It is 11:43pm and I'm going through my evening ritual. Damit! I have not even attempted to lay down because I can already feel every muscle in my body starting their discussion on how late they want to keep the rest of my body up tonight. My wife is asking me the same question "when are you coming to bed"? She has no clue how harmful that question really is and I cannot blame her because no NORMAL person understands what I am feeling. Bed... I started hating that word a long time ago. Sleep? I hate that word to. I do enough pushups and leg exercises each night that would make most bodybuilders cry, yet I do not feel the slightest burn the next day and my physical appearance has not changed a bit. What is up with that?!
I knew that something was wrong with me back in January 1992 when this all started, but my doctors thought I was crazy. I had blood work and they tested everything they could think of and quickly decided it was all in my head. I hated doctors for awhile to. All they do is prescribe drugs that do more damage than good. Klonapin? Worked for a little while but when I came off of the 30 day prescription I thought I was going to kill someone. I had to leave the house so I would not hurt my wife and kids. Get in a car and drive? Road rage at it's worst! I gave up after that.
Two days ago I saw the ad for Requip or Ropineral and decided to start researching... AGAIN! This is the first public ad I have ever seen on RLS. Well, it led me here on your site which I have never heard of until now.
Can anyone here help me? My symptoms are getting worse and I cannot think straight during the day. I found two doctors in my area who specialize in RLS, but before I try them I wanted to see if anyone here knows anything about this Requip. Does it work? Is it natural or engineered? Is it safe? I do not want to start on something and find myself a few years from now in some class action lawsuit because some idiot cared more about his pocket book than other peoples lives.
My god, even someone to talk to that has this same problem and understands what I am feeling would be nice.
Ok, I've spilled my heart out and I'm rambling on so I am going to submit this before I erase it.
I'm going to go talk to my cat now, he seems to think I'm nocturnal to.
Curtis
Not sure where to start
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Penguinrocks
- Posts: 703
- Joined: Thu Mar 17, 2005 6:03 pm
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Hi Curtis,
Believe me when I say that we all know what you're going thru. the not knowing is awful but the pain and constant moving are the worst.
You don't have to be sorry for spilling your heart and please don't ever erase what you want to post. We're here! Sometimes, not all at the same time, but we're here!!!
I was on Requip. .75 mg was working for me, but gave me migraines that wouldn't go away. .5 mg was what I had to go back down to to keep the headaches at bay.
Now, they've switched me to 300 mg. of Neurontin. Jury is still out on this one. Not sure if I like it, but I'll be sure to keep everyone posted.
It must be a "thing" with cats. If you are up in the middle of the night, then they believe you should cater to them, then, as well
Penguin
Believe me when I say that we all know what you're going thru. the not knowing is awful but the pain and constant moving are the worst.
You don't have to be sorry for spilling your heart and please don't ever erase what you want to post. We're here! Sometimes, not all at the same time, but we're here!!!
I was on Requip. .75 mg was working for me, but gave me migraines that wouldn't go away. .5 mg was what I had to go back down to to keep the headaches at bay.
Now, they've switched me to 300 mg. of Neurontin. Jury is still out on this one. Not sure if I like it, but I'll be sure to keep everyone posted.
It must be a "thing" with cats. If you are up in the middle of the night, then they believe you should cater to them, then, as well
Penguin
Beware the Penguin
Not sure where to start
Hi Curtis, believe me, you are not alone. I cringe too at the words bed and sleep!!
I had a sleep study done earlier this year and was given Requip (Repreve in OZ). I took it home with instuctions on how often to increase, no follow up appointments, I was on my own! I worked up to 1mg per night which worked on my legs but I spent most of the night hugging the toilet, I was so sick. That was the end of the Reprieve.
About a month ago I saw a Neuro who put me on 1mg Cabaser to be taken in the morning and 600mg Neurontin to be taken at night. The Cabaser is working great, no leg movements but I'm still only managing 4 hours sleep a night.
I gave the Neurontin away after a week as I ended up with migraines. I'm off tomorrow for a follow up with the Neuro and I'm praying he can give me something to make me sleep and take away the pain.
If only there was just one pill for a cure all!!!! My 5 cats think I'm nocturnal too
Take care
Gayl
I had a sleep study done earlier this year and was given Requip (Repreve in OZ). I took it home with instuctions on how often to increase, no follow up appointments, I was on my own! I worked up to 1mg per night which worked on my legs but I spent most of the night hugging the toilet, I was so sick. That was the end of the Reprieve.
About a month ago I saw a Neuro who put me on 1mg Cabaser to be taken in the morning and 600mg Neurontin to be taken at night. The Cabaser is working great, no leg movements but I'm still only managing 4 hours sleep a night.
I gave the Neurontin away after a week as I ended up with migraines. I'm off tomorrow for a follow up with the Neuro and I'm praying he can give me something to make me sleep and take away the pain.
If only there was just one pill for a cure all!!!! My 5 cats think I'm nocturnal too
Take care
Gayl
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No zzzzz's
- Posts: 14
- Joined: Wed Oct 05, 2005 3:55 am
- Location: Texas
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Me Curtis
Thank you both for replying so quickly. Looks like nothing has changed since my last attempt to research this mess.
I have found a few doctors in my area, but they are all Sleep Medicine and Pulmonary Medicine. Should I be seeing them or a Neurologist that specializes in this.
Thanks,
Curtis
P.S. They need to have one of these smiley Emoticons with bags under their eyes. Of course no smile!
I have found a few doctors in my area, but they are all Sleep Medicine and Pulmonary Medicine. Should I be seeing them or a Neurologist that specializes in this.
Thanks,
Curtis
P.S. They need to have one of these smiley Emoticons with bags under their eyes. Of course no smile!
Hi curtis,
i would say a nuerologist would be best, but sleep dr should be ok too??... bring stuff about rls (like the rls treatment guidelines) just in case he knows not so much.....
heres a link to the guidelines
http://www.mayoclinicproceedings.com/pd ... 907Crc.pdf
(and also info about treatments incl; requip)
http://www.rlshelp.org/rlsrx.htm
keep us informed on how you get on....... be good to hear from you as you go on your journey for sanity!!
i would say a nuerologist would be best, but sleep dr should be ok too??... bring stuff about rls (like the rls treatment guidelines) just in case he knows not so much.....
heres a link to the guidelines
http://www.mayoclinicproceedings.com/pd ... 907Crc.pdf
(and also info about treatments incl; requip)
http://www.rlshelp.org/rlsrx.htm
keep us informed on how you get on....... be good to hear from you as you go on your journey for sanity!!
Good evening to all
Hi To everyone, and welcome to Curtis.
I know that it was hard to write that post and submit Curtis, But I loved it.
I, too, hated it when my hubby would ask if I'd be sleeping in bed tonight or would he just see me in the morning? UGH! Your right it's beyond frustrating.
Giggled more than twice about the cats. Yes, Penguin I find that they think I've gotten up to see them and how cute they can be. The dog however, is not impressed with my gt out of bed routine. He follows, but gives me that I don't need to tinkle again look.
Curtis, I go to a sleep doc. and there are great nueros out there to. The real trick is to find someone that know their RLS stuff. You might call and ask if the doc has experience with it before you make an appt..
No, Requip is engineered. And like every other drug it has it's own side effects. We're big on self education around here. Don't wait for your doc to educate you about the medications most normally used. Really, it's a must to read the sticky posts in New to RLS thread.
I'll give you one website that is good for non-pharm tricks, Jill Gunzel's RLS Rebel...
http://members.cox.net/gunzel/rls.html
Yup, I'm glad we have the commerical. SO many people have found out they are not alone, nor are they crazy, because of it. It's a comfort here, with the other "normal ones". We all a big cyber family and glad to ahve you.
Hang in there. Ask questions or vent anytime.
I know that it was hard to write that post and submit Curtis, But I loved it.
I, too, hated it when my hubby would ask if I'd be sleeping in bed tonight or would he just see me in the morning? UGH! Your right it's beyond frustrating.
Giggled more than twice about the cats. Yes, Penguin I find that they think I've gotten up to see them and how cute they can be. The dog however, is not impressed with my gt out of bed routine. He follows, but gives me that I don't need to tinkle again look.
Curtis, I go to a sleep doc. and there are great nueros out there to. The real trick is to find someone that know their RLS stuff. You might call and ask if the doc has experience with it before you make an appt..
No, Requip is engineered. And like every other drug it has it's own side effects. We're big on self education around here. Don't wait for your doc to educate you about the medications most normally used. Really, it's a must to read the sticky posts in New to RLS thread.
I'll give you one website that is good for non-pharm tricks, Jill Gunzel's RLS Rebel...
http://members.cox.net/gunzel/rls.html
Yup, I'm glad we have the commerical. SO many people have found out they are not alone, nor are they crazy, because of it. It's a comfort here, with the other "normal ones". We all a big cyber family and glad to ahve you.
Hang in there. Ask questions or vent anytime.
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bradyferguson
- Posts: 74
- Joined: Tue Sep 21, 2004 1:29 pm
Hey Curits...
I too was diagnosed in 1992 and was put on Clonazepam for a 7 year period. Ended off on a dose of 4mg in 1999 and a trip to drug rehab. Since then I have gone through just about every medication in the RLS algorythm for the managment of RLS. I have been sent to shrinks who believed wholeheartedly that I was making up the symptoms in order to get a fix.
Truthfully I dont give a flying F... what they believe as long as my RLS specalists is backing me. My condition has been further complicated as I am in the military and they have insisted on making it next to impossible for me to get treatment.
I have learned that yes I have the full meal deal when it comes to my RLS. But instead of dwealling on that I have chosen to accept my condition. It is no secret to me that when I enter the warzone (my bedroom) that sleep will be minamal. I have recently done a sleep study and I had recorded 457 leg movments per hour. I may as well go to bed on a frickin exercise bike.
Luckily for me I have a big garage and love to work on my car so when my wife and kids are sleeping soundly I can usually be found out in the garage doing something that I love. Hey it beats laying in bed and beating the shi. out of my legs.
On a lighter note I have reciently painted my car 4 times in the past 3 weeks ! Well if the RLS does not kill me the paint fumes certinly will.
Anyway Curtis just thought that I would drop u a line and let you know that you are not alone. And yes my wife asks me the same Question " When are you comming to bed".
I am currently taking Mirapex with some relief. I probably would have painted my car 12 times had I not been using it. Problems that I have encounered with it.
1. Augmentation (developing daytime symptoms)
2. Bad acid reflux and motility problems.
3. Extreme sudden onset of tiredness (very periodically)
Hope you find some relief
Later
Brady
I too was diagnosed in 1992 and was put on Clonazepam for a 7 year period. Ended off on a dose of 4mg in 1999 and a trip to drug rehab. Since then I have gone through just about every medication in the RLS algorythm for the managment of RLS. I have been sent to shrinks who believed wholeheartedly that I was making up the symptoms in order to get a fix.
Truthfully I dont give a flying F... what they believe as long as my RLS specalists is backing me. My condition has been further complicated as I am in the military and they have insisted on making it next to impossible for me to get treatment.
I have learned that yes I have the full meal deal when it comes to my RLS. But instead of dwealling on that I have chosen to accept my condition. It is no secret to me that when I enter the warzone (my bedroom) that sleep will be minamal. I have recently done a sleep study and I had recorded 457 leg movments per hour. I may as well go to bed on a frickin exercise bike.
Luckily for me I have a big garage and love to work on my car so when my wife and kids are sleeping soundly I can usually be found out in the garage doing something that I love. Hey it beats laying in bed and beating the shi. out of my legs.
On a lighter note I have reciently painted my car 4 times in the past 3 weeks ! Well if the RLS does not kill me the paint fumes certinly will.
Anyway Curtis just thought that I would drop u a line and let you know that you are not alone. And yes my wife asks me the same Question " When are you comming to bed".
I am currently taking Mirapex with some relief. I probably would have painted my car 12 times had I not been using it. Problems that I have encounered with it.
1. Augmentation (developing daytime symptoms)
2. Bad acid reflux and motility problems.
3. Extreme sudden onset of tiredness (very periodically)
Hope you find some relief
Later
Brady
It's a Brady
It's a Brady.
Good morning to you. I'm sorry to hear your stuck in the garage. No inhaling LOL.
I hope your girls, all of them, are doing well and that you still have hope.
Hugs and miss ya around here.
Good morning to you. I'm sorry to hear your stuck in the garage. No inhaling LOL.
I hope your girls, all of them, are doing well and that you still have hope.
Hugs and miss ya around here.
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No zzzzz's
- Posts: 14
- Joined: Wed Oct 05, 2005 3:55 am
- Location: Texas
- Contact:
Thank you all
Penquin, mafs, trevb, becat and Brady, a big Thanks to you all. This is truly a great place. I get releif just communicating with people who understand.
I checked out the links that trevb provided and it looks to me that we all need to start smoking weed. (':shock:') To bad it's illegal. Also, I do not think that my kids would appreciate me doing what I tell them not to do. Seriously mixed messages! My wife would probably enjoy it more than me...Hmmmm?
becat, That commercial got my attention. I produce documentaries. Maybe we should pull resources and produce one on RLS. Also, thanks for the link.
Brady, sure your not smoking pot in the garage? I'd like to see that paint job. A big hats off to you for serving your country!!!! You have my respect. Thanks!
Yesterday I found out that this is a heriditary problem. I spoke with my mother and she told me that she has a very mild case of rls and so does my twin brother....!? My grandfather on her side who is no longer with us had it to. As you can tell my family does not talk much about thier personal problems. She let me try what she uses for hers which is Temazepam. I managed to get about 4 hrs. of sleep last night, but I know it is only a temporary fix. I am still trying to find the right doctor.
I find that the rls is worse during the summer HOT months than it is in the winter time. The colder the better. Anyone else agree with this. I guess I need to buy a house up north and migrate.
Thank you all and please stay in touch, I really enjoy this.
Curtis
I checked out the links that trevb provided and it looks to me that we all need to start smoking weed. (':shock:') To bad it's illegal. Also, I do not think that my kids would appreciate me doing what I tell them not to do. Seriously mixed messages! My wife would probably enjoy it more than me...Hmmmm?
becat, That commercial got my attention. I produce documentaries. Maybe we should pull resources and produce one on RLS. Also, thanks for the link.
Brady, sure your not smoking pot in the garage? I'd like to see that paint job. A big hats off to you for serving your country!!!! You have my respect. Thanks!
Yesterday I found out that this is a heriditary problem. I spoke with my mother and she told me that she has a very mild case of rls and so does my twin brother....!? My grandfather on her side who is no longer with us had it to. As you can tell my family does not talk much about thier personal problems. She let me try what she uses for hers which is Temazepam. I managed to get about 4 hrs. of sleep last night, but I know it is only a temporary fix. I am still trying to find the right doctor.
I find that the rls is worse during the summer HOT months than it is in the winter time. The colder the better. Anyone else agree with this. I guess I need to buy a house up north and migrate.
Thank you all and please stay in touch, I really enjoy this.
Curtis
Re: Thank you all
No zzzzz's wrote:I checked out the links that trevb provided and it looks to me that we all need to start smoking weed. (':shock:') To bad it's illegal. Curtis
???? weed!!!!did i give you the wrong link??? the picture on top of the rls help site is a coconut palm tree not a majuaina leaf!!LOL
good to have you aboard curtis!
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No zzzzz's
- Posts: 14
- Joined: Wed Oct 05, 2005 3:55 am
- Location: Texas
- Contact:
Weed!
trevb, this is from the http://www.rlshelp.org/rlsrx.htm link.
Marijuana
This illegal drug seems to have very beneficial effects for RLS. There are no known medical studies on this drug for RLS as the drug is not available even for medical research. There have been many anecdotal reports on the effectiveness of this drug for RLS.
According to the reports from patients who have used marijuana, it often takes only a very small amount of the drug (often as little as 2 inhalations of a marijuana cigarette) to relieve RLS symptoms. The onset of action of this drug can be amazingly fast with complete symptom relief occurring within 2-3 minutes.
This drug should be used with caution as the long term effects of smoking marijuana are not fully known and, of course, since the drug is illegal, legal problems may occur if the user is caught by police.
Now, I am not promoting this in anyway! I just found it to be quite humorous thinking of all of us sneaking off in the middle of the night taking a few hits.
Good to be onboard trevb!
Marijuana
This illegal drug seems to have very beneficial effects for RLS. There are no known medical studies on this drug for RLS as the drug is not available even for medical research. There have been many anecdotal reports on the effectiveness of this drug for RLS.
According to the reports from patients who have used marijuana, it often takes only a very small amount of the drug (often as little as 2 inhalations of a marijuana cigarette) to relieve RLS symptoms. The onset of action of this drug can be amazingly fast with complete symptom relief occurring within 2-3 minutes.
This drug should be used with caution as the long term effects of smoking marijuana are not fully known and, of course, since the drug is illegal, legal problems may occur if the user is caught by police.
Now, I am not promoting this in anyway! I just found it to be quite humorous thinking of all of us sneaking off in the middle of the night taking a few hits.
Good to be onboard trevb!
yeah, i know it was there... i was just having a laugh
its illegal here in england too! , and there is newer research that has come out that links mental illness (psychosis etc) with longterm marijuana use. then again theres research to show it doesnt.... hmm....
one day they will see sense and classify for pharmacuetical use (like heroin is, which is a class A drug and maj: is only class C... make sense of that!!) it has shown to help many sufferers of many illnesses like rls, parkinsons and Multiple sclerosis. (my personal opinion.)
its illegal here in england too! , and there is newer research that has come out that links mental illness (psychosis etc) with longterm marijuana use. then again theres research to show it doesnt.... hmm....
one day they will see sense and classify for pharmacuetical use (like heroin is, which is a class A drug and maj: is only class C... make sense of that!!) it has shown to help many sufferers of many illnesses like rls, parkinsons and Multiple sclerosis. (my personal opinion.)
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Penguinrocks
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- Location: Massachusetts
- Contact:
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No zzzzz's
- Posts: 14
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