Guest guest Posted January 6, 2005 Report Share Posted January 6, 2005 I have not much to say, my only experience with twitchiching is with my son. He did a major jerk as well as a few little ones wich seemed to be conneted with taking Taurine. On the other hand Taurine helps a lot of people with seizure type activity. I myself have a tendancy for jerking when I try to go to sleep. I find this scary as well. For myself I believe, that it is to do with adrenal/pituitary issues. It is often linked with breaks in taking ALA. Dagmar. [ ] Seizures, Twitching and Jerking LONG POST SORRY I am sorry for the crosspost, but I want to see if anyone else has this issue and what suggestions someone may have. I want to explain we sought out Neurology last April 2004. had started the jerking, twitching and intensely not sleeping as soon as we started GFCFSF diet in January of 2004. He has staring spells and still does that I did not know whether they were seizures or periods of exhaustion where he mentally checked out for a few minutes. Still do not know for sure. We are still having the jerks and twitches all night that interfere with sleep almost every night. He sleeps very little. We have been to children's in Columbus, OH with an abnormal 2 hour EEG and were told they did not see seizure activity. We went to Cleveland Clinic for a 48 hour EEG that had no abnormality to it. I knew after the 1st night they were not picking up his twitches and jerking on the EEG or the Video monitor which was terrible quality. I spent the entire 2nd night writing down each twitch and jerk and where it initiated and how long it lasted. I documented his wakeups and everything. The info was four pages back and front. When I gave it to the neurologist the next day he told me they did not pick up anything and could not see it on the monitor. He said that jerking and twitching at night was normal. I restrained myself and said I have 4 children and yes some jerking and twitching is okay, but all night long every night, at nap times and every time you are exhausted is just not " normal " . When your sleep pattern interferes with you daily activities, it is not normal. I asked the neurologist at Cleveland Clinic can this be Myoclonic Epilepsy, he said no that is in teenagers. He said he did not know what to do besides prescribe a sleeping pill that would last 6 hours. I told him we would stick with Melatonin it had the same effect. I called the Tourette's clinic at Cleveland Clinic and they said no it is not Tourettes because it is only at night and when tired. I asked if he just had incredible self control and held it in until exhausted and tired and he was forced to sit still long enough that he could not help it any more. They said no and I would be wasting my time to take him to the Tourettes Clinic. I Everywhere I turn the answers are I do not know why he does this. I know there is something happening in his brain and I know he hates it. He is tired and irritable and just unhappy. Sleep is scary for him because he knows he will jerk and twitch the second he relaxes and he cannot control it. He sleeps with someone every night. Usually us or his brother one or two nights a week. He simply cannot sleep alone. I am frustrated and disgusted and at the end of my rope, not to mention perpetually sleep deprived. Any suggestions you have would be great. I am going to cross post in the hopes someone has any ideas. We are not on any medications other then supplements and I have another appointment on April 15th to see the neurologist for meds, I am at the end of my understanding and knowledge and I just cannot let him go on like this. I never wanted to do meds without a definite reason for it, or belief in it being necessary, but I just do not know how to help him sleep and cope with night time, stop the jerking and twitching and have a normal day become a pattern. Thanks in advance and sorry this is so long. Becca ======================================================= Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2005 Report Share Posted January 6, 2005 Being GF- he may be B6 and /or B12 deficient. There are types of seizure that is caused by these deficiencies. Most people's B vitamins needs are met by gluten containing foods, due to " enrichment " , so this may be an avenue to explore. -GA [ ] Seizures, Twitching and Jerking LONG POST SORRY I am sorry for the crosspost, but I want to see if anyone else has this issue and what suggestions someone may have. I want to explain we sought out Neurology last April 2004. had started the jerking, twitching and intensely not sleeping as soon as we started GFCFSF diet in January of 2004. He has staring spells and still does that I did not know whether they were seizures or periods of exhaustion where he mentally checked out for a few minutes. Still do not know for sure. We are still having the jerks and twitches all night that interfere with sleep almost every night. He sleeps very little. We have been to children's in Columbus, OH with an abnormal 2 hour EEG and were told they did not see seizure activity. We went to Cleveland Clinic for a 48 hour EEG that had no abnormality to it. I knew after the 1st night they were not picking up his twitches and jerking on the EEG or the Video monitor which was terrible quality. I spent the entire 2nd night writing down each twitch and jerk and where it initiated and how long it lasted. I documented his wakeups and everything. The info was four pages back and front. When I gave it to the neurologist the next day he told me they did not pick up anything and could not see it on the monitor. He said that jerking and twitching at night was normal. I restrained myself and said I have 4 children and yes some jerking and twitching is okay, but all night long every night, at nap times and every time you are exhausted is just not " normal " . When your sleep pattern interferes with you daily activities, it is not normal. I asked the neurologist at Cleveland Clinic can this be Myoclonic Epilepsy, he said no that is in teenagers. He said he did not know what to do besides prescribe a sleeping pill that would last 6 hours. I told him we would stick with Melatonin it had the same effect. I called the Tourette's clinic at Cleveland Clinic and they said no it is not Tourettes because it is only at night and when tired. I asked if he just had incredible self control and held it in until exhausted and tired and he was forced to sit still long enough that he could not help it any more. They said no and I would be wasting my time to take him to the Tourettes Clinic. I Everywhere I turn the answers are I do not know why he does this. I know there is something happening in his brain and I know he hates it. He is tired and irritable and just unhappy. Sleep is scary for him because he knows he will jerk and twitch the second he relaxes and he cannot control it. He sleeps with someone every night. Usually us or his brother one or two nights a week. He simply cannot sleep alone. I am frustrated and disgusted and at the end of my rope, not to mention perpetually sleep deprived. Any suggestions you have would be great. I am going to cross post in the hopes someone has any ideas. We are not on any medications other then supplements and I have another appointment on April 15th to see the neurologist for meds, I am at the end of my understanding and knowledge and I just cannot let him go on like this. I never wanted to do meds without a definite reason for it, or belief in it being necessary, but I just do not know how to help him sleep and cope with night time, stop the jerking and twitching and have a normal day become a pattern. Thanks in advance and sorry this is so long. Becca ======================================================= Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2005 Report Share Posted January 6, 2005 Becca, I get the jerking and twitching at night. Fortunately for me it isn't so severe that it happens all the time. It does wake me up when it does happen. My partner complains about it. My mercury poisoned friend tells me the same thing happens to her. Most of my MS friends tell me the same thing happens to them. I don't know what the answers are. If I recall correctly I think my MS friends say that magnesium helps. I'll post on my MS group and see if anyone knows more. > I am sorry for the crosspost, but I want to see if anyone else has this > issue and what suggestions someone may have. > > I want to explain we sought out Neurology last April 2004. had > started the jerking, twitching and intensely not sleeping as soon as we > started GFCFSF diet in January of 2004. He has staring spells and still > does that I did not know whether they were seizures or periods of exhaustion > where he mentally checked out for a few minutes. Still do not know for > sure. > > We are still having the jerks and twitches all night that interfere with > sleep almost every night. He sleeps very little. We have been to > children's in Columbus, OH with an abnormal 2 hour EEG and were told they > did not see seizure activity. We went to Cleveland Clinic for a 48 hour EEG > that had no abnormality to it. I knew after the 1st night they were not > picking up his twitches and jerking on the EEG or the Video monitor which > was terrible quality. I spent the entire 2nd night writing down each twitch > and jerk and where it initiated and how long it lasted. I documented his > wakeups and everything. The info was four pages back and front. When I > gave it to the neurologist the next day he told me they did not pick up > anything and could not see it on the monitor. He said that jerking and > twitching at night was normal. I restrained myself and said I have 4 > children and yes some jerking and twitching is okay, but all night long > every night, at nap times and every time you are exhausted is just not > " normal " . When your sleep pattern interferes with you daily activities, it > is not normal. I asked the neurologist at Cleveland Clinic can this be > Myoclonic Epilepsy, he said no that is in teenagers. He said he did not know > what to do besides prescribe a sleeping pill that would last 6 hours. I > told him we would stick with Melatonin it had the same effect. > > I called the Tourette's clinic at Cleveland Clinic and they said no it is > not Tourettes because it is only at night and when tired. I asked if he > just had incredible self control and held it in until exhausted and tired > and he was forced to sit still long enough that he could not help it any > more. They said no and I would be wasting my time to take him to the > Tourettes Clinic. I > > Everywhere I turn the answers are I do not know why he does this. I know > there is something happening in his brain and I know he hates it. He is > tired and irritable and just unhappy. Sleep is scary for him because he > knows he will jerk and twitch the second he relaxes and he cannot control > it. He sleeps with someone every night. Usually us or his brother one or > two nights a week. He simply cannot sleep alone. > > I am frustrated and disgusted and at the end of my rope, not to mention > perpetually sleep deprived. Any suggestions you have would be great. I am > going to cross post in the hopes someone has any ideas. > > We are not on any medications other then supplements and I have another > appointment on April 15th to see the neurologist for meds, I am at the end > of my understanding and knowledge and I just cannot let him go on like this. > I never wanted to do meds without a definite reason for it, or belief in it > being necessary, but I just do not know how to help him sleep and cope with > night time, stop the jerking and twitching and have a normal day become a > pattern. > > Thanks in advance and sorry this is so long. > Becca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2005 Report Share Posted January 6, 2005 > I want to explain we sought out Neurology last April 2004. had > started the jerking, twitching and intensely not sleeping as soon as we > started GFCFSF diet in January of 2004. What supplements do you give? GFCFSF is notorious for depleting certain nutrients. Also, my son did not tolerate rice and corn. These intolerances were WORSE than gluten/casein/soy. Not even enzymes helped. In fact, when I removed rice and corn and added back wheat, my son was tremendously improved. He did not have seizures or jerking tho. Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2005 Report Share Posted January 6, 2005 So far the answer I have from an MS group is that calcium and magnesium taken in the evening might help. Could try homeopathic magnesium phosphate tissue salts, several times a day. Come to think of it, I take calcium and magnesium in the evening and I haven't noticed the twitching and jerking lately. > > > > We are still having the jerks and twitches all night that interfere > with > > sleep almost every night. He sleeps very little. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2005 Report Share Posted January 6, 2005 I will definitely move them to the night and evening and give it a try. Becca [ ] Re: Seizures, Twitching and Jerking LONG POST SORRY > > > So far the answer I have from an MS group is that calcium and > magnesium taken in the evening might help. > Could try homeopathic magnesium phosphate tissue salts, several times > a day. > Come to think of it, I take calcium and magnesium in the evening and I > haven't noticed the twitching and jerking lately. > > > > > >> > >> > We are still having the jerks and twitches all night that interfere >> with >> > sleep almost every night. He sleeps very little. > > > > > > > ======================================================= > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2005 Report Share Posted January 6, 2005 Very odd, before I even clicked to read, I thought magnesium. Epsom salt baths are the preferred method. One day someone said for those who have showers, just rub it on the skin in the shower. maz http://www.mercuryexposure.org/ > > > >> > > >> > We are still having the jerks and twitches all night that interfere > >> with > >> > sleep almost every night. He sleeps very little. > > > > > > > > > > > > > > ======================================================= > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2005 Report Share Posted January 7, 2005 I've had MS for about 40 years but have only had this sx for a couple of years. Yes, magnesium helps me and I even dissolve a pinch of Epsom Salts in my mouth because even though the ES baths are nice and calming they don't take away the severe cramps...There seem to be so many facets of the mercury/ autism spectrum/ pathogen/ metabolic mess it's hard to tell the cause of the cramps... This is ONLY my experience and since I am new-ish to the list it might not even be a good idea - I'm here to learn and I am teachable. .... [ ] Re: Seizures, Twitching and Jerking LONG POST SORRY Becca, I get the jerking and twitching at night. Fortunately for me it isn't so severe that it happens all the time. It does wake me up when it does happen. My partner complains about it. My mercury poisoned friend tells me the same thing happens to her. Most of my MS friends tell me the same thing happens to them. I don't know what the answers are. If I recall correctly I think my MS friends say that magnesium helps. I'll post on my MS group and see if anyone knows more. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2005 Report Share Posted January 7, 2005 > I've had MS for about 40 years but have only had this sx for a couple of years. Yes, magnesium helps > me and I even dissolve a pinch of Epsom Salts in my mouth because even though the ES baths are nice > and calming they don't take away the severe cramps...There seem to be so many facets of the mercury/ > autism spectrum/ pathogen/ metabolic mess it's hard to tell the cause of the cramps... > I think that calcuim/magnesium are definately related to cramps. When I was a teenager I read some book by Adelle (yep, showing my age here) that said that you could get rid of menstrual cramps by taking calcium and magnesium (together) -- and to just keep taking these every hour till the cramps are gone. This actually does work for me (and has for years). I have also taken cal/mag for other sorts of cramps -- like a " charley horse " . I think it helps for any kind of muscle cramps. good wishes, Moria Quote Link to comment Share on other sites More sharing options...
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