And, now my turn

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doety
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now what

Postby doety » Sun Dec 13, 2009 6:26 pm

Ann (or anyone, of course) -- Now what do I do? I read in one of your posts (I still haven't read them all) that you went 10 days without Methadone. I think I would turn into a little blob. How do I get off Methadone? I think it's augmenting or if it can't really augment, I think at least its usefulness has worn off. It doesn't work anymore. I'm up every two hours. Right now I take 20 mg and don't want to increase. As I reduce the Klonopine, I'm not taking anything else. A friend suggested Requip, and said that it made her sick at first, but she figured out a way to split the doses and now she can take it and it works for her.
the thought of taking Mirapex is so scary. But I have a bottle of it, leftover, in the cabinet. What would happen if I took it tonight...along with the Methadone? Maybe I would sleep. Then what would happen the next night??? GOD I hate being a medical guinea pig.

ViewsAskew
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Postby ViewsAskew » Sun Dec 13, 2009 8:04 pm

Yes - medical guinea pig is right.

I've found that just a little bit of Mirapex is all I need. I had .25 tabs and I cut them in quarters. One quarter was enough to make the methadone effective again. But, like you, I didn't want to keep taking the methadone at that rate if it wasn't helping.

The first five days off the methadone were pretty rotten, but not because of withdrawal or anything like that, but because I didn't have a good replacement. I figured out the tramadol/Mirapex/Lyrica combo during the ten days off and that was much better.

Mirapex STILL makes me crazy, lol. The night sweats followed by being freezing cold, the constant awakenings after just a few hours sleep, the mental activity that won't stop....I couldn't use it if I needed to use it daily for a long period. But, as a break? It's working.

The Levorphanol is working - mostly - too. It took some time for me to figure out how to take it in a way that was effective for me. The last two days I took it I had much better luck.

My hope is that in a few months maybe the methadone will again work and I'll get another year or two out of it before I need to switch.

Do you have a doctor who will work with you?
Ann - Take what you need, leave the rest

Managing Your RLS

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Postby ViewsAskew » Sun Dec 13, 2009 8:05 pm

Zach wrote:I hope to hell that's not the case. I've been on Methadone for a little over a year with great results and I do not need it to stop working on me...

Ugh.. I was practically forced to take an EKG on Friday in order to get my refill.. $144 - FOR A 5 SECOND TEST !!!

And I only got one script at that, not my usual 3. I have to arrange to go back to counseling (wtf for I don't know) to apparently placate this new doctor, and god knows how often they are gonna want to make me take an EKG but it better be no more than once a year if I am the one paying for it.

Apparently when I get my counseling setup, I an call back and get my other two scripts without having to come in for another visit.

ugh.. bleh?


That's scary, Zach. I hope it's just the doctor getting to know you phase.
Ann - Take what you need, leave the rest



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Postby Polar Bear » Sun Dec 13, 2009 8:13 pm

Zach, I'm sorry to hear that this last script refill has not been straightforward and it is bound to make you feel a bit vulnerable with regard to getting regular repeat scripts, quite apart from the cost of the test.

Ug... bleh... just about describes it.
Betty
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ViewsAskew
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Postby ViewsAskew » Sun Dec 13, 2009 8:14 pm

cornelia wrote:I guess that refractory patients are hard to treat and that part of it is that meds after a relatively short time don't work anymore and that rotation will become a key factor. I wish I coud see it differently, but this is really my opinion. Rotation times are often hard times.
I also hate the fact that slowly more people on this board will have to leave their jobs or have to change to less stressful jobs.
It is what it is, but it is very frustrating and sad. I guess we have to treasure our relatively good days and make the most of it.

Corrie


Corrie, I think you're right for a subset of us. I wish to hell that you and I and apparently Doety weren't in this group. I wish no one was in it.

Susan's been stable on methadone for quite awhile. Zach, also. I started to have problems within 8 months, I just didn't believe it was tolerance because other people have had such good luck. When I emailed Dr B about it, he honestly believed that it wasn't a problem, but that my initial dose wasn't high enough. I didn't really think that was true, but I wanted to believe it.

Doety, I honestly think that many people are NOT in this group. There are studies that show many people stable on methadone for 7 years or more. It's just not meant to be us, it seems.

BUT - there is help. It's not an easy transition and if I had been working a 9-5 job, I'd have had to take a leave of absence. There are other combos that we can try. Like you, Mirapex scares me - in my mind, it's the root of all evil in my life. But if I use a small amount for up to a week or so, it helps. I don't get 8 hours of uninterrupted sleep, but I get at least 4 along with another 2-3 of fractured sleep. That's better than what I was getting on Methadone alone.

I think I already said this, but options include: tramadol with Mirapex. Lyrica or gabapentin can be added in. Tramadol with Requip could be tried, too. Tramadol alone might work though not as likely. Levorphanol isn't as long acting as methadone, but it helped me. There are other strong opioids that can be tried, too.
Ann - Take what you need, leave the rest



Managing Your RLS



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doety
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tongiht

Postby doety » Sun Dec 13, 2009 9:51 pm

The Mirapex I have is in .625 tablets -- that's all I ever took. I'll try it tonight along with the Methadone and see what happens. My neurologist just retired (he thought I was good for a year, left a RX, etc.) but I'll call tomorrow and get a new doc.

My former brother in law was just in the hospital -- his wife sent out a message, which I appreciated. I didn't know he had RLS, but they talked about having to hold him down. My daughter and I both read that and died. She wrote immediately to tell them that's the worst thing you can do. God, it makes me sick.

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Postby ViewsAskew » Sun Dec 13, 2009 11:40 pm

Do they make a .625? I thought they made a .125, a .25, a .5 and a 1.0. Just want to make sure you're getting the right amount...

I just looked and I saw the following:
.125
.25
.50
.75
1.0
1.5

Maybe you had .125? Half of that is what I'm taking.
Ann - Take what you need, leave the rest



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doety
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yep

Postby doety » Mon Dec 14, 2009 3:05 am

you're right of course. It's .125. So I'll split one and try that tonight. This reminds me so much of when the Mirapex stopped working for me and I didn't know what was wrong and I was floundering. Came here and found out what was going on. It's disappointing to say the least to find out the Methadone is not working either. I mean I knew it -- I've been walking around like a zombie -- but you always think you're doing something wrong, etc. As always, thank you.
Glad you got to see Dr. B. Just talking with him must have made you feel better (and your husband sounds like a gem).

ViewsAskew
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Postby ViewsAskew » Mon Dec 14, 2009 3:37 am

Hubby is a gem but right now I could strangle him, lol. He loves spicy food but when I cook it, the capsaicin in the air makes him choke. So, the rice noodles are getting soggy in the black bean/garlic/chili and getting cold while we have the windows open and the door open to get a cross breeze and he's standing in the hallway...

Yeesh.

Gotta stop cooking chilies, Iguess. I hate cold food! And I hate overdone food. Oh well, he more than makes up for it in other ways. Repeat after me, repeat after me....
Ann - Take what you need, leave the rest



Managing Your RLS



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doety
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Keep it up

Postby doety » Mon Dec 14, 2009 3:06 pm

Yep -- you gotta keep saying that, and I have to keep reminding myself how supportive mine has been about the RLS -- after five years of telling him what's going on, he almost probably surely sort-of gets it!

What I did: You know of course that floating awful "mild" RLS that keeps you from sitting down -- I've been having that for weeks too. I had to go to a dinner last night, so I retrieved some Valium and took a tiny piece of one pill. That got me there. Two hours later I had a major meltdown. I didn't "have" to go to the dinner, but it felt so rude to cancel. Once home, I took what I always take at night -- 20 mg Methadone and 1/2 of a .5 Klonopine PLUS 1/2 of a .125 Mirapex. Of course I slept all night, with a few bathroom breaks. Hallelujia. I will call for an appt with a new neurologist this morning and will report back.

My daughter has "early" RLS, some trouble sleeping, doesn't try to sit in the middle of an aisle at a theater, etc. She told me yesterday a boyfriend had given her some pills that she took every once in a while when she wanted to get a good night's sleep. Damnation. She told me it was clonazepam and I almost dropped the phone. However, I very calmly told her that was the pill I've been trying to become un-addicted to the last four months. She said she'd toss them. May I slap him when I see him? I hope she'll stay off everything until she just can't stand it.

.

ViewsAskew
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Postby ViewsAskew » Tue Dec 15, 2009 12:28 am

Doety, so, so glad you got a night's sleep. It is a beautiful thing, isn't it?

Per your daughter...I surely wish I knew the right answer. For the vast majority of it, taking medication IS the right things when the RLS interferes in our lives. But, some of us? It just makes things worse.

I think my current philosophy (subject to change, of course), is the following:

When RLS starts preventing you from doing what you need/want in your life, then do the following:

1. Get your ferritin tested. Do whatever it takes to get the ferritin above 50 BEFORE taking any medication, preferable over 100.

2. Use any of the RLS Rebel tricks to help.

3. Use any of the things that tend to help: warm baths, heating pads, massage, the tight stocking thingees.

4. Immediately make sure nothing else is causing the RLS. From diabetes to celiac disease, if you have any doubts, get tested. Also check all your medications, the food you eat, what you drink such as alcohol and caffeine. B12 deficiency might be a problem, too. Think out of the box and push your doctors just in case. If it's obviously hereditary, it doesn't mean something else couldn't be making it worse.

5. If and when that hasn't resolved it and you need help, then get help.
5A. See a doctor who listens, cares, and will accept information from you
5B. Get educated, and fast. Read the book by Hening et al written for doctors and either the Buchfurer et all book or the Robert Yoakum for general info. All are invaluable for info to take to your doctors. In fact, consider buying used copies of all and giving copies to your doctors.
5C. If you start with a dopamine agonist, only do so after you know exactly what augmentation is and are aware of what to do in case it happens.
5C. Don't be afraid to challenge your doctor - nicely - or to switch if need be.
5D. Never take anything that is considered to cause strong dependence with daily use without first trying other things that do not. If you must use them (and many of us must), then take regular holidays from them. It's a pain, but it's much worse when you're sick for months trying to stop them.
5E. Combos of small amounts of things seem to often work better than large amounts of one thing. Consider that if a small dose of Mirapex, let's say, isn't completely effective, to through in a small dose of Neurontin or an opioid or whatever the doctor thinks will be good together. Keeping the amounts low can prevent many problems.

I know that I'd be much more stringent than most doctors regarding how to provide DAs, but if anyone cared about my perspective, it would be that anytime at all a DA started to be less effective or showed ANY signs of augmentation, to take a 2-4 week break from it using a mild opioid. Then try again; if the problem occurred within a short period of starting it, try it at a lower dose. If it works, great. Repeat until it isn't effective when going back on it or it continues to escalate in some way. That alone might have prevented many of us from being in the refractory category.

But, that's my very personal opinion, not based on anything but people's experiences as related here and on other sites. I'm sure as I think about it, I could add to this; if anyone else wants to, please do. Maybe we could create a sticky post that reflects the combined wisdom of all of us and clearly states that this isn't from the doctors but what we've seen and feel works well.
Ann - Take what you need, leave the rest



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Aiken
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Postby Aiken » Thu Dec 17, 2009 10:09 am

Zach wrote:and god knows how often they are gonna want to make me take an EKG but it better be no more than once a year if I am the one paying for it.


Yeah, once a month would suck. Still, once a year is probably a good idea, considering that opioids can affect your heart rhythm, and size in some cases. I'm glad your doctor is educated about about that sort of thing.

I don't remember which prescription it's for, but my wife gets her sodium tested regularly for similar reasons. It's annoying for her, but it's nice to know they're being careful with my sweetie. :)
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.

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Aiken
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Postby Aiken » Thu Dec 17, 2009 10:16 am

ViewsAskew wrote:Mirapex STILL makes me crazy, lol. The night sweats followed by being freezing cold, the constant awakenings after just a few hours sleep, the mental activity that won't stop....


I'm gonna guess you're sure, since you're you and you know your meds' effects pretty well, but I still have to ask:

Are you sure it's the mirapex? Those are pretty standard-sounding opioid withdrawal symptoms. With the super-long half-life on methadone, you could still be in a dosing dip after your hiatus(es), even though you're taking it again.

Just a thought.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.

doety
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Postby doety » Thu Dec 17, 2009 4:56 pm

Ann, thanks for the thoughtful answer. I cut and paste and will save it for the time my daughter might need to see it. I remember being where she is -- some sleep disruption, but not really enough to be serious -- or that's what I'm picking up. She did the same thing I did during pregnancy -- not sleep at all until about 6 in the morning. She has 10 years before menopause, which was the critical time for me -- no sleep at all during the night and I was too old to bounce back. That's when I went begging for drugs.

I know I'm not doing the right thing -- I'm sleeping, but waking up groggy. I had forgotten how powerful Mirapex is, even with the lowest dose cut in half. Tonight I think I'll try 1/2 Mirapex and only 10 mg of Methadone and see how that works. I can't see the doc until Dec. 28, so I'm winging it.

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Postby ViewsAskew » Fri Dec 18, 2009 6:13 am

Aiken wrote:
ViewsAskew wrote:Mirapex STILL makes me crazy, lol. The night sweats followed by being freezing cold, the constant awakenings after just a few hours sleep, the mental activity that won't stop....


I'm gonna guess you're sure, since you're you and you know your meds' effects pretty well, but I still have to ask:

Are you sure it's the mirapex? Those are pretty standard-sounding opioid withdrawal symptoms. With the super-long half-life on methadone, you could still be in a dosing dip after your hiatus(es), even though you're taking it again.

Just a thought.


I am all too sure. It did that to me the WHOLE time I was on it. Drove me NUTS!!!!! As soon as I take it, it's back. As soon as a day goes by, it's gone!

The 10 days I used it were nasty. The Levorphanol was lovely in comparison; just blinding headaches.

This last weekend with it? All back again :-).

I can honestly say that other than a headache the first couple days, I honestly had no symptoms that I could contribute to withdrawal, and I'm not sure the headache was. I get them relatively frequently anyway.

Now, this Levorphanol headache....it's nasty. It will be interesting to see if it happens after each drug holiday. It's two for two. (Comes the second day after starting the drug; lasts for 12-18 hours. Feels a lot like a pre-migraine.)
Ann - Take what you need, leave the rest



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