Methadone, Mirapex tra la

[doety]

I know we're talking about these drugs on other posts, but I can't read through all those posts again. Seems like we all have the same problems, over and over. So, maybe start post, again.
I love Mirapex and hate it. Gain weight, augments. Can't seem to do without it. I need a holiday and thought I'd use Methadone. OMG. Anyone who's read my posts will know I can't do Methadone. I'm sleepy all day, I fall asleep at the wheel, I slur my words, my breathing decreases. I went through so much stuff to finally get off it. So. Took it two nights, realized what was going on, so now I'm back to rotating through various things. Maybe I can reduce Mirapex, maybe I can't and will have to just deal with what happens.

I went to a pulmonologist to get a sleep test (had it, haven't heard back yet). Dear God. He was full of so much misinformation I wanted to post a sign on his door: Keep Out. He said sometimes WED goes away! That I should take lots more Mirapex!! on and on. I kept my mouth shut. Talked to my "good" doc yesterday (neurologist)...he's just fine with giving me whatever I want to take. He considers me an expert on this stuff -- and he's certainly right that I pay more attention, read and research more, then he ever can. He and I had talked about deep brain stimulation -- and I saw an article on that in Nightwalkers this month, which I will send him. (It didn't sound so promising). I'm pretty sure that if something new and wonderful comes along -- I will read it on here first.

Jakesmom: Have you found any solutions?? Are you getting any sleep?

[Polar Bear]

It is pretty scary that a consultant/expert will talk and advise with seeming authority on a subject that they clearly know nothing about.
And what is also scary is that they don't know that they know nothing about it. And it's only because doety has done so much research on her own behalf and has become her own expert that she is able to throw any misinformation to the side.

Pity in this situation, the novice WED patient who would be taking heed of a well meaning but misinformed advisor.

[ViewsAskew]

No kidding, PB! We're not trained to doubt our doctors! We believe them!

Unfortunately, that's how many of us get here. I've never been much for lawsuits, but honestly, this is enough to change my mind! How DARE that doctor act as is he knew what he was talking about!

Doety, I hear you on the options issue. I have two things that work, and I can only tolerate one of them. Mirapex is out for me to take alone. I can take a half-dose occasionally - like every 3 days - and take half a methadone dose with it. If I take more than that, the side effects are untenable. I don't love the methadone, but it doesn't bother me nearly as much as it does you. But, after a couple weeks of regular use, I'm pretty lethargic. I really want a way to take a break from it every week. Just can't find one. So, for now, living with the side effects and trying things like taking Mirapex once every few days to see how much it helps.

[QyX]

Why are you guys taking Methadone when it causes all these problems?

There are lots of other opioids you could use. For example Oxycodone, Hydromorphone, Morphine and in the U.S. Oxymorphone and Hydrocodone ...

They say Methadone is maybe the strongest/best opioid for RLS because it also an NDMA-Receptor antagonist but all the other opioids I named are also very strong.

>> No kidding, PB! We're not trained to doubt our doctors! We believe them! <<

Well ... I got mistreated for Depression, ADHD, bipolar disorder, anxiety and severe sleeping disorders caused by psychiatric disorders from 1998 until summer 2012.

Now I am on WHO class 3 opioids with 28. Thank you doctors! When I started doubting the doctors ... they became aggressive, thought I were lying and so on ... It was my current Neurologist who is also a Psychiatrist who figured things out - together with me - in the end.

[ViewsAskew]

Why are you guys taking Methadone when it causes all these problems?

There are lots of other opioids you could use. For example Oxycodone, Hydromorphone, Morphine and in the U.S. Oxymorphone and Hydrocodone ...

They say Methadone is maybe the strongest/best opioid for RLS because it also an NDMA-Receptor antagonist but all the other opioids I named are also very strong.

Mostly because either the other ones do not work for us or cause us even more problems. For me, and only me, methadone is the LEAST problematic. Most of us who get to an opioid try several before we decide which one works best. I've used at least seven or eight of them strong ones (and every one you listed); pretty sure there are only two I haven't tried and one is injected, so it's not on my list to try!

[QyX]

That's scary.

I don't wanna continue trying different opioids. I just want something that works. I know. This is asking for a lot.

[ViewsAskew]

That's scary.

I don't wanna continue trying different opioids. I just want something that works. I know. This is asking for a lot.

The vast majority of us want it AND get it. It's that teeny percentage that do not....and we end up here looking for answers. I've used over 15 drugs alone or in combination over ten years. Not fun.

[QyX]

I am 28 now and taking drugs for medical issues since I am 14 starting with Ritalin for ADHD which I never had.

After tomorrow I will have tried 40 different drugs to fix my medical problems.

[ViewsAskew]

I am 28 now and taking drugs for medical issues since I am 14 starting with Ritalin for ADHD which I never had.

After tomorrow I will have tried 40 different drugs to fix my medical problems.

I'm lucky - I've only had to resolve WED and I knew that's what it was, so didn't have to go through what you did. When a doctor doesn't understand it or other diseases are involved, it can be very painful for the patient as it gets figured out.

[badnights]

QyX, I'd love to tell your story on my WEDawareness site that doesn't exist yet.

[badnights]

doety, what are you doing now, after all the grief you went through? Are you rotating Mirapex and methadone?

[doety]

Hey Beth:
no and thanks for asking.
I actually tried Methadone again for two nights and it all came rushing back -- falling asleep during the day, slurring, constipation!, etc. etc.
Now I am rotating a variety of other stuff. I take Mirapex along with either: Vicodin, Oxycodone, Tylenol 3, Temazepam, think that's all. I'm sleeping, hoooooooray.
I'm about to take a big road trip and we'll see how all that goes. I'll have my laptop and will keep in touch.
I'm still trying to be very aware of the mental component of this mess. In preparing to be in a car for long stretches (but I will stop A LOT, and am taking my bike), I'm trying to fill my I-Pod...ha! One day I got so frustrated, my legs went crazy!! I wasn't surprised. Now I'm trying to breathe deeply, take it slowly, and know if I can't get everything done, it really doesn't matter.

By the way -- apropos of nothing, I had an amazing thought yesterday. I was in yoga yesterday (I try to go twice a week). This thought came up: Maybe you're okay just the way you are. I felt a wonderful sense of peace. I know it's a cliché, heard it all my life but I've never taken it for my own. It's only taken me 70 years...

[EeFall]

I know we're talking about these drugs on other posts, but I can't read through all those posts again. Seems like we all have the same problems, over and over. So, maybe start post, again.
I love Mirapex and hate it. Gain weight, augments. Can't seem to do without it. I need a holiday and thought I'd use Methadone. OMG. Anyone who's read my posts will know I can't do Methadone. I'm sleepy all day, I fall asleep at the wheel, I slur my words, my breathing decreases. I went through so much stuff to finally get off it. So. Took it two nights, realized what was going on, so now I'm back to rotating through various things. Maybe I can reduce Mirapex, maybe I can't and will have to just deal with what happens.

Mirapex's rollercoaster for me is over. Once it worked for several years (at the first), this time it only worked for 1 month before I augmented. I just don't think it is my friend anymore - but then what kind of friend forces food down your throat and forces you to buy things you can't afford (those are just a couple of the side effects I have had to live with).

Now I am trying twice the methadone, sadly it isn't working well, unless one considers one or two hours of sleep a night a success. Last night it wouldn't even allow that, I finally took an ambien that allowed me to sleep an hour. I also take Clonidine and Lyrica too. Even if the methadone did work my doctor is so freaked out about methadone that he wouldn't give me anymore. He has been trying to get me to stop it. All I have had to say is what are you going to replace it with?

At this point all a lot of us can do is hope for someone to find a new drug that works.

[badnights]

"Maybe you're OK just the way you are". Ahhhh. I love when that flash hits me. I should encourage it to come more often. I am not holding up to my decision to meditate every day in order to help get rid of depression., but I know it would work; it stimulates thoughts like that one!

At least your ever-varying concoction is working for now and will (I hope) let you enjoy your road trip (as far as such a thing is possible. I've never liked sitting in a car, but always liked going places and being able to stop whenever I wanted.)

I think the Mirapex would last longer for you if you could get a 2-day break from it now and again, maybe by increasing one of the opioids for two days? But I forget what issues you have with the non-methadone opioids.

Well good luck with everything !!
hugs

[jakesmom]

[quote][Now I am trying twice the methadone, sadly it isn't working well, unless one considers one or two hours of sleep a night a success. Last night it wouldn't even allow that, I finally took an ambien that allowed me to sleep an hour. I also take Clonidine and Lyrica too. Even if the methadone did work my doctor is so freaked out about methadone that he wouldn't give me anymore. He has been trying to get me to stop it. All I have had to say is what are you going to replace it with? /quote]

Lyrica has worked wonders for me for my depression and pain, but the price tag is more swelling and constant itching. Did you have any issues with Lyrica?