And, now my turn

SquirmingSusan · Post by **SquirmingSusan** » Tue Dec 08, 2009 4:39 pm

It doesn't seem like dosages on opioids are ever absolute; it's more a matter of what controls your symptoms without making you stop breathing. What does Dr. B say about taking more meds to get ahead of the symptoms? That's why you hired him, right? To help you figure this all out. (Susan writes, thinking that of course I would rather figure it out on my own...) I'm just thinking that the pain clinic was willing to put me on the fentanyl patch when I wasn't getting good symptom control... Those are just so darned expensive.

Point is, you've got a long way to go before you exhaust the possibilities of meds. I know it sucks to be back in this experimental time of figuring out what works, especially since you had good control of the RLS for a while.

SquirmingSusan · Post by **SquirmingSusan** » Tue Dec 08, 2009 4:56 pm

I've had really good luck with changing my sleep time, and it worked really quickly. I've been taking melatonin (about .3mg - .5mg) at about 6pm, and then wearing blue-blocking sunglasses after 7pm. Then in the morning, I drag myself over to a window to get some sunlight, and turn on my little "happy light" as well for about an hour. I've had to modify the times a bit because I want to go to sleep too early, so now I take the melatonin about 8pm and put on the blue blockers about 9pm. That makes me sleepy by about midnight, and when I take the Ambien I can usually get to sleep by 1am or so, which is when my kids are done "visiting."

This is a method that's talked about on the "Talk about sleep" forum, in the circadian rhythm disorder message board. It seems like it works for many people.

Will Dr. B give you something to help you sleep, or is it too soon after starting a new opioid? I keep forgetting that's what the Lyrica is for, but maybe try something else?

I just hate your insurance situation and that some of these meds cost so much. :evil:

Post by **ViewsAskew** » Tue Dec 08, 2009 6:37 pm

Didn't work again. Took a full dose at 9 PM. RLS was fine. Took the second dose at 3 AM. Never got to sleep. I took the next dose at 9 AM and I easily could be sleeping now.

I'm going to try to stay up for another hour, maybe, then sleep. I can try to move my sleep time forward to about 8 PM and try sleeping from 8 to 2 or 3 AM and see how that works. It might be OK as the worst RLS seems to be around the 1 or 2 AM to 6 AM time frame these days.

Zach, I'm not getting behind the RLS. It's mild or non-existent when I take the dose. Whether I take a 1/2 tab or 2 tabs, the RLS is gone while I'm doing things, even watching TV. It's just not enough to sleep.

It's as if the RLS has gone through a change; it's mild as long as I'm occupied, but try to sleep and it intensifies by the power of 10 :shock:

Neco · Post by **Neco** » Tue Dec 08, 2009 7:08 pm

I see..

Well to modify my statement somewhat.. It looks like your are sitting on the 6 hour window.

Have you tried shorter intervals? Assuming its dosed 4 - 6 hours, with something like that I would take it every 4, especially since you seem to have a problem with medications wearing off fast, you just might be processing a lot versus a typical person..

Obviously I don't know what he wrote for instructions, but you mentioned having enough to take up to 8 per day.. I'm not suggesting that much in any way..

But taking a half every 4 hours might help maybe? Its good that you get relief when doing normal stuff.. What about taking an extra 1/2 or 1 whole pill 30 minutes before bed ? Something like that.

Post by **ViewsAskew** » Tue Dec 08, 2009 7:14 pm

I thought the same thing about shorter intervals, too, Zach. I tried taking it at 5 and then 4 hours intervals during that crucial period but it didn't change anything. I seem to recall that the one time it did let me sleep for a short period, but it only lasted an hour or so, but I may be remembering wrong.

Susan, it really doesn't seem like it's about getting ahead of it. It's as if the RLS is very mild to nonexistent as long as I'm even slightly engaged - ready, watching a movie, making dinner, talking on the phone. Whether I take the meds or don't take the meds it's about the same. It's only when I start to fall asleep that it kicks in. Then it's as if it is ten times worse all the sudden. Sometimes I even get close to a complete 90 minute cycle of sleep, but when I awaken, it's with kicking, and more extreme RLS. Then it takes a lot of walking, stretching and movement to calm it down. Once it's calm, it's as if it never happened.

Now, it's not as bad (the intensity) on the levorphanol that when I was taking the methadone or tramadol, but it's eerily similar....

Post by **ViewsAskew** » Tue Dec 08, 2009 7:21 pm

SquirmingSusan wrote:I've had really good luck with changing my sleep time, and it worked really quickly. I've been taking melatonin (about .3mg - .5mg) at about 6pm, and then wearing blue-blocking sunglasses after 7pm. Then in the morning, I drag myself over to a window to get some sunlight, and turn on my little "happy light" as well for about an hour. I've had to modify the times a bit because I want to go to sleep too early, so now I take the melatonin about 8pm and put on the blue blockers about 9pm. That makes me sleepy by about midnight, and when I take the Ambien I can usually get to sleep by 1am or so, which is when my kids are done "visiting."

This is a method that's talked about on the "Talk about sleep" forum, in the circadian rhythm disorder message board. It seems like it works for many people.

Will Dr. B give you something to help you sleep, or is it too soon after starting a new opioid? I keep forgetting that's what the Lyrica is for, but maybe try something else?

I just hate your insurance situation and that some of these meds cost so much.

Getting to sleep isn't the issue with this drug. It is with the tramadol, but this doesn't wire me as much. I'm a bit more awake than I'd like, but it's not horrible. It's just not stopping the RLS enough. I honestly think I could make my sleep time be whatever I wanted when using this, but what seems to be at issue may be the RLS's circadian rhythm. Dr B has maintained that if you consistently went to be later that over time, your RLS would start later. It took at least a year, but that may be what's happened. Regardless, the medicine is not controlling it at its worst and I'm not sure how to resolve that other than not sleeping during that time period.

Post by **ViewsAskew** » Sat Dec 12, 2009 4:56 am

The rest of the week has been variable. Some nights I get to sleep during that "tough" time and others I do not. I haven't a clue as to why it works sometimes and not others.

Tonight is the first night off of it and on the tramadol. I am crossing my fingers that it actually works enough to let me sleep without needing Mirapex, but I have the Mirapex ready in case. I'm tired enough right now that I could sleep, but I'm in between doses and I'd rather try it about 45 minutes after a dose in order to get the most sleep if possible.

Betty/WV · Post by **Betty/WV** » Sat Dec 12, 2009 2:44 pm

I get so confused in reading these posts about "circadiam rhythm" and changing of meds etc. etc. I have learned alot about RLS but still so much to learn. Even though I am sleeping better than I have for 30 some years, I still only sleep a couple hours at a time. I usually can go back to sleep after I have awakened. But even if the RLS isn't acting up, I still have a sleep problem. I guess I spent so many years dealing with sleep that my whole system is a wreck.

Wish you success, Ann, in resolving your problem.

BETTY/WV

Neco · Post by **Neco** » Sat Dec 12, 2009 4:30 pm

What's the maximum amount you're taking each dose, and total for the day?

The only thing I could think to do would be to double up your dose before you go to bed? Or at least wait until it wakes you up again and then take some more at that point to see if it at least dies down..

Post by **ViewsAskew** » Sat Dec 12, 2009 11:28 pm

I'm not sure, Zach, I think it has varied. I usually take 3 of the 4 allotted doses, but sometimes all 4 allotted doses. I have tried playing with timing and that seems to have helped some.

This weekend is the weekend off. The tramadol/Mirapex/Lyirca combo worked well enough last night, but boy am I groggy today! I think Lyrica must stay in my body a loooooooong time. Tonight I'll try it without the Lyrica. I won't sleep as well, but I'll be functional tomorrow. What a trade off, huh?

doety · Post by **doety** » Sun Dec 13, 2009 6:06 am

Ann: Good grief. You know I don't follow the postings consistently. Sometimes RLS is so awful I can't sit down and see what's going on. I've tried to read this post all the way through. You were having a terrible time, had an appt. with Dr. B and now you're off Methodone? When you have time and patience, could you catch me up? You know I follow you! I'm doing 20 mg. of Methadone a night and 1/2 one of the .5 Klonopine tablets, hoping to reduce it more soon. I've decided to not use pot; that may be making things worse. But my sleep has gone to hell the last couple of weeks. I feel like I'm getting only a few hours each night. It's affecting my brain, I feel fragile and not strong at all mentally/emotionally -- it's scary. I feel like I may not be able to work anymore. How come you're off the Methadone? I'll start getting on here daily to see your progress. I'm just so sorry for all your problems.

Post by **ViewsAskew** » Sun Dec 13, 2009 6:26 am

You're such a sweetheart, Doety. Thanks for your concern.

In a nutshell:

Over the last year, the methadone dose wasn't enough. I thought it was tolerance, as I've had to increase the dose three times and that's unusual according to Dr B.

Because I don't have a doctor here that "gets" this, I went to CA to see Dr B. We thought it was tolerance and that if I stayed off of it for awhile, it would work again at a lower dose.

Then everything got very difficult. The tramadol/Lyrica combo wasn't enough. Then the RLS got much worse. I tried methadone after 4 or 5 days off...it still didn't work.

I went off for 10 days, using tramadol, Mirapex and Lyrica. At least I slept some.

Tried methadone, still didn't work.

Next, on to Levorphanol. It sort of works. I think the key is three doses prior to sleep, not one or two.

But, because this is much more likely to create dependency, I have to stay off of it every so often. Maybe 4 or 5 days on it and 3 days off? Not sure yet. I took it 7 days the first time and am back on the tramadol/Mirapex/Lyrica combo. The Lyrica makes me very tired the next day, so I may have to ditch it. Without it, the Mirapex wakes me up constantly...so the time on this combo may not be much fun.

In a couple months, I'll try the methadone again. During all of this, I lost my insurance. Being self employed and using an opioid, that makes me just about uninsurable.

Per you, I think it might be worth it to come off the methadone and see how you feel. It could be that it is part of the problem. While it is a miracle for many of us, I definitely felt that I wasn't on top of my game while I was on it. I wasn't so bad that I couldn't work, but add not sleeping and the anxiety of RLS, and it could easily get that way. You also might have tolerance problems like I have had. Who knows why I have or you might be.

doety · Post by **doety** » Sun Dec 13, 2009 9:39 am

Thanks for the quick answer...but I hate it that you're up and about.
I guess we all desperately want one answer. Do you know if others have had this problem on Methadone...or if some are finding that it's fine?
The thought of trying to get off it terrifies me. Last time I tried messing with it, I just got no sleepfor weeks and weeks. I remember walking, walking, then at one point (I hate to say this) crawling around on the floor because I was tired of walking. I became suicidal; my husband hid all the old pills I was hoarding; the doc finally put me on Welbutrin. My doc at Kaiser just retired...guess I try to find another.
I will keep up with your story, even tho this just pisses me off! Go sleep my dear.

cornelia · Post by **cornelia** » Sun Dec 13, 2009 10:04 am

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

Neco · Post by **Neco** » Sun Dec 13, 2009 6:07 pm

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?

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