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Lowering my pain medication...

DiGrappaDDiGrappa Posts: 8
edited 06/11/2012 - 8:56 AM in Chronic Pain
Hi. I've been reading posts from this site for a little while now, and though my chronic pain issue is not primarily back pain, I find that you all are very informative and supportive of eachother, so I decided to join, ask a question or two, and maybe lend a hand through sharing my experiences. I hope it is okay that I'm here, being that, like I said, my pain is not mainly due to/located in my back. If not, please let me know. If it's okay to be here, thanks in advance for any and all experiences, advice, stories, questions, and anything else!

My main issue with my chronic pain seems to be related to the medications I take to keep it in check. My dosages are EXTREMELY high right now, and while my pain is certainly the least it's been since I was first placed on a medication regimen, I am concerned that there is no flexibility or room for the eventual increase. What I mean by that is: I'm 32, and have had chronic pain due to several injuries sustained in several different auto accidents, and am already on a vey very high dose of medication to keep the pain at bay. Since I'm already on this insanely high dose, what happens when I become MORE tolerant, and there is no way to increase the amount I take, without killing myself? Fortunately, this hasnt been an issue yet, but it very well could become one. I had been thinking that if I can somehow significantly lower my current dosage, then my body may re
adjust, and if I need to go up after that, there is room. I also was thinking that if it is possible, I'd like to begin working out again, and get rid of the 80 lbs. of goo that I have gained (yes, I know, holy cow that is a LOT!) since the last accident, and the resulting surgeries. The weight loss should help by not only reducing the amount of weight my battered and broken frame has to carry around, but also (in theory) wouldn't I then have to take less medication, since I would have less weight overall, or am I too tolerant for losing weight to have that affect: IE a 100 pound woman doesn't take the same amount of medication as a 200 pound man does. If weaning down is a good idea, what would bethe best way to approach it without going into withdrawal, and at what point do you stop? Can I switch medications from one I am taking to another type to sort of "shock" my system, or does the system work that way? What other options are out there that I could try, maybe even a combination of options? I've tried the TENS stimulator, Fentynl (?sp.) patches, all kinds of oral and injected analgesic medications, narcotic, and non. I've also tried neropathic meds, steroids, muscle relaxants, and even an antidepressant (I think it is an antidepressant, but I was told it would help with pain at night, because I don't want to take Ambien again, after walking to McDonalds, ordering and eating four quarter pounders, three fries, and 20pc chicken nuggets, barfing ALL of that up, walking next door to the bar, ordering a coke, and tipping the waitress $3700.00), as well as loads of other dual purpose medications and therapies. I also had a test done to see if I would be a good candidate for an implanted spinal stimulator, but was told by the neurologist that the damage I have is far to extensive, the scar tissue, calcified bone, and hardware are in the way, and the nerves are not in a predictable enough location to be able to effectively implant the leads, so that was ruled out too. I know these questions seem a bit vague, and frivolous, but I am truly concerned that if my meds stop working at 40, I'm going to be living a miserable existence for the following 45-50 years, and I figured that the best time to decrease my pain med dosage, which will obviously lead to an increase in pain, is now while I'm not that old, and can theoretically endure a bit more pain than I may be able to when my body begins to have the aches and pains that come along with old age. Any coments, questions, stories, advice, etc. will be greatly appreciated



  • Every commercial for weightloss has the same disclaimer...check with your doctor before beginning. In your case this sounds like it is critical. I would think that your doctor would try decreasing your dosages very slowly as you lose weight. That way you keep your mg/weight even.

    Hopefully what you will also find is that by decreasing the weight your body is carrying you are also reducing the pain in different parts of your body. It's simple mechanics that the more weight you put on your back the more it will strain and hurt.

    Also be careful about making any diet changes or taking weight loss meds. Some may affect the way your body processes your other meds. You might even want to find a nutritionist or doc who specializes in weight loss.

    Good luck and share your success!!
  • MetalneckMetalneck Island of Misfit toysPosts: 1,364
    This thread may be of use for you:


    Absolutely .... any changes in meds or diet or use of over the counter meds .... need to be dissussed with your docs first !!! That includes Voodoo ... Wicken or herbal techniques also.
    Spine-health Moderator
    Welcome to Spine-Health  Please read the linked guidelines!!

  • I have been asked what I take, so here it is.

    8x30mg Oxycodone, (IR) four times per day (total 32 x 30mg = 960mg)
    2x100mg Elavil (Amatriptyline (spelling?)) at night (total 2 x 100 = 200mg)
    4x600mg Gabapentin, twice per day (total 8 x 600mg = 4800mg)
    1x800mg Ibuprofin, PRN, max 3 per day
    3x500mg Tylenol Extra Strength, PRN, max three doses per day (9 x 500mg = 4500mg)

    I only take the Advil, and Tylenol when I need to control swelling. The Elavil was given to me to help me to stay asleep through night pain, because I don't want to wake up every few hours to take more meds, and Ambien did NOT work well for me at all!
    I'm not sure what the Gabapentin does, so I'm not sure if it is actually helping or not.

    Yes these numbers are correct, and yes I still function. From what I've heard, it's the highest ever that nearly anyone has ever seen, which is the reason I am so worried about it; I seem to have a lot of my future life in front of me, with no future pain medication option. I've spoken with doctors, and all of them have different opinions (after all they are human too; some of them any way ;-) )
  • I messed up when I put the post up in the first place. It should read LOWERING not LOADING. I may copy and paste to start a new thread because I'm certain that some didn't read this because they probably thought I was some goofy addict that wanted do something crazy with his meds. Sorry for the confusion!
  • I was going to post in your other thread, but this one has responses, so I'm posting to this one. The other might get closed and this title can be changed, but that's all for your benefit. You'd be best off having all your answers in one thread.

    Welcome to Spine-Health. I'm glad you've joined us but sorry you're in so much pain. Yes, you can belong here - we're a support group for those in chronic pain, mostly spinal, but not all.

    As for lowering your meds, wow, you really are on a boatload. I can understand your concern. If it were me (and I do this occasionally), I would work with me doc to slowly titrate down the medications and see how it affects your pain levels. Maybe living with a little more pain and less medication will mean when you go back up again, you'll get better pain control. I know that some change pain meds every so often to keep the tolerance to one pain med down.

    But as always, work with your doctor for both the weight loss and titrating off the meds. For me, I eliminated 1/2 a pill on week, another 1/2 the next week, and so on. That kept the withdrawals from getting to me.

    Take care and keep us posted.
  • Sorry to hear you're in so much pain and you've been through so much for a young person.

    You're Tylenol dose is too high and you should speak with your Dr. concerning this but know he should be checking your bloodwork at least every 3-6 months right? And I must say that is a large amount of pain meds but you must have been in some pretty severe accidents with surgery to have such a high dose.

    I know I went up to 120 of Oxycontin and have slowly come down to 60mg a day as the Oxycontin was making me too tired and I feel better and more able to go out to walk almost daily with a cane. I gained a lot of weight also and with the high dose for me just kept me tolerable. It seems no matter what one takes there seems to always be no complete relief in pain.

    I'm going to the Cleveland Clinic for help with a Sports Medicine Specialist to all the hockey players and sports players and I'm getting inferential treatment for swelling in my back and neck and knee at the Chiropractor with no adjustments of course.

    Aquatherapy is free for their arthritis aquatherapy and can help with muscle pain also and would help with your weight loss. It's a nice heated pool so better for muscle pain.

    Has the Dr. tried Cymbalta for pain relief? It's fairly new in being accepted by the FDA as for chronic back pain and sciatica as well as Fibromyalgia pain.

    The only way to start decreasing is to let your Dr. know and be slowly weaned down from your meds to see how you react to the lower doses. It sounds like you're ready to do this and we're here to support you through it. Best wishes for your plan to try and decrease your meds. Keep up posted. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • Thanks Cathie, and to the rest who have sent me PM as well. Part of the problems I have is the medical community in which I live. I had a pain specialist that put me on a med regimen. He was also a customer of mine, and eventually became a business partner, at which time, I left his practice and went to another doctor. I avoided going to friends of his as well, simply to avoid the possible look of impropriety; exchanging checks for hundreds of thousands of dollars, and prescriptions for narcotics could look really bad, and jeopardize his career. The pain doc I went to after him, who is now under investigation, and being sued for malpractice, among MANY other things, is the one who put me on such a high dose, which was about three years ago. One day I arrived at his office for an appointment, and found that he had been shut down. So I was sitting there, no doctor, no meds, and about to go through withdrawal. I called my DO who began to write my scripts for me. This doctor, who by the way is easily one of the best doctors I've ever met, wrote my scripts until September 2009, when I was asked to leave (I called the office manager incompetent because they had been withholding my records from my insurance, who would nit pay for my meds until they had them, costing me 18k over the 14 months that insurance company had been requesting the records (63 total written and phone requests). Little did I know that the office manager was the practice owners wife. Stupid move on my part) for a Honduras move, and because my pain med maintenance was simply not their cup of tea, and had begun to be an issue for them. Since then I've been to several other doctors, and the resounding response has been "WOW! that is a lot of medication, we don't do med maintenance here" or "I'm not comfortable with that much" or "we can help you get in to another doctor" they then proceed to give me medication for a day, a week, two weeks, or at most a month, and pass me off. To this very day, I am the same limbo, being passed all over town. This wouldn't be as much of an issue if we didn't have the PDMP database in this state, but since we do, I look like a narcotic med junkie, who has been doctor shopping. Some of these doctors even go so far as to suggest going to drug rehab to get off of the medications! That would be fine, except I'm NOT taking these for fun, I'm taking them because I'm IN PAIN! I NEED to take them in order to have a semblance of a normal life. The las time I came off (not fully off, but a lot lower due to being hospitalized from a car accident, and the doctor there refused to give me more than 60mg per day; it was the most painful, worst experience of my life!) I was in so much pain that I couldn't eat, or sleep, or walk (stuck in a wheelchair), let alone play with my kids, or take them places, or anything else. The long and short of it is that I can't seem to find a doctor that will stick it out long enough with me to help me lower my meds. What I'd love to be able to do is work on lowering the amount of meds I take, or switch meds to another that maybe uses different receptors/method, and if it doesn't work out, I'd like to be able to go back to what had been working. Every doc that sees me, and hears that I want to lower my meds, thinks that I want to do so with the intention of removing them entirely, where as I simply want to lower them, even if only a little, so that in the event that I need to be able to take more, I can do so. I know it's off topic, but I would appreciate any help with this, as well as any help finding a doctor.

    By the way, the doctor I was with originally, (whom I became business partners with) isn't a possibility. Our business relationship ended, and I haven't spoken to him since. I will tell you though that even though he and I no longer are friends, he is the best pain specialist I've ever met, an absolutely amazing surgeon, and a brilliant doctor. He specializes in back pain/injury/surgeries, and from what I know, has also helped develop some of the equipment and procedures that are currently being used to help people with pain (mainly back pain). He's the best, and if any of you need to contact him, or would like his information, let me know, and I will gladly pass it along.
  • I can't say that I have ever seen that high amount of any opiate prescribed to someone.

    A few questions...

    1)Are you going through your insurance and they pay for 960 pills of Oxycodone a month? As well as the other meds?

    2)Do you get them all from one Pharmacy?

    3)Is just one Dr. prescribing all these medicines for you now?

    Even the highest dosage for Neurontin is 3600mg per day...There isn't any scientific data that over this works any better...

    As well as others have said you are on too high a dose of Acetaminophen...Max daily should be 3000mg (if on it long term)..

    But I just find it astonishing that the Pharmacy and the Dr. you have now are not flagged by the DEA for that dosage. It is almost criminal that a Dr. ramped you up to these high doses on these medications...

    Even a dying cancer patient would never be prescribed that amount of Oxycodone per day...

    You will absolutely have to lower the dosage over the months to find a Dr. who will want to take you on...

    And I wouldn't be at all surprised that you have Opiate-induced Hyperalgesia which actually causes more pain when being on too high of doses of opiates...This is when the body loses all it's natural way of dealing with any type of pain and damages the nociceptors or peripheral nerves.

    That is why you have no clue if the Neurontin is even working...which I'm sure it is...because you are on such an extreme dose of Oxycodone..

    I would be calling around to Dr.s and telling them directly that you want to lower your dosage that is healthy as well as still helps manage your pain.

    Living with chronic pain means using many different modalities daily to help manage our pain. I know that you tried some things before...but it's putting them to use every day/week/month along with any type of opiate..

    I use daily walking 30-45minutes, yoga/stretching, aqua therapy, massage, injections, acupuncture, TENS unit, a muscle relaxer when needed, a sleep med when needed, an opiate, I eat all Organic and stopped all foods that cause inflammation...I don't smoke...I went to a counselor to help deal with the emotional issues of living with chronic pain...etc.

    Have you had any surgery done to help your pain issues?

    The easiest way to find a new PM is by letting the know over the phone that you want to lower the doses of many of your medications and figure out what your true pain level is...As well as work with them on finding a comprehensive plan to manage your pain that doesn't rely so heavily on medication...

    It's truly sad that someone who calls themself Dr. got your body used to being on such dangerous levels of medication...I truly hope that you can find another Dr. ASAP to start lowering the amounts in a safe way and get you on a better plan to manage your pain...

  • Slow down folks. Each of us have different doctors, different needs, different physiology and different tolerances to pain and medications. While it may seem to most that what DiGrappa is taking is impossible or deadly, we should be careful and not jump to conclusion unless we have spoken directly with his prescribing physician.

    Prior to going through a C2 Ganglionectomy I was on
    100-120mg Oxycontin 3 times a day with 30mg of Oxycodone every 4 hours. Along with that I was (and still am) on 4800mg of Neurontin daily taken as 1600mg every 8 hours.

    I went through Rapid Opioid Detox after surgery.

    3 days prior to the surgery I was taken off the Oxycontin and placed on 25-30mg Oxycodone every HOUR. I was still going into withdrawls even with this.

    The entire time I was very coherent, very functional, still working and still driving.

    During the time that I was on all these medications, my case was reviewed weekly by the hospital pain medication management board which included the main prescribers and chief pharmacist.

    So please folks get beyond the knee jerk reaction of disbelief and fear over what DiGrappa has posted about prescribed medication doses and do as Spine Health members do and offer support and encouragement.

    DiGrappa, I found that once I reached this level of prescribed medication, that my pain was uncontrollable and the medication became nothing more than a way to keep me from having horrible withdrawls every day. The doctors offered to do the rapid detox in conjunction with the surgery to remove the major pain generator. It carried a ton of risk and the results weren't perfect and weren't pretty but we got it done. My PM doc said he believes in hyperalgesia and I was suffering from that in his opinion. Basically that's where the pain meds become a large part of the pain generator by making a person more intolerable to pain.

    I can see where you will definitely have problems with the docs and insurance and the pharmacy. It's a shame that you aren't considered a candidate for a spinal cord stimulator trial. Heck I would get an opinion from a surgeon who actually does the implants vs a neurologist who stays away from that sort of thing. I now control the majority of my pain with an SCS and the 4800mg of Neurontin and 400mg of Celebrex. I do not and will not take any opioids, because I know that will spin out of control real fast.

    There are always alternatives and a couple that still remain, are Intrathecal Drug Pumps as well as Deep Brain Stimulators. If you can work with your doc to explore possible avenues and solutions, you can easily go on to a better life and not just an existence.

    Best wishes to you, I totally understand where you are coming from!

  • Sorry for the delayed reply
    The tablets I take are 30mg immediate release tablets. I take 8 of the 30mg tablets per dose, and I take 4 doses per day. (30mg x 8 tablets = 240mg per dose, 240 per dose x 4 doses per day = 960mg of immediate release Oxycodone per day)

    I'm aware that it is a lot, but frankly (and I know this will sound dumb) I only have in the past few years, been made aware just HOW MUCH out of the ordinary that is. I seriously didn't know that what I was taking was out of whack, because I didn't know what a normal dose should be. It's like somebody never having taken Tylenol, and someone hands them 1000mg (2 x 500mg extra strength). They may say 1000mg sounds like a lot, or they may just assume that that's what people take. I made the mistake of trusting a doctor, who was also a friend, and made the assumption that 240mg wasn't that much per dose; after all, we take 400mg of Advil per dose, and 1000mg of Tylenol per dose. I am aware that it's not the same, and no I'm not an idiot, in spite of what you may now conclude based on my last statement, but I was trusting someone, who never made it seem like a big deal, my pharmacist never said anything, and my blood work always comes back in the normal perameters, so I didn't even know to question it. Before you ask, no, I do not feel the "euphoric" affects of Oxycodone, so no, I didn't get "knocked on my ass" as one would expect. The only feeling I got, was a fairly instantaneous relief from pain that had been limiting me for several years before (resulting from the first of the two accidents, that have me in my current situation), and I was THRILLED to be in that position.
  • Oh, and yes, I'm taking it EXACTLY as prescribed, and have had NO adverse affects.

  • advice removed
    1997 laminectomy
    2007 repeat laminectomy and discectomy L4/L5
    2011 ALIF {L4/L5/S1}
    2012 ? bowel problems .still under investigation
    2014 bladder operation may 19th 2014
  • advice removed
    1997 laminectomy
    2007 repeat laminectomy and discectomy L4/L5
    2011 ALIF {L4/L5/S1}
    2012 ? bowel problems .still under investigation
    2014 bladder operation may 19th 2014
  • advice removed
    1997 laminectomy
    2007 repeat laminectomy and discectomy L4/L5
    2011 ALIF {L4/L5/S1}
    2012 ? bowel problems .still under investigation
    2014 bladder operation may 19th 2014

  • advice removed
    1997 laminectomy
    2007 repeat laminectomy and discectomy L4/L5
    2011 ALIF {L4/L5/S1}
    2012 ? bowel problems .still under investigation
    2014 bladder operation may 19th 2014
  • What I mean is why hasn't anyone prescribed Oxycontin which is a long acting form of oxycodone so that you don't have to take so many pills at once? I'm not blaming you at all. I'm no doctor but from my experience I never ever heard of someone being dosed in this way.

    At one time I was on 60mg Oxycontin 3x's daily plus 10mg Oxycodone every 4 hours. This was before I had a pain pump with Dilaudid implanted and now I'm down to 3 7.5mg Oxycodones a day.

    I think you should find another doctor to totally revevaluate you and readjust your med regimen to something more sensible. I hope that it helps you in the process and improves your quality of life. Take care
  • me
    1997 laminectomy
    2007 repeat laminectomy and discectomy L4/L5
    2011 ALIF {L4/L5/S1}
    2012 ? bowel problems .still under investigation
    2014 bladder operation may 19th 2014
  • The reason my dosage is the way it is:
    I was taking Oxycodone and Oxycontin, similar to the way that many others do. I ended up having constipation issues for which I was hospitalized with impactions twice in six months. The doctors gave me several different regimines of medications to cure the issue, but absolutely nothing worked; natural, prescription, and everything in between. The solution was to take me off of my meds until the situation resolved itself, then go back on the meds. The Oxycontin took quite a while to leave my system, and in the meantime, I was in pain, and suffering from withdrawal. So, it was suggested that I only take the short acting medication to avoid having to wait so long for it to exit my system. It has worked so well, that I never have to go off the meds; the time I am off during the night is enough to keep my bowel working correctly.

    Backache99 - why no more advice? I truly appreciate all that you have shared. I only used caps to emphasize that I take my meds exactly, not to "shout" at you. I don't do hardly any chat boards, so I didn't know that I was coming off as rude and angry. Please forgive the disrespect, I did not intend to treat you this way. Your insight is greatly appreciated. Once again, I apologize.
  • I will preface this by saying that I am not blaming you. But I agree with the concensus, which is that you are taking WAY too much. Whatever doctor prescribed you that much Oxy IR really needs to be investigated. I'm saying this both as a nurse and a patient. I think you need to find a doctor who is willing to work with you and help you wean down, even if that means traveling out of your area to find someone. Even the doses of Neurontin and Tylenol that you are taking is too much. The concern with the Tylenol is the affect on your liver. The max dose is 4000 mg per day. With a dose as high as you are taking, you really should have your liver function tested. In addition, the maximum dose of Neurontin is 3600 mg per day, but that is for patients who take it for epilepsy/seizures. For patients taking it for nerve pain, research has shown that dosages over 1800 mg are no more effective.

    In any case, I hope you can find someone willing to work with you. When you start taking so many pain meds, it can lead to rebound pain and it can actually make your pain level higher. If you can wean down on these meds, then perhaps they can put you on an extended release medication to help control the pain throughout the day, but at a lower dose. Then they can give you meds to take for breakthrough pain, but you likely won't need to take quite so much.

    I wish you the best of luck. I can relate to your frustrations of being so young and wondering what the future will be like. I am 29 years old and just had my first spine surgery about 2.5 months ago. Now I'm having problems with another disc that is compressing the nerve root causing severe pain. I go back to the neurosurgeon next Tuesday to find out if I need to have my second spine surgery in under 6 months. It's very discouraging and I find myself thinking that if it's this bad now, it can only get worse. I truly hope that is not the case, but my health has continued to decline over the past several years. I have back issues, a heart condition, acid reflux, and possibly an autoimmune disease (still awaiting test results), all at the ripe old age of 29!
  • anyone heard of rapid detox?
    you should do this since this is a tremendous amount of pain meds. Why does your dr not give you 60 mg tabs instead of 2- 30 mg tabs? is this from the same dr? if you were on that high of a dose i would think your dr would give you the 60 mg dose. it does not make sense to me. i would think you would be on 60 mg twice a day not 4. you are so dosed up that you need professional help to lower meds. talk with dr about what to do? what does he say? anyway try rapid detoox, they put you under and give you meds to detox you while you are under. takes i believe about 8-10 hours of being under. then when you come out they give yo something else to help also. i don't know what it is but it is supposed to keep one from going back on. i don't know how long you are in hospital but this is the way to go to get off meds. wow still a lot of meds. there is no way my pain dr would give me that large of a dose. i would get the big lecture and probably he would say no if i asked.
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • Terror,

    In the USA, we don't have 60 mg. IR oxycodone. DiGrappa explained that he doesn't take LA medications because of constipation issues. Just wanted to clarify.


    I'm on a high dose of medication as well, but about a little more than a third of what you take.

    I wish that I had advice for you. I'd try to do a very slow taper, and see if that helps to lower your dose. I'd also try to do it under a doctor's care. That really seems almost impossible though with what you're going through now.

    Do you have a doctor right now that is at least working with you?

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