for a second or two and then I can get the word out(ie. the word talk is "t...t...aaaaaaaaalllllkk!"  My thoughts and all of the processes slow down at times and then my face and mouth seem to get numb only on the left side and my mouth draws up and I can't move the left side of my mouth.  Also my left arm after some of this is numb and I can't really use it, it's just kind of there.  I can move etc, but its like any activity to it is cut off and there is a soreness in it.  Also my left leg will be numb and I walk with a limp for a while after some really bad seizures.
The doc's though say that they can't find the seizure activity on an EEG other than the slowing and the occasional popping up slow waves on the right side.  But then again...I don't think I've ever been having one or fortunate enough to have one during the EEG.  All I know is that I lived in an almost constant state of jello(the way my body felt) and dizziness for about 2 - 3 years.  Then I found out the video games made me feel that way as well as police lights, lightning at night, and computer screens at certain times.  So, recently my neurologist said that she wanted me to get a second opinion and I suggested a dr. that I heard was awesome and she never called me back...so tmw I think I'll call and remind her that they owe me a call.  Smile.  Not mad, just thoughtful 8-)  Sorry for the length, I don't mean to offend anyone.  
Any comments or suggestions, or anything...or as we say here "anythang"
thanks

[jan]

Chaddy,
How about trying to get a video/eeg? Mine was 48 hrs. long, but they do them longer. They sleep deprive you to lower your threshold and they get to see your eeg during sleep. I know all 3x's with the reg. eeg they expected me to sleep, but I didn't, so... I hear that often when it (seizure activity) doesn't show while awake, it will during sleep.  Just a thought.

[CHADDY]

I have had a couple of those where I stayed in the hospital for 8 days each time and they did the video monitoring and also a couple of times with those extremely attractive ones that I wore home for 3 days.  The also probably atleast 20 EEG's outside of those.  They show the slowing on the left side of the brain and sometimes on the right.  More later...bye

[jan]

Just found this link with this statement and thought I would post it:


http://www.epilepsytoronto.org/learning/topic/sleep/


Sleep starts or epilepsy?
Everyone's muscles jerk as they fall asleep. These are called sleep starts or myoclonic jerks. While they are often mistaken for seizures, in fact, they are a normal part of fallng asleep.

[C.Sherry]

Hi everyone - I have also been reading your comments since my fiance' had a disturbing nights sleep yesterday.  For a couple of weeks he has had a lot of trouble falling asleep.  He took sleeping pills and stopped taking them about a week ago.  His body always jerks just as he falls asleep but this only happens once a night.  Last night his whole body jerked 2-3 times a minute from 9 at night until 6 in the morning when he finally got up.  I believed it happened less in the morning but I was also sleeping so I didn't notice them as much. He had taken Tylenol Flu Nighttime pills before bed so I thought maybe he was having some sort of allergic reaction.  I didn't know what was wrong because he jerked hundreds of times throughout the night.  Does anyone have any idea what is going on and if this is serious?  He doesn't have a regualar doctor since we moved so I didn't know who to ask right now.  Please offer any suggestions you may have.  Thanks!

[C.Sherry]

Hi everyone - I have also been reading your comments since my fiance' had a disturbing nights sleep yesterday.  For a couple of weeks he has had a lot of trouble falling asleep.  He took sleeping pills and stopped taking them about a week ago.  His body always jerks just as he falls asleep but this only happens once a night.  Last night his whole body jerked 2-3 times a minute from 9 at night until 6 in the morning when he finally got up.  I believed it happened less in the morning but I was also sleeping so I didn't notice them as much. He had taken Tylenol Flu Nighttime pills before bed so I thought maybe he was having some sort of allergic reaction.  I didn't know what was wrong because he jerked hundreds of times throughout the night.  Does anyone have any idea what is going on and if this is serious?  He doesn't have a regualar doctor since we moved so I didn't know who to ask right now.  Please offer any suggestions you may have.  Thanks!

[Jules C]

I was just diagnosed as having hypnic jerks.  It started in January '02 and has continued since.  The first week I had them I was lucky if I slept 2 hours a night (a couple of nights I got no sleep at all!!!).  I was tired enough to sleep, but the jerks wouldn't allow me to get there!  I had no idea what was going on.

I contacted my doctor and he put me on Temazapem (a sleep inducing medication), which worked for some time, then it's effectiveness wore off.  So then I went to a neurologist (to rule out any neurological problems) who put me on Clonazapem.  It seems to help, but before I fall asleep I still do feel the jerking, just not as severe.  The medication helps me get through those jerks and allows me to sleep through the night, so I have been getting between 6-7 hours of sleep a night.  I feel that my problem may have started with stress, so I am trying to eliminate some of my stress by taking daily walks (afternoon or early evening) and to relax for one hour or so before bedtime (read, take a bath, etc.) I also eliminated all caffeine, diet products and I limit my amount of sugar intake.  I have noticed that since I have taken these extra measures I have been able to take a short nap in the afternoon with no jerking and have fallen asleep on occasion without the medication at night.  You might want to check with your doctor to see if these things might help your situation too.

Good luck to all of you.  I know first-hand how frustrating this situation is, but there are a lot of other people out there with the same problem and hopefully by talking with each other and keeping each other informed on our progresses, we can get some ideas and opinions that might work for our individual situations.

[shena]

I am a 16 year old girl with severe myoclonus.  I have trouble eating, drinking and the jerks are limiting my ability to do life skills. Any one with similar experiences please e-mail me at ***@****

[Arlo]

greetings all...   your posts have been helpful and i'm also trying to figure out whats wrong with me...  i seem to have the jerks right before i fall asleap that wake me up and sometimes during the day but they only seem to come when my body is at rest...  now a couple other symptoms (maybe not even related) that i seem to have is muscle twitchs maily in the thigh areas and sometimes in other portions of the body and a couple different times they lasted for almost a day... i am laid off right now so i have very bad sleeping patterns and this uneasyness to fall asleap seems to be much greater lately..  almost every night..   along with the twitches i also get a weird feeling maybe in my lungs or in the chest area (very hard to explain)...  not painful but it seems to scare me awake and i have to almost sit up and concentrate on becoming calm before i attempt to fall back asleap...   seems like my heart beats maybe faster or harder... (maybe due to the fact that it kinda scares me)...  long deep breaths seem to help when this happens...  i guess what i'm trying to get at is i feel very werid (thats really the besy way i can describe the feeling) before i fall asleap and if i get up and move around the jerks seem to stop but not always the twitching... sometimes (but only seems to be after i have been awake for a normal day) maybe i have multiple problems but something is in no doubt wrong with me right before i fall asleap...   any suggestions (obviously i will be seeing a doc but i'd like to have some input for him)