Suboxone - Living on the Edge

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
EeFall
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Joined: Thu Jan 03, 2013 4:11 am
Location: Washington State, USA

Re: Suboxone - Living on the Edge

Post by EeFall »

4 1/2 hours sleep last night and then I woke at 3:30am and had to get up. I feel better than yesterday for sure but I can't imagine what is going on. My tinnitus is now stereo as I have it in both ears so it isn't helping to make life warm and fuzzy. I am being careful with my right shoulder because it does need surgery but as long as I'm not overdoing it I think it may last until the fall or winter. My wife's broken leg (in two places by her ankle) from last May is back to almost normal. I was watching her yesterday and she no longer limps at all and she no longer has swelling. So it did take a year for her to get back to normal, now her left shoulder is giving her problems. Very similar to my right shoulder although she refuses to go to doc about it, I hope it just goes away.

EeFall
Posts: 1524
Joined: Thu Jan 03, 2013 4:11 am
Location: Washington State, USA

Re: Suboxone - Living on the Edge

Post by EeFall »

7 hours sleep last night! I wish I knew the secret to having Suboxone work well everyday. I did too much outside yesterday. We were putting in staggered 1/2 log edging on the walkway by front porch and there was a lot of digging involved. It I would have stopped there it would have been okay but then I also dug a hole for a plant my wife wanted there. I was okay until I went inside and was going to change my shirt. When I took my shirt off my right shoulder was very sore, I had to have my wife put another shirt on, I couldn't do it. She had me take some Ibuprofen and after a few hours it was back to normal but it was a close call. Today we are working on putting a platform behind the shed, it will be a challenge, I'll try to use my left arm much of the time. Beautiful day here today (and yesterday).

Polar Bear
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Re: Suboxone - Living on the Edge

Post by Polar Bear »

Even using your left arm will still put a strain on your right shoulder. Any chance of spacing the heavy work out a little bit.

And congrats on 7 hours sleep :thumbup:
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

EeFall
Posts: 1524
Joined: Thu Jan 03, 2013 4:11 am
Location: Washington State, USA

Re: Suboxone - Living on the Edge

Post by EeFall »

Living on the edge, things are so messed up I don't even know where to begin. Thanks WED :lol:

Polar Bear
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Re: Suboxone - Living on the Edge

Post by Polar Bear »

Keep us updated. :thumbup:
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

debbluebird
Posts: 2160
Joined: Mon May 21, 2012 3:27 pm

Re: Suboxone - Living on the Edge

Post by debbluebird »

It is a crazy way to live. I believe my symptoms are related to the inflammation in my joints. Now that I have five new joints, I must have less inflammation, since I'm sleeping better. I'm sure that at some point it will all get worse. I'm not pessimistic, it's just reality. I guess you just have to live life to the fullest when you can and feel good. You don't know what is around the corner.

EeFall
Posts: 1524
Joined: Thu Jan 03, 2013 4:11 am
Location: Washington State, USA

Re: Suboxone - Living on the Edge

Post by EeFall »

debbluebird wrote:It is a crazy way to live. I believe my symptoms are related to the inflammation in my joints. Now that I have five new joints, I must have less inflammation, since I'm sleeping better. I'm sure that at some point it will all get worse. I'm not pessimistic, it's just reality. I guess you just have to live life to the fullest when you can and feel good. You don't know what is around the corner.


My WED is all over the place even with my meds. I asked doc for a higher dose and communications broke down apparently and my meds at even lower dose (the script) has not come. I woke up last night from sleep and realized the script never came and I immediately sent note. Even so it is like the rumbling of a volcano before it blows, the meds aren't working well plus I know I am more dependent on this one than any in the past. A day without these and I would be in withdrawals, no sleep, and pacing 24/7 (not kidding). TGIF

ViewsAskew
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Re: Suboxone - Living on the Edge

Post by ViewsAskew »

Doety said that is was very difficult withdrawing from it. She was miserable.

In honestly think that once you get to the point you must use opioids - even though using nothing is brutal- that one of the best things to so is to use them something like 2-5 days a week, then use something else for 1-2 days. Either tough it or use a DA. Most of us do not augment in one to two days, even if we have issues.

Most doctors don't consider this - I am the one who suggested it to Dr B. But, honestly? In many ways, it was the best solution I have used of all the things I've tried. I never augmented, I never got dependent on the opioids, nor had any tolerance. When I use an opioid alone, I have tolerance quickly, needing to increase in just a few months. I managed to not need to increase my dose for 3 years when I alternated this way. If I didn't experience severe depression with the pramipexole, I'd still do it.

For some of us, opioid dependence is brutal, and tolerance is even worse. I'm so sorry it's so hard for you, EeFall.
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.

debbluebird
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Re: Suboxone - Living on the Edge

Post by debbluebird »

I may do that, if and when my WED gets worse. Because I will not increase my methadone. It's been three years since I started it. Anyway you cut it, it's awful.

EeFall
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Joined: Thu Jan 03, 2013 4:11 am
Location: Washington State, USA

Re: Suboxone - Living on the Edge

Post by EeFall »

You have a good point but some are more susceptible to dependence than others, and it depends on the medication. I could tell the first week I took Suboxone that it would be extremely difficult to quit. I think it is like some alcoholics or heroin addicts who try it one time and they are hooked. My doc called me today while I was at work and he doesn't want to give me a larger dose, so he isn't. I think it is political in that the daily news anymore is about how so many people are abusing medications.

I need this medication to have a chance to continue working, which means I need it at a dose that will work. 3 hours in bed tonight without being able to sleep and itchy. I'm also sick with a sore throat and a throbbing headache. My tinnitus is terrible, my shoulder hurts, and my body aches from the dang cold or whatever it is. I doubt that I would be able to take more Suboxone anyways because I am already at the threshold of being too itchy.

I'm out of options once again and when one of the best doctors gives up I can only wonder how much time I have left. This is brutal. I am at the pinnacle of my career and if I could just have a med that would work everyday I could continue to work and pay our bills but the reality is that it isn't going to happen. There is nothing he can do for me, it is just that I have too many health problems and too many side effects with the medications, and a bunch of busy bodies stirring up trouble about taking prescription drugs for pain. I'd like them to be in my position, I really would.

I still have a sliver of hope but besides that I'm out of options and will have to continue trying to work until the day I can't any longer. I'm almost too tired to be upset, but whatever.

ViewsAskew wrote:Doety said that is was very difficult withdrawing from it. She was miserable.

In honestly think that once you get to the point you must use opioids - even though using nothing is brutal- that one of the best things to so is to use them something like 2-5 days a week, then use something else for 1-2 days. Either tough it or use a DA. Most of us do not augment in one to two days, even if we have issues.

Most doctors don't consider this - I am the one who suggested it to Dr B. But, honestly? In many ways, it was the best solution I have used of all the things I've tried. I never augmented, I never got dependent on the opioids, nor had any tolerance. When I use an opioid alone, I have tolerance quickly, needing to increase in just a few months. I managed to not need to increase my dose for 3 years when I alternated this way. If I didn't experience severe depression with the pramipexole, I'd still do it.

For some of us, opioid dependence is brutal, and tolerance is even worse. I'm so sorry it's so hard for you, EeFall.

debbluebird
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Re: Suboxone - Living on the Edge

Post by debbluebird »

Is there any med that you have taken before, that you could add back, that maybe wouldn't cause you too many more problems ? Maybe even just taking it only part of the week ?

Polar Bear
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Re: Suboxone - Living on the Edge

Post by Polar Bear »

I feel so bad for you EeFall....

I am almost afraid to use the 'sinimet/levadopa'' words and don't know if this is a good suggestion ..... Everything I have learned says it is bad for regular use, but I just wonder if it would be possible to add it to your meds on, say, 2 nights each week, either together or separate, to try for a night's sleep.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Location: Los Angeles

Re: Suboxone - Living on the Edge

Post by ViewsAskew »

EeFall wrote:I'm out of options once again and when one of the best doctors gives up I can only wonder how much time I have left. This is brutal.


That's why I'm suggesting this. No doctors use it. But it works. I thought I was out of options when we tried this. Dr B is extremely knowledgeable, too. He didn't think of it - and I bet he's never suggested it to someone else.

Not sure how you can handle it now, though. It may mean a detox from it, then starting it and ONLY using it 2-5 days, then alternating with a DA. I am very similar to you in many ways. Pramipexole worked great - until I augmented. It was hell. I augment in 5-7 days every time I use it regularly. But, I used it for a long time without issue when I did this. Methadone worked well - but I needed more all too soon. I started at 10 then 12.5. then 15, then 20, then 25. But, when I alternated it, I not only didn't need an increase, I actually decreased it from 25 to 20!

Because I augment so quickly, I had to alternate ever 2 days. I eventually used methadone 2-3 days, pramipexole 1. But, that was only because of the depression from the pramipexole. If it didn't cause that, I'd have taken it 2-3 days and methadone 1.

Who knows - it may not work for you. But it is an option - and one your doctor likely doesn't even know about. It's just not something they do with these drugs - though I'm not sure why not. Seems to me it solves so many issues with both drugs.
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.

EeFall
Posts: 1524
Joined: Thu Jan 03, 2013 4:11 am
Location: Washington State, USA

Re: Suboxone - Living on the Edge

Post by EeFall »

debbluebird wrote:Is there any med that you have taken before, that you could add back, that maybe wouldn't cause you too many more problems ? Maybe even just taking it only part of the week ?


I have a large ziploc bag of medications from the last couple of years including mirapex. I will give mirapex a try first if I have to go it alone and maybe some of the others will help temporarily too. Kratom isn't powerful enough by itself anymore although it has the effect of making me feel good despite no sleep so I might start taking it again too. I have enough of that for years of use and it is still legal. Speaking of legal so will mj be legal in July here but already no authorities are giving out tickets for mj use. It wouldn't hold up in court. It does help some but it also is like having to get sloppy drunk and that wouldn't work for having a career or living a normal life.

Polar Bear mentions levadopa but I have never been able to take it (I have some though), it makes my RLS much worse almost instantly (which seems strange to me).

ViewsAskew's idea may work and maybe I can experiment with taking mirapex a few times a week in place of Suboxone, I guess it wouldn't hurt. The only thing is that the reason I am off many of these medications is that it changes my personality into an Ogre (and not the lovable Shrek type for sure). Even Suboxone does that to an extent.

Awhile ago my wife and I were watching all these movies I haven't seen, some going back several years, and I asked her why we hadn't seen them and she said I hadn't been interested in doing much of anything for a long time. Without sleep I am like a zombie and finally things were going good for several months and I began to want to do things again.

cornelia

Re: Suboxone - Living on the Edge

Post by cornelia »

I wonder too why doctors don't think of advising to rotate opiates for a few days with a DA for a few days. It is strange though that dr B advises in his books exactly that but he doesn't act on it (I think); he calls it mini drug holidays if I'm not mistaken.

Severe RLS patients are difficult to handle for neuro's and the suggestion to rotate every few days might be too much time-consuming for them because they have to guide them in their efforts. It might also be that this is only for patients that are well versed on RLS treatment and this can be too difficult for many patients. I don't know.

Corrie

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