Xyrem, it works!
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rckeckrt
Xyrem, it works!
I've been taking Xyrem for about a month. This stuff works pretty well. All my symptoms disapear,and there's no morning after effects, you wake up feeling great not like all the others meds I have taken over the years, and there's no harm to the body like the others. Ask you Dr. you may just like it. One more thing if you go online to read up on Xyrem you may get a little apprehensive, don't believe everything you read at the correct dosage you will be amazed how well it works for you. This is phaarmaceutical grade GHB not the bathtub lab stuff they sell on the street you always hear about.
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ViewsAskew
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I am very interested in this. I have some questions, of course 
Do you also take anything else for your RLS, or just this? How severe was your RLS when you started taking this? What other meds have you tried and how did they work? I know it is a lot of questions, and I hope you won't mind answering them.
Because this drug improves stage 3 and 4 sleep, this seems like it could be very beneficial - many of us do not get much (if any) stage 3 and 4 sleep. Even if it didn't help the RLS enough on its own, it seems like adding a small amount of this could really help give us the quality sleep we seem to be missing.
Thanks for sharing this information. I really appreciate it.
Ann
Do you also take anything else for your RLS, or just this? How severe was your RLS when you started taking this? What other meds have you tried and how did they work? I know it is a lot of questions, and I hope you won't mind answering them.
Because this drug improves stage 3 and 4 sleep, this seems like it could be very beneficial - many of us do not get much (if any) stage 3 and 4 sleep. Even if it didn't help the RLS enough on its own, it seems like adding a small amount of this could really help give us the quality sleep we seem to be missing.
Thanks for sharing this information. I really appreciate it.
Ann
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
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Guest
I started taking meds for my RLS about 3 yrs ago. Started with the parkinson meds, anti convls, I've probably tried 15 different kinds of pills. The vicodins work the best but trying to get those can be difficult at times. The RLS is almost constant having moved to the rest of my body. The Xyrem is not something you take during the day, but I can tell you at night it does relieve all ny symptoms. I do have 1 problem with it my symptoms are really bad starting at about 7:00 pm so I haved to take a small dose of the Xyrem to relax, your supposed to take it in bed before sleep, but I don't want to fall asleep at 7:00 at night, I then take a nother smaal dose before bed and sleep like a baby. With no morning side effects like all the others I've tried. If you need any help post back a reply. Thank You
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rckeckrt
hello1
Anonymous wrote:I started taking meds for my RLS about 3 yrs ago. Started with the parkinson meds, anti convls, I've probably tried 15 different kinds of pills. The vicodins work the best but trying to get those can be difficult at times. The RLS is almost constant having moved to the rest of my body. The Xyrem is not something you take during the day, but I can tell you at night it does relieve all ny symptoms. I do have 1 problem with it my symptoms are really bad starting at about 7:00 pm so I haved to take a small dose of the Xyrem to relax, your supposed to take it in bed before sleep, but I don't want to fall asleep at 7:00 at night, I then take a nother smaal dose before bed and sleep like a baby. With no morning side effects like all the others I've tried. If you need any help post back a reply. Thank You
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justme
Re: Xyrem, it works!
rckeckrt wrote:I've been taking Xyrem for about a month. This stuff works pretty well. All my symptoms disapear,and there's no morning after effects, you wake up feeling great not like all the others meds I have taken over the years, and there's no harm to the body like the others. Ask you Dr. you may just like it. One more thing if you go online to read up on Xyrem you may get a little apprehensive, don't believe everything you read at the correct dosage you will be amazed how well it works for you. This is phaarmaceutical grade GHB not the bathtub lab stuff they sell on the street you always hear about.
Please tell me how you got your Dr. to give this to you. I have just been diagnosed with RLS, and after reading the Requip info as well as the feedback in here, there is no way I will take it. I actually used to use GHB years ago, and it was the best sleep that I ever had. My Dr. is very close minded about it. He actually said "I am not going to RX Rohypnol to you" I have tried and tried to educate him about it, and it's safety when used properly and not as a recreational substance. He finally has promised me he will look into it, so maybe there is hope. He is a great dr. and a good guy, but just scared of what he has heard about the abuse I suppose. I know that RLS is an off label use, so how did you make it happen. If by any stroke of luck you are in Nebraska, please say so and I will create an account so we can PM if you don't want to share info out loud. Thank you
Xyrem
Thought I would post here instead of the lyrica thread. Anyways I did use this when I was younger and into weightlifting. I had never slept better and when it was banned I was pretty bummed. The side effects on the lyrica have slowed but I would love to give xyrem a shot, sure it is better than the supplements I bought back then.
Randy
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ViewsAskew
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Em, I think the same person also posted about xyrem on the We Move board a few months back. You could try there, too.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
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ViewsAskew
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Yippee! I hope he has a solution for you, Em. 6 more days. . . At least this time you're sure you will see an honest to goodness RLS specialist, LOL.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
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ViewsAskew
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Well, it is supposed to be August, but I know he was making some edits just last month. . .
It will be soon. The edits he was making were the last of them. I haven't asked him to see the edits he or the editor made to my small contribution. I might
. You can actually order the book on Amazon right now. I think he said there were already some advance orders - not sure how many, but that is a good feeling. Obviously people want and need this kind of a book. It should be incredibly helpful for us to take with us to our doctors.
Jill's book is great to help us help get through the parts where meds don't work (or we don't want them), and Dr B/Dr Hening's will be great to help with medication, our families and our doctors. Between them, I think much of what we have been wanting will be covered.
It will be soon. The edits he was making were the last of them. I haven't asked him to see the edits he or the editor made to my small contribution. I might
. You can actually order the book on Amazon right now. I think he said there were already some advance orders - not sure how many, but that is a good feeling. Obviously people want and need this kind of a book. It should be incredibly helpful for us to take with us to our doctors.
Jill's book is great to help us help get through the parts where meds don't work (or we don't want them), and Dr B/Dr Hening's will be great to help with medication, our families and our doctors. Between them, I think much of what we have been wanting will be covered.
Last edited by ViewsAskew on Sun Jul 23, 2006 7:54 pm, edited 1 time in total.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
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walkindafloors
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Ann, I'm new to all this and not sure what books you and Emily are referring to, but seems from your remarks they may be information I should check out. Can you tell me where to go to get more information or if you can, repost here. I am a 24/7, arms & legs kinda gal, looking for whatever information I can soak in. My daughter found this site for me when I'd reached my wits end after weeks of much stress and sleep deprivation which then increased RLS symptoms. I was actually beginning to think I was going crazy and these "silly" leg symptoms were all mental. I'm back to sane (or as close as I've ever been) now but still struggling with new med trials (Lyrica) and trying to maintain.
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ViewsAskew
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walkin - you're in a rough spot, huh? Many of us come here at the same time in our lives. I did. It saved my life. I stayed because of all the friends I made. Besides, I have to pay it forward!
The book isn't out yet - it is by Drs Buchfurer and Hening. There is also a chapter by an RN and a chapter by me. It covers the gamut of RLS - diagnosis, treatment, how to work with your doctor, and even how to manage your relationships when faced with a chronic illness. It is due out in August and you can pre-order in on Amazon.
Right now, there is an excellent book by Jill - the RLS Rebel. Here is a link to her site. http://members.cox.net/gunzel/index.html One of our newer members, Ray, got it and it's helped him tremendously through a very rough period.
And, for validation, Sleep Thief is a great read.
I haven't read the other new RLS book - I should I guess. I can't think of the author's name at the moment but someone here mentioned it recently.
To get a handle on this, keep doing what you're doing. Read the posts. Not that my way is the best way, but I was so desperate when I got here that I read EVERY post, lol. Becat would laugh at me when I'd dig up some old post and add to it. Laughing in a nice way, of course!
Have you read the Managing RLS sticky post? It has some great links in it and wonderful information that can help you make some decisions about how to proceed, what meds to try (or not), how to make other changes that may help diminish the RLS, etc. There is a lot of info in there that is suitable to take to your doctor, too, to help further educate him or her.
I am sorry that you are having such a hard time. It really is unbelievably awful - people who haven't had it just don't understand it. For most of us, though, we can get to the point we can manage it and get back some of the quality of life we've lost.
The book isn't out yet - it is by Drs Buchfurer and Hening. There is also a chapter by an RN and a chapter by me. It covers the gamut of RLS - diagnosis, treatment, how to work with your doctor, and even how to manage your relationships when faced with a chronic illness. It is due out in August and you can pre-order in on Amazon.
Right now, there is an excellent book by Jill - the RLS Rebel. Here is a link to her site. http://members.cox.net/gunzel/index.html One of our newer members, Ray, got it and it's helped him tremendously through a very rough period.
And, for validation, Sleep Thief is a great read.
I haven't read the other new RLS book - I should I guess. I can't think of the author's name at the moment but someone here mentioned it recently.
To get a handle on this, keep doing what you're doing. Read the posts. Not that my way is the best way, but I was so desperate when I got here that I read EVERY post, lol. Becat would laugh at me when I'd dig up some old post and add to it. Laughing in a nice way, of course!
Have you read the Managing RLS sticky post? It has some great links in it and wonderful information that can help you make some decisions about how to proceed, what meds to try (or not), how to make other changes that may help diminish the RLS, etc. There is a lot of info in there that is suitable to take to your doctor, too, to help further educate him or her.
I am sorry that you are having such a hard time. It really is unbelievably awful - people who haven't had it just don't understand it. For most of us, though, we can get to the point we can manage it and get back some of the quality of life we've lost.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.