More on stopping Mirapex (sorry....)

[doety]

It seems to go on and on and I guess we need to start a new thread pretty often.
I'm augmenting and need to get off it. I've been taking Mirapex every night, then every other night taking Tylenol 3 or Vicodin.
Talked to my neurologist, who doesn't have much experience, but is willing to work with me on anything I want to try.
Instead of going cold turkey, he suggested I take the usual Mirapex one night with the Tylenol 3, then the next night JUST take a Vicodin (5/325 mg). The Mirapex night, about 3 hours after I take it, I go to sleep, sleep pretty well.
But I've now had two nights with just the Vicodin where I never slept at all, roll around, walk a lot, etc. THEN the next day I have it severely. I have it right now; it hasn't stopped all day. Of course it's miserable.

I'm sorry to bring this up again. I read as much as I could on the board today and still don't know what to do.
Ann: how's that patch working for you? Do you think you'll continue?
On the nights without Mirapex, seems like I should be taking something stronger. I'm out of Methadone, maybe I'll call him and ask him to phone it in on Monday. In my closet, I also have a bottle of Oxycodone, 5mg tablets. And Tramadol, 50 mg -- I've never tried that.

If it ever works that I get some sleep every night, then what??? Does this sound like a rational plan? If I get off Mirapex, what do I do? If the patch worked, maybe I could try that, altho the doc worries Kaiser may not pay for it. But Damnation I would. (what does it cost, anyone know?).

[jakesmom]

Speaking from recent experience, the only way to get off Mirapex is to stop. No titrating, no rotating, no easing into it. Just stop. I did it with tramadol during the day and 10 mg of oxycodone at night. Others needed more, but I had to work each day so i made do. The first 3 days were hell and I paced alot, lots of manic behavior (got up to do a load of laundry wound up eating ice cream and doing a puzzle and forgetting what I got up to do). I was erratic, irritable and restless. I started over Memorial Day weekend. I slept when I could and paced when I couldn't stand the pain, but I made it and life after Mirapex is so much better than life on it.

Let me know if you have any questions

[ViewsAskew]

It seems to go on and on and I guess we need to start a new thread pretty often.
I'm augmenting and need to get off it. I've been taking Mirapex every night, then every other night taking Tylenol 3 or Vicodin.
Talked to my neurologist, who doesn't have much experience, but is willing to work with me on anything I want to try.
Instead of going cold turkey, he suggested I take the usual Mirapex one night with the Tylenol 3, then the next night JUST take a Vicodin (5/325 mg). The Mirapex night, about 3 hours after I take it, I go to sleep, sleep pretty well.
But I've now had two nights with just the Vicodin where I never slept at all, roll around, walk a lot, etc. THEN the next day I have it severely. I have it right now; it hasn't stopped all day. Of course it's miserable.

I'm sorry to bring this up again. I read as much as I could on the board today and still don't know what to do.
Ann: how's that patch working for you? Do you think you'll continue?
On the nights without Mirapex, seems like I should be taking something stronger. I'm out of Methadone, maybe I'll call him and ask him to phone it in on Monday. In my closet, I also have a bottle of Oxycodone, 5mg tablets. And Tramadol, 50 mg -- I've never tried that.

If it ever works that I get some sleep every night, then what??? Does this sound like a rational plan? If I get off Mirapex, what do I do? If the patch worked, maybe I could try that, altho the doc worries Kaiser may not pay for it. But Damnation I would. (what does it cost, anyone know?).

In my experience, once you've augmented you HAVE to stop the drug completely for at least a month before using it alternate days. Otherwise you're effectively in that horrid augmentation withdrawal state every other night. .

Per the patch, rotigotine, I augmented in 6 days. I stopped it immediately and it took about 1 week to get some real sleep (and that was using a large dose of methadone) and about 2 weeks for it to be back to normal. I normally augment on pramipexole in about the same time frame. So, if you normally augment in 2 weeks to a month on it, you could easily use it for 7 to 10 days, then take 2-3 days off using oxy or whatever. Then use it again. It did control the symptoms and I had fewer side effects than with pramipexole (and no depression). It is quite expensive, though.

I honestly don't think any of us who significantly augment can ever take a DA of ANY kind on a regular basis. Between one day and one week or so is probably it. For me, I won't try anything longer than 1 day in the future. If you don't catch it before the augmentation starts, it's a minimum or 1 to 2 weeks of h-e-l-l getting off of it.

[doety]

Thank you so much for your posts.

FYI: I'm watching CBS [i]This Morning[/i]....a story on pleasure. A researcher says SLEEP is always at the top of the list of what gives us pleasure!! We could have told them that.....

I figured you would say what you did. But I love my doctor -- he's willing to listen and help me try whatever. And he CALLS me and seems to feel as bad as I do when I'm having a horrible time.
I wanted to do what he suggested, and now I can tell him I have.

So I stop cold turkey. And substitute opiates.
Methadone? It works but I had a terrible time stopping it. Of course, that was back when I thought I could take one pill (and I was on it for years). Now I know taking one thing often causes dependence and after awhile I need more and more. But I think it would work.
Oxycodone? For some reason, I react oddly to it. Might try again.
Tramadol? I've never taken it, but I have a full bottle and could try.
I don't know what else.

Dosage:
Please give me some ideas about how much of what to take. I know people hate to do
that, but I need to give my doctor guidance, and need some myself.
I guess the way to go is to take the suggested amount and then if it doesn't work after a couple of hours, try a bit more? I've always just suffered, walked, rolled around and been miserable.

After that nine-day siege withdrawing from Suboxone, I can't tell you how much I dread this.
Mirapex is my drug -- it's like some of my marriages. Big good, then big bad. So, I'm sure I'll go back to it -- carefully, and I'd like to not take more than .125 mg.
And combine it with other things.

I hate what all these drugs have done to my brain. I could really tell on a recent trip to see friends ("Don't you remember when you stayed with us?? No.")

I'll wait for answers, then will email my doc and try to talk to him tomorrow. THANK you.

[ViewsAskew]

You have to use one of the strong opioids at night. You might be able to use tramadol during the day - that worked for me before.

The strong ones are: methadone, oxycodone, oxymorphone, hydromorphone, oxycodone extended release, and levorphenol. I think I have them all... In my experience, they all work for me, but have different side effects. All have the constipation issue, but some of them make me very angry/tight. So, for me, it's finding the one that doesn't do that. I assume I'd become dependent on all and have to increase my dose.

Since I started switching between the DA and the opioid, I stopped having to increase my dose. Within 6 or 7 months of daily use, I was back to starting to see the need to increase.

So, two things are VERY clear to me. I can't use opioids every day and I can't use DAs every day. And as long as I can tolerate the side effects of each, it's as good as it gets. At least for now.

[doety]

I feel like I'm coming here to confess my sins.
For the last week, I've been trying the one night on Mirapex, when I got good sleep, and one off, when I had WED all day, all night. Then I stopped completely and had full-on WEDS, no sleep. Told the doc I had a bottle of Tramadol, never opened. He said to take 50 mg. during the day if needed, and 100 at night.

Took one yesterday and loved it. As we bounce around in these drugs, I think we all find things we're more comfortable with (my body hates oxycodone, Requip, Neurontin, a few others) -- and I liked the happier way it made me feel and turned the WEDS way down. Then it occurred to me that maybe I could actually sleep through the night while I'm leaving Mirapex behind.

Bottom line: I took too many last night. When I got up in the middle of the night, I was reeling, running into things. Right now, things aren't right, I'm still kind of woozy, my brain is in hiding, about to topple over. I'm vowing to only take what the doc said and also write it down -- which I didn't last night (I also mixed in a Vicodin.) I'm getting careless. Guess I'm lucky to get up this morning. It'll be interesting to see what this does to my progress. I won't tell my doc; think I've learned my lesson. I've built up a good trust with him.

[Polar Bear]

You have learned your lesson. - just how medications can affect each of us so differently.
I use tramadol, and I feel no issues with it.
When my mother used tramadol she saw rabbits running up the curtains, would not be convinced otherwise and so in the end we told her that we had caught them all.
That sounded a bit flippant but it makes the point that we should be very careful of the dosage of what we take. I know that desperation can take over and there have been times when I've taken a little more than prescribed.
Thank you Doety, your post is a reminder to us all.

[ViewsAskew]

I thank you for admitting this. ANY of us could be a little careless and pay a BIG price for it. It's so important to be careful with our meds, not mix them without careful thought, and not exceed limits.

Doety - do be careful with tramadol. It's not hard to stop, but if you do not slowly reduce it, you can get very, very sick. I was dependent in just a few weeks of daily use. A similar admission from me - I didn't check to see if there were any issues with stopping, stopped it abruptly, and ended up in the emergency room.

[doety]

Thank you and I promise I will. At this point, I'm hoping it might ease the transition off Mirapex.
I'll report back on that.

This may be morbid, but I think it's important.
I've already left directions for my daughter about what to do when I die, including people to notify. This discussion board is on that list, because this feels like family to me. Actually, much more supportive!

[rthom]

I don't think it's morbid.

[Polar Bear]

Not morbid at all.

[ViewsAskew]

I can't even say the word die or death with my husband's family. It's as if by talking about it, we would invite it.

This is a wonderful place in many ways. I hope that many people who don't post often are also helped by our interactions. It's a nice thing to be part of.

[veldon7]

I know how you feel Doety, I've been on Mirapex for 7-10 yrs. I stay on a .5 dose atleast. I've tried to stop several times, still planning to try if I get the right Dr. I still take some Neurontin, it helps but I still have to have the Mirapex even with a dose of Percocet. I only slept 3 to 4 hrs last night. I take other drugs too for migraine (Relpax) which can cause heart problems, I hate having to take it. I get depressed alot and try to take Cymbalta but I am afraid to take anything for Depression becauses of my legs. Tried Wellbutrin but it doesn't help much and may cause worse headaches. I'm so sick of taking drugs and feeling like crap! Good Luck!

[debbluebird]

I hadn't thought of having my husband tell everyone here if I died, but since it was brought up, I think I would like that. For some reason I've had death on my mind lately. I had a "I died" dream about a week or so ago and I'm going to have surgery in a month or so. Since I'm an RN death has been in my life many times. I think I will have my husband do it. I have also gotten my affairs settled. I've done a new will, made copies of my living will, and I've told my husband what to do with my stuff. I know this all sounds silly but having this big surgery, you just never know.

[doety]

I don't think it's silly -- what's silly is to pretend we'll live forever! I worked in a hospice for a year (as a volunteer), but that's another story. I've filled out the "Five Wishes" form, about how I'd like to be treated if I'm incapacitated.
I believe that events in our life, like trips, hospital stays, even something like a marriage or divorce, can be times to get out the papers, re-examine where we are and what we want. We can't control everything, but we might as well do something about what we might control.

Three nights without Mirapex. I took some Tramadol and finally about 3 a.m., a low-dose Vicodin. I buzzed around, and then fell into bed at 5 a.m. and slept until 9. That felt like progress to me. I can't pretend it's gone, but even a little sleep felt wonderful.