Mirapex/Augmentation/TENS

[debbluebird]

I have just been through a difficult period. Frankly I didn't think I was going to make it. About 3 weeks ago I decided to wean off Mirapex because of augmentation. The last couple of months before that had been difficult. I had read about using a TENS unit and decided to try that while I was going off MIrapex. I have an Inferential Stimulator simular to a TENS. At first I felt like that it was helping. I had some good periods. But then some nights were horrible, only getting about 2 or 3 hours of sleep. Yesterday I decided not to use my machine. I was so fed up and exhausted. Currently I have only been taking Methadone. Last night I took a little bit more than I had been taking, trying to find the right formula. I find that when I experiment I usually have good results. I think fighting this disease is hit or miss. I only had a few symptoms in the afternoon, I moved around and they went away. I fell asleep about 10 pm and woke up about 11:30, went to bed, slept until 1. Woke up with minor symptoms, took a half pill. Slept uneasily until 2:30. Took another half pill. Then slept from 3 to 7. I couldn't beleive it. I finally made it through having a better night. I think this evening I will only use my IS machine for about a half hour. I think I was using it too much. This disease has ruined some aspects of my life, but I am surviving and getting through this. Of course my poor husband goes through this with me. DEB

[rthom]

Deb
That is soo frustrating about this. I find the same thing frequently i think something might be helping--tell every one and then 2-3 days later, bam right back to square one. I'm left wondering why and if i'm nuts.
Keep at it hopefully they methadone will help settle it out for you.

[Polar Bear]

Deb - would re consider a visit with your GP and reassessing your dosage of medication or a cocktail i.e. methadone and another drug.
You have done so well to have come off the mirapex .

Looking at your sleep pattern seems like you first took a half pill when you woke up at 1.30 am, and in all you had about 4 sleep sessions giving you about 7 - 8 hours sleep which isn't bad overall. Do you take any medication prior to going to bed. Many of us find that a cocktail keeps the two (or maybe even 3) drugs at a lower dose.

Wouldn't it be wonderful if you could reduce the number of awakenings.

Up until recently I had spent several years sleeping in snatches and going to work on 3 hours sleep. At present I awaken only once and get around 7 hours which is such a change for the better. My medication very much follows the drug cocktail regime.

[debbluebird]

Yes, I should have said what I had before I went to sleep. I used to take a half a tablet of the methadone (5mg) about 7pm then again around 10 pm. Then during the rough period I increased the methadone to two full tablets. Last night I decided to take a full tablet (5mg) at 7 pm then another at 10pm, then I did the two halves during the night. Tonight I'm going to do 1/2 at 7pm then full at 10pm then a full during the night if needed. The reason I'm going to take a half at 7, I just want to see if I can tolerate it. I have to fight itching and nausea if I take over 2 tablets. For the last several years I have experimented with the help of my doctor. I call him and we chat. There was a period when I was calling several times a week. Together we figure it out. I haven't talked to him for about 3 weeks. I was going to call after this week, thinking I would have something to tell him.
There have been many times when I thought I was going crazy. DEB

[Polar Bear]

Good luck, its wonderful to have a cooperative and caring doctor.

[badnights]

Girl, you are NOT going crazy. You might even still be going through Mirapex withdrawal; for some people it can take as long as 4 weeks (anecdotal information - the official line is 2 weeks, I think). (The withdrawal consists of worsened WED symptoms.)

But if the withdrawal is over, then what you're experiencing is the level of WED you're going to need to medicate for, in which case you'll need something better than what you have, as PB said.

I'm one of the people who takes more than one type of medication. This course of action has the benefit of allowing you to keep the dose of both drugs low, and also, it seems to me that the different classes of drugs deal with different parts of the WED problems. I am taking hydromorph contin, mainly, and zopiclone to sleep (because the hydromorph wakes me up), but I recently added in a continuous-release levo-carbidopa and have been sleeping much better as a result. I also use a regular levo-carbidopa for breakthrough symptoms during the day. Frankly, I am keenly aware that I might augment, because this drug is renowned for that, but I am hoping I can keep taking it if I keep the dose low.

Or you could take gabapentin with the methadone. Or alternate the methadone with something else, like Ann does. Maybe even something you've had side effects from in the past, but at a lower dose, might work.

[debbluebird]

I have taken gabapentin. At the time I was taking it for nerve pain in my back and knees. When that all ended, I stopped the drug. Hadn't thought about it for WED. I have taken many drugs, lyrica (had terrible side affects, plus gained 50 pounds), valium(was horrible, hospital started me on that with my knee surgeries), ativan, oxycodone, muscle relaxants ( gave me halucinations). Not crazy about trying Levo-carbidopa because of augmentation. Also been on klonapin and requip. (not sure about spelling). I am very sensible to side affects. I have no problem falling asleep if my legs allow it. I already have nausea and itching with the methadone (not bad). Not sure what else I could try. Last night I didn't sleep very well. Felt my legs, very slight sensations, but enough where I kept waking up. At least not the severe sensations I was having awhile back. So I'm tired today. Any other suggestions? DEB

[ViewsAskew]

There are probably 15 opioids in all, I've been through 8-10 of them. They may not affect you the same as methadone. I found each one to be a bit different, and some more different than others. Tramadol is another option. I find it isn't strong enough for me at night, but does a great job on daytime symptoms. It also works at night if I take some of it with a half dose of a dopaminergic.

There is the extended release gabapentin - can't think of the name of it at the moment - but it works a bit differently and many people have luck with it.

The patch, rotigitine, will be out in July here in the US - it's already available in Europe.

Combinations often work very well - less of each drug to cause nasty side effects. I've found that this is best for me. You have to have a doctor who's willing to keep trying options and you have to give them a few weeks (as long as the side effects aren't too terribly obnoxious or life threatening).

[debbluebird]

I've heard about the patch, but don't really know what it's supposed to do. You're right about taking several meds, to lessen side affects. I've had to increase the methadone and I'm now itching more. Nausea is not too bad. I will be going to the doctor soon and maybe I can add something else. The problem is my sleep doctor is in another state since I moved. I call him for advice but no longer use him for scripts. I kind of wanted to see how this latest experiment went before I went to the doctor, which is now a reality. I will have to add something and cut back on the methadone. It is so frustrating that doctors just don't get it. My primary is in that catagory. Thanks everyone for the in put. I really like this web site for information and support. DEB

[debbluebird]

Well, it's been several nights of being able to sleep pretty good. I get up in the middle for an hour or two to take a pill, let it work and get the legs settle down. So I'm am pleased that it has worked getting off Mirapex. The last 3 nights I even used less methadon, only two full tablets altogether. So I'm itching less and no nausea. I'm thinking that I might add the gabapentin, so I can cut back on the methadone to one tablet. I have to talk to MD, so we'll see. DEB

[badnights]

It's looking good. Like the bad WED was just the augmentation & withdrawal from Mirapex. That is very good news.

[debbluebird]

Finally made it to the doctor and got a script for gabapentin. Also talked to sleep doc and he agreed to try that. He wants me to try the new duragesic patch that is supposed to come out in a few months. We'll see. I don't have insurance and if it's expensive, it will have to wait until next year when I get ins.
Otherwise nights haven't been too bad. Just up 2 to 4 hours in the middle. DEB

[debbluebird]

Well, it's been awhile since I got off of mirapex. I do believe that it was hindering my weight loss. I had been trying since January and it seemed like something was interferring. Now that I've been off of mirapex, I'm starting to loose weight. I was having to be so careful and count my calories down to the last one. I follow Atkins and now I can have a small piece of cheese as a snack and I'm still loosing weight. Before I had to eliminate the cheese and really restrict the calories. I'm down 13 pounds now. I feel like I can get the rest of this weight off. Before when I took mirapex, years ago it didn't seem to bother my weight. It seems like the older I get the more the side affects of medication affect me. DEB

[ViewsAskew]

Sounds like getting off it was a good thing in many ways!

[Chipmunk]

That's great! I think weight loss is such a complex thing. I remember trying to lose weight after my second daughter. I was following Atkins AND Weight Watchers - ultra restrictive - and I still couldn't lose a pound. It was because (I believe) I was so sleep-deprived from a newborn and the WED and my body was so stressed that it felt like it needed to hang on to the weight, especially because I was nursing full-time as well. Once I started getting sleep the weight started dropping off.

Side note: have you read Gary Taubes book, "Why we get fat and what to do about it?" http://www.amazon.com/Why-We-Get-Fat-About/dp/0307474259/ref=sr_1_1?s=books&ie=UTF8&qid=1342545320&sr=1-1&keywords=gary+taubes
It talks about how carbs affect your body and cause inflammation and weight gain. It's along the same lines as Atkins' book, but less infomercial and more science.