I've sent PMs to Anne, and thought I should go public so others can read about my experience. Same old story -- the Mirapex worked well until it didn't, then I started having RLS off and on all day and still not sleeping at night. Also taking Klonopine. Last night I took my first dose of Methadone (5 mg) last night at 8, while also taking Klonopine and some Mirapex (which I'm cutting back on). I went to sleep at 2 and woke up at 10. I believe that's 8 hours!
The doc said he'd raise it to 10 mg if this didn't work. Ann, I think you said you took it at 8 and went to bed at 12? I wonder if I should take it at 6? You may be trying to match your circadian rhythms. I've got all these breakfast meetings and love the morning so much, I would hate to do that. I'm sure there's lots of experimenting going on.
The doc said it would take a week to get "steady" whatever that means. I want to keep in mind that you said to take it at the same time each night. By the way, does it make you feel sleepy?
I've never been able to be a real member of this community (and it is a community, obviously) because whenever I sit down at the computer I feel like I should use the little time I've got to sit still on my work. I'm looking forward to having some time to be here. I have always enjoyed the insights and support I can find here.
More on Methadone
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ViewsAskew
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Hey, I was just going through unanswered posts and saw this. How is it going? Any news? I hope, truly, truly hope that all is working.
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: Thanks for asking! I've been off Mirapex for about a month now. Sure enough, I don't have RLS during the day anymore (surprise). When I do start to feel a little antsy, I do some task or go for a walk and I'm fine. Now it's where it should be -- at night 
What I'm taking now is 7.5 of methadone and the same of Klonopine. I'm definitely getting more sleep, but still have episodes of RLS .I did have a hard time last week, didn't sleep well for four nights, and finally took two of the 5 mg Methadone pills -- it was wonderful. The doctor didn't authorize it although I think he'd be fine with it -- can you give me a sense of how much is too much? And when you do increase it looking for the perfect dosage, how big a jump is it reasonable to make?
An aside: A month or so ago I got diagnosed with Diabetes 2 -- was having a hard time with food selection/prep. Decided to give myself a treat and went to Rancho La Puerta, a spa in Tecate right across the border from San Diego, where they have all organic, vegetarian food that they grow on the property. The whole time I was there, my blood sugar was steady and low and I slept well. Lots of lessons from it -- except that at home I exercise about an hour a day, there I probably did three hours, but who the heck can do that normally? Anyway, the founder gave a speech (someone told me about it; I wasn't there) and talked about drugs and said RLS is a perfect example of the pharmaceutical industry making up a disorder so they could sell drugs. I was furious! I wrote quite a long e-mail to her when I got back. Although I loved the place, I can't believe people are still doing this.
So: making progress and SO HAPPY to be off the Mirapex, never knowing when it would cause an "incident" that would make me leave a meal, etc. I'm actually starting to go to movies, concerts, etc. and not be afraid I'll have to go stand in the back. Thank you so much for your support -- I can't tell you how many times I had your thought in my head: "Don't give in. don't give in." It was worth it.
What I'm taking now is 7.5 of methadone and the same of Klonopine. I'm definitely getting more sleep, but still have episodes of RLS .I did have a hard time last week, didn't sleep well for four nights, and finally took two of the 5 mg Methadone pills -- it was wonderful. The doctor didn't authorize it although I think he'd be fine with it -- can you give me a sense of how much is too much? And when you do increase it looking for the perfect dosage, how big a jump is it reasonable to make?
An aside: A month or so ago I got diagnosed with Diabetes 2 -- was having a hard time with food selection/prep. Decided to give myself a treat and went to Rancho La Puerta, a spa in Tecate right across the border from San Diego, where they have all organic, vegetarian food that they grow on the property. The whole time I was there, my blood sugar was steady and low and I slept well. Lots of lessons from it -- except that at home I exercise about an hour a day, there I probably did three hours, but who the heck can do that normally? Anyway, the founder gave a speech (someone told me about it; I wasn't there) and talked about drugs and said RLS is a perfect example of the pharmaceutical industry making up a disorder so they could sell drugs. I was furious! I wrote quite a long e-mail to her when I got back. Although I loved the place, I can't believe people are still doing this.
So: making progress and SO HAPPY to be off the Mirapex, never knowing when it would cause an "incident" that would make me leave a meal, etc. I'm actually starting to go to movies, concerts, etc. and not be afraid I'll have to go stand in the back. Thank you so much for your support -- I can't tell you how many times I had your thought in my head: "Don't give in. don't give in." It was worth it.
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ViewsAskew
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I am so glad to hear all is well. Or, as well as things can be with RLS.
Per the dose, the average dose of Methadone is about 15 mg. I thought I could keep my dose to 10, then 12.5, then 13.75. According to a talk with a doc when I was at the RLS conference, if I'd just moved it to 15 in the first place (which is NOT considered a big jump), I'd saved myself months of some breakthrough. Once at 15, I haven't budged for over a year.
For those of us with severe augmentation on the DAs, this is manna to hear - that we can live pretty normal lives again, go to concerts, etc. It took awhile, but I try things now that I wouldn't ever have been able to do while on the Mirapex.
Yes, these "disease mongerer" purporters really get my panties in a twist! Have you seen the thread on Rosie?
Have a great holiday!
Per the dose, the average dose of Methadone is about 15 mg. I thought I could keep my dose to 10, then 12.5, then 13.75. According to a talk with a doc when I was at the RLS conference, if I'd just moved it to 15 in the first place (which is NOT considered a big jump), I'd saved myself months of some breakthrough. Once at 15, I haven't budged for over a year.
For those of us with severe augmentation on the DAs, this is manna to hear - that we can live pretty normal lives again, go to concerts, etc. It took awhile, but I try things now that I wouldn't ever have been able to do while on the Mirapex.
Yes, these "disease mongerer" purporters really get my panties in a twist! Have you seen the thread on Rosie?
Have a great holiday!
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.
Rosie
Hi Anne: I never watch that show, so I didn't see it -- but did find the posting and immediately went to the website for them and wrote a long letter! Just so more people can see it, you might think about making a special posting so they'll have some feedback. Whoa. It makes me so mad.
Thanks for more info on Methodone; I won't be so afraid to try 10 mg see how it works tonight.
I read posts from other people and know how very lucky and blessed I am to have a doctor who's open and not judgmental. At least I don't have to go through that part of it.
Thanks for more info on Methodone; I won't be so afraid to try 10 mg see how it works tonight.
I read posts from other people and know how very lucky and blessed I am to have a doctor who's open and not judgmental. At least I don't have to go through that part of it.
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ViewsAskew
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Yeah, I thought the same. Then my insurance changed and my doc isn't on it!!!!! My decision is to still see him and self-pay, but what a ^%$ mess.
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.
I'm sorry. That's something none of us should have to go through. There will be a special place in --let's call it heck so we won't get censored -- for people who don't "believe" in RLS and we all know what the penalty will be. That will include all these doctors who don't educate themselves. Guess it's good that Methadone is pretty cheap, although I know the doctor's visits aren't.
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ViewsAskew
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I wish! It is an HMO - I have to stay in their list or be referred to someone in network. My doc's office is too small to be included - he said he was willing to join, but the HMO won't take him. They only take large groups.
Funny, I wrote this in another thread about this, that it actually comes out the LEAST expensive for me to pay for it. The negotiated rate with the insurance is higher than what he charges for a visit, PLUS the copay. So, although it's more to me, it's cheaper to the system as a whole. Wonder if that might be part of the medical costs problems. . .
Funny, I wrote this in another thread about this, that it actually comes out the LEAST expensive for me to pay for it. The negotiated rate with the insurance is higher than what he charges for a visit, PLUS the copay. So, although it's more to me, it's cheaper to the system as a whole. Wonder if that might be part of the medical costs problems. . .
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.
Another question about Methadone
I've been having some strange things happen -- don't have anything to blame it on except the Methadone -- maybe someone can help.
I've been on 10 mg. per night for about a month. My tongue has started hurting/burning. At first I thought I ate something too hot, but usually that goes away pretty fast. The other thing I've noticed is that I rarely get hungry and even if I am a little, when I eat, the food doesn't taste good. Sweets, of course, taste good, but I'm diabetic and shouldn't be eating them. Does anyone else find these symptoms with Methadone?
I've been on 10 mg. per night for about a month. My tongue has started hurting/burning. At first I thought I ate something too hot, but usually that goes away pretty fast. The other thing I've noticed is that I rarely get hungry and even if I am a little, when I eat, the food doesn't taste good. Sweets, of course, taste good, but I'm diabetic and shouldn't be eating them. Does anyone else find these symptoms with Methadone?
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ViewsAskew
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Not me - it would be nice for food to taste bad, but like you, I'd really rather ditch the sweets! No tongue issues either. . . have you done any web searches yet? Oh, Aiken or someone had a tongue thing recently I think. . .hmmm, shouldn't try to think at midnight. . . .
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.
If we can't think at midnight, when should we think???? I think we have to reserve all possible times, since I never know when my good times and bad times are anymore. Such a puzzle.
Even with the methadone, I get up at night --usually have a huge wave of RLS about twice a night. I do the usual cleaning, take out the garbage, walk around and "check on things," and it goes away in about 45 minutes. I feel like if I take enough medication to keep me asleep (if that's possible) I will keel over during the day. I already sometimes go to sleep at my computer and once, standing up.
Even with the methadone, I get up at night --usually have a huge wave of RLS about twice a night. I do the usual cleaning, take out the garbage, walk around and "check on things," and it goes away in about 45 minutes. I feel like if I take enough medication to keep me asleep (if that's possible) I will keel over during the day. I already sometimes go to sleep at my computer and once, standing up.
mine is the old story of my doc not wanting to prescribe narcotics if she can help it. at first she gave me vicodin -which worked like a charm - and did mention methadone as a future possibility. i have taken lyrica - it turned me into someone else with poor coordination. then i tried Requip, which caused rebound and then didn't work at all. i have been taking Neurotin - 900mg at bedtime - and it works well, however i don't think i can tolerate how it effects me during the day. my head feels like a water balloon, my vision is strange, and i just don't feel well in general.tried to make due with just 300mg last night but had to get up and take more due to pain and restless legs. plus i am gaining weight which is something i really don't need to do.
soooooooooo, now what? i have not tried Mirapex yet. i already have a heart valve problem and don't want to make it worse, of course. i just feel frustrated! and wish i could convince my doc that it is ok to prescribe methadone or some other narcotic!
i guess i am just sounding off. just seems hopeless to me. catsup
soooooooooo, now what? i have not tried Mirapex yet. i already have a heart valve problem and don't want to make it worse, of course. i just feel frustrated! and wish i could convince my doc that it is ok to prescribe methadone or some other narcotic!
i guess i am just sounding off. just seems hopeless to me. catsup
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SquirmingSusan
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Ann, does the 15 mg. of methadone give you 24 hour relief from the RLS - I know it has a long half life, but also understand that the pain relieving effects don't last nearly that long.
I'm finally getting into the local pain clinic in a couple weeks and they like to use methadone. I'm thinking it might work better than the Vicodin because it lasts longer in the system. What do you think?
Susan
I'm finally getting into the local pain clinic in a couple weeks and they like to use methadone. I'm thinking it might work better than the Vicodin because it lasts longer in the system. What do you think?
Susan