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Am I pickle? 30 days off Oxy
  1. #1
    Neanderthal is offline New Member
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    Default Am I pickle? 30 days off Oxy

    Hi, noob here, first post. Looking for opinions/experience.

    I was taking Oxy for painful, idiopathic peripheral neuropathy. Started five / six years ago with Pecocet 10s maybe one a day, ended with Roxi (?) 15s four a day until a month ago.

    Then I ran it off the rails somehow. I had back to back migraines (never had one before) two trips to the ER, two shots of Demerol in the butt. All within two weeks. Plus a few extra Oxy of course.
    I was sticking to the prescription pretty well, but would sometimes wander a bit. Not too bad . . . . but I am human and took an extra now and then. Never had any trouble making it up the next day.

    Then after the second headache, it seemed like the meds turned on me. I was going into withdrawals (never before, so I had no clue what was happening) it felt like someone dropped a piano on me and the Oxy was NO HELP!
    Completely bewildered and hurting like hell I made another trip to the ER where the doctor pronounced me in withdrawal (Really? I had qty 60 of the 15s in my pocket) and showed me the door.

    Went to my GP who told me to find another ER. I sent an SOS to my pain doc and spoke to their machine. The next ER also pronounced me in withdrawal (still had the 15s) but was concerned about my 220 over something BP and admitted me.

    Spent the worst night of my life in the hospital and crawled home the next afternoon. Classic withdrawal now, but the docs (about 20 of them) all told me that opioids were to be avoided. I believed them and have been clean for 30 days.

    I am thinking opioid induced hypoalgesia. . . . . . but I understand it is rare. Seems to fit, the Oxy (remember, I still had plenty) just made the piano hit hurt worse . . . .

    30 days out and I am maybe 80% past the physical stuff, and do not have any real "craving" for the drug. Maybe that is next week . . . . . . but have had none since the visit to the GP. Sleep is hard to get, no energy at all . . . but so much better than the agony of the first week or two.

    Here is my problem. feet now REALLY hurt like hell and all I have is Pregabalin and Naprox Sodium. Seems the peripheral neuropath has progressed unnoticed over the last five years. I was taking the Oxy for a reason.

    So here is my question. Am I a pickle or maybe still a cucumber? Have I fried my receptors or could I still possibly still get some use from the opioids? Probably a tough question.

    I do NOT want to slip back into physical addiction.

    But these feet have me just about crippled.

  2. #2
    Neanderthal is offline New Member
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    Oh, when I went to see my pain doc about two weeks later, he didn't like my story and fired me. I did not ask for any opioids and refused the tramadol he had scripted me. Fired me anyway. I was going to pick his brain about a spinal cord stimulator. Oh well.

  3. #3
    Thisweekforsure is offline Advanced Member
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    If the official diagnosis was indeed opiate induced hyperalgesia then the recommendation to avoid opiates is standard. Do you know if that was the diagnosis they put in your record?

    The other possibility is that because of the onset of migraines your regular dose was not sufficient, and you essentially became tolerant to your dose rather abruptly. That is not really "withdrawal", I am unsure why you seemed in full withdrawal while taking your normal daily four pills 15 mgs each. You should have increased pain but not full on w/d. Did the ERs do a COWS sheet to determine if you were in withdrawal? Or did they make the diagnosis in a less exact way, just because you were taking opiates and came to the ER in pain and distress?

    If a person on maintenance opiate therapy has sudden increased pain, it could be because they have reached tolerance, or it could be OIH, but the treatment is different, because the underlying mechanism is different. For tolerance, you increase the dose. For OIH, you get off the drug and avoid it in the future.

    You really need a better doctor (talking about your PM, not your GP). You need someone to assess which of the two possibilities above is the truth. If you do not have OIH then opiate therapy might be your best option, although I hear you about not wanting to be dependent on opiates. If the PN becomes unbearable, you might have no choice. Or if you did have OIH, or just refuse to take opiates again, they might be able to treat you with the spinal cord stim, etc. Either way you need good PM doctors. Sounds like the one that fired you isn't, or they would have helped you sort this out.
    Catrina likes this.

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    Catrina is offline Diamond Member
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    Thisweek,

    You are most impressive! I read this earlier and although I am rarely at a loss for words, I had none. So nice of you to help out here.

    Peace,

    Cat

  5. #5
    Thisweekforsure is offline Advanced Member
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    Quote Originally Posted by Catrina View Post
    Thisweek,

    You are most impressive! I read this earlier and although I am rarely at a loss for words, I had none. So nice of you to help out here.

    Peace,

    Cat
    Awww thanks, Cat. I was at a loss at first too. I really had to think for this one.

  6. #6
    Neanderthal is offline New Member
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    Thanks ThisWeek,

    No, no official diagnosis of OIH.

    Never heard of a COWs sheet. Just looked at one, I score somewhere in the mid moderate as best I can recall. It got progressively worse as time passed. I am not sure, but I think they allowed a bit of Demerol into the IV to observe the effect. My wife said I "settled down" for a bit but it was nothing that I myself noticed at all.

    Without fail, every doctor came to the determination that I was simply in withdrawal and gave me "the look". (With the exception on my GP, whom was bewildered as well and genuinely concerned.) To complicate things I was in brain failure by the time I got to the second hospital and couldn't express my concerns. My wife was there with me, but she had no clue. Even had my brain been 100% (back to about 90% now . . . . Yay!) I had no clue what was happening, never heard of OIH until yesterday when my scouring of the internets finally hit upon something that made (some) sense.

    Correct self diagnosis? I have no idea, perhaps I am completely off base. But it is the only thing that would explain the worsening of the symptoms (no doubt that it was withdrawal now, heck I have experience with it now!) when I have beau-coup oxy available, but taking it just makes things worse!

    I have serious concerns about the spinal cord stimulator, I now have grave concerns about opoids (we got along fine for 5 years, though my mind is clearer now (at 90%) than I can recall maybe ever). At least the last few years. Dazed and Confused . . . . . Comfortably Numb . . . . pick your song.

    NSAIDS just got a big warning by the FDA today!

    I am so scared now, but am contemplating maybe some perc 10s maybe one a day. I bet my tolerance is such that 10mg Oxy would not be enough in any case. And I do not want to go back where I was.

    Sux to get old. I am nearing 60years. Indeed, I spent my 59th birthday in the hospital a month ago.

    You are so correct about needing better doctors. My pain doc is indeed on my naughty list. Good luck finding a good doc in Louisiana. I do have a couple of recommendations that I might pursue. Bottom line, Peripheral Neuropathy is a >>>>>. I have found nothing other than Pregabalin (and OXY!) that gives me any relief at all. And the pregabalin is not much. It is not a nice condition to have. And for no reason (buckets of Cipro maybe) I am not diabetic.

    Maybe I should move to Colorado . . . .

    So I am contemplating the Oxy. Still, not really a psychological craving as much as just want these feet to stop screaming for a little while.

    Any other thoughts out there?

  7. #7
    Neanderthal is offline New Member
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    Correcting myself. I said hypoalgesia. The correct term is indeed hyperalgesia.

  8. #8
    Thisweekforsure is offline Advanced Member
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    Quote Originally Posted by Neanderthal View Post
    Correcting myself. I said hypoalgesia. The correct term is indeed hyperalgesia.
    I knew what you meant. Yeah even as I was telling you that you needed a better PM I was in despair that you could find one. The situation with doctors is getting horrendous. I've never seen anything like this. People left to self diagnose and hung out to dry just when you're getting older and all the bad diseases hit... unreal.

    Your GP sounds like the real deal though, but lots of GPs have stopped prescribing opiates, however, it's good to at least have him(her?) understanding your situation and can be your ally.

    The only other idea I have is that even though you are not diabetic, if you are pre-diabetic, that is, if your fasting glucose is 100 or higher or your A1C is 5.7 or higher, then your PN might be related to blood glucose, and is actually diabetic neuropathy, not idiopathic. This may respond to lowering your blood sugar drastically. You can do this by cutting out all sugar, and drastically cutting carbs. Give that a few months, and see if your pain goes away. I don't know what you mean by "buckets" of Cipro? What did you take that for? It can cause BS abnormalities including low BS events but won't prevent diabetes.

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    Neanderthal is offline New Member
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    As every doctor I have had has been bewildered that I am not diabetic, I ran my blood sugar every day for a few months. I do not recall just what the numbers were, but I was universally proclaimed to be "not a diabetic".

    As for the cause of the Neuropathy, some studies have linked nerve damage and neuropothies to the antibiotic Cipro. I have had a couple of serious infections that were treated with Cipro (lots of it) on two occasions about five years apart. I wish I had taken better notes as to the onset of the neuropathy, but it is really really close to the infections and the Cipro.

    First, an upper respritory infection that dang near killed me. Lots of Cipro! About 14 years ago. Good timing . . .

    And then about five years ago I had an infection in a big toe. It was caused by a bone that I broke forty years ago that eventually grew out the bottom of my toe. Of course, my feet are dead so I did not know I had a wound until it had become seriously infected. More Cipro and voila, the pain ratcheted up a couple notches and I then went to the PM doc for the Oxy. Timing on that one was spooky good.

    Anyway, they have been linked. I do not know how real it is. Something about a "Black Box Warning".

    Lots of lawyers sniffing around if you do a search.

    This from the FDA.

    Source:http://www.fda.gov/Drugs/DrugSafety/ucm365050.htm

    "Safety Announcement
    The U.S. Food and Drug Administration (FDA) has required the drug labels and Medication Guides for all fluoroquinolone antibacterial drugs be updated to better describe the serious side effect of peripheral neuropathy. This serious nerve damage potentially caused by fluoroquinolones (see Table for a list) may occur soon after these drugs are taken and may be permanent.

    The risk of peripheral neuropathy occurs only with fluoroquinolones that are taken by mouth or by injection. Approved fluoroquinolone drugs include levofloxacin (Levaquin), ciprofloxacin (Cipro), moxifloxacin (Avelox), norfloxacin (Noroxin), ofloxacin (Floxin), and gemifloxacin (Factive). The topical formulations of fluoroquinolones, applied to the ears or eyes, are not known to be associated with this risk.
    If a patient develops symptoms of peripheral neuropathy, the fluoroquinolone should be stopped, and the patient should be switched to another, non-fluoroquinolone antibacterial drug, unless the benefit of continued treatment with a fluoroquinolone outweighs the risk. Peripheral neuropathy is a nerve disorder occurring in the arms or legs. Symptoms include pain, burning, tingling, numbness, weakness, or a change in sensation to light touch, pain or temperature, or the sense of body position. It can occur at any time during treatment with fluoroquinolones and can last for months to years after the drug is stopped or be permanent. Patients using fluoroquinolones who develop any symptoms of peripheral neuropathy should tell their health care professionals right away.

    FDA will continue to evaluate the safety of drugs in the fluoroquinolone class and will communicate with the public again if additional information becomes available."

  10. #10
    Thisweekforsure is offline Advanced Member
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    Wow, I did not know that. I knew about the tendon rupture but not PN. Permanent... wow.

  11. #11
    Neanderthal is offline New Member
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    Yeah, it is not good . . . . nerves are funny. They don't do much healing. And nerve pain is insidious and debilitating.
    Thus the Oxy, 60mg a day for the last year, lesser amounts the prior five years.
    I just came back from a vigorous bicycle ride, I seem to be coming back quite well from the physical torment of the withdrawals. Then to sit for a moment to cool off and the feet start talking.
    Back to my question. Anyone else have an insight as to how damaged I might be?
    Could I maybe be trusted with a bottle of Percs? Or would my head explode at the mere sight of them. . . . . . .
    My instinct tells me it would be OK. . . . . but then that voice could be something else entirely.
    Thank you so much for your considered response ThisWeek!
    But looking for a few more opinions/responses if they are out there.

  12. #12
    timetogocold is offline Junior Member
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    From my own experience I would say that ANYONE that has came to terms with being an addict, can't be trusted with a bottle. That is not to say that the first script of let's say 120 lasted you three months and that is two months longer than what it was wrote for but eventually we all have that bad day which has us lose control over what's right. It is the same reason why most of us try to taper and end up going cold turkey. We say I will take one extra today and never end up taking one less. This is just from personal experience and what I have gathered here. This is coming from someone that could benefit from using one here or there for medical reasons. I have tried the one occasionally and it turned in to an everyday thing. You put your body through so much torment doing it. Personally I am better off dealing with the pain than masking it.

  13. #13
    Neanderthal is offline New Member
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    Yes, That is what I am afraid of. I do not want to go back to where I was. And the slope would appear to be quite slippery.
    But that can't be me right? That just applies to the other guys!

  14. #14
    timetogocold is offline Junior Member
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    That's always the case. That would never happen to me. At the end of the day, you need to do what's best for you. I hope you have reached the point of being done but some of us do not make it that easy and need to do it a couple of times. One time is to many in this case. Stay strong and don't give up.

  15. #15
    Neanderthal is offline New Member
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    Update.
    I have managed to stay off the opiates for four months.
    I started having some good days maybe a month ago, now the good days outnumber the bad days.
    Yay.
    Coming off a bad day yesterday is probably why I write this.
    If I am honest with myself I know (now) that if I had some Oxy in my pocket I would surely abuse it. And be right back where I came from.
    I just took a handful (3000mg) of Gabapentin (surprise, I ran out my prescription for Pregabalin a week early) to get through the day. I took this at 7 AM, and will take another 2400mg before the day is out. That is more than the recommended 3600 a day but I have become tolerant to the point that those numbers are where I get relief. These two prescriptions are from my GP, who sorta knows that I take both. But I don't like it.
    Just complaining out loud. Maybe it is therapy. Certainly I can't talk to my wife or friends . . . . I suppose I am lucky to still have either!
    I am dealing now with the psychological aspects of the withdrawals which I now find to be very real. And the physical pain of the Neuropathy. Would be very easy now to slip into depression. I think maybe I will avoid that but certainly understand how it could happen, as I am aging and losing so much. Forced into early retirement a year ago because of my physical impairments and maybe my drug use. My love is motorcycle racing, have not been able to do that for years.
    I could go on. Boo hoo, boo hoo.
    Anyhow, going to try to have a good day today, might go see a movie with my daughter.
    I still have a strong family, am reasonably healthy, financially secure (count blessings).
    Just this demon gnawing away.
    Last edited by Anonymous; 10-18-2015 at 08:30 AM. Reason: Clarity

  16. #16
    Neanderthal is offline New Member
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    Eight months now and still clean.

    I feel OK for the most part, just the feet still scream pretty regularly. I sit in my chair and bang my feet together (for hours) when I try to watch TV or some such. Drives the wife nuts . . . .

    A few weeks ago I fell off a work bench (stupid) landed elbow first and destroyed my rotator cuff. At 60 years old, the orthopods don't want to cut, and I suppose word is out as no one would prescribe any Opiods.

    Or it could be all the TV coverage that the demon drug is getting.

    Probably a good thing that I was not prescribed. I got through the injury (sorta) but the shoulder is far from 100% (may never get there) it has at least stopped hurting quite so bad.

    Dodged that bullet.

    So maybe I am good . . . . I still have not had my hands on any Percs, so I know not how I would handle them.

    But at eight months clean now, maybe I will be OK as long as I stop injuring myself.
    Last edited by Anonymous; 02-18-2016 at 01:25 AM. Reason: Grammar

  17. #17
    LifeSaver77 is offline Member
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    It's curious you posted today. I read your thread today while in the bath. I found it truly riveting for some reason.

    YOU have been doing an amazing job. I hope in 8 months I can come back and post I've made it that long. The most sobriety I've gotten in the past 6 years of daily abuse, has been 3 months.

    Reading stories like yours helps others, like me. Thank you for sharing, and I hope one day you can get back on a bike. Even in a sidecar. I kid, I kid!

  18. #18
    Neanderthal is offline New Member
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    Thank you Lifesaver for the encouragement. I need it, and if my story enourages any other people out there, well, that would be awesome. I know it helps me to write this stuff.

    A couple months ago I actually rode a lap at a real deal off road Hare Scramble. It is a bit complicated though, I entered a 1963 Greeves in one of the real classes against the modern bikes.

    The bike was my Dad's who rode it last in 1967 and put it in the barn for it's retirement. Has not run since. To get it in ridable condition was a huge task.

    Got it going and determined to make a lap on the eight mile course. With about 100 real motorcycles. It was pandalerium, but I did not die, and even beat a couple of really slow guys.

    That is undoubtedly the best day I have had since I "kicked" the Oxy.

    While I was still in the grips of withdrawal (months actually) I could not fathom how I could ever do anything remotely this stup . . . . er . . . .daunting. But I slowly regained some of my old strength and with a shot of adrenaline from the smell of the racetrack, and the support of many local friends was able to pull it off.

    So do not despair, there is hope! I can assure you none of this has been easy, and I am not out of the woods in any case. Still have some healing to do, but am already putting together another bike to ride in another event this spring. That bike will be a bit more modern.

    If I can figure out how to attach a photo, I have done so. A good comparison of the 1963 bike and a modern machine. Heh heh. It is tiny!

    That ugly yellow helmet is a championship helmet from 1982.

    It was a beautiful (read perfect) day! And I got the rock star treatment from everyone there.
    Last edited by Anonymous; 08-15-2017 at 05:49 PM.

  19. #19
    LifeSaver77 is offline Member
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    THAT post and smile truly made my day.

    See? There is still life for us to live.

  20. #20
    Neanderthal is offline New Member
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    Update

    A year ago I was starting to get a hint that something was awry with my use of Oxy. I was not quite off the rails yet, but just a couple weeks from a full meltdown.

    I just wanted to post (if anyone is following) that I did complete the build on that off road motorcycle (should have just bought a new one) and entered it in a real deal race last weekend.

    I even managed to not die (contrary to the dire warnings from my wife!) and even brought home a medal in an "A" class. I would have done a bit better, but ran across an injured rider and took the time to co-ordinate his extraction. He was close to the camp, so it did not take too too long.

    But my message is one of encouragement. In a few weeks is my one year mark off of the Oxy. I understand that I will never be truly "out of the woods" but I have bounced back quite a bit from a very low point. At the worst, I couldn't walk, couldn't think, and lost about 50 lbs.

    My weight has bounced back . . . . not necessarily a good thing . . . .

    My mind is fairly sharp now, and walking is not a problem. I have not fallen in months.

    To enter and medal at a race at 60 years of age should (I hope) lend a degree of encouragement to anyone out there just starting this struggle. If I can do it, then certainly so should you be capable of the same.

    So fight the good fight! I am rootin' for you!!
    Last edited by Anonymous; 08-15-2017 at 06:17 PM.

  21. #21
    Thisweekforsure is offline Advanced Member
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    So great that you're having so much fun!

    How is your PN?

  22. #22
    Neanderthal is offline New Member
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    Why thanks for asking TWFS!
    Not any better, not much worse. Gobbling Pregabalin and gabapentin keeps it somewhat under control. "Under Control" means I am not comfortable, but not about to go lay on the railroad tracks.
    What that stuff is doing to my brain is a mystery though. Certainly I am not as sharp as I once was, but how to distinguish between normal aging and the effects of the gaba drugs is difficult.
    On the up side, the Oxy had me in nearly complete brain failure. Good to be off the stuff.

  23. #23
    Thisweekforsure is offline Advanced Member
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    Well if you are overall happier off the stuff then it's worth it. It's always about quality of life and pain is only one factor. If the pain isn't so severe you're about to "lay on the railroad track" (ha ha ha! got a kick out of that) then it does sound preferable to not have opiate brain fog.

    I sure wish they could come up with something better for PN. I hear you about the Gabapentin too, I'm not a fan of that stuff either.

  24. #24
    Neanderthal is offline New Member
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    Pfizer's patent for Pregabalin runs out December 2018. I would suspect they already have a better drug but no reason to release it until the Pregabalin patent runs out.
    That is my conspiracy theory anyway. Time will tell.
    Anyone care to to take any bets?
    Thisweekforsure likes this.

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