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    Strong non-narcotic pain killers?
    tra_hansen posted:
    Hi, I am new to the boards, so I guess I should give you a bit of an introduction first. My daughter is 20 years old. She has had surgery for three neurological conditions: Tethered Cord Syndrome, Chiari Type I Malformation, and Syringomyelia. After the most recent surgery this past September, she had a serious fall in December while she was still healing; the most recent MRIs show degenerative changes and either a disc fragment or complex cyst outside of the vertebrae along with a narrowing of the thecal sac (10mm down from 12mm on the previous scan). She had been prescribed Oxycodone 5mg tablets to be taken 1-4 tabs every 4 hours PRN for pain after her surgery; by the middle of December she had weaned herself down to where she was taking one tablet perhaps 2-3 times a week, but since the fall she has been taking 15 mg every 4-6 hours and on bad days she is in pain before 4 hours is out.

    Last week we saw a pain management specialist who, converse to most I have read about and the one other experience we had, went very in-depth with us (her appointment was at 12:45 and we did not get out of the appointment until 3pm). He said that Tasha's back is not 'fixable' (which we already knew since Tasha's neurologist had her most recent scans reviewed by a neurosurgeon) and that the condition her back is currently in is the best it will ever be. He told us that the two best options he could offer that he thought would help were either an epidural nerve stimulator or to stay with narcotics...adding a long-acting narcotic at night to help her get a good night's sleep.

    Tasha does not want the stimulator because this would mean that she can no longer have MRIs which she will need periodically to monitor the condition of her syringomyelia, but she does not like the narcotics. She does not like the loopy, high feeling that she gets and she does not like the fact that he told us that she will likely have to gradually increase her dose to get the same level of pain management as her body gets accustomed to the drug.

    Tasha was given a script for Toradol after her fall which does work really well, but the pharmacist told her that State law limits oral Toradol to something like 20 or so tablets in year due to possible adverse, needless to say, she does not take it unless she is in dire straights and the oxy has not cut her pain.

    I had a friend that mentioned perhaps Tramadol would be better, but when I said something about this to Tasha's neurologist, she commented that it was not much better than a narcotic.

    Is there nothing better for controlling long term chronic pain than to have to spend your life being doped up on narcotics?

    Thanks for any insight or advice y'all have and thank you in advance for your replies. Tracy
    _swank_ responded:
    The fact is, some things can't be fixed. Pretty much all the regular readers of this board already know that. So the next best thing is to control the pain as well as possible. If that means taking narcotics forever then that is a whole lot better than living in pain.

    You need to read up on the difference between dependence and addiction.

    Your daughter needs to try the long acting pain meds. The side effects go away with time. I live on narcotics daily and never feel dopey because of them. That side effect went away a long, long time ago. Because my pain is controlled I'm able to live a productive life. I can't imagine not having that option.
    cweinbl responded:
    "Tra_hansen," which is better - to be in constant severe pain? Or to be "loopy" with medication side effects? The answer to this question is very simple.

    I've lived with constant severe pain for more than 40 years. My degenerative disc disease began at age 17, with a horrific disc explosion. Age has nothing to do with how to treat someone in constant pain. With strong narcotic pain medication, I had a 30-year career that included administrative responsibilities at a major urban university. The same strong narcotics allow me to purse a successful writing career in retirement. Without strong narcotics, I would have decided to end my life many years ago. With them, I've had a lifetime of pleasure and success.

    Would I rather be completely alert and in horrific pain? Or, would I rather deal with medication side effects and have far less pain? This is a no-brainer. GIVE ME THE NARCOTICS! Anyone who has been in constant severe pain would gladly take the drugs and be happy to deal with the side effects of feeling "drugged" for a while You should also know that those side effects almost always diminish over time. After 40 years of using strong narcotics, I now only feel less pain. The "drugged" feeling disappeared many years ago.

    Tracy, you should know that the spinal cord stimulator and the intrathecal infusion pump have low success rates, particularly with patients who have had prior spine surgery. They require surgery to implant and to remove. And the surgery can itself create fibrosis (scar tissue) that can later impinge a spinal nerve root. Like spine surgery itself, these are last-resort options.

    If your daughter has chronic severe pain, then there are many options she has not yet tried. Has she used Fentanyl Transdermal? Fentanyl is many times stronger than her Oxycodone. Fentanyl allowed me to work 9 years longer than I had imagined possible. I continue to use it with efficacious results in retirement.

    Torodol and Tramadol are NOT narcotic pain medications. I would define them as "lame medications." They will rarely do the job of retaining severe pain. The feeling of being "doped up," virtually always dissipates over time. Anyone here who has used narcotics long-term will agree with this.

    Oxycodone 5mg is a TINY dosage. I could eat them like candy and feel no relief. Give your daughter the narcotic medications that she requires to have a life. The side effects will dissipate. The alternative is to commit your daughter to a lifetime of constant severe pain.

    A person with your daughter's condition can also try a corset, brace, TENS, traction, acupuncture, biofeedback, physical therapy, kinesiotherapy, injection of steroids and anesthetics, non-steroidal anti-inflammatories, cortisone, rhyzotomy (radio frequency denervation), spinal cord stimulator, intrathecal infusion pump, off-label medications (anti-depressants, anti-convulsants), combination of long-acting pain medication with breakthrough meds, counseling, hypnosis and meditation.

    Do not deny your daughter the chance for a lifetime of happiness and success. Give her the medications that will help. Provide her with the treatments described above, available at a comprehensive pain management program. Tracy, if I were your daughter, I'd rather be "loopy" than paralyzed by severe pain.
    littletwister1963 responded:
    Hello and welcome. The one drug I would suggest although it is a narcotic is a fentynal patch. They are very strong but they last for 2-3 days depending on how she does and her pain. they come in different strengths and are a great drug.

    annette030 responded:
    Toradol is an NSAID, but can only be used for very limited time frames due to adverse effects.

    Tramadol is listed as a non-narcotic in many drug books, but does cause withdrawal in many people when it has been used daily for a period of time, other people have no trouble going off of it. If 5 mg. of oxycodone makes your daughter feel loopy, then maybe tramadol 50-100 mg. is all she needs for pain right now. Tramadol is recommended for mild to moderate pain. Some folks find it works best if used on a set schedule every 6 hours, some people don't find it strong enough to help much at all. I've used it and I like it.

    Some problems cannot be fixed, and it sounds like your daughter has some that cannot be fixed. In that case one must find out all her options and decide what to do next.

    I personally believe that it is best to exhaust all the non-surgical options before going to a surgically implanted device for pain control. She should be aware that the loopy feeling you describe is often from too high a dose of opiates and/or goes away within a few weeks on the drugs on a regular basis. There are other drugs in addition to the short acting one she has tried. Long acting opiates often do not give one a loopy feeling as the medicine is released very slowly into ones system. I suggest she try whatever one the doctor suggested at night and see how she does. One copes so much better if one can sleep at night. She may want to try taking a long acting med both at night and in the daytime to avoid the loopy feeling the short acting meds can give us.

    There are non-opiate meds like antidepressants or antiseizure meds that are often used for chronic pain that she might try. They mediate the neurotransmitters that carry the pain signals to our brains.

    ALL drugs have some side effects for some people, but most go away with a bit of time, and if one med doesn't work there are others she might try.

    I have been on narcotics for well over ten years on a daily basis, and have never felt doped up. They do make me able to function pretty well.

    Best of luck to you both. She is lucky to have you researching things for her.

    Take care, Annette
    JJONES579 responded:
    I have taken Lortab 10 for several years for fibro and OA. A year ago I had Tarsal Tunnel Surgery on my right foot. Now I am in constant pain 24/7 with this foot. My pain doctor changed me to Oxycotin but I had no relief with it, so then she said Methadone was all that was left for me and my pain. I did not want to take the Methadone but I tried it for a week and a half, but once again my pain was not relieved. It made me so drowsy I could barely work. I asked her to give me my Lortab back as it worked better. She got mad with me but she gave the Lortab back to me but she prescribed a lower dosage than before I think just for spite. So now I really have to hurt because the lower dose does not get it. Has anyone ever had any experience with the Tarasal Tunnel surgery? I regret having it everyday now. You are right about tramadol too. It is a very lame medication. Any recommendations for other painkillers I could ask her for?
    gailb54 responded:
    Hi Tracy,

    I'm sorry to hear about your daughter's medical problems and pain. My children are in their 20's, too, and nothing is harder than to see our children hurt. You are very good to be looking for answers for her. She is fortunate to have a mom like you.

    I cannot say what medication might help your daughter, but like everyone says, most of the "loopy" stuff goes away with a little time. I was on too much Lyrica for a while and never got out of that stage but only because it was much too much. I do have to say, though, that I have ongoing issues with feeling "less sharp" and more forgetful on my medication. I don't know if this is part age, but I am able to detect that my mental capacities are diminished some. But, on the other hand, I am alive and I don't think I would be if not for the medication.

    Many of us have had to come to terms with not being "fixable" physically and it is just plain lousy. I was feeling sorry for myself for a good while and still do sometimes. One of the things that has been most helpful for me was actually this board. I would like to suggest that you encourage your daughter to at least read it for a while if she is interested. It helped me so much to know that others did understand what it was to live with pain 24/7 and pain that really changed my life. I read on here a few days ago something that lifted me out of my self-pity that day. I have learned so many things about medications and treatments, too. Most of all for me it is just very comforting to not feel alone in my pain.

    The last thing is that I think narcotic medications have a down side but at some point that down side is far outweighed by the relief and help that can come from medication. I see my medications as a big blessing. I believe they have saved my life. So, even though it might not seem perfect to you and your daughter right now, I think you might consider what a blessing they could possibly be in the future. And, that most people report that they do very well taking them.

    I wish your daughter all the best as she walks through this. Take care, gail
    cweinbl responded:
    "JJones579," ask your doctor about Fentanyl Transdermal. It's stronger than Oxycontin and is available in dosages from 12.5 micrograms to 100 microgram patches. They provide constant pain relief for up to 72 hours per patch.

    Some doctors do not prescribe this medication out of concern for patient overdose, patients selling it on the streets or for fear of being on a DEA list. I can tell you that it has been a godsend for me, as well as many others within this forum. Used as directed it is completely safe and effective. Fentanyl gave me 9 extra years of work, when I thought it was impossible. Side effects are usually minimal and manageable.
    Mallardman responded:
    I would like to ad one thing to what Charles said..

    I`m not so sure you can be totally alert when you are in intense pain . Your pain is overcoming you to the point you can`t think straight !!!
    toobkind responded:
    I am very new to this website and have never been on a message board before about a week ago . I have read several discussions on chronic pain and the medications used to relieve "us" from these ails and I always agree with what Charles (cweinbl) has to say. I have also learned from his answers and opinions. Thanks Charles! Any way....about me: I am in my mid 40's and in Aug., 2002 I had a horrible bicycle accident. Just me and the pavement-no cars involved. I was left with a spinal cord injury and head trauma occurred when I went over the handlebars and hit cement. I couldn't move from my armpits down and certainly couldn't take care of myself so I had to move in with mom (am still with her). Long story short, I can walk now with the aid of a cane or a walker but my life is lived in horrible pain on a daily basis. I didn't break my spinal cord and have had no surgery's on my back or neck because I have been diagnosed with a syrnx on C6 which is inoperable. I have also been diagonised with neuropathy in both legs and feet. No one can figure it out because my L and T spine show up ok on the MRI's, and we all know the T spine controls legs and feet. I am at my wits end and have often thought that if I didn't have a 5 yr. old son, I wouldn't live like this. My whole life has been taken over with pain, and I mean every part of it. I live in the Florida panhandle and the doctor's around here are admittedly afraid to prescribe pain medication because 2 local dr's have been shut down and charged with various horrible crimes (one of the dr's I saw for 3 yrs and he helped me out a lot) in the past couple of years, the latest being about 6 months ago. I have tried so many different things and so many different drugs. I have a spinal cord stimulator (does not help me one bit). The only relief I can get is with narcotic pain medication. Oh No!!! Did I say the "N" word. Yeah, that's how I feel about saying it or even mentioning narcotics. The doctor's have me gun-shy. I have been made to feel like I am a drug seeker, a doctor shopper, a drug addict, a liar, an exaggerator, and any other name you can add to the list. I am on a fentynal patch now (for the past month) and am using 100 mcg's every 48-72 hrs (at best). I have a very high tolerence to most drugs so it didn't take very long to go from th 25 mcg patch to the 100. Sometimes my breakthrough pain is so horrible I put a second patch on and overlap the time frame for them. My problem is my dr (a family dr who I just recently found and is trying to help me, bless his heart), doesn't understand the need for a short acting narcotic to be used for breakthrough pain. He told me I am on the strongest pain reliever out there and I shouldn't need any thing else. Any one that knows what I am talking about will understand me. I have said way too much. Sorry! I really needed to vent to people who really understand and care. Thanks Kelli
    gailb54 responded:
    Hi Mallardman-

    That's a very good point. I've struggled with the side effects of my meds for over a year but when the pain is cranked up high I can't do ANYTHING. It (the pain) makes it absolutely impossible for me to think or write or read, etc. The side effects have some impact on my concentration, memory, and alertness, but the pain screams so loud that there's no comparison on what is the worst. Glad you reminded us (me). Take care,

    annette030 responded:
    I understand you feeling a need to overlap your patches, but since doctors are hard to find that prescribe opioids in your area, I would use them exactly the way the doctor prescribes them.

    Do your own research and take it to the kind doctor who is currently giving you the patches. If you run out early, or otherwise get yourself into trouble, he may stop prescribing them to you at all.

    Take care, Annette
    cweinbl responded:
    The "loopy high feeling" associated with narcotics almost always dissipates after a few months. If your daughter will not try a spinal cord stimulator or intrathecal infusion pump, and she's not a candidate for surgery, then she will likely have to force herself to get past the "loopy" stage of narcotics.

    After using Fentanyl Transdermal for a few months, the "drugged" feeling disappeared completely. And, Fentanyl is the strongest pain medication available. Now, I only feel less pain. Tracy, many people dislike the feeling of losing control or the fuzzy cognition associated with narcotics. But it almost always disappears over time. It may be the only way to manage your daughter's pain. She just needs to get past the first few months.
    gneebean responded:
    hi all-my morning "breakfast" of pills doesn't give me the "loopy" feeling at all. neither do the last set of pills. i just have problem with the middle dose, and that is, i have had the "loopy" feeling for the last 3 years. pain doc has no clue as to why this does it! after the breakfast ones, i have one of the morphines between the first and second "meals" of pills, and two between the loopy ones, and the night time ones. that is the only time i have that loopy feeling. it's been going on, like i said, for 3 years, taking soma and gabepentin, and the morphine was added about 4 months ago, so i know it's not from the morphine. it usually lasts for about an hour, and then i just have to be careful standing up from a sitting position, or even laying down, as i do get really dizzy. just another lovely side effect! so i just take it easy for that hour, don't do anything at all until it just "goes away"! it's something that you'll get used to, then you hardly notice it at all. hope all this makes sense, not having a good night! just pray that tomorrow will be better!

    cstrap replied to gneebean's response:
    I was interested. but also concerned, about the seemingly cavalier attitude mentioned in the above e-mails about the highly potent and strong addictive nature of the fentynal patch.
    Some of these people reported being on strong narcotics for 40 years??? Call me crazy, but that sounds like an addict to me.
    I have had joint issues since my early twenties...several knee surgeries, cervical spine surgeries, foot surgery, etc. The last surgery was a total knee replacement. I am farely young, 53, to have had knee surgery for no reason other than I was just born with crappy joints and cartilege that wore out way before it should have.
    I was seeing a pain specialist for other issues before I went in for the replacement. She put me on the fentynal patch (50mg)
    I am a teacher, so I continued to teach from a wheelchair before I had the surgery. I had my surgery a little over a year ago..I woke up in a panicked state, which had never occurred with the other surgeries. They slapped another patch on me as soon as I got into recovery.
    I returned to teaching after three weeks..too early...with the patch. I wore the patch for the next four months. My orthopaedic surgeon did not want to get involved with my pain
    management; he left that up to the pain specialist. Keep in mind that this pain specialist rarely saw me, but rather would tell her nurse what to tell me.
    She weaned me down to 25 after a few months. I had bad withdrawls from that, but nothing compared for the hell I was about to encounter. After school ended, my husband and I got ready to move to another city...I was so weak, depressed, suffering severe insomnia. When my "pain specalist" learned that I was moving, she basically dropped me as a patient. She would not renew my, you guessed it...I cold turkeyed the patch. I have given birth, and I can tell you that labor pains is a toothache compared to the SEVERE withdrawls from the fentynal and cold sweats, insomnia ( didn't sleep for 3 days at a time), nausea, diarrhea...I would have welcomed death at that time.
    It took at least a month for all the symptoms to dissapate, but I did spend two stints in the hospital for clinical depression.
    It was easily one of the lowest points in my life.
    I have since learned that going off the patch without medical assistance could be dangerous ( seizures) or worse ( death).
    Right now I am on NO painkillers...I only take Celebrex, which helps very little. I had to take the year off from teaching because of my experience. I want to go back to teaching,but it seems that my knee device is lose, and I can either have another replacement, or "deal with it". The pain I deal with every day has ruined my quality of life.
    I am in search of a painkiller that is non-narcotic and non-addictive. I would welcome any suggestions.

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