Off opioids, pain better. Life is back!


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We have all seen pain go down when patients taper off opioids. Look down many paragraphs to see a case report near the end.

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I prescribe opioids for intractable pain, but I have never seen opioids take pain to zero on a sustained basis, year after year – I have seen glial modulators with the specific off-label combinations of medications do that. Chosen because of mechanism: neuro-inflammation that we know is present in chronic pain or chronic depression and recently reported in teens with early psychosis. Inflammation. Brain on fire – imaginary fire, skin is burning, shooting, pulsing, changing from ice to hot, unable to tolerate light touch, sunlight.

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You don’t have to be a rocket scientist to read the brilliant science that’s come out since 1991 that has changed neuroscience more profoundly than anything I’ve ever seen – many prizes given from many countries. Ignored by docs – don’t blame them. Not everyone is able to take the risk to be different in medicine. It is NOT rewarded. Doctors can just ignore patients now after 30 years of living with pain 10 on scale of 10, pain now zero. Like one of my patients best care for 8 years, told to live with pain that was 8 on scale of 10 constant, unvarying, burning.

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You never will see that with opioids, procedures, pumps, stims, blocks, biofeedback. Most of my patients with intractable pain from hell, been there, done that at the top places: Boston, Philly, Cleveland, Mayo, years of grueling P.T. Kids get the worst. No drugs for pain until after age 18 – pediatricians need to be studied what they do, and oncologists need to be studied again. I know a top hospital in the country where for decades not one oncologist ever called for a pain consults – decade after decade. I know too many stories from too many top places about how cancer pain is not treated as well as it could be because of opiophobia perhaps, but there are so many other things done for cancer pain – oncologists refuse.

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The oncologist at a famous hospital in Beverly Hills that will go unnamed, threatened the grandmother of my UCLA Pain Clinic colleague, an MD Pain Specialist, who had come with her grandmother. Oncologist threatened the 90 year old woman: “If you want pain medicine, find another oncologist.”

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Any hospital would sooner get rid of pain specialists – they don’t bring money to the hospital like cardiologists who get streams of patients from around the country. In Houston, Netherlands would load a jumbo jet full of patients who needed heart surgery, fly them Sunday to Baylor and fly them back home end of week after heart surgery. Every single week, a plane full. These are GODS!

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Your pain is a low priority on the scale of gods. Excuse my tone. It breaks my heart to see every pediatric nurse threaten to walk off the entire floor if the MD did not call a pain consult. And I read in nurses notes, line after line after line the same thing for 3 months: “Patient screaming in pain.”

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I diagnosed the problem that they overlooked – every spinal nerve root coming off every level of spine was lighted up like a tiny 1″ band of pearls each side. This 17 year old athletic muscular tall male had lost 45 lbs of muscle, unable to move, screaming, 2 nurses required to bravely try to roll him onto his side to change sheets and toilet in bed, him screaming, perhaps rigid – I was never there then. Ignored by one of the world’s foremost oncologist for three months. The humanity of it.

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I’ve seen worse.

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GODS. These men are GODS. As a junior faculty, you do not look them in the eye, ask a question, or even speak to them. He was one of the best in the world, perhaps the very best, #1 – God of Leukemia, not god of pain so intense the lightest touch of skin elicits severe pain.

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That’s called allodynia. Slight touch, just a breath of air, very very slight touch = SEVERE PAIN.

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Nerve pain when severe does that. It can be focal or widespread, every where, like his. He had the mentality of an 8 year old, but loved playing basketball. Leukemia brought him in, and you cannot see leukemia on scans or xrays. Are you going to tell a GOD that pain exists in people with leukemia? – malignant blood cells and pain. No, no, no.  No one of the leukemia service was ever allowed to call a pain consult at a world famous cancer hospital. You would be fired. Career over. Mom was trying to raise the money to treat this leukemia. $30,000 she did not have.

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So many case reports I could write. But it never changes. Patient calls after decades of intractable pain. I have had them taper off opioids slowly before I see them. I assess whether I want to take them as patients. They’ve been to Europe and across the US, the best places, nothing has helped. Even ketamine coma in Germany, it did not last but boy it caused PTSD. You cannot give those doses of a psychoactive drug to brain. Ketamine is a short acting drug. No matter how you give it. The dose is different for everyone. They burned through her threshold and PTSD could not even be discussed, it was so bad.

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I never use ketamine alone – only with certain combinations, and later, my patients may not need ketamine again. Pain free. Not everyone becomes pain free, but it occurs so regularly that it’s almost hard to fall off my chair so many times with the results. It used to be a surprise many years ago and I would always fall off my chair. It has become regular. No surprises. This is getting old and sad no one knows how to do it. Pradigm shifts do not just occur, and not without publications, studies, one slow drug after another. That’s not the way you are ever going to get results – study only one single drug for 10/10 pain present for years to decades. When disabled 30 years, the standard for research is to study one drug. That’s fine for mild conditions.

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It’s incomprehensible to think one drug alone is going to budge intractable intractable pain or depression. And difficult for me to understand patients who think one drug alone will do everything though they have failed so many classes of medications for years or for decades. One drug is not adequate to restore balance in the complex system of transmitters, receptors and DNA changes.

Wrong thin

Mechanical pain complicates things and must not be overlooked even though it may be “minor” compared to the bear in other parts of the body. Wrong thinking. All pain ends up upstairs in the big lake at top (brain). Not minor. Never has anyone found a pill that can do better than mechanics of the spine or limbs.

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My new patients have already been through every known form of interdisciplinary treatment at the worlds best pain clinics. You all know that entails a number of specialists as a team – you do the work, mind and body. Done by most of my patients before they see me. Past History.

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Once off opioids:

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My focus is on neuroimmunopharmacology. Read January 2011, the innate immune system. There must be a balance between anti-inflammatory cytokines and pro-inflammatory cytokines. The pro-inflammatory cytokines are too high, out of balance. Let’s modulate them, restore balance.

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Lovely to see people better. It makes me want to go to work. I suspect CRPS may respond best to these medications  but I have seen many other syndromes respond well – but remember, no treatment is 100%. I see impossible cases. It would be a miracle if anyone saw 100% remission or cure in their medical practice. But the combinations of medication I am using are certainly life saving for many of the toughest.

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Mechanics – so many patients have groaned when I said I felt they had to see the physical therapist I refer to. Groans. 30 years of P.T. never helped, they say. After seeing Bruce, they come back smiling. Bruce says these are basic things he does. Well, didn’t help my patients. Not one of the best university centers in the country where my patients have been for 3 to 6 months, never helped one bit. Bruce says it’s basic. Bruce is unique, certified orthopedic physical therapist – most never get that high degree. Decades after training at the famous rehab center Rancho Los Amigos from whence books were published, basics of orthopedics and rehab. After seeing Bruce, patients come back smiling, awed. I am shocked there is still so much crap P.T. out there. I thought all this changed after the new manual P.T. was brought to the US before 1980. Yikes.

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Opioids. How many use them for anxiety instead of pain, misreading and confusing what you are treating yourself with. They work great for anxiety, but America – you must learn better ways to cope and opioids are not to be used for anxiety. I hear the groans and downright refusals. A few years later, one of my older guys has nowhere to go, nothing helps but the opioids and his body will not tolerate more. Not one coping skill was going to get near him years ago. If his wife couldn’t do everything for him, then his caregiver would. He wasn’t going to have it. Granddad is a very proud businessman who cuts himself off from family, they should not see he has a walker.

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Opioids ain’t the answer. But sometimes we have no better – in limits. Only after other things, glial modulators should be tried first. How many of you have seen results with gabapentin? Maybe I just only see the ones who’ve failed everything.

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I frequently see people who are better off opioids than on, but then, then what do MD’s do about that pain that may be still 6 out of 10 or worse? They don’t have an answer. And are not curious to figure out what to do with the new science. They have been trained the old way. Nothing new but hope for a new drug from pharma some day.

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I am writing so far off track. I hope you understand a little of this rapidly changing antediluvian field and that some places are still in the Middle Ages where we don’t treat pain at all. How do they get away with that? It’s not a priority anywhere. NIH gave one half of 1% to pain research in 2008. Really? !?!!

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CASE REPORT

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Many paragraphs ago, I was planning to write to tell you about a case, 2nd visit so much better! and a lot of that is simply due to being off opioids 6 weeks after 6 years on them. Falling asleep from opioids for how many years—  imagine an MD taking on a patient who said they need a new pain doctor because their old doctor cut them back and will not give them a dose that helps. Makes you wonder if they were falling asleep and getting any oxygen to the brain. I find myself in that position when people call for new appointment. I hate to be the one to tell you I am not going to increase your opioid but many other pain doctors will. Soon this nice person sitting by my desk would have been one of those opioid deaths the headlines tell us about. This person today sitting next to me, happy she is off, and better!

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She is not drugged, pain is down and it changed character/quality, still rated 6 on a 10 scale, but she is doing more, actually waking up alive instead of zombie until 5 pm, walking. Walking – that’s the biggest.

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She has CRPS for 6 years as well as pain of the entire spinal axis. Failed gabapentin, Lyrica, Spinal cord stimulator – implanted 2013.

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At the first visit Jan 25, one month ago, she had tapered opioids in 3 weeks [far too fast], and was off for 6 days, lost 15 lbs – opioid  fluid retention. I ask people to be off 2 weeks before seeing me but she was in crisis. Most of the time she was lying down elevating BLE’s [both lower extremities] as it reduces pain in feet and RLE. She used to play two soccer games back to back without a sweat 6 years ago.

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“And I feel better. I always felt like my insides were swollen,” brain fog – unable to read, blurred vision – improving, “and the character of the pain seems different. The nerve pain used to feel like I had a huge halo and if you just touched the halo, not the skin, it was unbearable. I feel like the halo sensation was severely diminished. My sister also said I am walking better than I ever had – I was just weaning off then.“

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Before seeing me, she had been on MSContin 30 mg x 3/day with MSIR 15 twice daily or on methadone 80 mg in past. Pain then was rated 6. Today, 2nd visit, off opioids for 6 weeks, pain 6/10. But walking.

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2nd visit, 4 weeks later

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Her prior “biofeedback therapist told me I should write a book.” Helped in some ways, just to teach me better body mechanics to minimize pain. Did both temp and pulse and wore EKG-type patches on her back for muscle feedback.

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Now using desensitization – on dorsum hands able to use loufa, and can use a special rough soap on palms she could not tolerate before. Dorsum left hand is nearly normal.

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Pain on opioids was “6 to 7 but different character, I’m much improved now,” ranging 4 to 7, average 5. “I could live with this.” It’s lower. I used to always say I want to cut off my leg, and I haven’t said that in at least a month.

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Foot felt so swollen like it was gonna pop, and be so cold, made it very difficult with pins and needles to put a sock or shoes on. The occurrence is much less and when it happens it feels less severe.

Still has mild swelling “more what I perceive than what I see.” Her friends say she is not a zombie anymore. She wakes up and is out of bed.

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“If I concentrate very hard, I think I can walk without a limp, but I think I need some retraining.”

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We have barely begun much treatment. She is on her way back to life. 

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I have seen patients become even better simply off opioids.

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You must treat the whole person: the mind, body and spirit.

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Physical Therapy, Cognitive Behavioral Therapy, Biofeedback, Medication, Procedures.

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Compounded medications are the key. Thank the insurance industry for not supporting anything but opioids. I can’t even prescribe Namenda off-label for a patient with dementia because her dementia is not Alzheimers or Vascular, mild or moderate only. She has traumatic brain injury with CRPS and I prescribe Namenda (memantine) in double dose – good science behind that, published around 2001 when I starting prescribing for pain. Now I see the best migraine docs doing it in the last year. I don’t know when they began using it.

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Namenda (memantine) not covered. Unless … two things are possible.

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But compounded medications are essential for these combinations of medication. What is this country doing to its injured veterans? Opioids do not work. But their mechanical spine joints needs are serious and I know it is not being addressed because manual physical therapists are hard for me to find in this age, only 40 years since it was brought to the US from British Commonwealth and Scandinavian countries. Impossible to find, to trust you have a good one, and far beyond that, Bruce is awesome. How difficult is it to train better physical therapists? Or upgrade teaching from the theoretical that all these shiny new PhD’s in physical therapy. But get me the clinical experience, Orthopedic Physical Therapist because Bruce is awesome. No other word for what he has done to unwind the cause of CRPS in the ribs after thoracic surgery. Drugs can only get you so far. The mechanics become everything and they can take your body to more pain than you will ever dream of unless mechanics are properly addressed. My local patients may live 2 hours away from Bruce. That is not feaseable.

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Obesity.

Then, the elephant in the room. Guardian just now reports Penguins on a Treadmill, Study shows fat ones fall over more often than slim ones. How can we help those of us who will not be helped? Sanity does not prevail in politics and thou shalt not forbid 80 teaspoons of sugar in each can of “energy” drinks. America waddling onward into disablity. Sanity in politics. Behavior. As a great sage said: “You cannot uncurl the curly tail of a pig.” 

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Behavior is the hardest for me to change myself. I know. I don’t care how old you are, let’s wake up! and get you back to life. Off opioids. So many of us give up too little food on our plate or treats. You do not have to exercise to do that.

 

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The problem remains:

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You have to be rich enough to get decent care for intractable pain in this country. Rich enough to afford the compounded medications that used to be covered by insurance – do these guys cover anything anymore? The business reeks like the rest of the 1%. Same people. The big three: energy, pharma, insurance. Waves of anger across the country. The Middle Class is disappearing and they cannot afford an extra $300 a month for medication without family struggle. Stagnation.

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Donald Trump and Bernie Sanders are riding on that anger, and Democrats are shifting to Trump who, as Jeb Lund writes, with his “gallimaufry of disconnected thoughts” has the money to put his bombast into action. He destroyed his running mates. Lund goes on:

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“a billionaire beholden to no one and able to abuse every disingenuous and pettifogging remora latched headfirst on the nation and sucking upward.”

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“If the system is already so broken that it abandoned you, its preservation is not your concern. Hell, burning it down might be what you want most.”

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“Anger has a clarity all its own. It renders most detail extraneous….It is not to be underestimated….”

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His “disgusting behavior gets paired with the sight of Trump humiliating establishment empty suits like ….X….stuffed shirts like…Y…. party pets like…Z….. and habitual liars like…W…..” Trump is “lying in service of exposing another government predator.” 

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He will destroy Clinton. The politician who panders to money will be blown away by Trump. People respect that.  No one cares what his policies are.

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It is not a substitute for medical advice, diagnosis or treatment

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2 Responses to “Off opioids, pain better. Life is back!”

  1. Daniel Kerlinsky MD Says:

    The full moon tends to keep some of us awake. If you see the blue and green rings of light… drink in the moonlight because that’s what the spinal cord likes. Thanks, Nancy, for writing from the concentration camp of eternal suffering. Eternity, the feeling of eternity of suffering is what defines “hell.” When eternity fades hope recenters itself identifying with bliss and quiet, building the energy body one petal at a time.

    Naltrexone 50 mg po bid is what I’ve been prescribing since we heard Linda Watkins at the Pain Conference. My small state Board borrowed my notebooks and asked if I would recommend all doctors take the pre-conference course. “I’ve suffered enough already from the adversarial process” of treating ten pain patients with psychiatric disorders and chronic pain who lost their pain management caretakers. Couldn’t get out fast enough when we heard the upper dose limit discussions starting in 2008.

    Naltrexone is under-dosed. How much does it take to stop microglial TLR inflammation? And how many new interactions have been found between layers of the neuraxis and proteins and peptides we hadn’t heard of? Amitriptyline is the other TLR inhibitor Linda Watkins found. Ten mg at bedtime reduces a lot of aching. We desperately want to prevent the emergence of the inflammatory phases of every psychiatric condition that flairs in adolescence. I think we should try to stop the flare of the immune system in adolescence for everyone.

    It seems to me to be part of an alien -not a natural – phenomenon to take half of everyone’s brain cells. Good if you want to program a servant for life. Not so good for a free life. Free Will, A Heart that stays i the present Moment, and Refusing the Virus of “There must be something wrong with me” are the three steps of Mental Hygiene. They are also the levels of the Three Caps on the Central Channel of the Spine in Kundalini Vidya, the method of epigenetic transformation.

    Opening the Central Channel allows the spinal cord and Third Ventricle to start cooling off. The Hippocampus is the main problem-maker when the spiral compartment swells and closes under excessive duration of cortisol exposure.

    I think anyone with Uppledger/Barral/Lowen hands-on training can feel the heat pouring off the swollen hippocampus. The heat spreads into the anterior horns of the lateral ventricle. We use acupuncture with osteopathic cranial techniques to drain the heat as quickly as possible. Liver point 2 between the big toe and the second toe is a favorite for flushing cooler fluid from below past the overheating liver obstruction to flow. We open the spine – 4 points on the outer/little finger/palm crease and outer malleolus/halfway to the heel.

    The seven pin external dragon treatments open the bladder meridian down the back from the point in the middle of the top of the head. But Kundalini induction – opening the lower spinal gateway – has become our rescue intervention.

    I usually open the sagittal midline metopic suture/sagittal suture to get some space between the hemispheres after mobilizing the feet and balancing the legs and pelvis – Jerry Hesch PT method, Jim Jecman DDS framework. Then you can show people how to use an active version of the CV4 described by Dr. Sutherland in The Cranial Bowl to mobilize the right and left “flippers” – tentorial attachments – to move cerebrospinal fluid forward with a two-second inhalation/sucking-snorting pharyngeal-sphenoid contraction – that goes right up the aquaduct if the two sides are balanced.

    The two-second inhalation/release affects the the third ventricle walls just enough to stimulate endorphin release. But it is much easier to do that if the lower spinal central canal is not obstructed, especially at the tight inch of the brainstem/cerebellar peduncles that tie the brain into the inside of the skull.

    There is a lot more we can share with patients after helping people get out of the inflammatory state. I’ve set my wife, the DOM acupuncturist and kundalini energy director, to find the Chinese medicine elixers used to reduce CNS inflammation. Lord knows we won’t find it among the fluorinate, chlorinated pharmaceuticals that disrupt flow patterns like a stack of jacks, a stack of magnetic jacks.

    When the top of the skull stays open after the second stage of the kundalini process – clearing the brain – it feels like the weight has been taken of the pressure cooker. A closed skull on the top of an upright stack of fish bones in the dry air is about the stupidest design position. Heat rises. When the lights finally come on and the big octupus is floating in its bone aquarium the observatory window comes open and there is light from the inside meeting celestial light from above.

    • Nancy Sajben MD Says:

      There are so many people with such severe pain conditions. We need to study everything we can about the pain matrix and we desperately need to image glia.

      I’ve written about this a few weeks ago on NFL football players and CTE.

      We need to image, trial techniques and see what is best, simplest, most cost effective.

      I am surprised at the dose of naltrexone you use. At high dose it causes pain and depression, and opposite on low dose. The distinguished Robert Twycross published explaining the mechanism 2014.


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