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Almost off Opiates

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  • Thanks Mike.

     Sherri I’m down to a single Oxycodone 5mg at night for a whopping 2 days in a row.  Before that I stretched it to 18hrs a couple times, but I’m finding that electric pain in my legs is much higher every night.  Last week was hard to sleep but I added some valerian root three nights ago and I am impressed with how well I slept through the night with only one time awake, eight hours solid each night and for me that’s saying a lot.  I hear you about quality of life, that’s why I did the surgery when it comes down to it, and I guess even with the pain I have now, compared to pre surgery my quality of life is equal. I’m hoping for some progress with PT and giving the opiates time to get out of my system before declaring that I need to stay on a low maintenance dose, but that may be likely.  I guess the longer I can stay off it the lower the dose it may take. 

    L3-S1 ALIF Feb 2018 and 

    L3-S1 PLIF Laminectomy and Fusion March 2018

  • Great news Joel,

    I was up last night an hour after I went to bed.  Horrible pain across my upper back.  I could not get comfortable or sleep, not even one wink.  I had to take a pain pill.  The lowest I can go is dilauded x 3 daily.  If I go lower I am in pain and give in after an hour and take one.

    I hope you can sustain your reduced opiate intake.   I wish I could get by on less myself.

    God bless

    dmo

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  • nutcase007nnutcase007 United StatesPosts: 937
    Joel1Q - Glad for your sake that you found valerian root to help you.  I found warnings that stated that valerian root should not be used for extended periods of time.  From my experience, it seems it looses its effectiveness after a couple of weeks.  Yes, it did help me during a change of medication to get some quality of sleep.  
  • Thanks Dale and Nut, I’ll definitely read up on side effects of valerian root. So I think I experienced the same with efficacy over time, and need to be able to change it up periodically.  I am going to start trying late afternoon exercise at the gym and see if that helps.  

    L3-S1 ALIF Feb 2018 and 

    L3-S1 PLIF Laminectomy and Fusion March 2018

  •  Hi Joe1Q
    If you can do it taking that much pain meds that is good for you. Sleep is a huge problem for so many I cannot remember the last time I got more than 3 hrs. in a roll. You get to know the neighborhood and what is prowling at night :D
    So many are looking at alternatives to help with the pain like MM etc. I have never heard of Valerian root have to read up on it. One thing you should always let your doctor know things you are taking or using. I don't know all your health issues but there can be interactions that are not good.
    Excuse my memory not so good but have you asked your doctor about the pain creams that are available?
    I am hoping you can get where you want to be and with less pain. It takes strength to go through that process of eliminating pain meds.
    Take care Sherri

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  • Sheri, thank you. I did speak to my PM doctor about valerian root this past Monday, who knew I was on CBD with melatonin and valerian in it, and asked what he thought of it. He claims he didn’t know that it possibly helped promote better sleep in some people.  

    After but mentioned some concerns I researched and it dawned on my my headaches the first two days were directly related to the dosing and I dropped to half dropper and they went away, but the effectiveness was drastically reduced.   I am now not doing it at all and going to ask my dr about going back on some kind of sleeping aid besides Belsomra which just leaves me too groggy.  

    And I can say I can hopefully convince my dr to provide a benzo Rx because  that Tuesday 3/5 was day one of ZERO OPIATES.  I’m so happy I achieved that goal, now just to stick with it and not rely on pain meds unless I absolutely need it, acute flare ups I guess. 

    BUT  I’m afraid I won’t be able to go off completely just after 5 days of success, realizing the pain that I’m in especially at night.  I have new back pains I didn’t have preop which are in a different area than my surgery and hurt way worse than 3 weeks ago when that started and I was still on 60mme.   I have old back pains that are numb and not sharp like they were originally which were nothing when I was at 60mme.  Now they stop me at times. And I have the lingering post op neuropathy pain mostly below the knees and nearly constantly at some level up to a 5-6 throughout the past week.  I took the week off originally as a way to get through this finally wean off opiates  and MM has helped quite a bit, but it’s expensive and I have no idea how I can cope all day without anything, MM or opiates, to ease the pain.  

    L3-S1 ALIF Feb 2018 and 

    L3-S1 PLIF Laminectomy and Fusion March 2018

  • Sherri, I didn’t answer your pain cream question. I’ve not asked him, but I did tell my PM Dr early on in my recovery that I had started using CBD cream, then someone suggested trying a higher THC in a salve, to which he said ‘whatever works for you.’  He suggested nothing else.   

    I apply to my feet every morning before I do my sock struggle(I can’t believe it’s so hard to put on socks after a year, another thing to get used to). The salve seems to work for me in that after I do it my feet have less pain, and if I forget it I seem to have more pain that day.  There are no other ingredients besides olive oil and beeswax, and the ‘proprietary essential oil blend’  and on the top it says ‘High THC’ but gives no percentages or any other info but the brand name which I won’t say here  

    I know it might be placebo affect, but if it works....why not. problem is it’s only available at MM stores or delivery, and my city or state regulated dispensary doesn’t carry it, so i search forever to find it and buy two tins which lasts me about 3-4 months, put on sparingly, and costs ~$50/tin.  

    L3-S1 ALIF Feb 2018 and 

    L3-S1 PLIF Laminectomy and Fusion March 2018

  • This is day 8 of zero MME.  the neuropathy like foot and lower leg pain at night is really difficult to handle, during the day it’s better.  I’m used to a 1-2/10 pain level while on pain meds, right now it’s pushing 4-5 /10 and my patience for dealing with this at night is wearing thin after only a week.  

    Anyone gone through this and know if there is a certain length of time that it takes for the opiates to exit your your system?  And what was your pain level before after titration?  and did you have to go back on low dose opiates, or another pain remedy?

    L3-S1 ALIF Feb 2018 and 

    L3-S1 PLIF Laminectomy and Fusion March 2018

  • Hi Joel,

    I applaud your ability to come off the pain meds.  I don't think I could ever do it.  I have tried a few times to cut just one pill a day out and I am so miserable.  I cant sleep without the pain meds. 

    Are you being pressured to stop your meds or is this your choice?  I personally don't care what others think as I want to be as comfortable as possible.  I would like to cut back because of digestive issues.

    Please do what is best for you.  No one should suffer in pain.

    God bless

    dmo

  • nutcase007nnutcase007 United StatesPosts: 937
    Joel1Q - Thanks for your very candid log of your journey coming off of opioids.  Question:  Did your doctor encourage you to taper down as fast as you did or was it a choice by you?  My max MME daily amount ever was 90 MME.  After most after my three ACDF surgeries, is was at 60 MME daily for a month or two, but over my 21 years of opioids, most of the time I was 30 MME. 
     
    Like yourself, I have been doing a taper, but slower.  I am now six days without any opioids and have never used MM (mainly because it only recently became legal in my state, the product being sold is known to be very inconsistent and very expensive).  My reason for quitting was that the opioids were not even cutting any of the edge of pain any more.  My PM doctor had allowed me to significantly increase my opioid level a couple of months back and it still did nothing for me. 
     
    In addition to no pain relief with the use of opioids, I was being refused any antidepressant aids.  SNRIs and SSRIs make me violently sick.  The antidepressant relief that has been found that works for me is benzo based.  Yea, the latest rule, no opioids and benzos, no matter how small the dose.  Coming off of opioids has been a living hell for me without any antidepressants.  Tomorrow, my scheduled visit with my PM, I find out if he will really write me scripts for benzos.  I have a bad feeling that he will refuse them to me. 
     
    Question to any readers of this thread, have any of you ever experienced pain so intense that you got no relief from any level of opioids?  Any doctor that I tell them of my experience, they just brush it off as "opioid tolerance".  Low levels of opioids helped "cut the edge" off my pain for over 20 years and all of a sudden, it no longer works.  I have a very difficult believing the line about opioid tolerance.
     
    My wife has found me totally responsive in my reclining chair.  Before "passing out", I remember being in extreme pain and when I "come to", I was still in intense pain.  The only resulting tests that were performed on me was a stress test for my heart which came back clean.  The cardiologist thinks my passing out is from the intense pain.  My worst pain originates at the base of my neck and then primarily radiates through my neck, shoulders, upper arms and completely around my upper back/chest. 
     
    I've been waiting for a while and have to wait until April 3rd for an office consultation with my neurosurgeon who do my last two ACDFs.  Don't ever forget, pain is no emergency.
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