i just wondered what the current situation is. i'm happy suffering for the moment with rls and am fighting against the path to pharmaceutical drugs.
my main concern is that once prescribed something i will have side-effects or it won't work and then be bounced along medication lines for the rest of my life with drugs no-one knows the long term effects of.
i can really understand the desperation that rls puts on people, i really can, and i believe i'll be there before long but i just can't see anything positive from drugs companies that doesn't make me think they're not as sure as they think they are that their drugs work.
i would wade through all the threads but wanted to hear some success stories and opposite.
whilst i can understand non-pharma stuff working for some and not for others, it just doesn't add up that the same can be said for pharma drugs.
do they actually know what they're doing or did they get lucky with some parkinsons drug and are trying hard to shoehorn it into the rls world?
call me a cynic eh?!
Does anything really work long term?
The main problem with most pharmaceuticals can be found in most descriptions of treatments or the conditions themselves. "though the mechanism by which it works is not entirely understood" is a common tagline for a lot of conditions and their associated treatments.
At best, most times we just have an educated guess at what is going on, and even less so as patients. Only the researchers really know what is going on and how clear their own picture is.
I can't speak for long-term in terms of 10 or 20 years out, but over the past few years, my personal management issues aside, I have consistently responded to narcotics in many different forms, at many different dosages. But due to the aforementioned management issues I don't have a lot of data for a solid specific dose over a long period of time.. I would imagine much like with a chronic pain disorder, once you reach equilibrium where you eradicate your symptoms, and can control the urge to "take more just because", most people would find them pretty helpful for years or decades to come.
That's my take on things.
At best, most times we just have an educated guess at what is going on, and even less so as patients. Only the researchers really know what is going on and how clear their own picture is.
I can't speak for long-term in terms of 10 or 20 years out, but over the past few years, my personal management issues aside, I have consistently responded to narcotics in many different forms, at many different dosages. But due to the aforementioned management issues I don't have a lot of data for a solid specific dose over a long period of time.. I would imagine much like with a chronic pain disorder, once you reach equilibrium where you eradicate your symptoms, and can control the urge to "take more just because", most people would find them pretty helpful for years or decades to come.
That's my take on things.
-
ViewsAskew
- Moderator
- Posts: 16590
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
It is variable, person to person. Some people have been on the same drug for years. Others? They get a few days.
Opioids seem to have the best track record of time. Then again, the benzos also seem to be tolerated well over time, but they don't help as high a percentage as do the DAs or opioids.
I went through 9 or so drugs in 6 months. . .now I've been on the same Methadone dose for over two years and taking it for almost 3 years.
If you can hold off taking them, I think it's best. But when it interferes with your life? Sometimes you just have to try them and hope that you'll get lucky (well, not that kind of lucky!).
Opioids seem to have the best track record of time. Then again, the benzos also seem to be tolerated well over time, but they don't help as high a percentage as do the DAs or opioids.
I went through 9 or so drugs in 6 months. . .now I've been on the same Methadone dose for over two years and taking it for almost 3 years.
If you can hold off taking them, I think it's best. But when it interferes with your life? Sometimes you just have to try them and hope that you'll get lucky (well, not that kind of lucky!).
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.
does anything work long term
Hi Alf It all depends on how your body reacts to any meds. For myself, I first started clonazapem .5mg for one year in 2005 and then decided that since it was a control substance I should quit it. That I did cold turkey which is something that I have to say never, never do that. What a nightmare.
I was weaned off of clonazapem and tried requip. Got the starter pack from my dr and that was just fine. Well when I got my prescription she made it for 2mg and boy what a nightmare that was. I took this in 2006 for about 9 months and within a week started to augment (which I did not at that time know what that was) I had rls 24/7 and very painful. I finally found a neurologist who has knowledge of rls (since he does have rls) and weaned me off of requip and asked why I stopped clonazapem as it was working for me. He said try and see what happens. Well I have been on clonazapem since Sept. 2006 ( I know some people will say that is not a long time, but like I said it all depends on how your body reacts to meds) and so far am doing fine. I do not have any problem with my rls and he also has me taking mirapex .125 mg; however I cut that pill in half. BTW I am only taking .75 mg of clonazapem.
LIke I have said if it is not broken why fix it. Opioids may have the best track record but not for everyone. Sometimes benzos may be the way to go.
Whatever you choose good luck to you and hope that it works for you.
I was weaned off of clonazapem and tried requip. Got the starter pack from my dr and that was just fine. Well when I got my prescription she made it for 2mg and boy what a nightmare that was. I took this in 2006 for about 9 months and within a week started to augment (which I did not at that time know what that was) I had rls 24/7 and very painful. I finally found a neurologist who has knowledge of rls (since he does have rls) and weaned me off of requip and asked why I stopped clonazapem as it was working for me. He said try and see what happens. Well I have been on clonazapem since Sept. 2006 ( I know some people will say that is not a long time, but like I said it all depends on how your body reacts to meds) and so far am doing fine. I do not have any problem with my rls and he also has me taking mirapex .125 mg; however I cut that pill in half. BTW I am only taking .75 mg of clonazapem.
LIke I have said if it is not broken why fix it. Opioids may have the best track record but not for everyone. Sometimes benzos may be the way to go.
Whatever you choose good luck to you and hope that it works for you.
Charlene
Taking one day at a time
Taking one day at a time
My neuro said they are studying RLS like nothing he's ever seen and believes there will be breakthroughs in medication in the next 5 years. He said the drug companies saw how many people were hoping to benefit from Requip, and how a large percent of us, well, it made it worse...so they are hoping to cash in big time if they find something that actually works for the majority of sufferers.
That's what he said, just passing it along.
That's what he said, just passing it along.
Long Term Meds
THE ONLY thing I have had long term, ie 10 years plus effective with is narcotics. Doses do have to be changed occasionaly. I can't say enough for Methadone for this problem. Because it is so long acting it works for day problems as well. I have rls 24/7 in all of my limbs and hands and the narcs work the best. Prob is convincing the docs of this. It wasnt until I had nerves pinched in a car accident that they prescribed regular methadone. I did have sucess with Primadone/Mysoline for about 2 years but then it augmented. Not fun!!!! 
RLS since I was 7
Hi Alf
I've had pretty much all the DA's available in Australia thrown at me in various strengths and dosages ... and they've all been thrown back.
The most effective for my situation have been (and is now) a mix of pain meds and clonazepam (max 1mg/nite).
A major case of insomnia stemming from another current health problem doesnt help right now, but at least I can say that my 24/7 RLS is under better control than it was and is down to about 8-12/7 lol
Take care of you!
BTW: I likes the shoehorn comment lol
I've had pretty much all the DA's available in Australia thrown at me in various strengths and dosages ... and they've all been thrown back.
The most effective for my situation have been (and is now) a mix of pain meds and clonazepam (max 1mg/nite).
A major case of insomnia stemming from another current health problem doesnt help right now, but at least I can say that my 24/7 RLS is under better control than it was and is down to about 8-12/7 lol
Take care of you!
BTW: I likes the shoehorn comment lol
Nadia
My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!
My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!
sorry to hear about your issues sardsy, this is such a crazy disease. i feel constantly suspicious of doctors these days that they would rather just give you anything regardless of side-effects just to pack you off. ten years ago i was humiliated by my doctor about this condition which he didn't believe in and i suppose i'm still sore from that.
if it gets worse in time i'm not sure what direction i'd have to take, no doubt meds. but i live in hope that there is something undiscovered out there.
due to my own positive experiment i'd heavily suggest cannibinoids are a good starting place to look, especially as it is getting recognised for parkinsons, alzheimers (amazingly) and other neurol dispositions. and no i'm not a junkie
But due to heavy laws in america (which filters out to the uk) i doubt we will see any investigation or clinical tests in the near future.
imo this is a very sad situation where prohibition of a natural product has made sufferers criminal for self-help and clinical investigation extremely difficult, if not impossible. Surely the medical properties must be investigated more. I'm a firm believer RLS has something to gain in there somewhere.
if it gets worse in time i'm not sure what direction i'd have to take, no doubt meds. but i live in hope that there is something undiscovered out there.
due to my own positive experiment i'd heavily suggest cannibinoids are a good starting place to look, especially as it is getting recognised for parkinsons, alzheimers (amazingly) and other neurol dispositions. and no i'm not a junkie
But due to heavy laws in america (which filters out to the uk) i doubt we will see any investigation or clinical tests in the near future.
imo this is a very sad situation where prohibition of a natural product has made sufferers criminal for self-help and clinical investigation extremely difficult, if not impossible. Surely the medical properties must be investigated more. I'm a firm believer RLS has something to gain in there somewhere.
-
SquirmingSusan
- Posts: 3028
- Joined: Sun Nov 12, 2006 4:08 am
- Location: Minnesota
- Contact:
Aff, there's more happening with marijuana research than you would think. In the "Pain" book from the same neurological society that published Dr. B's book, they talk about a new pill that has two of the active components of marijuana, and is looking very promising for pain relief without the euphoria (what do they have against euphoria, anyway?).
Also, the legislature in my state just overwhelmingly passed an initial bill legalizing marijuana for medical purposes... Hopefully that will make it all the way through the process by the end of this legislative session.
That said, I've tried it recently and it's not working for me. But then I really haven't figured out just how to smoke the stuff.
Susan
Also, the legislature in my state just overwhelmingly passed an initial bill legalizing marijuana for medical purposes... Hopefully that will make it all the way through the process by the end of this legislative session.
That said, I've tried it recently and it's not working for me. But then I really haven't figured out just how to smoke the stuff.
Susan
Maybe I'm wrong, but currently it's against federal law to use it medicinally - doesn't that supercede any state law, past, present, or future ?
Also I know there has been a pill out for a while now, that they give to cancer patients to help them eat, but I believe I heard from somewhere, possibly Dr. B, that this pill has relatively little effect on RLS at all.
As for the whole thing against euphoria, maybe its just me.. But I wouldn't call weed euphoric, heh.. The main problem with MJ, like most other drugs, is that it impairs motor function. Ever seen that stupid ad in the movie theatres about the guys high at the drive in that run over the little girl on the bike ? That's basically what people are afraid of..
While nothing is inherently wrong with Euphoria itself, it kind of comes in the same basket, so to speak.. Personally I don't know why it is I can drive a car down the street on 80mg of Oxycodone like nothing was going on, but I even FEAR getting behind the wheel on as little as 40mg of hydrocodone. Funny stuff them medicines, huh
Also I know there has been a pill out for a while now, that they give to cancer patients to help them eat, but I believe I heard from somewhere, possibly Dr. B, that this pill has relatively little effect on RLS at all.
As for the whole thing against euphoria, maybe its just me.. But I wouldn't call weed euphoric, heh.. The main problem with MJ, like most other drugs, is that it impairs motor function. Ever seen that stupid ad in the movie theatres about the guys high at the drive in that run over the little girl on the bike ? That's basically what people are afraid of..
While nothing is inherently wrong with Euphoria itself, it kind of comes in the same basket, so to speak.. Personally I don't know why it is I can drive a car down the street on 80mg of Oxycodone like nothing was going on, but I even FEAR getting behind the wheel on as little as 40mg of hydrocodone. Funny stuff them medicines, huh
Okay, I'll ask...WHY Zach, are you taking 80 mgs or 40 mgs for that matter? You aren't still doing that are you?
I know you know that's not good, but maybe someone reading your post might think it's very permission giving. At least preface your posts with the old "don't try this at home" if you are going to throw in stuff like that.
Maybe I'm overreacting, but I can see some one who is more naive about these meds, panicking over a bad RLS night, check the boards, and think, well, I guess it's okay to take 80 mgs (not realizing you have to have a tolerance to narcotics to take that much) and they could very well OD.
Sorry to act like the post police, but I just want to remind you that some of the people who come to this board might not understand you are a self-proclaimed abuser who has a high tolerance...
just a thought...
I know you know that's not good, but maybe someone reading your post might think it's very permission giving. At least preface your posts with the old "don't try this at home" if you are going to throw in stuff like that.
Maybe I'm overreacting, but I can see some one who is more naive about these meds, panicking over a bad RLS night, check the boards, and think, well, I guess it's okay to take 80 mgs (not realizing you have to have a tolerance to narcotics to take that much) and they could very well OD.
Sorry to act like the post police, but I just want to remind you that some of the people who come to this board might not understand you are a self-proclaimed abuser who has a high tolerance...
just a thought...
I can see the merrit for that concern, however this time I'm sticking my quills out. This thread is not a discussion about how much medicine someone should be taking, much less of a specific kind. We're discussing alternatives and relating them to current treatments in some ways.
Someone having a bad night and seeking advice on what to do should not expect to get it from this thread. It would be irresponsible on their part in this case, and if they take my post and twist it to say "well this guy is still alive I'll be fine" it's their business - and it's NOT my fault. There is no need for a disclaimer on what is common sense, and let's be realistic - there are hundreds of other posts on here that could be "twisted" in the same way as mine.
When I go into a thread and someone is asking "what do I do? what do you take?" Or something along those lines, then I make it very clear that a dose I may mention is very high and that it is because I am tolerant. This is an entirely different topic though.
And no I do not take hydrocodone or oxycodone anymore. I've gone through hell trying to find alternatives to them, and am risking more possible seizures with the Tramadol I take now just to stay away from begging for them back, to a doctor. 80mg Oxy? I did that once in Maryland on my very last night because my friend and I spent the entire day walking around Washington D.C and I couldn't sit still because of the RLS ontop of the pain in my legs and knees. I was writhing in pain for almost a full hour after taking it. 40mg Hydrocodone? A little on the high end for an RLS patient - but I'm also a difficult case, and it is just within the suggested dosing range anyhow.
Sorry, but I think maybe you do need a chill pill.
Someone having a bad night and seeking advice on what to do should not expect to get it from this thread. It would be irresponsible on their part in this case, and if they take my post and twist it to say "well this guy is still alive I'll be fine" it's their business - and it's NOT my fault. There is no need for a disclaimer on what is common sense, and let's be realistic - there are hundreds of other posts on here that could be "twisted" in the same way as mine.
When I go into a thread and someone is asking "what do I do? what do you take?" Or something along those lines, then I make it very clear that a dose I may mention is very high and that it is because I am tolerant. This is an entirely different topic though.
And no I do not take hydrocodone or oxycodone anymore. I've gone through hell trying to find alternatives to them, and am risking more possible seizures with the Tramadol I take now just to stay away from begging for them back, to a doctor. 80mg Oxy? I did that once in Maryland on my very last night because my friend and I spent the entire day walking around Washington D.C and I couldn't sit still because of the RLS ontop of the pain in my legs and knees. I was writhing in pain for almost a full hour after taking it. 40mg Hydrocodone? A little on the high end for an RLS patient - but I'm also a difficult case, and it is just within the suggested dosing range anyhow.
Sorry, but I think maybe you do need a chill pill.
Hey Zach, I just wanted to say sorry for overreacting to your post. I just felt alarmed that you had taken so much at one time and I'm glad to hear you are not doing that anymore.
Frankly these pain meds we have to take do kind of scare me. I am a subtance abuse/family therapist (not currently practicing, because I have small children right now). My best friend's sister, who was a nurse, died of an accidental morphine overdose in the 90's, so my sensitivity meter is up a little more than most people.
I was just thinking about some of the older people on here who don't understand tolerance and the things about narcotics that make them unique, and the serious consequences that can happen with an accidental overdose. You are right, it would NOT be your fault, but yes, someone might think they could take that much...it could happen.
I've never had a problem with you, Zach, but some of us worry about you...(I've seen other people post to you too) and I know you saw my other post already. I just came back to say sorry I ruffled your feathers and wish you the best. I just worry about the older more naive people who come to this website...
As for your comments to my other post, well, I have my limits. and I'm outa here. Who needs it?
Best wishes to you.
Dana
Frankly these pain meds we have to take do kind of scare me. I am a subtance abuse/family therapist (not currently practicing, because I have small children right now). My best friend's sister, who was a nurse, died of an accidental morphine overdose in the 90's, so my sensitivity meter is up a little more than most people.
I was just thinking about some of the older people on here who don't understand tolerance and the things about narcotics that make them unique, and the serious consequences that can happen with an accidental overdose. You are right, it would NOT be your fault, but yes, someone might think they could take that much...it could happen.
I've never had a problem with you, Zach, but some of us worry about you...(I've seen other people post to you too) and I know you saw my other post already. I just came back to say sorry I ruffled your feathers and wish you the best. I just worry about the older more naive people who come to this website...
As for your comments to my other post, well, I have my limits. and I'm outa here. Who needs it?
Best wishes to you.
Dana
i wouldn't advocate MJ for daytime use but for the problem of sleeping with RLS it's a start.
however susan, i can understand how it may not work for some people and that's why i think it's 'in there somewhere' because as a raw plant i know it has different effects on people depending on probably a number of things. for the average user a 'chilled' feeling in the body is common (ala the MJ couch potato). however, there is also disorientation if you need to move so that needs to be sorted.
so chilled out legs would be a start
in the uk i think the drug laws are even more confused. they teeter one way then the other blaming certain drugs for a breakdown on society (and anything else) when the problems are much more involved.
cannabis is classed as a gateway drug but imo i would say that tobacco is the gateway drug as most MJ users who go on to harder drugs i would say started out smoking tobacco.
i'm glad to hear that research is happening, it just seems this plant does have something to offer the medical world if only the politicians stopped and gave it some thought.
however susan, i can understand how it may not work for some people and that's why i think it's 'in there somewhere' because as a raw plant i know it has different effects on people depending on probably a number of things. for the average user a 'chilled' feeling in the body is common (ala the MJ couch potato). however, there is also disorientation if you need to move so that needs to be sorted.
so chilled out legs would be a start
in the uk i think the drug laws are even more confused. they teeter one way then the other blaming certain drugs for a breakdown on society (and anything else) when the problems are much more involved.
cannabis is classed as a gateway drug but imo i would say that tobacco is the gateway drug as most MJ users who go on to harder drugs i would say started out smoking tobacco.
i'm glad to hear that research is happening, it just seems this plant does have something to offer the medical world if only the politicians stopped and gave it some thought.