Experiences with Methadone

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
ViewsAskew
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Post by ViewsAskew »

Tim, the best one is the Mayo CLinic's algorithm (I think it's listed specifically) - you can find a link to it in the "sticky" post on managing RLS in the New to RLS section.

There have been at least two studies you can reference. Once was published in the 2005 Fall or Winter early (2006?) RLS Foundation's publication, Nightwalkers. The other can be found . . .somehwhere. I've found it searching the Internet for RLS and Methadone. If I get a chance, I'll see if I can find it.
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.

coaster
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Joined: Fri Jul 14, 2006 12:56 am
Location: Wisconsin

Post by coaster »

Ann -

I found that Mayo clinic link in the stickie, but all of the grahpics in the document are dead. I wonder if maybe someone from the RLS Foundation should contact Mayo and ask them to update their website?

I have the Nightwalkers back issues, so I'll look for the one you mentioned. Thanks....
~ Tim ~
hot topics & current events: The Bill Sebastian Forum

ViewsAskew
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Post by ViewsAskew »

They keep moving it at Mayo. . .

http://www.mayoclinicproceedings.com/pd ... 7crc%2Epdf


I hope this works for you. I'll update the link later.
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.

coaster
Posts: 58
Joined: Fri Jul 14, 2006 12:56 am
Location: Wisconsin

Post by coaster »

OK, thanks....that's got the missing diagrams. Going to the doc this afternoon. You know how they love flowcharts. :wink:
~ Tim ~
hot topics & current events: The Bill Sebastian Forum

doety
Posts: 486
Joined: Fri Sep 15, 2006 4:25 pm

My life on Methadone

Post by doety »

It's been almost three weeks since I started taking 5 mg. of Methadone at night. So far, so good. I knew I would sleep well at first because I was still taking Klonopine and Mirapex. I'm easing off the Mirapex and the last few nights have only taken 1/2 of those .125 tablets -- no problem. In a few days, I'll go cold turkey. I'm also exercizing at least an hour a day. (for the most part, my daytime RLS has gone; had a bout yesterday while in the car, but under usual circumstances, I'm okay). Just very excited at being able to sleep 8 hours a night -- will keep you posted!

ViewsAskew
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Post by ViewsAskew »

Fingers are crossed that all continues to go well.
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.

doety
Posts: 486
Joined: Fri Sep 15, 2006 4:25 pm

silly me

Post by doety »

oh, that seemed to easy. I was really surprised that it went so well. So, as soon as I wrote that post about slipping off Mirapex and taking Methadone, it all went to heck. Last night I couldn't sleep at all, paced, took three hot baths. This morning I still have some RLS, not as bad as last night. I remember when I first took Mirapex and had the headaches, etc. for a while and I thought this is a powerful little pill. Well, now I get to see just how powerful -- it doesn't want to give up! I will persevere....

ViewsAskew
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Post by ViewsAskew »

Stopping the Mirapex, no matter how small the dose is, is very, very, very hard.

You will have a week or two (or even three) or difficulty. You may need to up the Methadone to 10 mg or 7.5 to handle it. It seems to work best when you use the Methadone to replace the Mirapex - it's still hard, though.

Don't cave in!!!!! I caved three times. It never got easier. If I'd sweated it out the first time, I would have saved myself 6 months of Mirapex hell.
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.

doety
Posts: 486
Joined: Fri Sep 15, 2006 4:25 pm

kicking it

Post by doety »

Hi: My doc upped the methadone to 7.5 and now I'm sleeping great. So I'll go ahead in the next couple of days and try to get off Mirapex completely (yes, I know, I'll screw up my sleep again). I keep thinking of what you said about not caving. I'll just tell my husband to be prepared for a cranky week.

Something totally unrelated, but interesting, is the subject of caffeine. I wake up at 3:30, have a half coffee/half hot milk drink and then sleep better than ever. I've heard other people say they might grab a Diet Coke at night when they're having a spell. I think I've read on the boards that this may "seem" to work but really doesn't. Sure seems to work for me. Have you heard much about this?

BeanieLee
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Joined: Tue Sep 12, 2006 7:05 pm
Location: Chicago

Post by BeanieLee »

Well God bless ya if caffiene helps you. Caffiene absolutely drives my legs crazy. Caffiene and aclohol are my worst enemies. At least with alcohol it makes them feels better and then hurts when it wears off. With caffiene they just start to burn! At least for me. Good luck with stopping the mirapex doety. Hopefully the methadone will help with that.
The light of a good character surpasseth the light of the sun

Anonymous

Post by Anonymous »

On the Yahoo RLS board they took an informal poll a while back. Yep, it was divided. Some people found caffiene to help, some to hurt, and some it didn't affect in any way. So, if it works for you, go for it!

doety
Posts: 486
Joined: Fri Sep 15, 2006 4:25 pm

Bye Mirapex

Post by doety »

It took me the longest time to get up the nerve to drop the Mirapex entirely, but I did four nights ago. So, for three nights, I decorated the house for Christmas, watched all night TV, cleaned up -- it never felt bad at night but I was worthless the next day. the first night I got no sleep, the next night a little, the third night I stayed up until about 2:30 then crashed for 8 hours. Last night, I actually slept when I got into bed, got up in the middle of the night, but went back to sleep. Hope it's not too early to say I'm over the hump. AND, most important, I'm not having RLS during the day. It's pretty clear that Mirapex is what was giving me daytime RLS. Thanks for all the good advice. I'm now taking 7.5 of Methadone.

kat
Posts: 6
Joined: Tue Nov 28, 2006 10:13 am

I have been taking methadone for over 5 yrs .......

Post by kat »

Hi my name is Kathy
I havent posted in 2 yrs and I am so glad I did. I posted an update in the general topics I think. If you will read that you can understand what kindof hell Im in right now, all because of Dr.s that are so ignorant of this whole RLS thing. I can tell you the honest truth of how methadone made me fill like a normal person with nothing at all wrong and how now I feel like a junky - or as the Dr.s put it heroine addict. Sorry I am having a hard time right now with the way I am being treated but coming back here made me realize that I couldn't go back to beating my legs night and day. I would choose methadone anyday, but without the judgments and for sure with help.
HANG IN THERE, KATHY

doety
Posts: 486
Joined: Fri Sep 15, 2006 4:25 pm

Post by doety »

Hi Kathy: I looked at the general topic and couldn't find your posts. I'm assuming that what you mean is that Methadone really worked for you, but that doctors gave you trouble because it is used for drug addicts? I'm so sorry you had to go through that. We all have enough problems dealing with this wretched disorder without having that kind of thing happen. I'm not to the "I feel normal" stage yet...still fighting off the leftover effects of Mirapex. I'm also trying not to take too much methadone because it means I can't function the next day. I'm trying to stay at 5 mg. So, of course, I'm roaming around much of the night.
Are you still able to take Methadone...have you found a good doctor? I know it makes all the difference in the world.

kat
Posts: 6
Joined: Tue Nov 28, 2006 10:13 am

Post by kat »

Yes, I am still taking methadone. I have been being prescribed 90mg a day 3 @3x a day, but I usually just take the first and last 30 unless I have a really hard time due to stress or other things that set my legs off. I have a trip planned to go back to Nm tomarrow but the roads are closed. I have to be able to go before Sat. at the latest or withdrawls will probable kill me. I have been telling Dr.s for years that something was wrong with my legs then about 5 yrs ago I heard of Dr. Ondo and started crying. I saw him and he confirmed RLS which I had only heard that name 2 months before that. I am going to reestablish being his patient again next month. I think I am on such a high dose because all these Dr.s I was telling me where putting me on all the meds that make it worse. Plus you do get immune to the methadone. I don't feel it at all its like asprin, but my body sure knows. I really need to find a doctor close. Its hard when I have 3 children and have to travel. The trip to Houston (if I can afford it) will be worth it. One day I will be so glad to go to a Dr. and they do know something about RLS. Even when they say they do they don't. I have had a few tell me that they have never heard of methadone being used. But when one ER Dr. said I needed to change my lifestyle I wanted to loose it. Im very scared right now and after going and calling at least 30 Dr.s last month I cant mentally handle this right now. I hope you have a good Dr. I honestly would like it to get the information about how Ive been treated to some Dr.s and show them theyre wrong. But I know it will happen.
Thank you for posting. I am having a hard time finding where exactly my posts are and the time it says I am here is really off. You can tell I havent been here in a long time.
Have a good day, Kathy
HANG IN THERE, KATHY

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