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Old 02-13-2009, 06:23 PM   #1
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Anybody else hit a "wall" with their oxy tapering?

I posted this on the chronic pain board but was told this might be a better place.

I was on this board several years ago getting support through tapering off pain meds after numerous rehabilitative surgeries and cancer and it was very helpful. So I am back again. Without boring you with the details of my injuries and illness, the bottom line was I ended up with a pain management doctor who made be think I would be on pain meds the rest of my life and that there is no ceiling dose and just kept upping my dose and adding meds whenever my tolerance went up. Before I knew it I was on ridiculous amounts of multiple narcotics, miserable and still not getting adequate pain relief. I eventually left that doctor and sought help from a great doc who assisted me in tapering. I just didn't want to be controlled by the meds anymore and wanted to see if I could live without them. It took a year to come off. The doc asked me to give my body time to build up its natural pain killers and try different forms of alternative treatments and sure enough, I slowly started feeling better and realized I cold live without the meds. That sounds like it was just that easy but it wasnt. I struggled a lot with the cravings and mental dependency but in the end, got through it and did well and was off for over a year. I had realized that my pain had really become tolerable over time but needed to get off the meds to let my body heal itself and build up the natural resistance. So I was always concerned about what would happen when I had to get my last 2 surgeries, especially since I was now in a different state and with different docs and I really didn't want to start the cycle over again. The good thing is I at least found a decent doc who listened to my concerns and was careful in managing my meds and did not let me go past a certain dose or add any additional breakthrough meds on my request. And Once I was done with the surgeries and felt that I was healed enough and ready, I started tapering which was about 4 months ago. I was flying off of them at first, doing well with no side effects. I was cutting back about 5% every 3-7 days sometimes more sometimes less but always making progress with each prescription fill, which was my promise to myself and my doc. I was feeling pretty good about myself and pretty good mentally and physically. That was until I got past the half way mark. I went a month with no progress then 2. I tried to taper, and when I did , my pain levels were so bad, I couldn't do it. And I was just overall feeling crappy even though I really didn't come down as much as I had before. (I was literally breaking of little pieces not even equal to 2-5mg and it was too much it seemed both mentall and physically) It is weird that I don't remember some details of the last time I tapered, I am sure that I had this problem but I don't remember it being this bad. My back hurts so bad that my kidneys feel full and I cant sit up straight. Every muscle in my body aches. I am beating myself up for not making progress this month, and I am wondering why I can't seem to get past this dose. Has anyone else experienced this "wall"? How long will it take for my mind and body to deal with this pain a little better and let go of the need for this level? I am also dealing with my hormones restoring as last time they stopped producing because of the radiation and that happened again this time. I feel like I am going through menopause and I am only in my 20's. I don't remember this happening last time, I mean it was hard don't get me wrong, but I always made a steady progress with a few backslides here an there. Does it get harder the 2nd time?? Any advice? Thanks for your time and support.

 
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Old 02-14-2009, 06:03 AM   #2
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Re: Anybody else hit a "wall" with their oxy tapering?

Makai808

Hi.....welcome

My name is Lyn and I am a 57 year old female.
Your story in lots of ways is very much like mine. I am not sure if I can help you at all but just want you to know that I am here for you if you have any questions or I will be here just for support.

I am in chronic pain also. I have neck, shoulder and head pain and also an ongoing headache since 2003. I was told after trying everything humanly possible for this pain by a "TOP Neurosurgeon" that he could "HELP ME". He said that he saw on my xrays that on C5/6 6/7 (Cervical Spine) that I had bone spurs, arthritis and bulging discs. I had a Anterior Cervical Fusion and Discectomy with donor bones and have titanium pins and plates in my neck. I woke up after the operation and still had the exact same pain and never got any better. This was in 2003 and my headache was also still there.

The Neurosurgeon then said "well I guess you have Fibromyalgia" which I did not want to hear!!!! Well in the hospital they gave me morphine and percocets for pain. 6 weeks later or so they changed it to Vicodin because that wasn't as strong and he didn't want me to get addicted. I took that for quite a while and it really didn't touch my pain but I kept on taking it. I went back to my GP after a while and the same exact story as yours as the time went on, he kept on adding and adding different things and the same as you, no ceiling on how much. On my drug plan I could get 365 Vicodin in the mail and when I got this out of my mailbox I felt sick!!!! Anyone could have taken it easily but that is how my plan worked. Also to look at this huge bottle of pain killers made me feel ill. I never took an extra pill and never even took one 5 minutes before I was due to take one. My doc also added "xanax", I was on Vicodin, Oxycodone and Ambien as I never slept and haven't slept properly in 20 years. The Vicodin was eventually only for "breakthru" pain in the afternoon. My system (as I wasn't taking enough for my pain or my body) all of a sudden went into withdrawl automatically and I didn't realize it and either did my doc. He prescribed "Re-quip" for Restless legs. I suffered with that for 6 months until I realized one day that it wasn't Restless Legs it was "withdrawl" and that my pain body needed more!!!!
I automatically decided (like you) that I didn't want to live on Opiates (Pain Killers) any more and with the help of an "addictionologist" I was checked into a "Withdrawl Clinic" in a large hospital. (another whole long terrifying story).
They let me go "cold turkey" 24 hrs. which I "thought" was the worst hell of my life. After that they put you on "Suboxone" and that takes your cravings away for the opiates and it calms you down along with several other prescription drugs they give you to calm you down. You think at that time (and then they let you out and you have your suboxone to take) that you are "drug free". THE HELL IS YET TO COME!!!!!!
When they give you something in the clinic you have to take it because they are trying to help you. Little do you know, until I came home and researched it that you are trading one drug (in your case oxys)for another very addictive drug.
Anyway I am making my story longer. I too with the help of the addictionologist tapered down on the Suboxone. I went from out of the hospital 3 pills /2mgs each down to 2 pills 2mgs. per day almost immediately and with a few weeks down to one 2mg pill per day. I didn't feel any different and then went to see him every 2 weeks and we tapered down from there. Sometimes I didn't feel like I was feeling good enough to taper the next two weeks so he would keep me on the same dosage and sometimes I had to go up a bit.......so you are not any different than I was in that respect. Everyones body re-acts differently and you were on a lot of medication for a lot of years and you also had different health issues than I have. We are both going to be, (after going off of "pain killers"), in "chronic pain" and we both have to find something other than addictive medications, that will help with our situations. Well just a bit further with my story and I will stop. (I hope I am not confusing you, I am not the best at writing)!!!!

I tapered down after only a few months to 1/8 of a pill daily to crumbs and I mean just a very tiny almost dot of a crumb. The last "crumb" I took was on Dec. 28 and on Dec. 29 my whole system went into "complete and horrid withdrawl". This lasted for over 3 weeks of pure hell, shaking, feverish, restless crawly horrible legs, diareahh (sp) I couldn't sleep for a second. I might have had 10 hours sleep in 3 1/2 weeks if that. I am finally feeling not so bad...but am in chronic pain and am working on several things with doctors and they all know that I do not want "addictive pain medications". I am now in the process of on Monday (next week) I am getting the "nerves in my neck burnt" or killed under radio frequency on one side only. I have had 2 sets of test shots (facet blocks) already done and it seemed like possibly it might reduce my pain by 40% or maybe even less. The nerves will grow back in after approx. 6 to 9 months and I will have to start all over again.

The reason I am telling you about "suboxone" is maybe someone will suggest you try that next as your tapering is getting harder for you. I think like what I went through that on the sub. near the end it got harder to taper and then when I went off it got worse. I don't know what it is like to taper off of oxys. as they put me on the sub. Some say on these boards that suboxone has saved their lives and that they didn't have as hard of a time as I did but....there are so many people that say the same as me....So read up on suboxone if they offer it to you. Know your facts and also at the top of the boards type in at the search bar "Suboxone Withdrawl" and you will see what people have gone through with that. My story is on there also!!!!

I am sorry this is long, I feel your pain and am here to support you and just know that some people have to taper longer or slower than others. You have been through soooo much in your short life and it isn't fair at all. There is apparently a recipe at the top of the boards for withdrawl and they say it helps a lot so maybe read up on that post. I know you aren't in withdrawl but when you go off completely I am sure you must know by now that you will have to go through some kind of withdrawl!!! (I don't want to scare you and I am not an expert but am trying to help as I have just been through it).

Take care and if I can help in any way please let me know. I am sending you a healing hug from one chronic pain person to another. These boards are fantastic and everyone on here is fantastic and they will answer your posts whether they can help or not, even just for moral support. Again take care!!!

Lyn

 
Old 02-14-2009, 07:36 AM   #3
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Re: Anybody else hit a "wall" with their oxy tapering?

Hello Makai

Just wanted to share a little with you as I, too, hit a wall here and there in my tapering off Oxycodone and then Xanax. It took me about 4 months to taper off the Oxycodone. Like you, the initial drops were bad, but not horrible. I also stayed at a 5-10% drop each time. I remember at one point about 1/2 way through that taper I hit a wall and stayed at a certain dose about 3-31/2 weeks before I could feel capable of making a new drop and sticking to it. That was probably my longest staying point. Each drop was a bit different... some were so very tolerable and some just torment.

Towards the end, even those small cuts in percentage are really big cuts in overall dosage. The brain starts sending out those search parties for any extra remnants of the drug anywhere in the body... muscles and bones included.. and the pain is felt. I had also gone into menopause because of radiation and can attest to the fact that any drop in hormones can make tapering even harder!

Please do not beat yourself up because of a wall! There is no set time schedule for the body and brain in restoring itself, but we can be sure it will occur in its own time schedule. I really believe that as long as we don't go backward... once a cut is made, it stays made... we are making progress. I think once you can put aside any ill feelings toward yourself about a wall happening... not your fault!... you will start to feel much more capable of making the next cut.

Be strong, you can do this, you will do it. Those aches and pains are signals of healing from the drug use, not just symptoms of withdrawal. All seems well and going along as normal as normal can be in withdrawal.

With all best wishes
reach

 
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Old 02-14-2009, 08:33 AM   #4
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Re: Anybody else hit a "wall" with their oxy tapering?

I feel so much better, thank you both for your stories and support. Just knowing that all this pain is progress, is enough for me. I think I remember you helping me last time I tapered. You told me how you were tapering crumbs and I remember going through that too lol It was amazing how crumbs had so much an effect.

I noticed menstrual cramping today which I hope means my body is getting ready to have a period again and that means I am making progress. I am also losing a little of my swelling and weight which happened last time too. I was getting a little discouraged earlier reading how some people were tapering off of 5 mgs a day and having trouble, one person took 6 months to go down 4 mg so part of that made me feel good because I have tapered more than that, but then part of it made me feel worse because I was on so much more than that (the last time I had gotten up to 180 mg of oxi 3 times a day PLUS Actiq! But I remember coming here and someone telling me there were on almost 1000 mgs a day plus other stuff, so it helped me to not feel so hopelessly stuck because I had this terrible dentist that day tell me that at my levels I would never be able to get off on my own if ever at all! I got some support here and cut back 50mgs that day) This time my tolerance build fast again, something I head heard happens from someone on this board too, but I was ready and we managed it more carefully and cut it off at 150 mg.) I am down to 60 mg 3 times a day now. When I started I, I cut back 21mg (7mg 3x aday) and then the next month I was able to cut 45mg from my daily dosage over a month period. This time I tried to cut back 7mg again and couldn't do it. I tried again the 2nd month and it took every bit of strength I had not to go UP because of the pain. I admit I slipped a few times but not enough to have to taper it. I am also noticing that I am sleeping all of the time which is weird because when I was on the higher levels getting more pain relief I had MAJOR insomnia and crazy energy. Now, I can't get out of bed! I feel like I have mono! But as you pointed out REACH it is prob my body starting to let go and heal. I just hope that this next month I can start making progress again. I wish I knew what to expect or how long it was going to take, it would be so much easier to deal with. The unknown just kills me. I had expected towards the last of the taper but not at the quarter mark. I just hope it passes soon.

I had trouble getting comfortable tonight and have been up for a few hours struggling with back pain. I am not taking any sleeping meds this time which I am proud of. My appt is in 3 hours, and I am nervous to tell my doc I made no progress this month again. But he is a nice guy, and I think he knows the difference between someone whose desire is greater to be off the meds then to stay on. I always firmly believe that if a doc allows you to control your taper based on how you feel with love and trust, you are more likely to strive harder mentally. Having a doc pressure you or make you feel bad, seems to have negative results with people I have noticed. I am thankful I have not had that happen to me, I don't know what I would do if I had to deal with this PLUS stress from a doctor who doesn't trust you or who pressures you.

BTW have you read the literature that they give with the oxy? It says that you should be able to taper 30% every 3 days and as long as you hve at least 30% of the drug in your system from the day before, you wont have withdrawals. That is so not true!!! That is so misleading! I don't know how they can get away with telling people that.

Again thanks for your support. It really does help so much.

 
Old 02-14-2009, 03:52 PM   #5
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Re: Anybody else hit a "wall" with their oxy tapering?

Well, I just got back from my appt. My doctor was very supportive today. He did get on me a little about it but only because he said he has to push me a little or he wouldn't be doing his job and he wants to see me get off of the meds just as much as I do. He told me that he sees all kinds of people come in on pain meds and he can tell the ones who are really trying apart from the ones who don't want to get off or who are lieing. So he knows I am really trying and gave me some samples of Cymbalta to help with my pain. Has anyone tried that? He said it helps for chronic pain AND pain from WDs. Reach, did you go on any supporting meds to help with tapering? He also gave me valium but that makes me sleep too much and I am already having trouble with my energy. He did retest my hormone levels and thyroid too so hopefully that might show me if my hormones are kicking back in.

well I better try and get some work done before I fall asleep again...
thanks again for the support!!

 
Old 02-15-2009, 06:41 AM   #6
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Re: Anybody else hit a "wall" with their oxy tapering?

Hi Makai

Funny... I was just thinking about you and found this post with a question. Smiles. First, I want to tell you, I am that crumbles lady. Chuckles.

So. Yes, I was on meds that helped me during withdrawal, but the fact is that I was on them previous to withdrawal. Some doctors prescibe clonodine, a blood pressure med, to those in withdrawal. My understanding is that blood pressure meds can help with the sweating and shakininess. I was already on a blood pressure med because of a heart attack. I was also already on Xanax that was prescribed for nerve damage, but is also an anti-anxiety med. ( Boy, THAT was a hard med to taper from... horrible!). At first, my doctor tried to wean me down from both Xanax and the Oxycodone and it was disastrous. After consulting with a psychiatrist, my plan was tweeked to wean first from the Oxycodone and then, after a bit of a break, the Xanax. I was also on an antidepressant for a number of years. First Prozac and then a switch to Lexapro. I think these other meds were eventually able to help me find balance and cope in the withdrawal when the opiate was cut back enough that it stopped overpowering them. As I started coming down on the oxycodone, I began to fell energy return in small increments.

Now that I am completely off the opiates and Xanax, I have more energy than I had had in many years. I do deal with chronic pain and that is tiring, but I am still a miliion times better than I was on the drugs. I still take Lexapro and probably always will. I have suffered two debiltating breakdowns in horrible depression and think my brain chemistry is just very altered after the heavy chemo years ago. So, I continue the Lexapro with no doubts.

You know, we chuckled a bit about the crumbles, but maybve that is how the next drop might work for you. As we both know, it is quite amazing how even crumbs of an opiate reacts on us. Maybe a drop by some crumbs would be easier to help you get going again?

Good wishes, Makai. I will be thinking of you.

Hugs
reach

 
Old 02-15-2009, 08:55 AM   #7
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Re: Anybody else hit a "wall" with their oxy tapering?

Thanks Reach, seems we have some similar health issues. I think as women our hormones make our suffering worse than men, and it is something they just can't understand. I was thinking tonight about people like us who were put on these meds due to illness and injury, about how I was a person who barely has a glass of wine at dinner and suddenly I am addicted to these meds that would kill most people in these doses. I was never an addictive person. Not smoking not drinking, nada. I can count on one hand how many drugs I have tried AND never repeated. I have a great family life, a great marriage...I am content with who I am and what I stand for. Aside from the health issues, I find myself incredibly lucky and am always grateful for my life. So it is hard for me to understand how I let this drug control me and why I feel so dependent on it, and I can admit, for more than just the pain relieving properties. Even though I don't get a high from it anymore, it does make me feel "normal" and "level" and able to cope with the pain from a mental standpoint not just physical. I know from experience that I will get there again on my own without the drug, but I just don't understand how this mental dependency happens to someone like me who I feel has no reason to be an addict or escape, not even from the pain. I should be strong enough to deal on my own. I have been noticing this last couple of days, that I time my life around when I take my meds. I stay the most busiest around hour 4-8 when the meds aren't working as well and I have to keep my mind busy until my next dose. Then after I take them, I lie down to watch a movie or show or something else I enjoy but that I can only seem to do AFTER I have taken the meds in that first couple of hours. Otherwise, I really dont' enjoy it. What is that? I don't understand that behavior. I remember last time I tried to quit cold turkey and it was the misery of not enjoying anything, not being able to function, just wanting to feel normal, that made me go the taper method. And I think that is the fear for all people addicted, is that somehow, we need the drug to enjoy the things we like to do and are afraid about what our lives will be like and IF we can ever enjoy those things again without drugs. I guess what I am saying is that for those people who think they are weak from becoming addicts or who think they are broken, just know it can happen to anyone! Maybe your odds are better if you don't have things in your life that drive you to addiction, but no one is safe. And I am angry at the doctors for allowing this to happen. As I have discovered, there were other things that could have been done for me that would have saved me a lot of pain and stress from having to deal with this addiction on top of everything else. They were careless and just doled out meds because they didn't want to take the time to address other options. I remember feeling like everytime I tried to bring up something I had read about to try as an alternative or any concern about the narcotics, them just looking rushed and irritated, like they already knew it was hopeless and I should just resolve to the fact that I had not other options, never once looking up from their prescription pad, never really hearing what I was saying. And I am angry at these drug companies for circulating materials and information that aren't accurate.

Ugh, I am annoying myself with this negativity and over analyzing. I will be so grateful when my hormones balance out. For now, I am going to go take my meds now... crumbs and all.

 
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