Stopping Mirapex for a while

[ViewsAskew]

Oh, I am so sorry it's so hard. I wish I didn't understand, but I do. It will not get better for a minimum of 3 -4 days, could be a week, and could be a few weeks. It's really different for each of us. What is the same is that anyone who augments seems to have a drattedly hard time stopping this drug. Doesn't seem to be that way if you don't augment.

Hang in there.

[Bjorn]

My second night without Mirapex was even worse than the first. Absolutely no sleep at all. I subdued the crawlies and jerking by standing up nearly all night and listening to music. Incidentally, listening to music that has lyrics gives you something to focus on, if that helps anyone.

I'm giving up on stopping Mirapex for now. I took 0.125mg this morning which is a low dose for me and I was able to take a nap. When I see the neuro in a couple of weeks, I'm hoping for something stronger than Vicodin to let me take a break from Mirapex. Also, I don't like taking all that acetaminophen (Tylenol) that's in Vicodin.

I read Ann's plan on using a small dose of a DA along with a small opioid dose. Seems like a good way to do it.

Bjorn

[ViewsAskew]

Bjorn, I'm just guessing here, but I think you may need to stop it completely before you try the small dose with the opioid strategy. Our collective memories seem to recall that you need a month or two at minimum to reset your "dopamine clock."

I am not surprised that it was worse the second night. It really is a horrid process and NOONE tells you that it's a possibility I still think doctors and pharma underestimate augmentation rates in the first place and they don't really admit to what happens when augmentation happens. And, that just frosts me.

Good luck with the neuro. You might want to copy some posts from Dr Buchfurer's answers to patients - www.rlshelp.org - or even locate the book he wrote with a couple of other doctors. That will give you ammunition with the neuro and you might need it. It is NOT a forgone conclusion that your doctor will A) think that you need to stop Mirapex or B) that an opioid is what you should use if you should stop it.

Too bad they won't listen to us

[walkindafloors]

It's been 10 days since you posted, Bjorn, just wondering how it is going for you? It took me 3 weeks of nearly no sleep to stop after the augmentation but then had 2 weeks of NO RLS SYMPTOMS at all ~ day or night. I am sleeping most nights now and that is such a blessing.

[Pairodocs]

Bjorn
I begged my PC to take me off the 2 mg Requip last week because of augmentation and he switched me to Mirapex. But after reading your experiences on getting off of Mirapex, I'm a bit spooked there too. I hope you are doing better and the augmentation has abated.

I looked at all the prescription bottles at the head of my bed and realized that I don't know for sure what health problems I have are real and what were from the Requip. Given comments about perhaps needing to clear the system of Requip for a while I decided to just clean out everything I wasn't sure of, noratryptiline, gabapentin, Requip, Celebrex. I did keep up my blood pressure and hypothyroid medications, and OTC Loratadine, those were problems from before Requip.

So after 7 days on just the hydrocodone, I feel much better in general. I think I have a feel for what are real problems and what were phantom.
Here's the results:
- nausea and hot flashes - gone (They weren't menopause!)
- shingles neuralgia (PHN) still there, Noratryptiline worked before but does it make the rls worse? the 300 mg gabapentin was giving me such headaches...Maybe 150 mg and see if that might take care of the PHN without the headaches?
- shooting hand pains are gone, (so probably don't have carpel tunnel, YEAH)
- Still have ache in both hands, positional numbness in my arms and tingling in the neck - arthritis? maybe pheripheral neuropathy?
- shooting wandering pain around my head - gone, gabapentin headaches gone as well,
- constant sinus drainage that started with gabapentin is also gone.

Sharp wandering pain in hips and knees - gone, only lower back pain remaining. I've been in physical therapy for months for THR, DDD, patella femoral synd. but still lots of pain. So it's like the pt and exercises were doing their job, but the Requip was causing the excess pain making it look like I wasn't improving. My PT asked me to get re-evaluated two weeks ago by my OS. I think my PT and OS are beginning to think I am a hypochondriac.

Arthritis - aching still in upper and lower back, but now I know Celebrex was really helping and have gone back on it.

So now that the augmentation is gone for the morning. This weekend I did ok on one hydrocodone a day if I could delay it long enough so it was still working when I took the Ambien CR, but I was up and active most of the day. I have a desk job and I'm still antzy in the afternoon, have to go for numerous circuits around the building courtyard. The anticipation of perhaps the jumps starting again during the commute home is creating a lot of anxiety. I broke down and took a hydrocodone 30 minutes before getting on the bus yesterday at 4, which meant I had to take another one at 8 when the symptoms were really breaking through, which will make me short at the end of the prescription. I'm trying to decide what to do today about the commute home.

Problem is I'm not getting enough sleep even with the Ambien, it only works 4-5 nights a week. I have to be on the road by 5:30am and don't get home until 7pm, try go to bed by 9:30pm. Was still awake at midnight last night, I can hardly stay awake this afternoon. So I'll probably sit and stare at the Mirapex bottle again tonight, trying to decide whether to start or not.

[ViewsAskew]

That's a lot of stuff going on, Pair. Glad that some of it is gone now.

Per the Mirapex. . .just my opinion. It's never hard to stop if you don't augment. As long as you know to immediately stop it if your symptoms get worse, then you won't have to go through the ^%$& of stopping the drug.

[doety]

When you get the stew going, it's hard to tell what's working and what isn't. Your experiment sounds like a good one. Tell me, which of those was causing hot flashes, do you think? (That's one of the things plaguing me right now).
Also...about the Vicodin. I used it because of several hip replacements and I thought it was a wonderful pain reliever. But it seemed to cause me to have RLS. Do others have that happen? After the last operation, I'd take one or two before "bed," then spend the entire night walking the floor. So now I would only use it for pain during the day.
One more question: I've read a lot of comments about taking Ambien -- always thought that came under the category of things we shouldn't take, I'm not sure why (maybe the ads that warn you not to take it too long). I've never tried it. But is it true that it does help some people?
Hey all you guys. Thanks for trying and trying and trying. We're all watching you being brave (and desperate, I know) to try to see what might benefit the rest of us. Sure wish you some blessed rest.

[Sojourner]

Bjorn, Just wanted to wish you luck in your battle. Can relate to the swaying to the music things. Don't know if my ipod will be able to hold a charge much longer. Do know others here wish you well and pray that you will be successful in getting yourself back to a manageable postition.

[Bjorn]

Sorry I haven't posted here in a while. Well, I saw my neuro doc a couple of days ago and I explained about how I'd like to get off the Mirapex, or at least lower the dose. He suggested a low dose of clonazepam in conjunction with a lower dose of Mirapex.

So I took my 0.5mg clonazepam together with a 0.5mg Mirapex (half my usual Mirapex dose) and it seemed to work fine. But on the second night, it didn't work fine at all. I was loopy from the clonazepam, but the rls overpowered it and I was awake half the night jumping and jerking arms and legs. Couldn't stand it any more and took another dose of Mirapex. Also, I felt drugged most of the day.

I guess I don't have much faith in clonazepam. It seems like one of those drugs that has gotten associated with rls in doctors' minds, so they keep ordering it. So I'll have to go thru the routine and report back to him in a week that it's really not working and what else ya got?

I'm thinking of participating in an RLS study at Johns Hopkins, but one of the requirements is that you have to stop your rls medications for a week beforehand and I don't think I can do that.

Bjorn

[ViewsAskew]

Bjorn, yeah, this is so common. It's past annoying.

Clonazapam wouldn't help anyone who had augmented. It only helps a small percentage of people to begin with, and those are not usually tough cases (though some are). But, truly, the only thing that can get a person through the stopping of Mirapex or Requip after augmentation are time (during which you do not sleep) and opioids.

It saddens me that so many doctors just don't get this very basic fact.

[SquirmingSusan]

I guess I don't have much faith in clonazepam. It seems like one of those drugs that has gotten associated with rls in doctors' minds, so they keep ordering it. So I'll have to go thru the routine and report back to him in a week that it's really not working and what else ya got?

Bjorn

Oh Bjorn, you are in such a tough place! Trying to get doctors to believe that opioids are an appropriate treatment for RLS is a battle; and getting them to understand that they really are the only treatment that works while having augmentation from a DA is next to impossible. And the fact that the DEA is breathing down the necks of doctors who prescribe painkillers doesn't help. And then if you ask outright for painkillers they can get the idea that you are a drug seeker. GASP!!! No, you are seeking medication to treat a medical condition, the same way someone with high cholesterol might seek a statin drug to lower it.

Yes, it seems most doctors have it stuck in their little brains that clonazepam is some kind of magic bullet for RLS. If I had a nickel for every doc who told me that painkillers are not an appropriate treatment for RLS, and "why aren't you on clonazepam?" I'd be wealthy.

Fortunately I had some Vicodin from past surgeries and it worked. Then I got the sleep doc to prescribe some for me. Then I finally got into a pain clinic, where my doctor is totally clueless about how to treat RLS, but was willing to treat my pain with methadone. But for sleep issues he wanted to give me clonazepam, even though Ativan is the best med for me for sleep because it works and it wears off by morning.

Sorry for the rant and ramble. I woke up with my ears plugged solid and am waiting for the Sudafed to kick in.

I guess the point is to keep pushing for effective treatment of your RLS, and for the doctor to give you what it takes to get you off the Mirapex. You will get through this time! It won't last forever.

[KBear]

One more question: I've read a lot of comments about taking Ambien -- always thought that came under the category of things we shouldn't take, I'm not sure why (maybe the ads that warn you not to take it too long). I've never tried it. But is it true that it does help some people?

I use Ambien but I only have mild to moderate RLS about 7-10 days per month. It is not a good choice for daily RLS or for severe RLS symptoms. I like it because I don't "have to" take it at bedtime I can try to fall asleep first and lately I do fall asleep but tend to wake up between midnight and 3 AM with restless legs. I can take 5 mg of Ambien in the middle of the night and it helps me fall back to sleep but I'm still functional the next day. (this is a huge plus, I can't afford to have sleeping pill hangovers)

The reason that Ambien is not a good choice for daily RLS is that you can become dependent. I've been using this therapy for 4 months now and once I get through my bad time of the month I am able to sleep without it. So, no dependency so far, and my doc has been ok about prescribing 10 pills (5mg) per month.

I will continue this way for along as it works and my doctor doesn't object. In addition I work hard to eat right, exercise, and take vitamins and supplements to improve my overall health. I have noticed that whenever my general health takes a nose dive my RLS symptoms get much worse.

[stitch]

I don't know what I can add to all this but I have been through most of what everyone is talking about. I have had the RLS for most/all my life and now 71 so I lived in the days when they just looked at you and said bad habit, get over it. Anyway I started on clonazepam way back in 1985 and I take 2mg's at nite. But later I had to have more and took Paroldel and everything was great. Then I had back surgery and I was up for 10 hrs with my legs kicking. My pain dr gave me neurontin and everything worked again.

Long story short, I have had 5 back surgeries got put on requip 6mg's a day and the augmenation was terrible after working great with the neurontin and clonazepam. My regular dr cut it back to 3mg's and later I tried to cut it back more and I didn't sleep. My neuro dr told me to start on mirapex together with requip and then stop the requip. Since then I have had my 5th and most serious back surgery. I am taking mirapex 0.5mg's three times aday, neurontin 300mg's three times aday and clonazepam 2mg's at nite and I have not had any RLS since the last back surgery on June 1. I am also on oxycodone 5mg's three times a day.

But I think what really work's for me is the neurontin, but that could be because of all the back surgeries. Anyway I have not had any RLS and I hope this will last my life time. It's great but I know at some time it will pop up again. Good luck to you in finding what is right for you. Don't give up on the clonazepam, it really works for me anyway.

But as they say what works for me doesn't work for others so keep trying and good luck, Jeannie

[Bjorn]

Thanks for all the input. I really appreciate it.

I've been on the clonazepam 0.5mg with 0.5mg Mirapex for four nights now and, after a rough start, it's been okay. I'm going to try reducing the Mirapex to 0.25mg tonight, you know, just for kicks (ha ha) and see what happens.

I have noticed that the urge to go to sleep (when you really shouldn't go to sleep) has diminished with the lower dose. In the last couple of months I'd caught myself nodding off while waiting at the traffic light, which scared the heck out of me. Seems like I've been more alert the last few days, even with the little clonazepam haze in the background. I still want to get off the Mirapex though, at least for a while.

Bjorn

[doety]

That Mirapex is tricky stuff. When I was taking it (before it augmented, unfortunately) I do remember that sometimes the doc would tell me to take more (if one is good, ten will be great philosophy). He's a neurologist and doesn't understand RLS although he's very nice and tries to be helpful. But I found out in experimenting that more Mirapex is not better.
But these drug cocktails we devise...thank goodness for the boards so we don't wander into this alone. Sounds like things are somewhat better.