Trying to stop Mirapex

[debbluebird]

Did I suggest that you find a sleep doctor before? But I understand about not having insurance. I didn't have any for two years. A sleep doctor would want a sleep study and I don't know how much that would cost. My sleep doctor is the one who finally helped me with my WED/PLMD. My regular doctor didn't have a clue. The neuro was ok, but it was too hard to get in to see her. I qualified for a discount on my medical before I got my medicare.

[jakesmom]

Desperate D,

After the initial detox, for the first month, the oxy controlled my WED 99%. I am building up a tolerance to it and while it still works, some nights are worse than others when it comes to total control of my symptoms. I will find out tomorrow what opiates have been doing to my sleeping heart rates. I have a feeling I am going to be advised to start weaning off them sooner rather than later. I also get the opiate itch. Mainly it is my face that itches; drives me crazy. I tried Ativan, Benadryl, and Ztrtec and they didn't seen to help. I would take my dog out for a walk and either the distraction or the fresh air one worked every time!!

Keep us updated and don't hesitate to ask questions if you have them.

[Polar Bear]

jakesmom - Benedryl is one of the things that is not not not WED friendly - Unless there has been a change in its' format that I am unaware of.

[badnights]

I know that some people end up back on the Mirapex with the oxy.

That would only happen for two reasons I can think of. One would be a planned return at a lower dose, in the hopes that augmentation would not happen at the lower dose, and using oxycodone to keep the Mirapex dose low.

The second reason would be that the withdrawal symptoms were overwhelming, the patient could not tolerate them, and she never got completely off the Mirapex. That can happen if the doctor doesn't give enough of a strong opioid for the withdrawal phase. Unfortunately, very very few doctors know enough to do this. Luckily, many of them are willing to learn. I hope you can find one, like jakesmom did.

[ViewsAskew]

To add to what Beth said, one other reason would be that the opioids or side effects can't be tolerated for some reason after the augmentation is resolved. It does happen. But, speaking for myself, when this happened, I didn't go back to the DA as my main drug. I alternated with the opioids to reduce problems with either.

I think the key takeaway is that:
IF the opioids resolve the symptoms and are well-tolerated, there isn't a reason to go back.

If there is a problem with the opioids after augmentation is resolved, other classes of medications can be tried, which some people do, also.

[veldon7]

I guess I am having a hard time believing that I wouldn't have to take Mirapex, since the Percocet and Neurontin didn't work last week when I tried to stop it. Even if I do get off the Mirapex, I don't want to have to take Percocet or Oxy forever. I work for a Dr. who gives patients Suboxone to get off Opioids, a (Psychiatrist) so I am kinda paranoid. We have patients calling all the time wanting to get off opioids. Right now the only Dr. I am getting the Percocet from is a Pain Dr. until I find a Neuro. or someone who can help, also have to wait until I get the money, but maybe I can at least stop the Mirapex with the Percocet. I am taking one at night trying to get used to it, I'm not itching too much, but the more I take the more I itch.

[ViewsAskew]

I guess I am having a hard time believing that I wouldn't have to take Mirapex, since the Percocet and Neurontin didn't work last week when I tried to stop it. Even if I do get off the Mirapex, I don't want to have to take Percocet or Oxy forever. I work for a Dr. who gives patients Suboxone to get off Opioids, a (Psychiatrist) so I am kinda paranoid. We have patients calling all the time wanting to get off opioids. Right now the only Dr. I am getting the Percocet from is a Pain Dr. until I find a Neuro. or someone who can help, also have to wait until I get the money, but maybe I can at least stop the Mirapex with the Percocet. I am taking one at night trying to get used to it, I'm not itching too much, but the more I take the more I itch.

D - couple points. First, you didn't have enough Percocet. Second, you didn't wait long enough. It took me almost a MONTH to get through it. It was not easy. But, it was really different afterwards.

You are right about the dependence issue. Many of us to get dependent. For what it's worth, I can stop methadone at any time with no issue, but not other opioids. Not sure why, but Dr Buchfuhrer has said in the past that at our lower doses, most people don't have trouble stopping methadone.

But, if you do, what is your choice? At some point, you will not get relief from the pramipexole unless you keep increasing it. We have no idea what that is doing to your body or your brain.

And, you don't have to take any of the opioids all the time. It could be that neurontin, Lyrica, or Horizant would work for you once you are off the pramipexole. Or, it could be that you could take opioids during the week and take pramipexole on the weekends - thereby preventing another round of augmentation and preventing dependence.

There really are many options.

[veldon7]

Yeah, I think Methadone is similar to Suboxone, it can be used to wean people off opioids, that is why some people don't get addicted to it as much I guess. The Dr. I work for gives Suboxone to patients to get off opioids and alcohol. I thought about asking him to see me, but I couldn't afford the Suboxone, it's only in Brand name I think, and he probably wouldn't give it to me for RLS. I know he wouldn't give me methadone, I've never known him to prescribe it. Eventually I guess I will have to stay on some opioid if nothing else works and I don't itch too much. I was thinking this morning how freaking crazy this is to have to talk to strangers on a computer about this, instead of Drs. but unless they have been there no one freaking understands!! Thanks for your help.

[ViewsAskew]

Yeah, I think Methadone is similar to Suboxone, it can be used to wean people off opioids, that is why some people don't get addicted to it as much I guess. The Dr. I work for gives Suboxone to patients to get off opioids and alcohol. I thought about asking him to see me, but I couldn't afford the Suboxone, it's only in Brand name I think, and he probably wouldn't give it to me for RLS. I know he wouldn't give me methadone, I've never known him to prescribe it. Eventually I guess I will have to stay on some opioid if nothing else works and I don't itch too much. I was thinking this morning how freaking crazy this is to have to talk to strangers on a computer about this, instead of Drs. but unless they have been there no one freaking understands!! Thanks for your help.

it really is crazy. I can't comprehend how so few doctors "get" this. I'm not a doctor and I've memorized the protocols - they certainly should be able to! I think it's mostly they have no idea that it matters or that there is anything else4 that can be (or needs to be) done.

[veldon7]

Well it's 3 am, I didn't take any Mirapex and I have been suffering all night, I have taken several Percocet, 3 Neurontin, Topamax half a muscle relaxer and nothing is stopping the PLMD. I really feel like I am going crazy and I am wondering how the Mirapex could supposedly work the "miracle" of stopping the PLMD. I really hate that I am dependent on that drug! That must be how smokers who want to quit feel. I really hope this gets easier soon or I will be insain for sure!!

[veldon7]

Still no relief, I was up all night tried everything, nothing worked. My legs have been jumping all day today and I am so sleepy! and so tempted to take Mirapex, I may have to tonight. I have been walking since yesterday am, dragging myself around about to fall down, I try to sit down for a few minutes and lay down but can't for more than 5 minutes. I have taken two Percocets today, one Neurontin, even tried D-Ribose, nothing is helping, this is the worse thing I have ever been through in my life!

[rthom]

Geez Desperate D that sucks. I'm sorry it's so bad right now. Maybe Try to remember the times in past when it was bad and eventually improved? I'm sure you tried cold floors and warm baths. If it was anything like my previous experience--time seems to be the key. Wish I could help more. Keep posting, we're here.

[Polar Bear]

veldon7 - this is a really hard time for you and I wish there was a way to make it easier for you
I tried stopping my requip on my own without Dr's support. All I had was tramadol and needless to say I didn't last long

I was up all of last night, it is now 8pm (UK) and I am still going strong. The night previous, sleep was something like 2 hours etc etc
My WED symptoms are not madly playing up - it is more or less simply insomnia.
I have no idea how my body goes on so little sleep. I really do believe that there is an element of hyper activity/alertness somewhere.
And my tramadol is energizing.

What I am really trying to say is that in a small way I (and many of us) have an idea of what you are doing and what you are facing.
The madness of symptoms that will not leave feels like destruction of our life, our sleep, our everything.
I wish you well and hope that easier days are on their way.

[ViewsAskew]

Still no relief, I was up all night tried everything, nothing worked. My legs have been jumping all day today and I am so sleepy! and so tempted to take Mirapex, I may have to tonight. I have been walking since yesterday am, dragging myself around about to fall down, I try to sit down for a few minutes and lay down but can't for more than 5 minutes. I have taken two Percocets today, one Neurontin, even tried D-Ribose, nothing is helping, this is the worse thing I have ever been through in my life!

It took three times for me to "stop" pramipexole. I'd be in the same situation you were and couldn't stand it another day. It was only with a LOT of an opioid that I could do it. And that still wasn't easy.

[veldon7]

Thanks, I just can't take anymore! I've been standing/walking for two days and the Percocet and Neurontin apparently aren't going to work for me. I think I am gonna have to keep taking low doses of Mirapex until I see another Neuro., it's the only thing that works for me. I was planning to take my Trazodone tonight, it helps alot of people with Insomnia. Take care.