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    Oxy is not working well anymore and need ideas

    Hi,
    I was on oxycontin from a few weeks post op in March 2006 to October of 2007, but it seemed to hit a plateau where even with increasing the dosage, it just was not providing the relief that it did before, so I went off it. We tried Opana, and while we were still titrating, I had problems with nausea and had to use phenerghan to combat the nausea once we reached 40 mg t.i.d., so they put me on Methadone. We slowly went up on that to 40 mg tid and it made me extremely dopey. I have small kids, so dopey regularly is not a good idea. Back on the Oxycontin ( 40 mg tid) and Oxy IR for breakthrough but I am still having the same problem where it is just not offfering decent pain relief.
    I am going to suggest trying something else but what? I want to be able to function better than I am at the moment, and am tired of the unrelenting pain....
    Then there is the problem with the baclofen. I am taking 15 mg tid, and I am getting hit with really painful muscle spasms that almost knock my legs out from under me. They are so painful that they bring tears to my eyes, which is really embarassing out in public. I asked about increasing the baclofen, but since the doctor added cymbalta to my Lyrica 200 mg tid, he wanted to wait and said that he would change it over to zanaflex. He also said that I am at the max daily dose of baclofen? I thought that was 80mg?
    Anyway, I need some ideas of some other pain medication to try....I have run out of ideas.....
    I am also getting my first powerwheelchair and a scooter. My insurance thankfully is paying 100% of the cost.
    They should be in in a week or 10 days.
    Maybe those will help with decreasing the muscle spasms some......I hope so.
    Sandi M

    #2
    Sandy I was recently put on Klonopin for spasms in the neck, head (from the Occipital Neuralgia) chest muscles and upper back and it seems to be working very well. This is for seizures and for anxiety, but it pretty much stopped the spasms in their track. I'm only taking 3 half tabs of the .5 mg a day and it is working. Now this is a drug that will probably have to be increased as the body seems to acclimate to it, but it's enabled me to actually work out in the garden for several hours rather than a single hour before the spasms get me stiff. Have you ever been on it?

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      #3
      I was taking 120MG of oxycontin every 8 hrs, then on to methadone which I still currently take 30 mg 3x daily + 200 Mg of lyrica 3x daily. The combo of mehtadone+Lyrica works well, but has made me gain 50+ pounds in a year and I am gong to get off of it because this is rediculous........

      Good Luck, Rudy

      Comment


        #4
        Originally posted by Lee555
        Sandy I was recently put on Klonopin for spasms in the neck, head (from the Occipital Neuralgia) chest muscles and upper back and it seems to be working very well. This is for seizures and for anxiety, but it pretty much stopped the spasms in their track. I'm only taking 3 half tabs of the .5 mg a day and it is working. Now this is a drug that will probably have to be increased as the body seems to acclimate to it, but it's enabled me to actually work out in the garden for several hours rather than a single hour before the spasms get me stiff. Have you ever been on it?
        Thank you Lee. I dislike this medication rollercoaster, almost as much as I dislike the pain. I'm really disappointed in the Oxycontin. It seemed to work much better than it is right now, when I first went on it.
        Someone suggested MS Contin or Avinza? I can't remember now what it was, but I need to find something that is going to work, decently, and allow me not to be dopey...or at least not as dopey as the Methadone makes me.
        I will ask about Klonopin. It may be an idea, depending on what the doctor's think.
        Sandi

        Comment


          #5
          Originally posted by Rudy
          I was taking 120MG of oxycontin every 8 hrs, then on to methadone which I still currently take 30 mg 3x daily + 200 Mg of lyrica 3x daily. The combo of mehtadone+Lyrica works well, but has made me gain 50+ pounds in a year and I am gong to get off of it because this is rediculous........

          Good Luck, Rudy
          Thanks Rudy,
          I guess I want the best of both worlds, lower doses and adequate pain relief, neither of which it seems is going to happen.
          Do you have uncontrollable sweating with the Oxycontin? It is driving me nuts, since it happens a few times a day, and with no real rhyme or reason for it. It's not like I am lifting weights or anything like that, rather sitting down or watching tv, even in the middle of the night, it happens.
          I had a weight gain the first time with Lyrica, of 40 pounds over the course of about 7 months, which also drove my blood sugars up, so they took me off it for a bit......we are hoping that I can find a way to keep the weight gain down, and stay on the Lyrica since it does work well for the neuro pain.
          Sandi

          Comment


            #6
            I agree, that you aren;t at the max of baclofen yet, but when I was at 80mg and up, it made me very sleepy. Anything over 80 and I would literally drop off in mid sentence. As you said, not an option with kids to take care of! (Or any other instance).

            How frequent are the muscle spasms? I was taking baclofen for high tone mostly (high enough to interfere with transfers and adls) and ended up with a pump.
            T7-8 since Feb 2005

            Comment


              #7
              its driving me nuts too.
              cauda equina

              Comment


                #8
                Originally posted by sandim
                Hi,
                I was on oxycontin from a few weeks post op in March 2006 to October of 2007, but it seemed to hit a plateau where even with increasing the dosage, it just was not providing the relief that it did before, so I went off it. We tried Opana, and while we were still titrating, I had problems with nausea and had to use phenerghan to combat the nausea once we reached 40 mg t.i.d., so they put me on Methadone. We slowly went up on that to 40 mg tid and it made me extremely dopey. I have small kids, so dopey regularly is not a good idea. Back on the Oxycontin ( 40 mg tid) and Oxy IR for breakthrough but I am still having the same problem where it is just not offfering decent pain relief.
                I am going to suggest trying something else but what? I want to be able to function better than I am at the moment, and am tired of the unrelenting pain....
                Then there is the problem with the baclofen. I am taking 15 mg tid, and I am getting hit with really painful muscle spasms that almost knock my legs out from under me. They are so painful that they bring tears to my eyes, which is really embarassing out in public. I asked about increasing the baclofen, but since the doctor added cymbalta to my Lyrica 200 mg tid, he wanted to wait and said that he would change it over to zanaflex. He also said that I am at the max daily dose of baclofen? I thought that was 80mg?
                Anyway, I need some ideas of some other pain medication to try....I have run out of ideas.....
                I am also getting my first powerwheelchair and a scooter. My insurance thankfully is paying 100% of the cost.
                They should be in in a week or 10 days.
                Maybe those will help with decreasing the muscle spasms some......I hope so.
                Sandi M
                for spasm valium works good and interacts with baclofen for muscle relaxation, honestly we are lost case dealin with pain, its very unpredictable dealin with complication with these injury that burden us, i live in happiness through or with my spirit
                life begins when you walk in spirit papito189@gmail.com

                Comment


                  #9
                  Originally posted by sjean423
                  I agree, that you aren;t at the max of baclofen yet, but when I was at 80mg and up, it made me very sleepy. Anything over 80 and I would literally drop off in mid sentence. As you said, not an option with kids to take care of! (Or any other instance).

                  How frequent are the muscle spasms? I was taking baclofen for high tone mostly (high enough to interfere with transfers and adls) and ended up with a pump.
                  Hi Sjean,
                  They are pretty darn frequent, multiple times a day, and they are so painful anymore it's just not funny. They seem to hit out of nowhere, with no real rhyme or reason to them. The front and back of my thighs, and behind my knees mostly. They literally put me off balance, so I tend to stay near something that I can grab quickly when they hit.
                  Sandi

                  Comment


                    #10
                    Originally posted by metronycguy
                    its driving me nuts too.
                    I'm sorry to hear that Mike.....Seems to happen to alot of us on Oxycontin.
                    Take care. I'm sorry that the scs did not work out for you. I was hoping it would give you some relief.
                    Sandi

                    Comment


                      #11
                      Originally posted by papito1
                      for spasm valium works good and interacts with baclofen for muscle relaxation, honestly we are lost case dealin with pain, its very unpredictable dealin with complication with these injury that burden us, i live in happiness through or with my spirit
                      Thanks Papito1,
                      I guess valium is always an option, may be something to discuss with the PM when I see him next week.
                      Sandi

                      Comment


                        #12
                        Originally posted by sandim
                        I'm sorry to hear that Mike.....Seems to happen to alot of us on Oxycontin.
                        Take care. I'm sorry that the scs did not work out for you. I was hoping it would give you some relief.
                        Sandi
                        yeah and the thing that is pissing me off is the sales rep is trying to make like it is working better than it is.
                        they are getting pissed cause i contacted the manaufacturer.
                        the scs works a little, it works better for my walking pain,
                        it really doesn't work well for the shocks at all.
                        the shocks, stinging, hacksawing pain was the reason it was implanted. they make way too much money implanting these things.
                        cauda equina

                        Comment


                          #13
                          Originally posted by metronycguy
                          yeah and the thing that is pissing me off is the sales rep is trying to make like it is working better than it is.
                          they are getting pissed cause i contacted the manaufacturer.
                          the scs works a little, it works better for my walking pain,
                          it really doesn't work well for the shocks at all.
                          the shocks, stinging, hacksawing pain was the reason it was implanted. they make way too much money implanting these things.
                          I talked to a rep at one time about scs. I don't want one at this point, and since I can't tolerate a TENS unit for more than 4-5 minutes at a time, I wanted to know how it would be different since the sensations are similar and she had no answer other than to tell me that I should just have the trial anyway......
                          I have to have an MRI of the brain today and cervical spine. My neurosurgeon thinks I may have Multiple Sclerosis on top of the CES and arachnoiditis......when it rains it pours around here.
                          I hope that you can get it straightened out so that it does something for the electrical shocks and the stinging. It's so frustrating to do something so invasive and then not have it work. Hang in there Mike.
                          Keep calling whoever you have to , to get answers.
                          Sandi

                          Comment


                            #14
                            Hi sandi, I'm new to the website but have dealt with severe chronic pain and muscle spasms. I have been around the same circle of the meds that you listed for chronic pain to replace the oxycontin. Have you tried the fentanyl patch. It lasts for 3 days and has very few side effects. I am also on baclofen and the max dosage is 45 mg per day. hope this info helps. kevin

                            Comment


                              #15
                              Hi Sandi Have you tried to ask for Kadian, I switched off the oxycontin onto that and like it alot better, it is some form of a morphine but I love it alot better and a extended release as well.

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