Quitting Mirapex - Tell me about it ----GOOD NEWS

[doety]

I don't get on the boards very often -- I'm a freelance writer and feel that any time when I don't have RLS, I should be working. But I saw this today and wanted to say how glad I am for you. I went through the Mirapex withdrawal using Methadone, which I'm still using. I think I used Mirapex for two years and thought I'd found the miracle. Then, it happened and we all know about that. These days I sleep, but in two hour spurts. Every two hours I get up, do some cleaning or something, then when the RLS "wave" passes, I get back in bed and I'm fine.

I was just talking to a homeopathic doc about some other things and told her about RLS and this is what she said:
"You do know that sleep deprivation is a form of torture."
Whoa. I knew that, but had never thought about it that way. We know it can be torture, but it's actually a powerful method and can drive people nuts. The hard part is that we're somehow doing it to ourselves and sometimes I want to get a stick and hit myself (I don't mean we cause it, but that it somehow comes from our genes, etc.)

Please keep us up on how you're doing!

[milliga]

Hi, I am a 50 yr old woman who has had RLS & secondarily PLM for about 15 years. For about 10 years I was on ever- increasing dose of clonazapam. I had no trouble going to sleep but woke up at 3 am going nuts.

I wa next on Lorazapam and Levocarb but I found my symptoms moving earlier in the evening and problems sleeping.

I next went to Mirapex and Zopliclone .5mg. Now I am always eating and have gained 50lbs in the last year. I have insomnia at least 3 or 4 nights a week Until 2 or 3 am, can't sit and watch a movie in the evening. In bed I just thrash and am getting more and more panicked about not sleeping so I am afraid of a self fulfilling prophesy.

The last year my hips have been getting quite sore all day and there are electrical currents now running through my hips periodically and down my legs (they feel like the physio electricity they run through you vs the RLS "there's something crawling through my bone marrow" And starting last week I got the same thing in my knee when I kneel on it.
Are these RLS symptoms?

I don't think I can live on mirapex any longer. I was so tired and frustrated last night I took another 50 mg Mirapex at 2am.

I can't see the Specialist until April so I'm going to ask my GP to change my meds - But to what? Requip? Does it have the same side effects? I hate being 215 lbs as WELL as awake 24/7

I would be grateful for any and all suggestions

Anne

[SquirmingSusan]

Anne, welcome to the forum. I don't know about the electrical sensations, but your other symptoms sound like you're experiencing augmentation. Augmentation is unique to the dopamine agonists like Levodopa, Mirapex and Requip. It's when the medication itself is causing worsening of symptoms. If you search this forum you'll see that we discuss it a lot around here.

With augmentation it's best to get off the offending medication as soon as possible. This can cause extreme worsening for a time and make you feel like you're in hell on earth, so it's usually necessary to take some opioids, like Vicodin or Percocet, to get through the rough patch. Once things settle down, you can go back to trying other classes of medication.

Once you've augmented on 2 dopamine agonists, it's recommended that you not take that class of meds anymore. So Requip probably isn't the best idea for you. But there are other medications that can help, like the anticonvulsants or the opioids.

In the "New to RLS" section of the message board there is a sticky post at the top that has all kinds of good information about treating RLS. Please read through that.

Can you call your specialist and tell him/her that you're having trouble with the Mirapex, and would like to get off of it and try something else?

[doety]

welcome, Anne. Sorry about your problems. I think you're going to hear from lots of people who have been through the same thing. Mirapex can be wonderful -- and it can make you nuts. Some people have hallucinations on them, and many of us gained weight. And lots of us have experienced augmentation, and then the problem is trying to withdraw from it and not lose your mind. I took Methadone -- suggested to me by my doc -- and although at first it sounded scary, it did the trick. I got off Mirapex slowly and now just use Methadone. I still get up, haven't figured out how to make everything right, but I'm not having the augmentation I did have.
Good luck, stay tuned, tell us how you're getting along and if you got help from your doc.

[Neco]

You definitely sound like you are augmenting, and it still troubles me how little doctors know about augmentation, or how they completely miss the warning signs..

Get off the mirapex immediately.. I think the only two options you should consider are anticonvulsants and opiates.

Anticonvulsants are Neurontin (gabapentin) and Lyrica. Lyrica is like a cousin to Neurontin and sometimes it works better for people who Neurontin does very little for. I tried Neurontin for a week, and within that time I was on the phone begging my doctor to put me back on Tramadol (a mild opiate-like medication, but not a controlled substance).

If those don't work for you, your only choice is likely going to be to take opiates, or to suffer unmedicated.. Which no one should have to do. Opiates are also recommended during the time with which you stop mirapex, and for a a while afterwards. When you stop Requip and Mirapex your RLS will get even more worse. I know that sounds scary, but it is not uncommon and several people on the forums have had to go through that. Another member, Ann, I believe was put on methadone immediately after stopping and I think she still wasn't totally comfortable at all and believes she suffered permanent augmentation from the meds. She seems to be doing OK on methadone right now though.

Most people who take opiates for RLS, usually start out with something like Codeine (Tylenol #3 w/codeine) or Hydrocodone (Vicodin). Ultram (tramadol) is also a mild to moderate strength opiate that has seen some success in treating RLS also. Although there is a seizure risk when taking other medications. I had one because of an interaction and then pushed my doctor hard to switch me to methadone.. At the time I had to produce research from a database of his choice, showing methadone has been used to treat RLS; but now Methadone is listed as a therapeutic medication in the Mayo Clinic Algorithm for diagnosing and treating RLS. Methadone has become more and more popular a subject around the forums lately, as more of us have been put into situations that left us little or no other choice (I am a recovering addict resulting from my earlier RLS treatments) however it is a great medication for those who truly need it. It can last 12 - 24 hours in most patients and at very low doses.

However we always recommend it as a last resort. It has a bad social stigma and several members here have had bad experiences with doctors for even bringing the drug up at a meeting. You should read all the sticky threads in the New to RLS section that you can, and also follow this link to the Mayo Clinic Algorithm.

Web page format - http://www.mayoclinicproceedings.com/Ab ... tract&UID=

PDF (Adobe Reader) format - http://www.mayoclinicproceedings.com/Ar ... =1698&UID=

Print this out and read it thuroughly, for you own sake! See your GP as soon as possible, tell them its urgent if you want, cause you really won't be lying if this medication is destroying your life and ability to function like a human being. When you do get in the see them, explain about wanting to change your meds. Put a strong emphasis on what you have already tried and the side effects and continuing dose increases and tell them you desperately want to try something else so you can sleep and function properly again... DON'T let them leave the room until they read over the parts about augmentation, and how the medication should no longer been given to you (it sounds like you've been on Mirapex and Levodopa, so that's two failed DA's).

If it helps smooth things over, ask them about tramadol or something, and remind them its not a controlled substance (unless you live in Kentucky) and only requires a prescription... No guarantee it will work, but if they are unwilling to prescribe anything else it couldn't hurt to try.

[milliga]

Thanks for the input. I am going to the doctor tomorrow. One thing i didn't mention was that for the last 8 months i've been on Zopiclone to help me to go to sleep. I looked it up on the web and found out I should have only taken it for 5-7 DAYS!!!! Why did my doctor keep prescribing it and why didn't the pharmacist say something. It may be the cause of some of my problems

Someone at work also suggested the dreaded onset of menopause may have caused weight gain, insomnia, anxiety etc.

Now I'm really confused. I think I will get onto another sleeping pill and get tested for hormone stuff before coming off Mirapex. I am taking it around 7pm rather than waiting for bedtime and that seems to be working altho I am still having trouble sleeping.

Does anyone have that "electric buzz" in hips or legs that I get sometimes. It only just started a couple of months ago. Or a real soreness in their hips? I am wondering if that is not my RLS getting worse but something in addition javascript:emoticon(':oops:')

Thanks everyone for the feedback - sometimes it feels very frustrating

[SquirmingSusan]

Anne, I believe that Zoplicone is approved for long-term use. I know that that Lunesta, which is the same drug but a purer form, is approved in the US for long term use. I've been taking it for almost 2 years and I haven't noticed any problems with it, other than it doesn't always work, and there's that bitter taste that lets me know it's in my system.

And oh gosh yes, you could be in the dreaded perimenopause phase of life, and that comes with all kinds of issues with sleep, weight, energy, depression, anxiety...

All things to talk with the doctor about.