Mirapex ER

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jstep
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Joined: Wed Nov 23, 2011 2:23 pm

Re: Mirapex ER

Postby jstep » Fri Feb 03, 2012 2:37 pm

Thanks for that reminder. Drinking plenty of water is something all of us should remember with all the meds most of us take. But unfortunately one I sometimes neglect. I'll definitely try and do better with that again.

Don't know for sure if the Mirapex ER has been causing the headaches, but as of today I will only be taking it for another week.

I saw Dr. Becker yesterday and he totally changed our plan. Seems he didn't like the bump still evident on my head from the fall. Also, other factors considered, he now wants me to get off Mirapex and try Methadone. I told him this was really scary for me and we talked over our options. In the end, this is what I am going to try. He decreased my Mirapex ER back down from 0.75 that I had been taking to 0.375 mg for the next week. Then stop it. I took the first decreased dose yesterday along with Methadone. I started having really bad RLS while trying to watch tv with my husband so I got up and began working around the house. Meanwhile, I also took the first dose of Methadone. Within about an hour, my legs were beginning to feel some better and I was becoming really sleepy so I tried going to bed. I slept for about 30 minutes, then woke up abruptly and couldn't go back to sleep, so I took Ambien . I then slept about 3 hrs and have been up since about 330am, but even though I can't go back to sleep I so far don't have any RLS symptoms and its nearly 8am. I have Methadone I can take today if I need it, so we'll see how the day goes.

I'm really nervous about how all this will work for me, but all I can do is take each day as it comes and see what needs to be done. And rthom, I'll try and remember to drink plenty of water during all this change.

Another note to add:
My husband isn't doing too well right now and I'm nervous about attempting this change for myself because I want and need to be there completely for him. But I don't know what else to do because I really haven't been functioning very well because of the extreme drowsiness from Mirapex ER (and the headaches). I also know that Dr Becker only decided on this change after carefully reviewing everything and I'm trusting his judgment. From all the reading I've done (here on this site and elsewhere), I wasn't completely surprised. I'm also fully aware that the personal stress I'm experiencing doesn't help RLS but there's no getting away from it at this time. Except of course to put everyghing in the hands of God. I've spent most of the morning meditating in prayer and Christian music and I have a peace that I won't be alone in all of this. I've shed a lot of tears this morning and it has actually been a much needed release. I am of course hoping that he will come through this setback (I've seen him come through so many over the last 4 years). I'm really trying to take each day and see the blessings along with the fears. And there are blessings everyday.

I sincerely hope this post isn't received as whining or too negative because I just needed to write some of this down. I already feel as if some of you are friends even though I haven't personally met any of you. You have shared so much in these posts (mine and yours) that I feel I have the freedom to let all of you know where I am right now in my life.
I've deleted the part about my husband three times then rewrote it, so this time I'm leaving it. Writing this has also helped release some stress. So I hope I haven't added any stress to anyone at the expense of relieving some of my own. Thanks for letting me post.

Jamie

Polar Bear
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Re: Mirapex ER

Postby Polar Bear » Fri Feb 03, 2012 2:50 pm

Jstep, don't for one moment be concerned about sounding negative/whining etc. We have all posted here when we have been in many different frames of mind.
And I have also done that with a post, written it, deleted it, written again, deleted again.
You are sharing with us, the good and the not so good, I hope your husband comes through this setback as he has the others and know that we think of you.
Betty
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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

jstep
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Joined: Wed Nov 23, 2011 2:23 pm

Re: Mirapex ER

Postby jstep » Fri Feb 03, 2012 3:52 pm

Thank you Polar Bear for your support.

Jamie

ViewsAskew
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Re: Mirapex ER

Postby ViewsAskew » Fri Feb 03, 2012 10:58 pm

Oh, Jamie - sounds like you have your hands full.

I think you're doing the best thing to trust Dr Becker. He's extremely well respected and he'll do his best to help you. The methadone is a terribly scary step for many of us.

Let's hope this works and you can focus your attention where you need to.
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.

jstep
Posts: 45
Joined: Wed Nov 23, 2011 2:23 pm

Re: Mirapex ER

Postby jstep » Sat Feb 04, 2012 3:42 am

Thanks Ann,
This decision to stop the Mirapex and try Methadone is scary for me. But I have been very happy with Dr. Becker even though I have only had 2 appointments with him. He has been very thorough with his questions and listens to the answers intently. He is also very knowledgeable about RLS. And the fact that he is able to tell me how other RLS patients have done is very encouraging. I know that each one of us responds differently to different treatments, but I am really hoping this works. My fear is that if this doesn''t work , what's next? But Dr. Becker assures me there are other options, so I am trying to not borrow trouble by worrying about what if.

So glad I found this site. The advice, the information I've received from the books I've now read (recommended to me here), and the recommendation to consult with Dr. Becker has been a life saver.

Jamie

ViewsAskew
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Re: Mirapex ER

Postby ViewsAskew » Sat Feb 04, 2012 4:39 am

I worried "what if" when I made the leap to methadone. Since then I've had to try additional things. The good news is that there were still many things for me to try. The better news is that one of them actually worked for me and better than the methadone.

No worries that you're at the end. You'll still have options. I can't promise that, of course...but I'm pretty darn sure 8)
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.

jstep
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Joined: Wed Nov 23, 2011 2:23 pm

Re: Mirapex ER

Postby jstep » Sat Feb 04, 2012 11:05 am

Ann,

I have read your posts with a lot of interest over the last few weeks. Don't you alternate Methadone and Mirapex? Or am I thinkng of someone else? I read with interest everything that works for someone else, even though I know that what works for one does not always work for another.

Thank you again for your words of encouragement. As an update, I took 5mg of Methadone last night and went ahead and took the Ambien about an hour later. I slept about 6 hours. It is about 440Am here and I have been up since 4AM. RLS symptoms didn't wake me up and so far no problems. Sleeping 6 hours without waking feels really great. Of course I am still on Mirapex ER until next Thursday. I am hoping not to have to take any additional Methadone until then, but I will if needed to control any major symptoms. After spending so much of yesterday thinking about everything and trying to focus only on what is important and nothing else, I am in a much better frame of mind. I was able to watch a movie with my husband (it was a really good movie too) last night. We did have to pause it once so I could get up and walk around for awhile but I was able to finish the movie with him and just be. It may be a roller coaster ride for a few days/weeks but I am hopeful.

I've read so many posts on this board of so many who have had such difficult times with RLS and how they have come to manage their lives. It is like so many other chronic illnesses that people have learned to incorporate into their lives and still try to live life to the fullest.

My experience with Methadone (only 2 nights with 5mg) is that it initially made me very sleepy, then I found myself feeling wide awake. Not sure of course what it will be like when I have to take more to cover getting off Mirapex, but once off my hope is to maintain on a small dose only. But as I keep saying, only time will tell. Guess I am rambling, so I'll close. Thanks again for your encouragement.

Jamie

ViewsAskew
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Re: Mirapex ER

Postby ViewsAskew » Sat Feb 04, 2012 7:55 pm

Hi Jamie - yep, I alternate regular Mirapex with methadone. After many tries and combinations, this is the best alternative to date.

For what it's worth, methadone wires me, too. I think someone else - Zach maybe? - also has the same experience. If I'm not careful, I can be up until 6 or 7 AM before I sleep - then I sleep for 9 hours. Lyrica works better than any sleeping pill I've tried to make me sleepy and stay asleep. I had a sample; I've run out, unfortunately and my new doctor isn't so into cocktails as Dr B was.

How nice to hear you watched a movie and have a new perspective. I often fall off the wagon in terms of thinking and have to find new perspectives :-).
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.

jstep
Posts: 45
Joined: Wed Nov 23, 2011 2:23 pm

Re: Mirapex ER

Postby jstep » Sat Feb 04, 2012 11:44 pm

Ann,

Sounds like you found a workable solution with the every other night dosing. I hope it keeps working for you for a long time to come. I am sorry though that your new doctor doesn't want to give you Lyrica since you already know it will help you sleep.

I have to talk to myself regularly to keep my thoughts in perspective :D

I did speak a little soon this morning about having no symptoms of RLS. But they have been fairly manageable by keeping busy. I was thinking how ironic it was that Mirapex makes me so drowsy and Methadone wakes me up. We never know do we? Guess I'll see if it continues that way over the next several days. Thanks again for your help and all your valuable information.

Jamie

Chipmunk
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Re: Mirapex ER

Postby Chipmunk » Sun Feb 05, 2012 6:21 pm

I also noticed a headache with Mirapex.
Tracy

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the WED/RLS Foundation, and are not medical advice.

badnights
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Re: Mirapex ER

Postby badnights » Sun Feb 05, 2012 10:31 pm

Jamie, you can come here and rant whenever you like. We all need to do it, and most of us have done it. Life changes are hard! and scary. I am sick right now - I hope it's not pneumonia again! - so I'm not much use. But 'i wanted to say that, like Ann, I find all opioids wake me up. I simply don't sleep, unless I take a sleeping aid too. I went almost a year like that, before I finally was given a sleeping aid, and only then did I begin to recover some semblance of a normal life. So you might be like us, and need more hypnotic than you're currently using. But it's too soon to tell.

I think you made the right move, you can 't give proper support to your husband if you're useless from sleep deprivation (and headaches). I hope the transition goes smoothly for you.
Beth - Wishing you a restful sleep tonight
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jstep
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Re: Mirapex ER

Postby jstep » Mon Feb 06, 2012 1:01 am

Beth,

I'm so sorry to hear you are sick. I certainly hope it is not pneumonia either. Take extra care of yourself right now and get well. And thanks for your response. Reading about your response and Ann's to opiods kinda helps somehow verify how I'm feeling. Thanks Chipmunk for adding that you had headaches from Mirapex. I don't think many have that response, but I'm pretty positive it is from the Mirapex since I again have one tonight about an hour and half after taking my dose. Ironically, it seems to be from the Mirapex ER more than regular Mirapex for me.

The Methadone prescription says 3 times daily, but I originally was going to take it only at night until I had to take more to cover me when I am off Mirapex completely. But I was reading as much as possible about Methadone yesterday and read that it usually takes about a week for Methadone to have a more even coverage and then I remembered that Dr Becker had said the same thing. He told me and explained so much that day I had forgotten that. Anyway I decided to go ahead and take the 3 times daily dose until I was off Mirapex successfully, then would try to decrease the dose if possible. To make this story short, I felt much better today than I have since decreasing Mirapex. It could be that I am just having a better day but I am hopeful that maybe the Methadone will be a workable solution for me. But, it is of course still too early to know. I am still noticing that Methadone seems to wake me up even though I was able to take a short nap this morning. But the sleep I've had with it seems to be lighter than usual.

Get better Beth.

Jamie

dgarmaise
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Re: Mirapex ER

Postby dgarmaise » Fri Jul 04, 2014 6:14 pm

HI. It seems that the lowest dose of pramipexole ER is 0.375 mg. A few months ago, I switched from a regimen of 0.5 pramipexole regular plus 100 mg tramadol, all taken in the evening, to 0.75 mg pramipexole ER plus 100 mg tramadol. The original regimen and the new regimen were not controlling my legs, so I switched to 1.15 mg pramipexole ER and 100 mg tramadol. They worked well for several weeks. But I am also taken four different medicines for my diabetes, plus a host of other meds for various conditions. Cumulatively, they brought on a nausea attack which lasted a week, the time it took me to figure out that it as the tramadol that was leading the charge. I cut thre tramadol dose in half.The nausea went away. Fine, but my legs were not too thrilled. I assumed at first that I was mainly experiencing withdrawal. But I think that is over now. My legs don't bother me a whole lot, but just enough to keep me from sleeping. I would rather not have to increase the pramipeole from1.15 mg to 1.50 mg, but what choice do I have? At least with the regular prampiexole,one could cut pills in halves or even quarters to achieve small increments in the dosage. But I understand that it is not a good idea to mix the two forms of pramipexole. Why can't they make a dose of the ER smaller than 0.375 mg?
David

ViewsAskew
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Re: Mirapex ER

Postby ViewsAskew » Sat Jul 05, 2014 7:05 am

I haven't a clue....wonder why they make it that way?
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
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zombie

Postby doety » Wed Jul 09, 2014 12:54 am

Having a hard time with meds, usually sleep some in early morning, but not enough, then feel drugged the rest of the day.
Ann: I'm trying to rotate -- taking Methadone every five nights, and the other nights I take 1/2 mg clonazepam and two codeine (30/300) and if it's 1:30 a.m. and I'm sttill awake I might take 1/2 Trazedone, and a puff of poti). Was taking Vicodin, not much better. I've tried oxycotin -- for some reason, it makes everything worse.
If I take Mirapex, it makes me have a headache and feel nauseated. I remember years ago when I first took it, I just pushed through and that part went away.. I remember that wonderful two years when it worked so well -- but that's just a memory now. I never had trouble getting wide awake with Methadone -- but I did have the problem of falling asleep with no warning -- during a conversation, while driving, etc. Most of you know my journey so I won't go into it now. I have a wonderful young doc who's willing to give me most anything, but he really doesn't know WED. I do send him stuff.
Feels like my life is slipping away and that I can't participate when I"m like this.
I had a week a little while back that was wonderful. One of the reasons, it seems, was that I exercised hard every day. That gave me the best rest. But right now, I'm sitting here exhausted because I couldn't sleep last night and can't make myself exercise.
When you rotate Mirapex and Methadone, do you get the headaches with Mirapex? Do you just get used to it?
I am sick of this.


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