And, now my turn

For everything and anything else not covered in the other RLS sections.
ViewsAskew
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Post by ViewsAskew »

MMT patients are often at doses exceeding 200 to 250 mg, too, and spread out throughout the day. It makes our 5-30 mg seem very tiny!

Not that it can't happen - one of members went through a lot of problems she attributed to withdrawal from methadone at a low dose and taking it only once a day.

I've maintained, for several years, that every day I feel so cruddy in the afternoon because I'm going through withdrawal each and every day. I wake up feeling enh and it goes downhill from there. By the time I take my nightly dose, I'm feeling pretty rotten. My brain WANTS that drug. But, after I take it? I'm ready for my day to start....except it's 9 PM!

Maybe that is why is wasn't so difficult; simply because it isn't at the level - for my body chemistry - that my brain had so much to withdraw from. It already does that daily.

Of course, no science to any of that - just my supposition based on how I feel.
Ann - Take what you need, leave the rest

Managing Your RLS

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Polar Bear
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Post by Polar Bear »

Off all the posters I reckon I know the least about pharmaceuticals, but I wonder if a slow release of some sort would help any daily withdrawal.

I have no doubt that this has been covered somewhere, and likely I am way off beam of this.

But, know that I am thinking of you as you go through this.
Betty
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Neco
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Post by Neco »

It will potentially ease the process in some people, but I think this entirely depends on the type of drug and the amount being released over how long a period of time.

ViewsAskew
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Post by ViewsAskew »

I am a very despondent person tonight.

10 days I went without any methadone. It wasn't so much hard, rather I still don't get good sleep with Mirapex/tramadol/lyrica combo, so I am yearning for real, deep, uninterrupted sleep.

Alas, it's not in the cards as of yet.

The first few days with the combo, I used 200 mg tramadol total. The middle days I needed 300. By the last two days, 400 wasn't enough along with the other two things and I was having stronger daily RLS.

So, I was very ready to switch back to methadone last night, hoping for the least that I'd be able to use 20 mg and all would be fine, or the best that I could use less.

Unfortunately 20 mg of methadone did little more than take off the major edge, but left me unable to sleep, just as it had prior to starting any of this. It was as if I'd done nothing for the last two weeks. At 2:30 AM, after it was clear it was not helping (and now starting to get worse), I took Mirapex. It still didn't allow me to sleep. At 7 AM, I took 5 more mg of methadone in hopes of sleeping some. I managed a few hours of highly interrupted sleep.

Dr B thinks I'm augmenting on the tramadol but has NO idea why I am not responding to methadone at all as most people do. I'm apparently some weird outlier.

I'm tired, I just want the RLS to be gone, and I want to SLEEP.

His next idea is to try levophenol for a few days to see how I respond. If it works, he thinks maybe we can use the levorphenol for a few days, then the tramadol/Mirapex for a few days and keep alternating between them.

I want to cry.
Ann - Take what you need, leave the rest

Managing Your RLS

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Betty/WV
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Re:"and now its my turn"

Post by Betty/WV »

Dear ViewsAskew: I've been reading your posts and I feel so bad for you, and the rest of us RLSers too. This demon, RLS, is so confusing. And I get so frusterated. I have learned so much about RLS but yet realize I know so little. And when I go to my doctor I realize how little he knows. I just received my "NightWalkers" mag. and it has a wonderful article about augmentation and I took it to my doctor and he made a copy. Because he knew little about augmentation.

Anyway, I hope you find a solution and get to feel better soon. When I read what is happening to you and read other posts of people with problems similar, even though, right now I'm not doing to bad, I wonder what is down the road for me also.

Take care and you are in my thoughts and prayers. Hope to hear good news about you soon. BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

Polar Bear
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Post by Polar Bear »

Ann, my heart goes out to you.

You have tried so hard that I could cry for you, and with you.
On this board, you are someone we look to who is always full of wisdom and encouragement, and it is so unfair that you have to suffer so.

Goes to show what a twisted and nasty condition this rls is, it doesn't hardly give us a chance for meds to work easily.

We all feel for you at present and none of us know what the turn of the road will bring. I hope your next turning is a better one.
Betty
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Neco
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Post by Neco »

There is a good chance Levorphanol may help you. Its really super strong stuff, but does carry the habbituation risks and withdrawal symptoms as Morphine (not fun, but can't be worse than Methadone I guess).

http://en.wikipedia.org/wiki/Levorphanol

I find it rather interesting that it is a prototype for other drugs, especially Dextromethorphan. But if my experiences with DXM are any indication, it may potentially help you, if not indefinitately, than at least for a while.

I have noticed on several ocassions that when taking my DXM after I have apparently confused myself into thinking I have taken my first Methadone pill, I usually go for an hour or more without noticing.

Its happened on several ocassions as well, and I do recall from my first DXM experience, where I had no RLS for almost 2 days, long after the trip was over. If any of the RLS relief was inherited from Morphinan (Levorphanols parent drug) then that would probably be a good thing for you..

But of course this is all theory and conjecture from a mad scientist.. :?

You might ask Dr. B about its SNRI and SSRI properties and if that might interact with the Tramadol, however.

SquirmingSusan
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Post by SquirmingSusan »

Oh, this is just so hard for you, Ann. What a horrid condition this can be. I hope you figure out something that works, and soon.

I keep thinking of weird options of things to try, 'cuz that's what my brain does. Feel free to ignore these if they 're not helpful.

I wonder if something like a long-acting DA, like cabergoline, could help you for a while. I know that one is ridiculously expensive but maybe there are others. And if something like that worked all by itself, maybe you could do a run of LDN and really kick those opiate receptors into gear and up your natural opiate system...

Dr. B was pretty excited about the possibility of the new pre-gabapentin drug being approved this month, but I suppose ever it it gets approved it would be expensive.

I'll light a candle for you and send good thoughts your way. Hang in there.
Susan

Neco
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Post by Neco »

Isn't that linked to heart valve failure? Or am I thinking of something else ?

ViewsAskew
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Post by ViewsAskew »

Thanks, everyone. I'm truly unhappy and am finding it hard to deal with it. I normally do not get into funks - and if I do they last for a few hours, not for days - so that in itself is annoying! I do not like feeling this way (emotionally, let alone the RLS crap).

I was supposed to call the office this morning to have them overnight the script to me...but I was sleeping off and on - more off than on, but I was trying. I got up in time, but after just one day of methadone, I noticed the plumbing was a bit stopped up, so took some stool softeners after I brushed my teeth.

I know I can't take vitamins on an empty stomach or I get nauseous. If I don't eat quickly, I actually vomit. But, these weren't vitamins, so I did it.

I've spent the last 45 minutes quelling the nausea; thankfully that seems to have ended. Now, if the RLS would stop! Not too much to hope for, is it?

Of course, I missed the window to call his office, so have to wait to this afternoon. I hope that doesn't mean it takes an extra day to get here. I doubt it, but in this black mood I'm inclined to see things from the glass empty side.
Ann - Take what you need, leave the rest

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Polar Bear
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Post by Polar Bear »

Ann, The way things have been for you recently, you are allowed to have a little time to see the glass half empty rather than half full.

But can I tell you that when I read your last post you gave me a little giggle - please don't be offended at me having a giggle when you are feeling so poorly - its really a giggle at myself for being so stupid.

I read where you said 'I noticed after one day of methadone that the plumbing was a bit stopped up' and just for a moment I imagined you were under the sink sorting the pipework !!

I just wanted to share my smile with you, and hope you (nor anyone else) is offended at my levity in this serious thread.

Here's hoping your script comes through today.
Betty
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ViewsAskew
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Post by ViewsAskew »

Not at all offended PB. I can see how that would provide a giggle.

My best friend called moments after I posted; she must have ESP. After a bit of a cry and sharing stories (she has lupus), I regained my sense of humor. Not sure how long I'll have it, but at least for the moment it's back.

I called the doctor's office once I finished talked to her; I had to set up a fedex account because this is a Schedule II drug and he doesn't trust sending it through the mail and he can't call it in.

They won't pick it up until tomorrow and they'll deliver it to me on Friday. Not sure what I'll use in between as I have no tramadol left and I am afraid to use the Mirapex any longer. I used it last night without the tramadol and it wasn't enough, so at about 2 AM or so, I added another .0625 mg, to put me at .125 total. It didn't take it all away, still, so I am concerned that the Mirapex is part of the problem right now, but it could be the tramadol, so feel between a rock and hard place: the methadone doesn't work and the other three drugs I have either don't help (the Lyrica) or may be making it worse.

Gee. Talk about lousy odds!
Ann - Take what you need, leave the rest

Managing Your RLS

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Neco
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Post by Neco »

How high did you go with Lyrica ?

I think It took me around 350mg to begin seeing a difference. But that seems kind of high for Lyrica too.. I don't remember, it was so long ago :oops:

ViewsAskew
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Post by ViewsAskew »

I think Dr B said I could go to 300 mg of Lyrica, but I could totally be wrong; I got to 200 at one point and it still was doing nothing for the RLS. It does help me fall asleep and since the methadone, tramadol, and Mirapex all make me more awake, that was a good thing.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Neco
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Post by Neco »

In any case, I hope the new stuff works out for you. Just be proactive and take the least amount possible, and keep in mind not to shoot for total relief since you have been aggravated over the past few days and likely require an artificially higher dose.

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