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 Post subject: Discouraged...
PostPosted: Fri Mar 19, 2010 2:50 am 
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Hey all,

I don't know if anyone has any answers for me, but i'm just sorta bummed out and want to talk.

I wrote on the "Induction" forum about my surgery and the trouble i was having with my pain pills because they weren't strong enough. It was a hellish week, in pain from my surgery and low-level withdrawals every four hours, and fear of tylenol poisoning keeping me from taking enough meds, etc.... most of you probably know the drill.

It was very discouraging to discover how very high my tolerance was, because of the Sub. I related how quickly and easily i'd tapered down to 6mg and held there, then to 2mg for several days before quitting about four days before my surgery. I talked about how happy i was to have tapered so much, so fast, and how bummed out i was to find out that i hadn't really accomplished anything special because the difficulties don't start until you get below 2mg. Then on another thread i talked about how happy i was to discover that people were actually getting down to the .2mg range with the liquid taper, and how it gave me hope that i'd be able to do that too. But all i wanted at that time was to be stable again, and to get some sleep, and so i went back on the Sub.

Well when i started back up i thought there was no sense bringing my tolerance back more than necessary, and tried to reckon about how much Sub would be equivalent to the Percocets i was taking, and only take a bit more than that. I figured a 5mg Percocet to be approximately equal to .2mg Sub, and since i was taking up to 80mg oxy/day (16-5mg tabs, and yes i know that's too much APAP), that worked out to about 3.2mg of Sub. So i started with 2mg and it did absolutely nothing, didn't even touch my w/d symptoms. So i kept bumping it, trying to find a happy medium, and ended up taking 6mg that first day but not feeling a whole lot better for it. The next day i tried the same amount, and still felt crappy, no sleep, restless, messed up sinuses and panic attacks.

Long story short, i finally got tired of feeling miserable and off-balance and decided to take my whole 16mg. It took me two days of that before i started to feel right, and i'm still not 100% because i'm still not sleeping.

Sub is just really weird stuff and i'm having difficulty figuring out how it is really affecting me, vs. how much my discomfort and sleep issues might be owing to all i been through in the past few weeks. I know that i was previously able to cut down to 8mg or less on a fairly consistent basis, because i've got a load of spare pills. But to be back on 16mg... well it's just a bummer and .2mg or even 2mg just seems a really long ways from here, if i can actually do it at all. Plus i got the stopped-up plumbing and drowsiness that goes along with a high dose... again.

My wife theorizes that the surgery trauma and the subsequent week of pain and misery just knocked me off my equilibrium, and that maybe once i get stabilized again i'll be able to easily taper again, since i did it before. But now i'm sorta wondering if i wasn't fooling myself about my tapers because of the long half life. I don't really remember but i'm kinda thinking maybe when i was down to 4-6mg i was also taking 8-12mg once in a while, to compensate. I thought i was genuinely putting the stuff under my control and accomplishing something, but now i'm notso sure.

I mean for instance if the half life is 36 hours and we take it daily, then wouldn't it be accumulating over time, so our blood levels are higher than our dosage? And if i was bumping my 4-6mg doses every three or four days, then i was maybe compensating for withdrawals? AND finally, why the heck do i seem to need such a hugemongous dose as 16mg, just to be OK? It does help with the pain, and for that i am very grateful, but that is not why i bumped it so high. Or so i don't think... i could be wrong even about my own motives.

I guess i'd just like to hear from others, that they really did lower their dosages down to 2mg without a whole lot of hurt, because from what i've read that seems to be the low end of the scale before it starts to get uncomfortable. I mean yes, i've read some of your stories but i'd like to know if you've got something special going for you, to allow such a dose reduction without too much misery. Or, if you're a withdrawal wimp, but tapered to 2mg anyway, i'd like to know that. Honestly i don't know where i am on the scale of wimpiness, i only know that when i went 24 hours to re-induct on my Sub, i darn near went crazy. I cannot cope with that restless leg syndrome, because it ain't only my legs it's my whole body, and if i could've unzipped my body and dropped it on the floor to escape from it, i would have done.

Or conversely, i guess if anyone has bad news for me and finds it difficult to live without 12-16mg, then i should need to hear that too. I'll find out myself, exactly what my body thinks, like i said once i get stabilized and the pain abates, but meanwhile like i said i'm just feeling bummed and discouraged and want to hear from others about their experiences and/or opinions about what might be going on with me.

Thanks,
- joe


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PostPosted: Fri Mar 19, 2010 3:23 am 
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Joe,

I totally feel for you right now and completely understand the emotions that go with this. I have not cut down to 2mg before. I do think you were compensating for withdrawals if you were taking a full dose every few days or so. I also totally understand feeling comfortable only at the higher dose of 16mg. I know people have said it doesn't make a difference due to ceiling effect but my doc has said ceiling effect is at about 16mg so it makes sense to me why that is a comfortable dose. When I went from 16mg to 12mg I didn't like it. It wasn't like I "couldn't" do it, but I didn't feel right. I COULD tell the difference.

In terms of your need for a high dose post surgery, I definitely think it has something to do with the half life. After my surgery I was taking 65-80mg oxycodone per day (yes too much) in order to control the pain. I actually ended up vomiting from all of it. I think when you go off sub for a short time to have surgery, and then take painkillers for a while (week or two) it is like you throw your body right back into a high tolerance just like before the sub. My tolerance clearly decreased from how much oxycontin I had to take every day before sub, but after surgery it didn't take long for my body to require more to relieve pain. If you were in a position where you would have been in suboxone withdrawal had you not taken the painkillers for surgery, then it doesn't surprise me AT ALL that you went up in your sub dose going back on. You are trying to relieve pain AND cravings. Two things you probably weren't having much of prior to surgery when on your low sub dose. If you wanted to decrease your sub even further post surgery, then you would have to really allow the withdrawals for several days and no sub and no painkillers (in my opinion). That would be almost impossible given the pain factor since withdrawals cause you to be more sensitive to pain anyways. You would really have to get all this stuff cleared from your receptors and feel the rawness for a few days before a small dose of sub would work on withdrawals AND pain.

Note: My new doc says that these days, she doesn't even have patients go off suboxone for surgery and she just has them decrease the dose a little and then gives percocet they can take with the sub to kill the pain. When pain is gone they go back to normal sub dose. She indicated that it had been working quite well.

Anyhow, I don't know if any of this helps or not. The most helpful thing I can offer is that I understand the confusion with it and frustration. I have felt that feeling and it sucks. It seems there are no clear answers.

Take care.
Cherie


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PostPosted: Fri Mar 19, 2010 9:33 pm 
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Thanks for your kind reply!

Jackcrack wrote:
I think when you go off sub for a short time to have surgery, and then take painkillers for a while (week or two) it is like you throw your body right back into a high tolerance just like before the sub.


Ya think? Because i got the impression it was all from the Sub, mostly because my pain pills didn't work. I don't know how long tolerance lasts, but i've heard of folks going a really long time before full agonists will work for them again. And i've seen 5mg of oxycodone sensibly compared with .2mg of Sub, so it surprised me that i wasn't OK at 6mg. Weird...

Agonist... something that causes agony? ;)

I thought you were one of the folks who had tapered to 2mg. I gotta get better with names. It'd be really nice, even if it might not be applicable to me, to hear from someone who was a withdrawal wimp like me but still tapered to 2mg. I could almost live with that, even if i couldn't get any lower.

Jackcrack wrote:
My new doc says that these days, she doesn't even have patients go off suboxone for surgery and she just has them decrease the dose a little and then gives percocet they can take with the sub to kill the pain.


I think this might be a secret that we're not supposed to know about. My dog ripped my nose off a few months ago, and in the emergency room they dropped two Percs in me and they worked! Not very well and not for very long, but even so.... and i was able to replicate the experiment later. So at least for me, the Sub doesn't block all my opiate receptors. Albeit, i suspect that's a function of dosage, as you say your doc tapers people a bit, so i wouldn't expect it to work against 16mg. Which is OK, apart from the constipation and the bummer, i'm good and i'm not in such bad pain.

I'm just looking for encouragement i guess, because like i said i was really excited about the long slow taper thing, and to be doing the exact opposite is, well, a bummer. I guess bummers aren't something to get excited about considering some the misery people relate on this forum, but even so i was all hyped thinking i had a new chance for a new life, and it's not starting out the way i'd hoped it would.

Thanks again,
- joe


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PostPosted: Fri Mar 19, 2010 9:41 pm 
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Joe,

I DO think that when you take pain killers on top of the sub you throw yourself right back into the mix. BUT...I also think that you will be able to go right back down again. Just not when you have pain maybe. Just get yourself through this pain thing and then as the pain subsides, taper on the suboxone. I don't think it will be too bad.

There were a few times where I withdrew from oxy and then after a few days, I would get hooked back up again. I always thought I would need less, but then what I normally would have taken in one dose wouldn't be quite enough so I would have to take a little extra to kick start things. Then I could go back down to what I would normally take. That is where you are in my opinion. If you were on 2 mg, it might be that going right back to 16mg is a bit much, but you also have pain on top of it. So do it for a day or two and then you would be surprised and I bet you can go right back down to 2mg. It is also possible maybe 4mg and then the next day 2mg. I think it is the lack of build up in your system so your body is freaking out. As the pain subsides, decrease the dose and I bet you can do it. I am sure you can at least get below the 16mg pretty easily.

I am trying to be encouraging but I also believe what I just said. You can be the guinnea pig :)

No really...I do care and I wish I knew more about it so I could speak with some level of authority on it. But I can't.


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PostPosted: Sat Mar 20, 2010 3:59 pm 
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Joe: I think you are paying way more much attention to dose than you really need to. Now, having said that, I also notice that you figured 5 mg of oxycodone to be equivalent to 0.2 mg of bup. Where did you come up with this? From what I can tell, you are about 50% too low in that calculation. I used a drug calculator at:

http://www.medcalc.com/narcotics.html

This calculator crossed 5 mg of oxycodone to 0.4 mg of bup. Presuming that this calculator is accurate (which I believe it is) you would have been low by twice the amount to begin with. In other words, when you thought that you needed 3.2 mg of Suboxone as an equivalent to the amount of oxycodone that you were taking, you really needed 6.4 mg. From what everyone seems to experience, and from everything that I have read, there seems to be a significant difference in 3.2mg of bup over 6.4 mg of pub.

So, you were probably too low. However, going beyond that, you really seem to be hung up on the number of milligrams you are taking. If the drug is working for you; if it is taking care of your cravings; if it is keeping you out of withdrawals; why does it matter so much if you are taking 12 mg or 6 mg or 2 mg to make that happen? I see so many patients here that are really fixated on the daily dose that they take. It really seems to be a huge deal to them. Everyone wants to get to a lower dose. Why? Now, don't get me wrong, if cost or side effects, etc. are the issue, then by all means, make the changes that you need to make. But again, if the Suboxone is working like it is supposed to, with little or no side effects, I'm not sure what good comes out of obsessing about the daily dose that is being taken. It's just a number. IT'S A NUMBER!

That's the way I look at it, anyhow. Hopefully it will provide a little different perspective for you to consider.


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PostPosted: Sat Mar 20, 2010 5:32 pm 
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Hey Joe,
I can't help you with the logistics of tapering down, because in 15 months I've never done so. I guess I didn't feel the need to. I take 24 mgs a day in 3 doses and part of the reason for that is I also use it for pain control. I can't quote a source but I seem to recall that for pain control suboxone lasts about 6 or so hours. My dosage is considered extremely high to some people, but not for my needs and not for my last two doctors. I have no additional side effects, not even tiredness.

So when it comes to dosage amounts, I agree with Don about trying not to focus on the number. You probably need your body/brain to equalize after the surgery and medication changes then you can settle on what feels right for you.
Stay with that dosage for a few weeks and then go down up to 4 mg. In reading taper threads on this site, the people most successful in tapering down seem to be the ones who allowed more time in between drops in dosage.

I'm sorry I can't give you more or better words of wisdom. But perhaps a different person's perspective can help in some way? 16 mg is just a number, it's not necessarily high or low, it just is.

Please keep us posted on how you're feeling about all this.

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PostPosted: Sat Mar 20, 2010 5:33 pm 
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Donh - I might be wrong, but I think Joe wanted to get off the suboxone and now he is back up again so he will have to start all over tapering (that is what I thought but correct me if I am mixing up people and/or posts).


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PostPosted: Sun Mar 21, 2010 5:45 pm 
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Jackcrack wrote:
I think Joe wanted to get off the suboxone and now he is back up again so he will have to start all over tapering

It was only about six months after i started taking Sub that i dropped a wheelbarrow full of dirt off the back of my truck and on to my knee. Ever seen a football player squirming around on the field like a worm, makes you wince just watching him? That's what i did. Didn't take myself to the hospital like most other people can, because i reckoned i'd be given pain pills and told i needed surgery. Couldn't take the former, couldn't afford the latter. So i spent the next five years, in various levels of pain that no professional would address because of the Suboxone. Just like, blank stares and shrugs, at my suffering.

Over those years i've experienced all the goofy prejudices and mistrust as everyone here is familiar with, but the worst of them all was worrying about obtaining my medicine. I ran up my credit card on Sub prescriptions, now my credit is ruined. Every once in a while there'd be some sort of miscommunication or bureaucratic screw-up, and i'd find myself stressed out on a weekend, wondering if i'd get my medicine at all or if i was gonna be suddenly plunged into hell, losing everything i've gained in the process.

A few months ago my dog ripped my nose to shreds and in the emergency room they gave me two Percocets. They helped but not for long, and i had to wait for the plastic surgeon to show up in the morning. When i explained that the Percs worked but why they didn't work so well, i was refused ANYTHING more for my pain and stress, and had to get sewed up with only local anesthesia and not even a valium or something.

The last three months before my surgery, every. single. time. i went to get my refills there was some sort of screw-up involving the doctor, the pharmacy, and/or my insurance company, which at the bottom line meant i couldn't get my meds and so i was scared as hell. It all worked out, but it was almost like a message telling me how much my life is dependent on a drug that i may or may not have at any given time.

The whole surgery thing, the pain pills that didn't work, the withdrawals because the pain pills didn't work, the lack of sleep, the whole bit about getting back on to the Sub without making the w/d's worse, even if i was irrational about it, just felt like the last straw.

I've got a new knee now, that i've been waiting for a very long time. I was aiming for a new life to go along with that, with more freedom. My *seeming* success with my tapers, combined with the success stories i read about the liquid tapers, made me very excited and optimistic about gaining this new life and freedom. So being back at 16mg and still unstable and unbalanced, is depressing. I cut down to 12mg yesterday, but that's not so exciting to me because my heart isn't in it, and i was relying on my heart to help me get where i want to go.

I'll probably get over it. And i'll probably find myself again. I'm mostly just venting, i hope that's OK.

Thanks for listening.
- joe

PS i think that i got that Sub-Perc comparison by inference, from bluelight and other places, because in Europe they sell .2mg bupe as "Temgesic" and prescribe it about the same as standard opiate analgesics, only obviously taken less frequently.


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PostPosted: Sun Mar 21, 2010 6:23 pm 
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WOW! I don't blame you for feeling depressed or wanting to vent (which is totally acceptable to me :) )! I would be depressed and want to vent too. It is like your world was all pointing to getting off the suboxone since it has been such a hassle and you lining things up just perfect for yourself thinking it was all meant to be right? So it ought to all work out. Only to find it feels a whole lot LESS meant to be and realizing it is going to be a struggle after the surgery. Ugh!

I have to admit that I went off 12mg unexpectedly and didn't expect it to be difficult. I needed surgeries anyways so set those up. In the back of my mind I thought if the withdrawals were severe then I always had surgeries and pain killers to help get me through it and if I could just give myself enough TIME off of it I would get through the worst and it would all be okay. I really do think the surgeries made it worse for me and it sounds like that made it harder for you too. After hearing your experience and looking back on things, I have to say that using the need for surgery as a "good time" to get off the suboxone or thinking I had to go off it anyways because I needed the surgeries was probably faulty thinking. Probably the need for surgery was all the more reason to stay ON the suboxone and wait to get off of it until painkillers and/or surgery wouldn't be part of the plan in the first 6 months off sub at least. Taking the painkillers makes it harder to stay off the sub in my opinion. For me that will never happen due to chronic pain issues.

I would like to say I hope your heart does a 180 but at the same time, I think it is sad that you feel like you need to get off the suboxone primarily because it has been such a pain in your ass. That kind of ruins the positive experience of it. If you still have to worry about whether or not you will go into withdrawals then that is miserable!

It was good for me to hear a little more of the background and I am sure you posted it elsewhere but good to know a little more about what you are going through. Sorry it has been so rough. Keep us posted though. It sounds like you may be teetering on making another decision so that is the best time to talk and "vent" in my opinion.

Take care!
Cherie


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PostPosted: Sun Mar 21, 2010 7:42 pm 
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So am I understanding this all correctly?: You went to the ER for treatment for an injury, told them you were on Suboxone, and they REFUSED to address your pain?? I've heard horror stories like that before, but it's still completely unacceptable. As far as I'm concerned that's just cruel and torturous.

If you do stay on the suboxone, you might want to go to NAABT.org and get some of the wallet ID cards. They have a whole Suboxone packet they'll send you. I carry them around with me as does my husband. I don't know if it will matter in the event of an emergency, but it gives me a (false?) sense of security.

Take care...and vent here as long and often as you need to. It's what we're here for.

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-I'm only responsible for what I say, not for what you understand.


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PostPosted: Sun Mar 21, 2010 8:13 pm 
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Jackcrack wrote:
It is like your world was all pointing to getting off the suboxone since it has been such a hassle and you lining things up just perfect for yourself thinking it was all meant to be right? So it ought to all work out. Only to find it feels a whole lot LESS meant to be and realizing it is going to be a struggle after the surgery. Ugh!

Yes, precisely in a nutshell and again, i thank you for listening. Have you taken counselor training? Cause i think you'd be great at it.

Hatmaker510, yes i have all of the documentation from all the official and quasi-official sources. At the time of that incident all i had was the card and i did ask the nurse to ask the doctor to go to the website, but it was of no use i don't think they even gave it another thought beyond "NO". None of it worked for any of the professionals i talked to prior to surgery, nor change the mind of my GP nor my surgeon, post-surgery.

Yeah... cruel. And at the time, tortuous. But you know it doesn't only make me angry for myself, but if i have these many bad experiences then thousands of people have similar ones and that makes me both outraged and deeply sad.

As Jackcrack said, for instance, her new doc will decrease the Sub dosage and then titrate the painkillers for surgery. That is a humane and practical approach. As i mentioned earlier, i DO feel percs on top of the Sub, i suspect i could take one right now on top of 16mg and know that i did even if it didn't do much good. I expect it would work all the better at lower dosages, and someone else actually advised me to try it, albeit not before my Percs were nearly gone. So i might not have had to suffer after surgery at all, neither for pain nor withdrawals.

It's owing mostly to busy-body moralist government stuffed shirts drafting one-size-fits-all rules, and a creating a climate of fear for our doctors. We've really got a long ways to go. I tried to stand up for myself, but that's a fine line to tread without being tagged as belligerent. What we really need are educated medical advocates, who might be taken more seriously than us "junkies".

Meanwhile all we have is dishonesty, i.e. failing to mention our medications. I haven't tried it yet, because i hate being dishonest, but after all of this i dang well ain't being victimized anymore.

- joe


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PostPosted: Mon Mar 22, 2010 12:00 am 
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Joe,

Thanks for the compliment. I have a BA is Clinical Psychology but that feels like another lifetime ago and I don't remember a whole lot from back then it seems. I just find that it is the greatest priviledge in the world when someone is willing to tell you a little about themselves or open up about what they are going through or to ask for help or even want to vent to you. If someone is giving me the honor, I figure the least I can do is really try to HEAR what they are saying. I enjoy making connections with people and enjoy it more if I ever have anything I can offer to help. I have an extremely hard time asking for help and an even harder time accepting empathy. But I know what it is like to reach out for it and be ignored or have it denied. I would hate to ever be guilty of doing that to another human being. I have been told by several people I am good at hearing people and understanding where they are coming from or what they must be feeling, but I suppose that is because it is truly important to me. Thanks again. I wish you the best and am glad you are letting all of us help see you through this.

Cherie


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