Guest guest Posted January 23, 2005 Report Share Posted January 23, 2005 I took Klonopin for many years and it helped the myoclonus. I had to go off of it due to the sleep apnea I have, since it can increase the apnea. Good luck with it. Hugs, laurie > > Reply-To: > Date: Sun, 23 Jan 2005 17:52:23 -0000 > To: > Subject: Myoclonus vs. RLS > > > I spoke with my Neuro on Friday and I told him what was going on > with my muscle twitches. He asked me a few questions about the > movements: Here are some of the questions he asked me: Do you get > relief when you walk, do the movements stop-----answer no. Do the > movements cause " jerks " when you are sleepy or very relaxed, answer > yes. I can be lying down on the couch at night time and actually kick > my husband. He has woken me up several times to tell me to go to bed > because I have been sleeping and kicking him, LOL! He asked me if I > FEEL THE NEED to move my legs or if they move themselves, answer I > don't ever feel the need to move them because they are constantly > moving themselves. > > He listened and asked me if the Quinine is helping and after almost a > week, it has done nothing! The Neuro told me he will probably start > Klonopin-anyone taking this or tried it for myoclonus? Does anyone > know if you are more likely to have myoclonus if you already have > seizures? We don't have MERF, we have a Comples II-III def. of the > ETC. > > Thanks for the help, stay warm friends if you are in the path of the > blizzard. We are expected to get down to 27 degrees here in > Melbourne, Florida.........the home of the 3 hurricanes back to back. > Seems like the weather is crazy everywhere these days. Anyway, stay > safe and warm. > > > > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail is > entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with their > physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > ---------------------------------------------------------------------------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2005 Report Share Posted January 23, 2005 , I was also on Klonopin, but stopped it when we found that I had almost no early morning myoclonus/seizures if I did not fast overnight. We discovered this when I was off and on TPN several times. The effect was quite striking. We are now doing overnight feeds through a J-tube (for other reasons also) and I have very little myoclonus except when I take a drug that sets it off-and many do, even OTC cold medicines. Personally, I like the idea that the overnight feeds are getting at the root of the problem (inadequate fuel in the brain) rather than taking a drug that decreases symptoms but may not address underlying cause. However if managing the symptoms is all that can be done, that certainly beats no help at all. I hope Klonopin works for you. When the symptoms pile up SO high, it is a great relief to have some relief from even one! Barbara _____ From: Laureta Fitzgerald Sent: Sunday, January 23, 2005 12:21 PM To: Subject: Re: Myoclonus vs. RLS I took Klonopin for many years and it helped the myoclonus. I had to go off of it due to the sleep apnea I have, since it can increase the apnea. Good luck with it. Hugs, laurie > > Reply-To: > Date: Sun, 23 Jan 2005 17:52:23 -0000 > To: > Subject: Myoclonus vs. RLS > > > I spoke with my Neuro on Friday and I told him what was going on > with my muscle twitches. He asked me a few questions about the > movements: Here are some of the questions he asked me: Do you get > relief when you walk, do the movements stop-----answer no. Do the > movements cause " jerks " when you are sleepy or very relaxed, answer > yes. I can be lying down on the couch at night time and actually kick > my husband. He has woken me up several times to tell me to go to bed > because I have been sleeping and kicking him, LOL! He asked me if I > FEEL THE NEED to move my legs or if they move themselves, answer I > don't ever feel the need to move them because they are constantly > moving themselves. > > He listened and asked me if the Quinine is helping and after almost a > week, it has done nothing! The Neuro told me he will probably start > Klonopin-anyone taking this or tried it for myoclonus? Does anyone > know if you are more likely to have myoclonus if you already have > seizures? We don't have MERF, we have a Comples II-III def. of the > ETC. > > Thanks for the help, stay warm friends if you are in the path of the > blizzard. We are expected to get down to 27 degrees here in > Melbourne, Florida.........the home of the 3 hurricanes back to back. > Seems like the weather is crazy everywhere these days. Anyway, stay > safe and warm. > > > > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail is > entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with their > physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > ---------------------------------------------------------------------------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2005 Report Share Posted January 23, 2005 Barbara, Thanks for the info on the Klonopin. It seems that sz and myoclonus go together. I will defintely keep an eye on the interactions with other drugs. I am glad that the overnight feeds are helping you. I honestly didn't know that you had the j-tube. I guess I am sometimes a bit out of the loop. > , I was also on Klonopin, but stopped it when we found that I had > almost no early morning myoclonus/seizures if I did not fast overnight. We > discovered this when I was off and on TPN several times. The effect was > quite striking. We are now doing overnight feeds through a J-tube (for other > reasons also) and I have very little myoclonus except when I take a drug > that sets it off-and many do, even OTC cold medicines. Personally, I like > the idea that the overnight feeds are getting at the root of the problem > (inadequate fuel in the brain) rather than taking a drug that decreases > symptoms but may not address underlying cause. However if managing the > symptoms is all that can be done, that certainly beats no help at all. I > hope Klonopin works for you. When the symptoms pile up SO high, it is a > great relief to have some relief from even one! > > > > Barbara > > > > _____ > > From: Laureta Fitzgerald [mailto:lfitzger@j...] > Sent: Sunday, January 23, 2005 12:21 PM > To: > Subject: Re: Myoclonus vs. RLS > > > > > > I took Klonopin for many years and it helped the myoclonus. I had to go off > of it due to the sleep apnea I have, since it can increase the apnea. > > Good luck with it. > > Hugs, > laurie > > > From: " mitomomtoo " > > Reply-To: > > Date: Sun, 23 Jan 2005 17:52:23 -0000 > > To: > > Subject: Myoclonus vs. RLS > > > > > > I spoke with my Neuro on Friday and I told him what was going on > > with my muscle twitches. He asked me a few questions about the > > movements: Here are some of the questions he asked me: Do you get > > relief when you walk, do the movements stop-----answer no. Do the > > movements cause " jerks " when you are sleepy or very relaxed, answer > > yes. I can be lying down on the couch at night time and actually kick > > my husband. He has woken me up several times to tell me to go to bed > > because I have been sleeping and kicking him, LOL! He asked me if I > > FEEL THE NEED to move my legs or if they move themselves, answer I > > don't ever feel the need to move them because they are constantly > > moving themselves. > > > > He listened and asked me if the Quinine is helping and after almost a > > week, it has done nothing! The Neuro told me he will probably start > > Klonopin-anyone taking this or tried it for myoclonus? Does anyone > > know if you are more likely to have myoclonus if you already have > > seizures? We don't have MERF, we have a Comples II-III def. of the > > ETC. > > > > Thanks for the help, stay warm friends if you are in the path of the > > blizzard. We are expected to get down to 27 degrees here in > > Melbourne, Florida.........the home of the 3 hurricanes back to back. > > Seems like the weather is crazy everywhere these days. Anyway, stay > > safe and warm. > > > > > > > > > > > > > > Medical advice, information, opinions, data and statements contained > herein > > are not necessarily those of the list moderators. The author of this e > mail is > > entirely responsible for its content. List members are reminded of their > > responsibility to evaluate the content of the postings and consult with > their > > physicians regarding changes in their own treatment. > > > > Personal attacks are not permitted on the list and anyone who sends one is > > automatically moderated or removed depending on the severity of the > attack. > > > > > > > > > -------------------------------------------------------------------- -------- > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2005 Report Share Posted January 23, 2005 , I have been on Klonopin for many, many years. I was put on it for myoclonus long before I knew I had mito. It has helped my myoclonus quite a bit. I have flares of it when I overdo, but it has been controlled greatly by the Klonopin. Smiles, a On Sun, 23 Jan 2005 17:52:23 -0000 " mitomomtoo " mitomomtoo@...> writes: I spoke with my Neuro on Friday and I told him what was going on with my muscle twitches. He asked me a few questions about the movements: Here are some of the questions he asked me: Do you get relief when you walk, do the movements stop-----answer no. Do the movements cause " jerks " when you are sleepy or very relaxed, answer yes. I can be lying down on the couch at night time and actually kick my husband. He has woken me up several times to tell me to go to bed because I have been sleeping and kicking him, LOL! He asked me if I FEEL THE NEED to move my legs or if they move themselves, answer I don't ever feel the need to move them because they are constantly moving themselves. He listened and asked me if the Quinine is helping and after almost a week, it has done nothing! The Neuro told me he will probably start Klonopin-anyone taking this or tried it for myoclonus? Does anyone know if you are more likely to have myoclonus if you already have seizures? We don't have MERF, we have a Comples II-III def. of the ETC. Thanks for the help, stay warm friends if you are in the path of the blizzard. We are expected to get down to 27 degrees here in Melbourne, Florida.........the home of the 3 hurricanes back to back. Seems like the weather is crazy everywhere these days. Anyway, stay safe and warm. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2005 Report Share Posted January 23, 2005 Barbara, I have noticed that I get myoclonus in the morning if I sleep late on the weekends and get breakfast later than my body needs me to get it. Sometimes I even get up, take my Q-Gel and Carnitor and eat, THEN go back to bed. Te he!!! The couple of times I started having problems with it, I either was able to get rid of it by upping my Q-Gel dosage or eating. Barbara Seaman wrote: >, I was also on Klonopin, but stopped it when we found that I had >almost no early morning myoclonus/seizures if I did not fast overnight. We >discovered this when I was off and on TPN several times. The effect was >quite striking. We are now doing overnight feeds through a J-tube (for other >reasons also) and I have very little myoclonus except when I take a drug >that sets it off-and many do, even OTC cold medicines. Personally, I like >the idea that the overnight feeds are getting at the root of the problem >(inadequate fuel in the brain) rather than taking a drug that decreases >symptoms but may not address underlying cause. However if managing the >symptoms is all that can be done, that certainly beats no help at all. I >hope Klonopin works for you. When the symptoms pile up SO high, it is a >great relief to have some relief from even one! > > > >Barbara > > > > _____ > >From: Laureta Fitzgerald >Sent: Sunday, January 23, 2005 12:21 PM >To: >Subject: Re: Myoclonus vs. RLS > > > > > >I took Klonopin for many years and it helped the myoclonus. I had to go off >of it due to the sleep apnea I have, since it can increase the apnea. > >Good luck with it. > >Hugs, >laurie > > > >> >>Reply-To: >>Date: Sun, 23 Jan 2005 17:52:23 -0000 >>To: >>Subject: Myoclonus vs. RLS >> >> >>I spoke with my Neuro on Friday and I told him what was going on >>with my muscle twitches. He asked me a few questions about the >>movements: Here are some of the questions he asked me: Do you get >>relief when you walk, do the movements stop-----answer no. Do the >>movements cause " jerks " when you are sleepy or very relaxed, answer >>yes. I can be lying down on the couch at night time and actually kick >>my husband. He has woken me up several times to tell me to go to bed >>because I have been sleeping and kicking him, LOL! He asked me if I >>FEEL THE NEED to move my legs or if they move themselves, answer I >>don't ever feel the need to move them because they are constantly >>moving themselves. >> >>He listened and asked me if the Quinine is helping and after almost a >>week, it has done nothing! The Neuro told me he will probably start >>Klonopin-anyone taking this or tried it for myoclonus? Does anyone >>know if you are more likely to have myoclonus if you already have >>seizures? We don't have MERF, we have a Comples II-III def. of the >>ETC. >> >>Thanks for the help, stay warm friends if you are in the path of the >>blizzard. We are expected to get down to 27 degrees here in >>Melbourne, Florida.........the home of the 3 hurricanes back to back. >>Seems like the weather is crazy everywhere these days. Anyway, stay >>safe and warm. >> >> >> >> >> >> >>Medical advice, information, opinions, data and statements contained >> >> >herein > > >>are not necessarily those of the list moderators. The author of this e >> >> >mail is > > >>entirely responsible for its content. List members are reminded of their >>responsibility to evaluate the content of the postings and consult with >> >> >their > > >>physicians regarding changes in their own treatment. >> >>Personal attacks are not permitted on the list and anyone who sends one is >>automatically moderated or removed depending on the severity of the >> >> >attack. > > >> >> >> >> >---------------------------------------------------------------------------- > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2005 Report Share Posted January 23, 2005 Aha! Patient smarts comes through again! B _____ From: Sent: Sunday, January 23, 2005 1:48 PM To: Subject: Re: Myoclonus vs. RLS * Barbara, I have noticed that I get myoclonus in the morning if I sleep late on the weekends and get breakfast later than my body needs me to get it. Sometimes I even get up, take my Q-Gel and Carnitor and eat, THEN go back to bed. Te he!!! The couple of times I started having problems with it, I either was able to get rid of it by upping my Q-Gel dosage or eating. Barbara Seaman wrote: >, I was also on Klonopin, but stopped it when we found that I had >almost no early morning myoclonus/seizures if I did not fast overnight. We >discovered this when I was off and on TPN several times. The effect was >quite striking. We are now doing overnight feeds through a J-tube (for other >reasons also) and I have very little myoclonus except when I take a drug >that sets it off-and many do, even OTC cold medicines. Personally, I like >the idea that the overnight feeds are getting at the root of the problem >(inadequate fuel in the brain) rather than taking a drug that decreases >symptoms but may not address underlying cause. However if managing the >symptoms is all that can be done, that certainly beats no help at all. I >hope Klonopin works for you. When the symptoms pile up SO high, it is a >great relief to have some relief from even one! > > > >Barbara. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2005 Report Share Posted January 23, 2005 If anyone has not seen the UMDF feature article by Dr. Saneto on seizures and non-seizure type abnormal movements in mito, it is definitely worth reading. Click on library, UMDF newsletters, Summer 2002. B _____ From: mitomomtoo Sent: Sunday, January 23, 2005 12:46 PM To: Subject: Re: Myoclonus vs. RLS Barbara, Thanks for the info on the Klonopin. It seems that sz and myoclonus go together. I will defintely keep an eye on the interactions with other drugs. I am glad that the overnight feeds are helping you. I honestly didn't know that you had the j-tube. I guess I am sometimes a bit out of the loop. > , I was also on Klonopin, but stopped it when we found that I had > almost no early morning myoclonus/seizures if I did not fast overnight. We > discovered this when I was off and on TPN several times. The effect was > quite striking. We are now doing overnight feeds through a J-tube (for other > reasons also) and I have very little myoclonus except when I take a drug > that sets it off-and many do, even OTC cold medicines. Personally, I like > the idea that the overnight feeds are getting at the root of the problem > (inadequate fuel in the brain) rather than taking a drug that decreases > symptoms but may not address underlying cause. However if managing the > symptoms is all that can be done, that certainly beats no help at all. I > hope Klonopin works for you. When the symptoms pile up SO high, it is a > great relief to have some relief from even one! > > > > Barbara > > > > _____ > > From: Laureta Fitzgerald [mailto:lfitzger@j...] > Sent: Sunday, January 23, 2005 12:21 PM > To: > Subject: Re: Myoclonus vs. RLS > > > > > > I took Klonopin for many years and it helped the myoclonus. I had to go off > of it due to the sleep apnea I have, since it can increase the apnea. > > Good luck with it. > > Hugs, > laurie > > > From: " mitomomtoo " > > Reply-To: > > Date: Sun, 23 Jan 2005 17:52:23 -0000 > > To: > > Subject: Myoclonus vs. RLS > > > > > > I spoke with my Neuro on Friday and I told him what was going on > > with my muscle twitches. He asked me a few questions about the > > movements: Here are some of the questions he asked me: Do you get > > relief when you walk, do the movements stop-----answer no. Do the > > movements cause " jerks " when you are sleepy or very relaxed, answer > > yes. I can be lying down on the couch at night time and actually kick > > my husband. He has woken me up several times to tell me to go to bed > > because I have been sleeping and kicking him, LOL! He asked me if I > > FEEL THE NEED to move my legs or if they move themselves, answer I > > don't ever feel the need to move them because they are constantly > > moving themselves. > > > > He listened and asked me if the Quinine is helping and after almost a > > week, it has done nothing! The Neuro told me he will probably start > > Klonopin-anyone taking this or tried it for myoclonus? Does anyone > > know if you are more likely to have myoclonus if you already have > > seizures? We don't have MERF, we have a Comples II-III def. of the > > ETC. > > > > Thanks for the help, stay warm friends if you are in the path of the > > blizzard. We are expected to get down to 27 degrees here in > > Melbourne, Florida.........the home of the 3 hurricanes back to back. > > Seems like the weather is crazy everywhere these days. Anyway, stay > > safe and warm. > > > > > > > > > > > > > > Medical advice, information, opinions, data and statements contained > herein > > are not necessarily those of the list moderators. The author of this e > mail is > > entirely responsible for its content. List members are reminded of their > > responsibility to evaluate the content of the postings and consult with > their > > physicians regarding changes in their own treatment. > > > > Personal attacks are not permitted on the list and anyone who sends one is > > automatically moderated or removed depending on the severity of the > attack. > > > > > > > > > -------------------------------------------------------------------- -------- > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2005 Report Share Posted January 23, 2005 This is a very interesting and timely thread for me (as you may remember I have " sleep hypnea " - which means I tested as having low oxygen episodes, but not as severe as sleep apnea. I know when I had the sleep study I was not congested at all, and that makes my symptoms worse. So I think I'll avoid thinking about Klonopin and look into the not eating/not enough sleep causes. I'm lucky I don't have very many episodes, but I do have muscle pain that I should also keep an eye on. Thanks, RH > > > I took Klonopin for many years and it helped the myoclonus. I had to go off > of it due to the sleep apnea I have, since it can increase the apnea. > > Good luck with it. > > Hugs, > laurie > > > From: " mitomomtoo " > > Reply-To: > > Date: Sun, 23 Jan 2005 17:52:23 -0000 > > To: > > Subject: Myoclonus vs. RLS > > > > > > I spoke with my Neuro on Friday and I told him what was going on > > with my muscle twitches. He asked me a few questions about the > > movements: Here are some of the questions he asked me: Do you get > > relief when you walk, do the movements stop-----answer no. Do the > > movements cause " jerks " when you are sleepy or very relaxed, answer > > yes. I can be lying down on the couch at night time and actually kick > > my husband. He has woken me up several times to tell me to go to bed > > because I have been sleeping and kicking him, LOL! He asked me if I > > FEEL THE NEED to move my legs or if they move themselves, answer I > > don't ever feel the need to move them because they are constantly > > moving themselves. > > > > He listened and asked me if the Quinine is helping and after almost a > > week, it has done nothing! The Neuro told me he will probably start > > Klonopin-anyone taking this or tried it for myoclonus? Does anyone > > know if you are more likely to have myoclonus if you already have > > seizures? We don't have MERF, we have a Comples II-III def. of the > > ETC. > > > > Thanks for the help, stay warm friends if you are in the path of the > > blizzard. We are expected to get down to 27 degrees here in > > Melbourne, Florida.........the home of the 3 hurricanes back to back. > > Seems like the weather is crazy everywhere these days. Anyway, stay > > safe and warm. > > > > > > > > > > > > > > Medical advice, information, opinions, data and statements contained herein > > are not necessarily those of the list moderators. The author of this e mail is > > entirely responsible for its content. List members are reminded of their > > responsibility to evaluate the content of the postings and consult with their > > physicians regarding changes in their own treatment. > > > > Personal attacks are not permitted on the list and anyone who sends one is > > automatically moderated or removed depending on the severity of the attack. > > > > > > > > ------------------------------------------------------------------ ---------- > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2005 Report Share Posted January 23, 2005 This is a very interesting and timely thread for me (as you may remember I have " sleep hypnea " - which means I tested as having low oxygen episodes, but not as severe as sleep apnea. I know when I had the sleep study I was not congested at all, and that makes my symptoms worse. So I think I'll avoid thinking about Klonopin and look into the not eating/not enough sleep causes. I'm lucky I don't have very many episodes, but I do have muscle pain that I should also keep an eye on. Thanks, RH > > > I took Klonopin for many years and it helped the myoclonus. I had to go off > of it due to the sleep apnea I have, since it can increase the apnea. > > Good luck with it. > > Hugs, > laurie > > > From: " mitomomtoo " > > Reply-To: > > Date: Sun, 23 Jan 2005 17:52:23 -0000 > > To: > > Subject: Myoclonus vs. RLS > > > > > > I spoke with my Neuro on Friday and I told him what was going on > > with my muscle twitches. He asked me a few questions about the > > movements: Here are some of the questions he asked me: Do you get > > relief when you walk, do the movements stop-----answer no. Do the > > movements cause " jerks " when you are sleepy or very relaxed, answer > > yes. I can be lying down on the couch at night time and actually kick > > my husband. He has woken me up several times to tell me to go to bed > > because I have been sleeping and kicking him, LOL! He asked me if I > > FEEL THE NEED to move my legs or if they move themselves, answer I > > don't ever feel the need to move them because they are constantly > > moving themselves. > > > > He listened and asked me if the Quinine is helping and after almost a > > week, it has done nothing! The Neuro told me he will probably start > > Klonopin-anyone taking this or tried it for myoclonus? Does anyone > > know if you are more likely to have myoclonus if you already have > > seizures? We don't have MERF, we have a Comples II-III def. of the > > ETC. > > > > Thanks for the help, stay warm friends if you are in the path of the > > blizzard. We are expected to get down to 27 degrees here in > > Melbourne, Florida.........the home of the 3 hurricanes back to back. > > Seems like the weather is crazy everywhere these days. Anyway, stay > > safe and warm. > > > > > > > > > > > > > > Medical advice, information, opinions, data and statements contained herein > > are not necessarily those of the list moderators. The author of this e mail is > > entirely responsible for its content. List members are reminded of their > > responsibility to evaluate the content of the postings and consult with their > > physicians regarding changes in their own treatment. > > > > Personal attacks are not permitted on the list and anyone who sends one is > > automatically moderated or removed depending on the severity of the attack. > > > > > > > > ------------------------------------------------------------------ ---------- > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2005 Report Share Posted January 23, 2005 I don't have very much to weigh in on the Myclonus vs. RLS issue tonight other than I started taking Zonegran last night for my myclonus so I don't have a clue if it is helping or not. Also I go for my second sleep study last night to get set up on my CPAP machine. The neuro who did the sleep study is friends with my MITO neuro in Michigan and the first study didn't show a lot of sleep apnea but it did show a lot of twitching and jerking and RLS. I guess I twitched and jerked a lot on my first study and I kept waking myself up from it. Anyway that is all I have to add. I will let you all know later on this week if the Zonegran works or not. ohgminion rakshasis@...> wrote: This is a very interesting and timely thread for me (as you may remember I have " sleep hypnea " - which means I tested as having low oxygen episodes, but not as severe as sleep apnea. I know when I had the sleep study I was not congested at all, and that makes my symptoms worse. So I think I'll avoid thinking about Klonopin and look into the not eating/not enough sleep causes. I'm lucky I don't have very many episodes, but I do have muscle pain that I should also keep an eye on. Thanks, RH > > > I took Klonopin for many years and it helped the myoclonus. I had to go off > of it due to the sleep apnea I have, since it can increase the apnea. > > Good luck with it. > > Hugs, > laurie > > > From: " mitomomtoo " > > Reply-To: > > Date: Sun, 23 Jan 2005 17:52:23 -0000 > > To: > > Subject: Myoclonus vs. RLS > > > > > > I spoke with my Neuro on Friday and I told him what was going on > > with my muscle twitches. He asked me a few questions about the > > movements: Here are some of the questions he asked me: Do you get > > relief when you walk, do the movements stop-----answer no. Do the > > movements cause " jerks " when you are sleepy or very relaxed, answer > > yes. I can be lying down on the couch at night time and actually kick > > my husband. He has woken me up several times to tell me to go to bed > > because I have been sleeping and kicking him, LOL! He asked me if I > > FEEL THE NEED to move my legs or if they move themselves, answer I > > don't ever feel the need to move them because they are constantly > > moving themselves. > > > > He listened and asked me if the Quinine is helping and after almost a > > week, it has done nothing! The Neuro told me he will probably start > > Klonopin-anyone taking this or tried it for myoclonus? Does anyone > > know if you are more likely to have myoclonus if you already have > > seizures? We don't have MERF, we have a Comples II-III def. of the > > ETC. > > > > Thanks for the help, stay warm friends if you are in the path of the > > blizzard. We are expected to get down to 27 degrees here in > > Melbourne, Florida.........the home of the 3 hurricanes back to back. > > Seems like the weather is crazy everywhere these days. Anyway, stay > > safe and warm. > > > > > > > > > > > > > > Medical advice, information, opinions, data and statements contained herein > > are not necessarily those of the list moderators. The author of this e mail is > > entirely responsible for its content. List members are reminded of their > > responsibility to evaluate the content of the postings and consult with their > > physicians regarding changes in their own treatment. > > > > Personal attacks are not permitted on the list and anyone who sends one is > > automatically moderated or removed depending on the severity of the attack. > > > > > > > > ------------------------------------------------------------------ ---------- > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2005 Report Share Posted January 24, 2005 , My 20 year old son has MERFF and is taking klonopin for myoclonus. It has helped him more than anything else he's tried. He actually had a few seizures, the first one precipitated by his myoclonus going into overdrive from doing too much computer work at school. Funny thing is that he's did the same amount of computer work right after that and didn't have a problem (this all was before the klonopin). His movement specialist said that is very common. They don't know why something will cause problems one day and not another. As I'm getting older I've noticed some things that could be mito related although I don't have any severe symptoms like him. I guess they call them soft signs. Anyway, I have developed RLS although not that often thankfully. Not bad enough to treat yet. It's very annoying when it kicks in. Good luck. Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2005 Report Share Posted January 24, 2005 Thanks to all of you have been so supportive these past few weeks while I try to sort out what these new symptoms mean. I am glad to see that several " oldies " have benefited from the klonopin. I just made appt with the Neuro for Wed afternoon. I hope he is able to make some adjustments that help, whatever they want to call it :-) > > , > > My 20 year old son has MERFF and is taking klonopin for myoclonus. > It has helped him more than anything else he's tried. He actually > had a few seizures, the first one precipitated by his myoclonus going > into overdrive from doing too much computer work at school. Funny > thing is that he's did the same amount of computer work right after > that and didn't have a problem (this all was before the klonopin). > His movement specialist said that is very common. They don't know > why something will cause problems one day and not another. > > As I'm getting older I've noticed some things that could be mito > related although I don't have any severe symptoms like him. I guess > they call them soft signs. Anyway, I have developed RLS although not > that often thankfully. Not bad enough to treat yet. It's very > annoying when it kicks in. > > Good luck. > > Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2005 Report Share Posted January 24, 2005 Laurie, Thanks for the reply! I do use a cane or walker when I crash really badly. I try not to depend on them unless I absolutely need them, for two reasons. The first being that my muscles have the tendency to atpophy very easily, so when I do need the cane/ walker I am concerned that I will depend on them too much---make any sense? Second, my older son is now 8. Although he has grown up with all the medical world around him, he sometimes still gets embarrased by the whole situation. He is the need to fit in stage and anything that makes him differet is not good! is in the same school as Drew for the first time. attended a Medical School for the first 5 yrs. Drew, whose health is so much more stable than 's or my own, now has to deal with his " infamous brother " who EVERYBODY knows because he whips around school in a special adaptive bike, is included in a regular Kindergarten class but transitions to many therapies, and resource classes. I guess what I am trying to say is that I try not to make the condition more obvious than it needs to be. I know Drew is not really embarrased by me or , but if I can make it any easier for him I will. Thanks again. > >> > >> , > >> > >> My 20 year old son has MERFF and is taking klonopin for myoclonus. > >> It has helped him more than anything else he's tried. He actually > >> had a few seizures, the first one precipitated by his myoclonus > > going > >> into overdrive from doing too much computer work at school. Funny > >> thing is that he's did the same amount of computer work right after > >> that and didn't have a problem (this all was before the klonopin). > >> His movement specialist said that is very common. They don't know > >> why something will cause problems one day and not another. > >> > >> As I'm getting older I've noticed some things that could be mito > >> related although I don't have any severe symptoms like him. I > > guess > >> they call them soft signs. Anyway, I have developed RLS although > > not > >> that often thankfully. Not bad enough to treat yet. It's very > >> annoying when it kicks in. > >> > >> Good luck. > >> > >> Kim > > > > > > > > > > > > Medical advice, information, opinions, data and statements contained herein > > are not necessarily those of the list moderators. The author of this e mail is > > entirely responsible for its content. List members are reminded of their > > responsibility to evaluate the content of the postings and consult with their > > physicians regarding changes in their own treatment. > > > > Personal attacks are not permitted on the list and anyone who sends one is > > automatically moderated or removed depending on the severity of the attack. > > > > > > > > ------------------------------------------------------------------ ---------- > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2005 Report Share Posted January 24, 2005 Comparing oneself to one or more siblings is rough no matter what. I think there are books for kids out there about " special siblings " , and I know that there is book for older kids and adults about growing up with a disabled sibling. I guess as much as you can let each of your kids " pave their own way " , the better it will be (for them and you). Having one disabled child and two more abled kids, I find that I tend to over-praise my special guy, and my oldest really feels it sometimes. But my oldest also has priveleges that my younger son doesn't, some which he may never have (like playing sports). And parents are always a source of embarassment, everybody gets a different variety. Heck, my dad has been a source of embarassment FOREVER, and he just doesn't get that it's a fact about being a parent. I'm lucky my almost 8-year-old son still lets me kiss him! Take care, RH > > >> > > >> , > > >> > > >> My 20 year old son has MERFF and is taking klonopin for > myoclonus. > > >> It has helped him more than anything else he's tried. He > actually > > >> had a few seizures, the first one precipitated by his myoclonus > > > going > > >> into overdrive from doing too much computer work at school. > Funny > > >> thing is that he's did the same amount of computer work right > after > > >> that and didn't have a problem (this all was before the > klonopin). > > >> His movement specialist said that is very common. They don't > know > > >> why something will cause problems one day and not another. > > >> > > >> As I'm getting older I've noticed some things that could be mito > > >> related although I don't have any severe symptoms like him. I > > > guess > > >> they call them soft signs. Anyway, I have developed RLS although > > > not > > >> that often thankfully. Not bad enough to treat yet. It's very > > >> annoying when it kicks in. > > >> > > >> Good luck. > > >> > > >> Kim > > > > > > > > > > > > > > > > > > Medical advice, information, opinions, data and statements > contained herein > > > are not necessarily those of the list moderators. The author of > this e mail is > > > entirely responsible for its content. List members are reminded > of their > > > responsibility to evaluate the content of the postings and > consult with their > > > physicians regarding changes in their own treatment. > > > > > > Personal attacks are not permitted on the list and anyone who > sends one is > > > automatically moderated or removed depending on the severity of > the attack. > > > > > > > > > > > > ---------------------------------------------------------------- -- > ---------- > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2005 Report Share Posted January 24, 2005 I do know what you mean. My boys were older, almost 20 when I started using my first scooter. This may be part of the myoclonus, but we have to live our lives with some balance. Try to do some things sitting down if you can. I started doing all my food prep sitting at the table and then used a stool to sit on when at the stove or sink. These little things might give you a bit of a rest. laurie > > Reply-To: > Date: Tue, 25 Jan 2005 03:36:08 -0000 > To: > Subject: Re: Myoclonus vs. RLS > > > Laurie, > Thanks for the reply! I do use a cane or walker when I crash really > badly. I try not to depend on them unless I absolutely need them, > for two reasons. The first being that my muscles have the tendency to > atpophy very easily, so when I do need the cane/ walker I am > concerned that I will depend on them too much---make any sense? > > Second, my older son is now 8. Although he has grown up with all the > medical world around him, he sometimes still gets embarrased by the > whole situation. He is the need to fit in stage and anything that > makes him differet is not good! is in the same school as Drew > for the first time. attended a Medical School for the first 5 > yrs. Drew, whose health is so much more stable than 's or my > own, now has to deal with his " infamous brother " who EVERYBODY knows > because he whips around school in a special adaptive bike, is > included in a regular Kindergarten class but transitions to many > therapies, and resource classes. I guess what I am trying to say is > that I try not to make the condition more obvious than it needs to > be. I know Drew is not really embarrased by me or , but if I > can make it any easier for him I will. > > Thanks again. > > > > >>>> >>>> , >>>> >>>> My 20 year old son has MERFF and is taking klonopin for > myoclonus. >>>> It has helped him more than anything else he's tried. He > actually >>>> had a few seizures, the first one precipitated by his myoclonus >>> going >>>> into overdrive from doing too much computer work at school. > Funny >>>> thing is that he's did the same amount of computer work right > after >>>> that and didn't have a problem (this all was before the > klonopin). >>>> His movement specialist said that is very common. They don't > know >>>> why something will cause problems one day and not another. >>>> >>>> As I'm getting older I've noticed some things that could be mito >>>> related although I don't have any severe symptoms like him. I >>> guess >>>> they call them soft signs. Anyway, I have developed RLS although >>> not >>>> that often thankfully. Not bad enough to treat yet. It's very >>>> annoying when it kicks in. >>>> >>>> Good luck. >>>> >>>> Kim >>> >>> >>> >>> >>> >>> Medical advice, information, opinions, data and statements > contained herein >>> are not necessarily those of the list moderators. The author of > this e mail is >>> entirely responsible for its content. List members are reminded > of their >>> responsibility to evaluate the content of the postings and > consult with their >>> physicians regarding changes in their own treatment. >>> >>> Personal attacks are not permitted on the list and anyone who > sends one is >>> automatically moderated or removed depending on the severity of > the attack. >>> >>> >>> >>> ------------------------------------------------------------------ > ---------- >>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2005 Report Share Posted January 25, 2005 , Seems like there are 1001 daily decisions on how to balance atrophy against activity, independence against dependence. It's an art not a science, just like the practice of medicine. Besides trying to read and interpret your own body messages, there are often not-so-subtle pressures from friends and family to go without aids such as canes, walkers, wheels. Growing up, my son had similar reactions to your son when I used wheels-but only when we were around his peers. He didn't care otherwise. My husband was embarrassed anywhere and still is. My son outgrew it by the time he was in college. I think you are wise to consider your son's needs too. Whenever possible, I tried to work out other less-obvious solutions if knew my son was uncomfortable. Take care, Barbara _____ From: mitomomtoo Sent: Monday, January 24, 2005 9:36 PM To: Subject: Re: Myoclonus vs. RLS * Thanks for the reply! I do use a cane or walker when I crash really badly. I try not to depend on them unless I absolutely need them, for two reasons. The first being that my muscles have the tendency to atpophy very easily, so when I do need the cane/ walker I am concerned that I will depend on them too much---make any sense? Second, my older son is now 8. Although he has grown up with all the medical world around him, he sometimes still gets embarrased by the whole situation. He is the need to fit in stage and anything that makes him differet is not good! is in the same school as Drew for the first time. attended a Medical School for the first 5 yrs. Drew, whose health is so much more stable than 's or my own, now has to deal with his " infamous brother " who EVERYBODY knows because he whips around school in a special adaptive bike, is included in a regular Kindergarten class but transitions to many therapies, and resource classes. I guess what I am trying to say is that I try not to make the condition more obvious than it needs to be. I know Drew is not really embarrased by me or , but if I can make it any easier for him I will. Thanks again. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2005 Report Share Posted January 25, 2005 Barbara, Thanks for the encouraging words.It helps to know that others have been in the same situation. I hope that if nothing else; the experiences that our children gets from this awful " Mito Thing " will make them more tolerant and understanding of others. I know that deep down inside of my 8 yr olds heart he truly loves his brother and sister and would stick up for them if needed. He also has learned that we are all different and that God loves us all. My daughter is adopted from Cambodia. She has Asian features and beautiful copper skin. We are all the same inside and the inside is what really matters. Thanks again, > , > > > > Seems like there are 1001 daily decisions on how to balance atrophy against > activity, independence against dependence. It's an art not a science, just > like the practice of medicine. Besides trying to read and interpret your own > body messages, there are often not-so-subtle pressures from friends and > family to go without aids such as canes, walkers, wheels. Growing up, my son > had similar reactions to your son when I used wheels-but only when we were > around his peers. He didn't care otherwise. My husband was embarrassed > anywhere and still is. My son outgrew it by the time he was in college. I > think you are wise to consider your son's needs too. Whenever possible, I > tried to work out other less-obvious solutions if knew my son was > uncomfortable. > > > > Take care, > > Barbara > > > > _____ > > From: mitomomtoo [mailto:mitomomtoo@a...] > Sent: Monday, January 24, 2005 9:36 PM > To: > Subject: Re: Myoclonus vs. RLS > > * > Thanks for the reply! I do use a cane or walker when I crash really > badly. I try not to depend on them unless I absolutely need them, > for two reasons. The first being that my muscles have the tendency to > atpophy very easily, so when I do need the cane/ walker I am > concerned that I will depend on them too much---make any sense? > > Second, my older son is now 8. Although he has grown up with all the > medical world around him, he sometimes still gets embarrased by the > whole situation. He is the need to fit in stage and anything that > makes him differet is not good! is in the same school as Drew > for the first time. attended a Medical School for the first 5 > yrs. Drew, whose health is so much more stable than 's or my > own, now has to deal with his " infamous brother " who EVERYBODY knows > because he whips around school in a special adaptive bike, is > included in a regular Kindergarten class but transitions to many > therapies, and resource classes. I guess what I am trying to say is > that I try not to make the condition more obvious than it needs to > be. I know Drew is not really embarrased by me or , but if I > can make it any easier for him I will. > > Thanks again. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2005 Report Share Posted January 25, 2005 Yes, a wonderful lesson to learn. I'm sure your children will absorb your attitude and find their own comfort zone in their own time. I think my disability was more threatening for my son because he knew he had the same disease. My progression still makes him wonder what is ahead for him, even though he is doing very well now and expects that to continue. Genetic disease adds this peculiar layer to the whole disability experience..or has for us anyway. B _____ From: mitomomtoo Sent: Tuesday, January 25, 2005 1:58 PM To: Subject: Re: Myoclonus vs. RLS Barbara, Thanks for the encouraging words.It helps to know that others have been in the same situation. I hope that if nothing else; the experiences that our children gets from this awful " Mito Thing " will make them more tolerant and understanding of others. I know that deep down inside of my 8 yr olds heart he truly loves his brother and sister and would stick up for them if needed. He also has learned that we are all different and that God loves us all. My daughter is adopted from Cambodia. She has Asian features and beautiful copper skin. We are all the same inside and the inside is what really matters. Thanks again, Quote Link to comment Share on other sites More sharing options...
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