I'm 47, had severe RLS for 12 years, used to take Mirapex but have been on Requip for the last 6 years at a dosage of 8 mg/day for the past few months.
My neurologist, whom I have no faith in, finally figured out that the requip is augmenting and had me go cold turkey 8 days ago. He prescribed Klonopin 1 mg a night which I've been taking.
My RLS is greatly exasperated right now anyway because my ferritin level is down to 8.
In the last 8 days, I have slept twice, once on day 4 for seven hours and once on day 8 for six hours. I don't know what to do. I can't sit down, I can't lie down, I can't stand up without falling down 'cause my head won't stay up 'cause I'm too tired. I can't go on like this.
Please, can anyone tell me how to get some sleep?
Please help, I'm desperate
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puppitypup
- Posts: 2
- Joined: Fri Sep 19, 2008 2:07 pm
- Location: San Diego
Hi Pup,
I'm so sorry to hear that this is where your doc has left you. I'm not a doc and have no formal medical training, but I have had RLS all my life and been apart of this board and the Foundation for 4+ yrs. I'm 44.
Most people would never be at a 8mg a day for RLS, so he out of his mind.
Our community experts, and some disagree, but the normal max is around 3 mgs. A day.
It was ok, according to our Dr. B. that you go cold turkey, but with the help of a pain med to help you through this horrible time.
I would be on the phone today, NOW, and asking for help with that.
Before you find a new and better doc, your present doc. can come to this website's homepage and look up the RLS algorithm and see for himself that his course of action would have done just this to you.
I'd say that 8 days is most likely not enough yet at 8mgs a day, to get it fully out of your system. You can hang in there, but your doc seems a bit behind the times.
Ok, he is a neuro, they don't seem to mind the higher doses, in fact it was of great discussion (according to Dr. B.) when they put out the starter packs........the neuros were fine by the higher dose, but our docs said 3 should be max.
I'm so glad you found us and sad that you needed to, but I promise you will get support and awesome answers here.
Call your doc today and ask that he do something more, HAVE TO.
Tell your doc what you said here:
"In the last 8 days, I have slept twice, once on day 4 for seven hours and once on day 8 for six hours. I don't know what to do. I can't sit down, I can't lie down, I can't stand up without falling down 'cause my head won't stay up 'cause I'm too tired. I can't go on like this."
He needs to know and can be educated!
Hope is all your my dear, we don't give up on anyone here. Your home and not alone anymore!
Lynne
I'm so sorry to hear that this is where your doc has left you. I'm not a doc and have no formal medical training, but I have had RLS all my life and been apart of this board and the Foundation for 4+ yrs. I'm 44.
Most people would never be at a 8mg a day for RLS, so he out of his mind.
Our community experts, and some disagree, but the normal max is around 3 mgs. A day.
It was ok, according to our Dr. B. that you go cold turkey, but with the help of a pain med to help you through this horrible time.
I would be on the phone today, NOW, and asking for help with that.
Before you find a new and better doc, your present doc. can come to this website's homepage and look up the RLS algorithm and see for himself that his course of action would have done just this to you.
I'd say that 8 days is most likely not enough yet at 8mgs a day, to get it fully out of your system. You can hang in there, but your doc seems a bit behind the times.
Ok, he is a neuro, they don't seem to mind the higher doses, in fact it was of great discussion (according to Dr. B.) when they put out the starter packs........the neuros were fine by the higher dose, but our docs said 3 should be max.
I'm so glad you found us and sad that you needed to, but I promise you will get support and awesome answers here.
Call your doc today and ask that he do something more, HAVE TO.
Tell your doc what you said here:
"In the last 8 days, I have slept twice, once on day 4 for seven hours and once on day 8 for six hours. I don't know what to do. I can't sit down, I can't lie down, I can't stand up without falling down 'cause my head won't stay up 'cause I'm too tired. I can't go on like this."
He needs to know and can be educated!
Hope is all your my dear, we don't give up on anyone here. Your home and not alone anymore!
Lynne
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SquirmingSusan
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- Joined: Sun Nov 12, 2006 4:08 am
- Location: Minnesota
- Contact:
I agree. You need to call your doctor and ask for some pain meds to get you through until your RLS settles down. The drugs that your neuro gave you did this to you, and now he can be responsible for helping you get past this. Neurologists really like their Klonopin, but it's not strong enough to get you past the augmentation.
Susan
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Polar Bear
- Moderator
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- Joined: Tue Dec 26, 2006 4:34 pm
- Location: United Kingdom
Hi Pup,
If it were me I'd be at the doc asking for a sleep aid, even if just for a short time, just to get some sleep.
I am using requip, dose is 2mg daily (spread across the day) and I try to only use 1.5mg. But I do use Ambien 5mg as a sleep aid. It is short acting so I take one when going to sleep, and the other when I wake up at around 3/4am, I waken several times even with the sleep aid but it is still much better than walking the floors every night, now I go walkabout much less.
8mg requip seems to be more than anyone with rls should be on. My doc has the Mayo algorithm and uses it to educate himself when I am attending for appointment.
The no-sleep issue is a literal nightmare, I have been there, leaning against the wall, pumping my legs, exhausted, but unable to lie down on the bed.
I used to think that people who used sleeping pills etc. were a bit weak-willed....... boy, have I learned a lot. I will take all the help I can get.
Tho I will use it responsibly.
If it were me I'd be at the doc asking for a sleep aid, even if just for a short time, just to get some sleep.
I am using requip, dose is 2mg daily (spread across the day) and I try to only use 1.5mg. But I do use Ambien 5mg as a sleep aid. It is short acting so I take one when going to sleep, and the other when I wake up at around 3/4am, I waken several times even with the sleep aid but it is still much better than walking the floors every night, now I go walkabout much less.
8mg requip seems to be more than anyone with rls should be on. My doc has the Mayo algorithm and uses it to educate himself when I am attending for appointment.
The no-sleep issue is a literal nightmare, I have been there, leaning against the wall, pumping my legs, exhausted, but unable to lie down on the bed.
I used to think that people who used sleeping pills etc. were a bit weak-willed....... boy, have I learned a lot. I will take all the help I can get.
Tho I will use it responsibly.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation
Good god 8mg, someone should call that guy and let him have it..
You definitely need an opiate of some kind, I can't even imagine going through that kind of augmentation
Anyway, yeah first step is to hit him over the heard with the Mayo Algorithm.. Hope this gets sorted for you pronto
And be sure he knows HOW sleep deprived you are, if anything I'd at least try an urgent care / er to see if they couldn't help you if your neuro won't
You definitely need an opiate of some kind, I can't even imagine going through that kind of augmentation
Anyway, yeah first step is to hit him over the heard with the Mayo Algorithm.. Hope this gets sorted for you pronto
And be sure he knows HOW sleep deprived you are, if anything I'd at least try an urgent care / er to see if they couldn't help you if your neuro won't
Yeah, you need a pain medication in addition to the Klonopin. It'll knock you slam out. Even something mild like Tylenol-Codeine #3 he ought to be willing to prescribe a little for you.
Another thing you can try is, when you have a day off, take the Klonopin in the late afternoon or very early evening, double the dose so you'll get real, real sleepy, and it might help you sleep on up to and through the night. Just that one time, though, to get you unwound.
Another thing you can try is, when you have a day off, take the Klonopin in the late afternoon or very early evening, double the dose so you'll get real, real sleepy, and it might help you sleep on up to and through the night. Just that one time, though, to get you unwound.
Re: Please help, I'm desperate
puppitypup wrote:I'm 47, had severe RLS for 12 years, used to take Mirapex but have been on Requip for the last 6 years at a dosage of 8 mg/day for the past few months.
My neurologist, whom I have no faith in, finally figured out that the requip is augmenting and had me go cold turkey 8 days ago. He prescribed Klonopin 1 mg a night which I've been taking.
1. Why did you you stop taking Mirapax, and was Requip more effective?
2. To go cold turkey off a dopamine agonist is just plain ridiculous.
3. Did the clonazepam help?
4. I would sack any quack who took you off the meds cold turkey in a second.
HI John,
I wanted to tell you that I was shocked that Dr. B., when asked about stopping a dopamine med cold turkey, he said that was the way to go, but with some meds to help.
Many of us that have stopped it in the past have had a really hard time like Pup, and even thought ourselves maybe this should be stepped down from.
But it's not the thinking of the docs in our community. However, they do expect that something is given to help the patient through the hard times.
And Yes, normally it's done with pain meds.
Pup's doc must have thought the Klonopin would have been enough, but his dose of the dopamine meds was almost 3x's what RLSers would take as a max dose, as well.
Certainly a case where edg-U-MA-cation would have save this poor thing much trouble and pain.
Lynne
I wanted to tell you that I was shocked that Dr. B., when asked about stopping a dopamine med cold turkey, he said that was the way to go, but with some meds to help.
Many of us that have stopped it in the past have had a really hard time like Pup, and even thought ourselves maybe this should be stepped down from.
But it's not the thinking of the docs in our community. However, they do expect that something is given to help the patient through the hard times.
And Yes, normally it's done with pain meds.
Pup's doc must have thought the Klonopin would have been enough, but his dose of the dopamine meds was almost 3x's what RLSers would take as a max dose, as well.
Certainly a case where edg-U-MA-cation would have save this poor thing much trouble and pain.
Lynne
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Scarlett46
- Posts: 107
- Joined: Wed Jun 04, 2008 6:43 pm
- Location: Michigan
This is similar to my doctor's reaction too...
When the doctor gave me a sample pack of Mirapex, he said "if it doesn't work, then just stop taking it".
Well, trying to be optimistic and hopeful, I gave it an extra week to see if it would start getting better. Augmented - still worse now (months later) than it ever was.
Went back to the doc, told him Mirapex didn't work, so he gave me Klonopin. I did the same thing with this... felt no difference, but optimism said maybe it will in a while... I'm finally off that. No reason to take a drug that does nothing for me.
Now... my doctor admits to not being extremely knowledgeable about RLS... would prefer to send me to a sleep study and a sleep specialist. But is working with me on what I can afford to do. Still now answers or solutions yet. But at least my doctor is not the only one thinking this way.
Hoping there's a solution and releif for all of us soon!
When the doctor gave me a sample pack of Mirapex, he said "if it doesn't work, then just stop taking it".
Well, trying to be optimistic and hopeful, I gave it an extra week to see if it would start getting better. Augmented - still worse now (months later) than it ever was.
Went back to the doc, told him Mirapex didn't work, so he gave me Klonopin. I did the same thing with this... felt no difference, but optimism said maybe it will in a while... I'm finally off that. No reason to take a drug that does nothing for me.
Now... my doctor admits to not being extremely knowledgeable about RLS... would prefer to send me to a sleep study and a sleep specialist. But is working with me on what I can afford to do. Still now answers or solutions yet. But at least my doctor is not the only one thinking this way.
Hoping there's a solution and releif for all of us soon!
"After all... Tomorrow is another day!"
Haha, I was once sent to a sleep clinic and this young doc said the best thing for RLS was to take iron supplements, and if that didn't work, Madopar was the drug. Yeah..right.
I have had experiences, even in my own family, where my Dad and two of my sisters are all docs, where they say 'shouldn't you just try what the doctor advises?'.
Well, due to personal experience I just have to say NO WAY. I think if some of the doc's spent the time to read forums such as these a lot patients would be better off. This really frustrates me, like, we are all here to help fellow sufferers.
John
I have had experiences, even in my own family, where my Dad and two of my sisters are all docs, where they say 'shouldn't you just try what the doctor advises?'.
Well, due to personal experience I just have to say NO WAY. I think if some of the doc's spent the time to read forums such as these a lot patients would be better off. This really frustrates me, like, we are all here to help fellow sufferers.
John
I'm brand new to this forum - this is my first post. I have suffered with RLS my whole life (I'm forty eight) - Mom, sister and brother have it as well. Unfortunately, it also creeps into my arms when I go to bed --- its enough to make anyone crazy --- and unless anyone has experienced this, they have no clue !! Anyway, finally went back to the doc Monday and she put me on Robaxin, which is a muscle relaxer. I take as soon as the "first flicker" of RLS rears itself in the evening. I tried Requip and Mirapex - but didn't work for me. So far so good -- I was waking three times in the night -- past couple nights only woke once. Sleep is a good thing. I find that when I am tired my RLS symptoms are worse. I am loving this forum and reading everyones posts. Look forward to lots of support, advice and help !!! Puppitypup.....find you a doc !! You need to sleep ! Has anyone had any experiences with muscle relaxers ?
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ViewsAskew
- Moderator
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- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
Welcome, SKN - yep, RAS is common (restless arm syndrome). Actually, we all agree that it's really RBS - restless body syndrome. It can be just about anywhere.
Since you're new, I think you're in for a treat. We've compiled some of the best information about RLS short of buying a lengthy book. Start with the "sticky" posts at the top of each section. These will provide in depth info. They are something you can come back to time and time again.
Also, reading the old posts and doing searches will net you even more great info. Worried about something? Chances are it already has been talked about - that can make you feel a lot better when you need an answer now! I am pretty sure that someone was just asking about muscle relaxers in the Pharma forum. If you're not accustomed to using a forum like this, it can be helpful just to read the titles of all the posts and open ones that seem interesting.
Hope you find what you need here.
Since you're new, I think you're in for a treat. We've compiled some of the best information about RLS short of buying a lengthy book. Start with the "sticky" posts at the top of each section. These will provide in depth info. They are something you can come back to time and time again.
Also, reading the old posts and doing searches will net you even more great info. Worried about something? Chances are it already has been talked about - that can make you feel a lot better when you need an answer now! I am pretty sure that someone was just asking about muscle relaxers in the Pharma forum. If you're not accustomed to using a forum like this, it can be helpful just to read the titles of all the posts and open ones that seem interesting.
Hope you find what you need here.
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.
Hi Pup and welcome to this group. I cannot believe that your dr had you take 8mgs of requip and then stop it cold turkey.
I took Requip two years and started out with the starter pak and then my dr gave me a prescription for 2mgs and that is when the nightmare started. I no longer am seeing this dr.
On this forum please see the sticky posts "Managing RLS" there is alot of good information to read and also the Mayo Clinic Algorithm. Please read this and make a copy for your dr. It is so important to find a dr that has knowledge of rls and is willing to work with you and above all listen to you.
Educating yourself as much as you can re rls and you may have to educate your dr too. We are here for you for support anytime.
I agree that the dr should of given you a pain med and also wean you off of the requip not go cold turkey.
I do take clonazapem but not by itself. I also take mirapex and take the lowest dosage which is .125mg. My summer time was not the best for me as with the heat and humidity it seemed nothing worked that well.
You should always start out with the lowest dosage and see how it works for you. I am not a dr nor have any medical knowledge but just what I have been reading.
There are two good sites to read www.rlshelp.org and www.wemove.org
Please keep us posted on how you are doing. Also I hope that you are able to get the sleep that you so much deserve.
Have you checked to see if there is a support group near where you live?
I am the chat hostess and we chat every Monday night. Below my signature is the link that will get you right into the chat room. You are the same time zone as I am. I get on at 6pm Arizona time and hope that you are up to chat.
I took Requip two years and started out with the starter pak and then my dr gave me a prescription for 2mgs and that is when the nightmare started. I no longer am seeing this dr.
On this forum please see the sticky posts "Managing RLS" there is alot of good information to read and also the Mayo Clinic Algorithm. Please read this and make a copy for your dr. It is so important to find a dr that has knowledge of rls and is willing to work with you and above all listen to you.
Educating yourself as much as you can re rls and you may have to educate your dr too. We are here for you for support anytime.
I agree that the dr should of given you a pain med and also wean you off of the requip not go cold turkey.
I do take clonazapem but not by itself. I also take mirapex and take the lowest dosage which is .125mg. My summer time was not the best for me as with the heat and humidity it seemed nothing worked that well.
You should always start out with the lowest dosage and see how it works for you. I am not a dr nor have any medical knowledge but just what I have been reading.
There are two good sites to read www.rlshelp.org and www.wemove.org
Please keep us posted on how you are doing. Also I hope that you are able to get the sleep that you so much deserve.
Have you checked to see if there is a support group near where you live?
I am the chat hostess and we chat every Monday night. Below my signature is the link that will get you right into the chat room. You are the same time zone as I am. I get on at 6pm Arizona time and hope that you are up to chat.
Charlene
Taking one day at a time
Taking one day at a time
skn0412 wrote:I'm brand new to this forum - this is my first post. I have suffered with RLS my whole life (I'm forty eight) - Mom, sister and brother have it as well. Unfortunately, it also creeps into my arms when I go to bed --- its enough to make anyone crazy --- and unless anyone has experienced this, they have no clue !! Anyway, finally went back to the doc Monday and she put me on Robaxin, which is a muscle relaxer. I take as soon as the "first flicker" of RLS rears itself in the evening. I tried Requip and Mirapex - but didn't work for me. So far so good -- I was waking three times in the night -- past couple nights only woke once. Sleep is a good thing. I find that when I am tired my RLS symptoms are worse. I am loving this forum and reading everyones posts. Look forward to lots of support, advice and help !!! Puppitypup.....find you a doc !! You need to sleep ! Has anyone had any experiences with muscle relaxers ?
Hi skn0412
Your symptoms sound a lot like mine, the Requip and Mirapax take away the RLS in my legs, but now I get it mainly in my arms when trying to sleep, it's awful isn't it. Plus the Mirapax makes me depressed and drowsy next day, I have to take over 1.5MG. I'm going to look into that Robaxin and see if I can get it and try it out.
Glad you're getting some relief.
John