Guest guest Posted September 25, 2002 Report Share Posted September 25, 2002 That sounds really terrible. It sounds a little like terets, but I don't know what other things cause that type of thing. Have you seen a neurologist and not just a neurosurgeon? They might be able to do some testing that could correctly diagnose this and find the right meds for you. That sounds really awful and painful. Do you walk or are you in a wheelchair? I ask because I am thinking if you are walking it would be scary to have that happen while you are up and then knock you down. Well I am just sorry this is happening I hope you will be able to have it corrected -- Myoclonus Jerks Hi For the past, oh, three months or so, as soon as I relax I get a quick, electrical shooting sensation that makes that body part flail. Most of the time it occurs in my back and my back will arch. However, lately it's been happening in almost every body part. My legs will flail when the shock comes, my arms now flail as soon as I get comfortable in a sitting position and my neck now does it and it flings my head backwards with a very painful and almost violent jerk. I finally told my physiatrist about these yesterday at my visit and he said they're called Myoclonic Jerks and he prescribed Klonapin (sp) for them. I took the first one last night and it completely stopped the electrical shocks, but wiped me out 'till nine this morning. I was zonked and if it wasn't for the phone ringing in my ear at nine, I really think I would have continued to sleep (very unlike me...usually up around 6a.m. be it from pain or the alarm clock - which I completely slept through this morning.) I love the fact that it stopped the jerks though. I dread going to bed because of these. Once they start they don't stop until I fall asleep, however, once five-seven hit me, I'm so awake I can't go to sleep, so I have to stay awake until I can't keep my eyes open any longer and then the shocks don't bother me as much. I sound like a Whiner, but they really are violent in nature when they occur, there's no way to predict when they're going to happen, there's no way to momentarily stop them (like you can with " ticking " sometimes by tightening that muscle for a few seconds.) They're scary too. Anyway, I was wondering if anyone else experiences these and if so, what do you know about them? I can't figure out why they're starting now after all these years and why once they started, they got so worse in such a short time (started only at bed time - we all experience this at one time or another - you start to fall asleep and then you are awoken with a quick jerk in your body.) Then it went to anytime I was relaxing and laying down. Now it happens as soon as I sit and feel slightly relaxed. I'm worried that they'll start occuring all the time since they've progressed so far in this short amount of time (no, I didn't ask this of my doctor.) Also, does anyone else have a heightened " scare. " If someone comes up on me in the house or any where else and I don't see them coming, I jump out of my skin and it starts with the electrical shock. I shouldn't be doing this though and I never used to do this. I can't think of the word for this...but hopefully you know what I mean. I know, startle response. For those that have these...what meds do you use? I've tried two others that didn't work as well as this Klonapin, but I can't ever imagine using the Klonapin during the day to stop the day attacks. I read that they use anti-seizure meds for these, but I've tried almost everyone of these drugs and I can't tolerate them, so they're out of the question. Thanks to anyone that responds. Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2002 Report Share Posted September 25, 2002 That sounds really terrible. It sounds a little like terets, but I don't know what other things cause that type of thing. Have you seen a neurologist and not just a neurosurgeon? They might be able to do some testing that could correctly diagnose this and find the right meds for you. That sounds really awful and painful. Do you walk or are you in a wheelchair? I ask because I am thinking if you are walking it would be scary to have that happen while you are up and then knock you down. Well I am just sorry this is happening I hope you will be able to have it corrected -- Myoclonus Jerks Hi For the past, oh, three months or so, as soon as I relax I get a quick, electrical shooting sensation that makes that body part flail. Most of the time it occurs in my back and my back will arch. However, lately it's been happening in almost every body part. My legs will flail when the shock comes, my arms now flail as soon as I get comfortable in a sitting position and my neck now does it and it flings my head backwards with a very painful and almost violent jerk. I finally told my physiatrist about these yesterday at my visit and he said they're called Myoclonic Jerks and he prescribed Klonapin (sp) for them. I took the first one last night and it completely stopped the electrical shocks, but wiped me out 'till nine this morning. I was zonked and if it wasn't for the phone ringing in my ear at nine, I really think I would have continued to sleep (very unlike me...usually up around 6a.m. be it from pain or the alarm clock - which I completely slept through this morning.) I love the fact that it stopped the jerks though. I dread going to bed because of these. Once they start they don't stop until I fall asleep, however, once five-seven hit me, I'm so awake I can't go to sleep, so I have to stay awake until I can't keep my eyes open any longer and then the shocks don't bother me as much. I sound like a Whiner, but they really are violent in nature when they occur, there's no way to predict when they're going to happen, there's no way to momentarily stop them (like you can with " ticking " sometimes by tightening that muscle for a few seconds.) They're scary too. Anyway, I was wondering if anyone else experiences these and if so, what do you know about them? I can't figure out why they're starting now after all these years and why once they started, they got so worse in such a short time (started only at bed time - we all experience this at one time or another - you start to fall asleep and then you are awoken with a quick jerk in your body.) Then it went to anytime I was relaxing and laying down. Now it happens as soon as I sit and feel slightly relaxed. I'm worried that they'll start occuring all the time since they've progressed so far in this short amount of time (no, I didn't ask this of my doctor.) Also, does anyone else have a heightened " scare. " If someone comes up on me in the house or any where else and I don't see them coming, I jump out of my skin and it starts with the electrical shock. I shouldn't be doing this though and I never used to do this. I can't think of the word for this...but hopefully you know what I mean. I know, startle response. For those that have these...what meds do you use? I've tried two others that didn't work as well as this Klonapin, but I can't ever imagine using the Klonapin during the day to stop the day attacks. I read that they use anti-seizure meds for these, but I've tried almost everyone of these drugs and I can't tolerate them, so they're out of the question. Thanks to anyone that responds. Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2002 Report Share Posted September 25, 2002 At 11:18 AM 9/25/2002 -0400, Moulton wrote: >For the past, oh, three months or so, as soon as I relax I get a quick, >electrical shooting sensation that makes that body part flail. I wonder if this is the same thing I am experiencing, I call them " spasms " . Every night when I go to bed, as soon as I relax to the point of falling asleep, my right leg will " flail " every 8 seconds or so. Could say there is a very mild electrical shooting sensation that sets it off, no pain unless I am laying on my stomach then my leg wants to jerk down which puts stress on my hip joint and sacrum. Kinda like Restless Leg Syndrome. This never happens to me in my arms, neck, or back. >I finally told my physiatrist about these yesterday at my visit and he said >they're called Myoclonic Jerks and he prescribed Klonapin (sp) for them. I >took the first one last night and it completely stopped the electrical >shocks, but wiped me out 'till nine this morning. Thats what I need, to be completely wiped out for 8-9 hours a night!! I will ask my rehab doc if this will help. She prescribes me Restoril or Ambien but I hate to take either one except as a last resort. >I love the fact that it stopped the jerks though. I dread going to bed >because of these. Me too, thats why frequently I am still up at 3-4 AM, I scheduled all my classes for noon or later. One thing that does help is to just get up and walk the treadmill for 3 minutes or so. >Once they start they don't stop until I fall asleep, >however, once five-seven hit me, I'm so awake I can't go to sleep, so I have >to stay awake until I can't keep my eyes open any longer and then the shocks >don't bother me as much. > >I sound like a Whiner, but they really are violent in nature Well Whiner, this is a good post, thanks for the info, you are not whining, discussion and sharing of ideas and problems is what this list is all about. The term Myoclonus is partially familiar to me, I used to have " Clonus " described by me as uncontrollable shaking of the foot if hanging free as in sitting on the edge of an exercise table. Dr and PT called it Clonus. It seemed to go away when we started the sciatic nerve stretching and it comes back when I havent been stretched in awhile. Thanks for the info Kathy, Rick Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2002 Report Share Posted September 25, 2002 At 11:18 AM 9/25/2002 -0400, Moulton wrote: >For the past, oh, three months or so, as soon as I relax I get a quick, >electrical shooting sensation that makes that body part flail. I wonder if this is the same thing I am experiencing, I call them " spasms " . Every night when I go to bed, as soon as I relax to the point of falling asleep, my right leg will " flail " every 8 seconds or so. Could say there is a very mild electrical shooting sensation that sets it off, no pain unless I am laying on my stomach then my leg wants to jerk down which puts stress on my hip joint and sacrum. Kinda like Restless Leg Syndrome. This never happens to me in my arms, neck, or back. >I finally told my physiatrist about these yesterday at my visit and he said >they're called Myoclonic Jerks and he prescribed Klonapin (sp) for them. I >took the first one last night and it completely stopped the electrical >shocks, but wiped me out 'till nine this morning. Thats what I need, to be completely wiped out for 8-9 hours a night!! I will ask my rehab doc if this will help. She prescribes me Restoril or Ambien but I hate to take either one except as a last resort. >I love the fact that it stopped the jerks though. I dread going to bed >because of these. Me too, thats why frequently I am still up at 3-4 AM, I scheduled all my classes for noon or later. One thing that does help is to just get up and walk the treadmill for 3 minutes or so. >Once they start they don't stop until I fall asleep, >however, once five-seven hit me, I'm so awake I can't go to sleep, so I have >to stay awake until I can't keep my eyes open any longer and then the shocks >don't bother me as much. > >I sound like a Whiner, but they really are violent in nature Well Whiner, this is a good post, thanks for the info, you are not whining, discussion and sharing of ideas and problems is what this list is all about. The term Myoclonus is partially familiar to me, I used to have " Clonus " described by me as uncontrollable shaking of the foot if hanging free as in sitting on the edge of an exercise table. Dr and PT called it Clonus. It seemed to go away when we started the sciatic nerve stretching and it comes back when I havent been stretched in awhile. Thanks for the info Kathy, Rick Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2002 Report Share Posted September 25, 2002 At 11:18 AM 9/25/2002 -0400, Moulton wrote: >For the past, oh, three months or so, as soon as I relax I get a quick, >electrical shooting sensation that makes that body part flail. I wonder if this is the same thing I am experiencing, I call them " spasms " . Every night when I go to bed, as soon as I relax to the point of falling asleep, my right leg will " flail " every 8 seconds or so. Could say there is a very mild electrical shooting sensation that sets it off, no pain unless I am laying on my stomach then my leg wants to jerk down which puts stress on my hip joint and sacrum. Kinda like Restless Leg Syndrome. This never happens to me in my arms, neck, or back. >I finally told my physiatrist about these yesterday at my visit and he said >they're called Myoclonic Jerks and he prescribed Klonapin (sp) for them. I >took the first one last night and it completely stopped the electrical >shocks, but wiped me out 'till nine this morning. Thats what I need, to be completely wiped out for 8-9 hours a night!! I will ask my rehab doc if this will help. She prescribes me Restoril or Ambien but I hate to take either one except as a last resort. >I love the fact that it stopped the jerks though. I dread going to bed >because of these. Me too, thats why frequently I am still up at 3-4 AM, I scheduled all my classes for noon or later. One thing that does help is to just get up and walk the treadmill for 3 minutes or so. >Once they start they don't stop until I fall asleep, >however, once five-seven hit me, I'm so awake I can't go to sleep, so I have >to stay awake until I can't keep my eyes open any longer and then the shocks >don't bother me as much. > >I sound like a Whiner, but they really are violent in nature Well Whiner, this is a good post, thanks for the info, you are not whining, discussion and sharing of ideas and problems is what this list is all about. The term Myoclonus is partially familiar to me, I used to have " Clonus " described by me as uncontrollable shaking of the foot if hanging free as in sitting on the edge of an exercise table. Dr and PT called it Clonus. It seemed to go away when we started the sciatic nerve stretching and it comes back when I havent been stretched in awhile. Thanks for the info Kathy, Rick Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2002 Report Share Posted September 26, 2002 Hi Kathy, First off all where must i start with you. Every time i reconice so much off your symtones. I'll get carbamazepine 3 x 200mg for it. So now i only get troubles when i laying on my back ore sit to long on a chair. The sad thing is that i've to get whole 3 hours to get ready to go to my work. I can't do this anymore so i've to quit my job. The pain in my leg is not changing it is there for 24 hours ore sometimes i can't stand up and feel nothing. Very scary it is. When you go to tell me the good thing's , if it take you tree years ,i go to wait for it. Take care, and you know , there is always someone that understand this this fustrating things. Jan.Willem. Myoclonus Jerks > Hi > > For the past, oh, three months or so, as soon as I relax I get a quick, > electrical shooting sensation that makes that body part flail. Most of the > time it occurs in my back and my back will arch. However, lately it's been > happening in almost every body part. My legs will flail when the shock > comes, my arms now flail as soon as I get comfortable in a sitting position > and my neck now does it and it flings my head backwards with a very painful > and almost violent jerk. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2002 Report Share Posted September 26, 2002 Hi Rick, For me also ,but sometimes i get a heavy feeling like if i go to fall down in my bed. I do not have the good words for it. my legs are go up , just if i get a electricial shock. After then al most every time i'm dizzy and have a bad headace. Jan.Willem Re: Myoclonus Jerks > At 11:18 AM 9/25/2002 -0400, Moulton wrote: > >For the past, oh, three months or so, as soon as I relax I get a quick, > >electrical shooting sensation that makes that body part flail. > > I wonder if this is the same thing I am experiencing, I call them " spasms " . > Every night when I go to bed, as soon as I relax to the point of falling > asleep, my right leg will " flail " every 8 seconds or so. Could say there is > a very mild electrical shooting sensation that sets it off, no pain unless > I am laying on my stomach then my leg wants to jerk down which puts stress > on my hip joint and sacrum. Kinda like Restless Leg Syndrome. This never > happens to me in my arms, neck, or back. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2002 Report Share Posted November 6, 2002 Hi I just saw my physiatrist yesterday. Had botox in my calves for the spasticity and we discussed the myoclonus jerks because although the Klonapin completely rids the jerks at night, I'm still getting them during the day, but only when I'm relaxed; which he said is typical myoclonus. He did say though that if you are on high doses of narcotics that this too can cause myoclonic jerks, but he doesn't think that's what's happening with me as it only occurs when I relax as I said above. He said I could take Klonapin during the day if they (the jerks) are getting in my way, but he also advised about the drowsiness I'd feel, and I agreed, it's not worth feeling sleepy all day to just get rid of jerks that only occur upon resting. However, Ardie, yours are much different and they may be due to nerve damage or your high narcotic dosage (if I remember right, you're on a really high dose aren't you?) Definitely bring this up with your doctor... Kathy Re: myoclonus jerks > Kathy will be on at some point, she has Myoclonus Jerks and takes Klonopin. > My doc gave me some Klonopin last week to try but I havent yet. Actually > my " jerks " have calmed quite a bit. > > Rick > > At 09:41 PM 11/5/2002 -0800, Ardie wrote: > >I have > >developed myoclonus which is your nerves misfiring and jerking > >all over the place. I have never heard of any one on the list > >having it before. It is not spasicity. If it wasn't so sad it > >would be funny you try to eat your dinner and you jerk and your > >dinner goes flying all over the place or the same if you are > >reading a book and you start jerking and the book ends up in > >someone else's lap. > > > >Ardie > > > >mymocka wrote: > > > > > > Ardie, > > > > > > You did nothing wrong. I think that is just put at the end of > > > everybody's Post as a gentle reminder. None of us are Dr.'s. > > > We can only write about our Experiences. What I think that is > > > saying is that this List can not be used in place of going to > > > your Dr, or in place of professional Medical Advice. > > > > > > Again, you did nothing wrong. > > > > > > Hope that helps. > > > > > > Me > > > mymocha@... > > > > > > > Maybe I missed something, but I thought we were here to share > > > > what has worked for us. I thought I was being helpful then I get > > > > this giant post about not being a doctor. Do we have some new > > > > know it all running the list? From now on I don't care if you > > > > get so constipated you explode. > > > > > > > > > > > > > > Try flax seed oil. It comes in capsule form so it is extremely > > > > > easy to take. > > > > > > > > >> > > > > > > NOT INTENDED AS MEDICAL ADVICE. WE ARE NOT DOCTORS. > > > > > Need help with list? Email dkmoulton@t...,mzw4@t..., rick@t... > > > > > > > > > > NOT INTENDED AS MEDICAL ADVICE. WE ARE NOT DOCTORS. > > > Need help with list? Email > > dkmoulton@...,mzw4@..., rick@... > > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.