Take Drugs...and then what do you do?

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

Take Drugs...and then what do you do?

Post by doety »

I have a feeling that I have plenty of drugs in my system by the time I try to sleep. BUT, at least partly, maybe mostly, because I'm still taking Mirapex, I can't quite get there. Legs still moving, moving. Even when I try all the "attending" rituals, I can't always leave that ghost of WED behind. Last night I did some cleaning on my hands and knees (that straightens my spine and lessens any back pain that could cause it), I did some crossword puzzles, I took three hot baths (my skin! my skin!), etc. etc. etc.

This morning when I got up, I was creaking, thinking ohhhh I'm getting old. However. I put on some rockin' music and all the pain and bad thoughts went away and I was dancing in the kitchen. My mental state has everything to do with what's going on.

I'd like to hear what you do, to get to a place where you can sleep (after you've taken the drugs)....or maybe nobody else has problems with that?

ViewsAskew
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Location: Los Angeles

Re: Take Drugs...and then what do you do?

Post by ViewsAskew »

I am very lucky - the drugs work (as long as I take them on time) about 85% of the time. When they don't, I usually just try to stay awake doing piddling stuff - water plants, clean, read (if possible), etc.

I've gone through periods where the drugs I've been trying don't work, but fortunately, pramipexole and methadone consistently work as long as I don't overdo either. I am starting to get a bit tolerant to the methadone dose now that I'm using only that. So, I'm seeing how I can use just a bit of pramipexole once ever 2 to 3 days to see if that can keep the tolerance in check. The only time I have consistent problems is when I have augmentation. For me, that's fast. I wonder if it's faster than we realize for a lot of us, and this is what keeps us from getting the relief we need?
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.

jakesmom
Posts: 353
Joined: Sat Feb 09, 2013 11:01 am

Re: Take Drugs...and then what do you do?

Post by jakesmom »

I play games on my phone or crochet. If I can get my mind distracted, sometimes that helps me not focus on pain. If all else fails, the dog gets a few extra walks.

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

Re: Take Drugs...and then what do you do?

Post by doety »

I think I've been in denial for quite a while. I've been taking a .25 Mirapex, then a half one. I've been afraid to use more -- if I augment on this, more will make it worse. And I've added other things, just experimenting (after going to drugs.com and seeing how they interact). My doc and I talked this morning about going to Methadone to help me get off the Mirapex. He has to get permission to prescribe it and will call me next week. I know at some point I'll use Mirapex again, unless something new is invented. And I don't want to rely on Methadone by itself. Wonder what I could mix it with?

debbluebird
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Joined: Mon May 21, 2012 3:27 pm

Re: Take Drugs...and then what do you do?

Post by debbluebird »

I take Gabapentin with the Methadone and Mirapex. Some people can't take it and take Lyrica. I can't take Lyrica. Either one, Gabapentin/Lyrica, you have to start slowly and build up. You also have to go off slowly, can't just stop either one. I think Mirapex is the only one that I stop cold turkey. I have found that I can't wean off on that one. Everyone is different. Different drugs work differently for people. Methadone is a good one to stop Mirapex with. I don't get that feeling that I'm taking a pain pill. All I know is that it works.
When I'm getting a flair up I have to move, get up, walk or take a hot bath.

ViewsAskew
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Re: Take Drugs...and then what do you do?

Post by ViewsAskew »

In some ways, alternating them - pramipexole with methadone, every other day - worked exceptionally well. I never augmented, I had NO tolerance to the methadone, and the worst side effects of each were avoided. I had fewer breathing issues (the methadone does create asthma for me when I use it daily). Eventually, the emotional side effects from pramipexole changed, though, and I just couldn't tolerate it anymore - at least not full strength.

I see slight augmentation in less than a week. I simply can't take it regularly without paying a steep price. My guess is that I'm not the only one.

The problem is that for many of us, we don't have a lot of options. I don't think I've ever seen anyone who's had all four classes of meds work. Seems it's much more specific. In fact, that would be a great gene study - to match the gene to the therapy that works and see if there is a correlation.

So, when it's limited to a few things and they ALL cause problems, what do you do? I think many of us are in groundbreaking territory, but more and more people will be joining us.

Doety, I'm trying to figure out what to mix methadone with, too. Right now, I'm opting for 1/2 strength pramipexole part of the time. I don't know how often or if it will do anything. But, seems I can take a half dose (.125 mg) and not have it cause the great depression that .25 causes. Every other day? Two days splitting it, one day off? Dr B said that trying the patch part time, methadone part time wouldn't work. I might be willing to try anyway - say three days on the patch, then 2 days on methadone?

I tried using gabapentil encarbil, but it didn't resolve symptoms for me at 1200 mg, and I was reluctant to try 1800 given that I have a client. I'd not be able to work at 1800 mg for two weeks to see if the tiredness wore off. I've tried all the others in that class - Lyrica, etc - and they don't work, either, so that is out. Benzo's don't help, so they are out. Other than trying clonidine or some of the lesser used meds, not really many other options, are there?
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

Re: Take Drugs...and then what do you do?

Post by doety »

Gabapentin makes me dizzy and nauseus. Lyrica....yikes! After I took one, I saw a bloody knife floating in front of me. Cross that one off.

Ann -- would you mind telling exactly the dosage when rotating Methadone and Mirapex? We've been on the same page so many times, I think I'll try your formula first. My doc is very interested in that. He has several RLS patients, but only one other like me. I'm special!!

Okay. I don't like being special. Don't seem to have a choice!

sniel2000@yahoo.com
Posts: 10
Joined: Tue May 08, 2012 10:58 pm

Re: Take Drugs...and then what do you do?

Post by sniel2000@yahoo.com »

I was taking .25 every nite at the same time and every nite my RLS started at that time. It got worse and worse, the sensations became extreme and I felt hopeless as to what to do. No doctor can give an answer. So I decided to cold turkey...it wasn't fun but now, after the misery of getting off the meds, my rls has almost disappeared. No matter what, even if it comes back, I don't think it will ever be as bad as it was ON the medication. The only thing that has changed is that I have been very tired for over three months. I've been checked out and all is well. Could it be something to do with getting off the ropinerole after many years...has my brain been tampered with? I'm getting better, but slowly. I never fell asleep at odd times while I was taking the Ropinerole but can now fall asleep if sit or lay down, in an instant. I can sleep a short time then awaken and eventually feel better. This was very bad in the beginning...now it might happen once per day should I sit down and watch TV. But at least my legs are quiet. I have had this since childhood...cannot believe I can actually sit and read a book or watch TV.

I hope that it never returns. If you are having difficulty with severe sensations in your legs...I suggest trying to get off the medication.

Sandy

rthom
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Joined: Sat Dec 31, 2011 3:03 am

Re: Take Drugs...and then what do you do?

Post by rthom »

Augmentation i horible isn't it? I'm glad you are feeling much better! :-)

ViewsAskew
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Location: Los Angeles

Re: Take Drugs...and then what do you do?

Post by ViewsAskew »

sniel2000@yahoo.com wrote:I was taking .25 every nite at the same time and every nite my RLS started at that time. It got worse and worse, the sensations became extreme and I felt hopeless as to what to do. No doctor can give an answer. So I decided to cold turkey...it wasn't fun but now, after the misery of getting off the meds, my rls has almost disappeared. No matter what, even if it comes back, I don't think it will ever be as bad as it was ON the medication. The only thing that has changed is that I have been very tired for over three months. I've been checked out and all is well. Could it be something to do with getting off the ropinerole after many years...has my brain been tampered with? I'm getting better, but slowly. I never fell asleep at odd times while I was taking the Ropinerole but can now fall asleep if sit or lay down, in an instant. I can sleep a short time then awaken and eventually feel better. This was very bad in the beginning...now it might happen once per day should I sit down and watch TV. But at least my legs are quiet. I have had this since childhood...cannot believe I can actually sit and read a book or watch TV.

I hope that it never returns. If you are having difficulty with severe sensations in your legs...I suggest trying to get off the medication.

Sandy


First, so glad to hear it's better.

Augmentation(medications makes the symptoms worse) is one of the worst things that can happen! Stopping cold turkey when you have it can be miserable - congrats on getting through it. Many doctors don't understand it, so people like you suffer. So glad to hear it's better. If it does get worse, ask for a serum ferritin test. Anyone with low serum ferritin shouldn't take ropinerole or pramipexole. And, increasing ferritin or iron in the blood can reduce WED a lot.
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.

badnights
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Location: Northwest Territories, Canada

Re: Take Drugs...and then what do you do?

Post by badnights »

sniel2000, how long were you on ropinirole?
Now that you've stopped and finished with the withdrawal (huge congratulations on getting through that), are your RLS/WED symptoms better or worse than when you first started meds??
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

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