Welcome to my Weblog on Pain Management! Thanks for stopping by.


NancySajbenMDSeven years since I started this blog April 2009. It is very exciting to have this resource as a way to structure the many research publications and ideas I come across in Pain Management, Neurology, Integrative Medicine, Neuroimmunology and, yes, politics of medicine. I only wish I had had this tool decades ago so that I didn’t have to recreate the ones I’ve already reviewed and forgotten in the last 41 years, long before MRI scans and decades before computers in daily medicine. Now we all risk carpal tunnel from repetitive injury.

Chronic pain is often much more difficult to treat than cancer pain. It is tragic that < 1% of NIH budget goes for pain research, though 10 to 20% of the population in the US suffers from chronic pain, an estimated 60 million Americans, and the conditions are more prevalent among the elderly. Persons of all ages that I see tend to be more debilitated, often with anywhere from 3 to 14 different identifiable pain syndromes.

Many, including physicians, mistake pain as a symptom, failing to understand the reorganization that has occurred in the central nervous system due to neuro-plasticity; and they overlook the associated co-morbidity causing insomnia, weight gain due to medication or inactivity, depression, anxiety, spiritual and financial burdens. The lives of families and friends are diminished along with the person who has pain.

In the future, as time permits, I’ll be adding publications and articles to the site and occasionally posting with a frequency yet to be determined, hopefully twice a month.

Goals:

  • This website is dedicated to providing educational resources to patients and healthcare professionals regarding the current understanding of pain medicine, an interdisciplinary field
  • To discuss evidence-based information to improve the lives of patients who choose to use these therapies under the direction of informed physicians
  • To distinguish between harmful treatments, beneficial treatments, and treatments that can be safely integrated with conventional treatment
  • To encourage communication between patients, families and providers
  • To educate both patients and health care providers who need a more comprehensive knowledge base with current and accurate information
  • To promote ongoing professional growth through networking in a setting where treatments can be examined together to enhance lives

Please bear in mind, no information in this blog is intended to diagnose or treat any condition.

The opinions expressed here are my own, and are subject to change as new research becomes available.

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Come with me on the High Sierra Trail

Join me on this journey……


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100 Responses to “Welcome to my Weblog on Pain Management! Thanks for stopping by.”

  1. Trudy Thomas Says:

    Dr. Sajben: I have been looking at your website and am very interested in speaking to you. The work you have doing looks interesting, especially the LDN.

    I have RSD and because of that, started a radio show called “Living with RSD”. It is a weekly show, concentrating on RSD and other chronic issues. My guests discuss various aspects of chronic pain management, both mental and physical. Could you contact me via email so we could talk about a possible guest appearance on the show?

    Thank you and I look forward to speaking to you.

  2. nuala white Says:

    HI Thanslk for allowing my questions…I live in Northern Ireland and have been an LDN advocate for a full year now. In this year I have endeavoured to get relief from my rheumatoid arthritis using LDN and a variety of antioxidants including….Omega 3 1.5gr epa;Coenzyme b12;Lglutamine;vit c 2gr daily; and sometimes a powerful digetstive enzyme. Unlike the many others I have supported I am still struggling to get my inflammation under control and still experience sleep disturbance and fairly constant pain and discomfort which I have rsorted to controlling with 1/dose diclofenac, which I had weaned myself off but need again to get thjrough the days and nights.
    I am untterly perplexed as to why I cant get the relief so many others achjieve. I have tried all doses from .5mg daily to a brief few days on 4.5. I cant tolerate more than 2.5 and even then I feel it back up in mys sytem after a bout a week.
    HAve you any suggestions for me as to what I might try next? Id dearly love a wya froweard as I fear im in a constant battle betwen the ldn and raging uinflammation and joint damage that fels like its ongoing. HAving said this I no longer have thre crippling fatigue that completely floore me up to the end of 2009. ANy guidance would be most appreciated. Thankyou.

  3. Larry Morries DC Says:

    Are you aware of any good research about injection of purified THC (marijuana) extract, in the treatment of humans or animals, for pain, nausea and etc.

  4. Brenda Webb Says:

    Dr. Sajben,

    I’m trying to find out whether low dose naltrexone could work in a person who has rheumatoid arthritis IF the person continues to take immune suppressing medications such as remicade and methotrexate or do those drugs negate the possible benefits of LDN?

    Thanks for your help.

    Brenda

    • Nancy Sajben MD Says:

      I don’t know if anyone can answer that question, and certainly there is no published research on it. I would not recommend stopping your disease modifying drugs. You may wish to try adding it, as long as you are not taking opioids.

      • Gary Says:

        I’m a 67 year old male who has had Crohns since I was 20 yrs old. Currently I have only 3ft of small bowel left and have had an ilestomy since 1975. I have chronic dehydration and have a port in my chest to get a liter of IV fluid/day, chronic fatigue, am in stage 3 kidney failure for 30yrs. Plus kidney cysts, kidney stones in left kidney(200+ passed since 1975) and peripheral neuropathy in my feet, legs and hands. I have been on Remicade for about 7 years, 3yrs at 5mg/mic and then 4yrs at 10mg/mic and now back to 5mg/mic after starting Naltroxane. I have also been on Fagyl as needed over the years. The Remicade or Flagyl or both caused the neuropathy. The Neuropathy has been treated with Lyrica, Neuraton and several other types. I was a zonbie for several years. Then came Vicoden and then Methadone 30mg/day. I had to wean myself off the Methadone for three months and cold turkey for two weeks. During this time I didn’t sleep for three months.

        The Veterans Hospital in Ann Arbor, Mi started me on 4mg of Naltroxane 31/2 months ago and I’m a new person.
        [Edits: I have made this sentence a paragraph unto itself. Spell: naltrexone. He started 3-1/2 months ago]

        I had been hospitalized for a port infection and a methadone overdose due to the infection in May of this year. My sons notice that they could touch my feet after I was put on Narcan for the overdose. After getting out of the hospital I got online to get info on Narcan/Naltroxane. The chronic fatigue is 95% gone, my foot and leg pain went from a 10/10 to about 4/10 now. The VA just increased my dose to 5mg per day at my request to see if there is more relief obtainable. So far it looks like the top limit if I need it may be 8mg/day.The 3/mg buffer I have now is for future use if needed. Sorry for the long dissertation but all this info is important and I hope I have helped you and others that have issues like me. I will answer and questions posted.

        God Bless,
        Gary

        • Brian Haviland Says:

          Gary, You may be interested in this lecture on LDN use for pain. I see Dr. Sajben mentions this doctor on her excellent LDN page. https://vimeo.com/118003357

          • Nancy Sajben MD Says:

            Thank you.

            Please point out anything he says that you feel should be emphasized. I have prescribed LDN for 10 years.

            I have spent years and years, long weekends and two week vacations listening and reading about LDN. I was the one who taught Dr. Chopra about it years ago.

            I do not agree with the dogma held by others including Stanford that say it works on endorphins. There is dogma about 4.5 mg dose and **not** more, and dogma that it must be given only at bedtime.

            This ignores the more important mechanism on the innate immune system (glia) and the receptor where it works on glia that won the Nobel prize 3 years ago: the TLR4 receptor. I posted on TLR4 receptor January 2011 and point readers to that on the front page of my website. See also May 26, 2009 – also on front page of my website.

            Endorphins are not the story. Inflammation is the basis for explaining why several medications work for intractable conditions.

  5. Phil Turner Says:

    Dr. Sajben, thank you for your website/blog! A great source of little promoted informaiton.

    In your web article “Low Dose Naltrexone “LDN” and Dextromethorphan off label for Pain, RSD, Chronic Fatigue, Fibromyalgia, MS, Crohn’s Disease” ( https://painsandiego.com/2009/05/26/low-dose-naltrexone-ldn/ ) you mention the combination of LDN & DXM and provide info (as others do) on dosage for LDN but I am unable to find anything on dosage (or source medication) for DXM.

    My wife and I would like to try and educate her local Dr. on this approach.

    What is the typical dosage for DXM in this approach and what base medication would you use for the DXM (I don’t think DXM is provided in the originally developed pill form anymore – only cough suppressant mixtures s as far as I can tell)

    thanks,
    Phil

    • Nancy Sajben MD Says:

      Phil,

      I have dextromethorphan compounded in a *long acting form* in the same dosage as used over the counter, but less expensive.
      I’d be happy to discuss with your physician if you ask him to call me. The important paper by Zhang et al,
      posted May 26, 2009, is heavy on the science for a typical MD, but discusses glial dysregulation of pain pathways.
      The understanding of glial mechanisms is the most important breakthrough in pain research in recent years.
      One of the co-authors on that paper is Dr. Hong at NIEH, a branch of NIH.

      As for dosage of LDN, what you see used by persons with MS is overly simplified for persons with chronic disabling pain.

  6. Traci Says:

    Dr. Sajben,
    Thank you for all of your blog and your website, they are a wealth of information. I was Dx with RSD/CRPS officially 1/2008 and have done PT, regional blocks, 13 Lumbar Sympathetic Blocks, HBOT, I’m now on a medication cocktail (that doesn’t include Naltrexone) and it did include oral Ketamine for over a year but that was recently stopped. Now the RSD symptoms have started to worsen. The only common denominator I can find is the DC’ing of the oral Ketamine. Do you feel “oral Ketamine” can play an important role in keeping RSD in check? I read your case study about the RN that is now 98% pain free utilizing LDN. Do you feel LDN is another key Rx in fighting RSD?

    I have another quick question for you. I know of someone else that has had RSD in the Vancouver, WA area. Her Neurologist was in practice for 30 years and just retired. She has been left with just her Primary Care MD whom has no knowledge of RSD/CRPS. Do you know of anyone in the Vancouver, WA or Portland, OR area that you can recommend?

    In one of your posts you asked for input from patients that currently have a SCS. I currently have a Medtronic SCS it was implanted early 2010 and I ended up having swelling in my Lt (affected) foot/ankle every time I would charge the “re-chargeable battery”. No one at Medtronic could figure out the issue. I turned into their “human lab rat”. After several months of this I was told to switch from a rechargeable battery to a non-rechargeable batter. Thus another operation… which I did. After this surgery (I have a paddle with 16 electrodes) all 8 electrodes on the Lt side that used to supply stimulation to my Lt foot/ankle now hit my pelvic area – thus I can no longer utilize these electrodes. And out of the 8 electrodes on the Rt 2 are providing stimulation to my Lt foot and the other 6 are hitting the wrong areas. In addition to this I have had continual instances where I am getting a very sharp pain/ sharp twinge (like a jolt) around where the electrodes area. When this happens if I turn off the SCS the pain immediately stops. I’ve been on a conference call with a Senior Engineer of Medtronic and a local Rep in person with me to do reprogramming… The Engineer only wanted to know if the electrodes were putting out stimulation. He didn’t want to know what the amperage was at before I could feel it or in what part of the body the stimulation was felt. These should have been critical pieces of information. All he wanted to state was that the electrodes were working. As for the Sharp Pain / Sharp Twinges that continue to occur in the electrode area their Senior Engineer has no idea what is causing this. He asked me to run an experiment the next time it happened – I did exactly what he wanted and reported back the findings. I have yet to hear back from Medtronic. They do not want to back up their product and they are not willing to admit that their is a problem. Although I have 2 doctors including a Neurosurgeon that feel there is some type of fault in their product or that it is faulty. Hopefully this gives you some additional information you were seeking. Please feel free to email me if you would like to discuss further. I am continuing my uphill battle with Medtronic.

    Thank you for all you do!

  7. Renee M Says:

    Dr. Sajben,

    I was struck by lightning in 1993. Cluster headaches started in 1997. Had dual hemilaminectomy of c4 and c5 in 2005. The pain worsened after surgery and 9 months later was finally diagnosed with RSD.

    I was one of the sponsors of the symposium this past fall on the glia cells and RSD thru RSDSA.org and am also one of the sponsors for this year’s symposium in Albuquerque to be held this fall.

    I am the patient Jim Broatch emailed you regarding about 2 weeks ago. My doc may have called you today to setup a phone appt for long distance LDN info, etc.
    I have been on Duragesic patch and Actiq since ’05 and my body is now very quickly building a tolerance to my opiates and I am in constant debilitating pain. I have RSD type 2 with very poor circulation in legs now and RSD is now systemic.

    Just wanted to give you heads up of who Jim was referring to when he emailed you and hopefully Dr K called for a phone appt with you today.

    I hope you can help!

    Renee

  8. Paul Says:

    Dr. Sajben:

    I have had RSD/CRPS since 2004 due to a cut sapphenous nerve in my knee during a surgery. I have had 4 other surgeries trying to repair the cut nerve to help the pain and things only got worse as it is now in my right leg. I really liked your research on RSD and the immune system. I also have had 5 sinus surgeries prior to the RSD. Up unti lthe cut nerve during surgery I was a healthy 45 year old male working 10 hours a day with a wife and 4 children. Now I am no longer able to work due to the pain. Do you have any suggestions for me for the infusions for my immune system. I have traveled to New York, Baltimore, Tampa and other top notch Hospitals / Physicians, but have not been able to achieve any significant relief. I now see 4 doctors for a multi-disciplined approach to try and best manage the RSD. I live off of hope and Prayer. When I saw your research I was excited as I feel like there is some kind of link between my RSD and my immune system. I would appreciate any advice.

    Paul

  9. Gerard Skibba Says:

    Dr. Sajben: for information about Intaranasal Ketatmine
    Backup/Details: Intranasal Ketamine
    Background: Product profile
    • Optimal dose is 3 to 5 sprays (30 – 50 mg)
    • Absolute bioavailability PMI-100 = 35.5%
    Therapeutic Index
    • 15 X difference between analgesic and anesthetic dose
    • Analgesic Dose of 50mg PMI-100 (50mg*35.5%) = 18 mg
    • Anesthetic Dose of IV Ketamine (Ketalar® ) = 280 mg
    Intranasal Ketamine Review
    Pharmacokinetics, Dose Proportionality and Absolute Bioavailability of PMI-100 (Intranasal
    Ketamine) in Healthy Volunteers, 2 period, cross-over, IV vs. PMI-100 (10, 30, 50 mg)
    • t1/2 (h) = 5.8
    • Tmax(h) = 0.42
    • Bioavailability 35.3% [90% CI 22.3-55.8]
    From: http://intranasal.net/Hospice/IN%20ketamine%20in%20military%20combat%20pain%20situations.pdf
    I received a trial of intranasal ketamine for Osteoarthritis and Opioid Induced Hyperalgesia. I achieved good relief using 50-70 mg every 3-6hrs. The best thing that happened was that all the spastic muscle issues and cramping from the hyperalgesia stopped immediately. I was able to restart physical therapy exercises and even noted that I was able to recruit muscles that I had not been able to work on before. My current MD gave me just one trial but is reluctant to keep prescribing for off-label use. I will have to have a talk with him again and if he won’t relent I will need to seek another local MD. I have Medicare as well as VA and the time for changing MD’s and/or insurance is just around the corner. I have been on Vicodin for the last 15 years or so and have been using ultra low dose naltrexone 10 nanograms oral with my Opioid doses to prevent the development of tolerance and also to preclude addiction.

    • margaret Wateron Says:

      I am trying to find a Compounding Pharmacy to prvide the Intra nasal Ketamine.
      Where did Gerard Skibba get his?
      My PM physician is willing to prescribe this.
      It seems that some of the reluctance stems from the abuse of this drug socially.

      Help please.

      • Nancy Sajben MD Says:

        I have been very pleased with the results of my patients on nasal ketamine so far. It is much better than the oral ketamine I have prescribed for ten years.

        I have one of the best compounding pharmacies nearby, and they do ship:

        PJ’s Prescription Shoppe in San Diego, 619-223-5404

        Best of luck.

  10. Kay Hill Says:

    Dr. Sajban,

    Thank you for your website. My husband suffers central cord pain (dysesthesia and allodynia) from bruising his spinal cord (C5/6 area) in a fall and is suffering other fallout from the injury. He just started taking 4.5 mg. LDN hoping that it might help the pain. It has disturbed his sleep so he will be taking it in the mornings. He also takes 20 mg. of zocor daily and is concerned that there might be complications with the liver. Do you think there is a possibility of the LDN helping the type of pain he has and do you have any qualms about his taking it while he takes zocor?

  11. scott f Says:

    Dr. Sajban,

    I Wanted to make you aware of this —
    http://www.neuropathie.nu/gliopathic-pain/glia-as-target-for-new-analgesics-and-palmitoylethanol.html

    Normast is quite expensive – but, it looks like the science is sound.
    I am a patient with neuropathic pain – and, have tried both the tablets and the granules. I notice an immediate improvement with granules.

    Sincerely
    Scott

  12. Nancy Sajben MD Says:

    Dear Lori,

    It is not legal for an MD to give patients medical advice without an examination in the office. I am sorry.
    I would be happy to speak with your daughter’s physician if you wish to call me and find out details about doing that.
    I have posted a link to a study on my newest page “Case Reports” [top left below photo, 1/28/12] showing pain reduction after detoxing from high dose opioids.
    Most doctors are not aware that opioids create pain. That may be especially important in the setting of chronic pain.

    That said, it is a patient’s decision to taper off opioids and try mediations that may have failed while they were on them.
    Best of luck to you and your daughter.

  13. Sue Says:

    Dr. Sajben,
    Thank you for your discussion of Ketamine. I have suffered with treatment resistant depressiion for many years and with anxiety for the last few years. I have read about Ketamine for some time now and have been so frustrated that more doctors are not willing to use it. I live in the New Orleans area. Do you know of any doctors in this area who use ketamine or could you tell me how I might be able to find one? Do you treat patients for depression? I would really appreciate any help. Thank you,
    Sue

    • Nancy Sajben MD Says:

      I do not know of other doctors who prescribe ketamine with one exception, anesthesiologists who give it IV. Even there, I know of only a small number in the USA. I do treat patients, but before they come long distance, it is important that they find local doctors who will continue to prescribe for them.

  14. drdan2000 Says:

    Thanks for going online, Dr. Sabjen. I heard Linda Watkins speak at the American Academy of Pain Medicine this February and have gone back to the literature on amitriptyline and naltrexone. In my field of child psychiatry we have used naltrexone for agitation in Autism. Dr. Watkins’ research showing amitriptyline is the most potent TLR inhibitor of the tricyclics gives me two choices with agitated, urgent, and episodic tantrum behavior. CNS overheating seems to run in the family of a lot of big-brained gifted people. 5-10 mg amitriptyline po qhs or naltrexone 12.5 mg po bid seems to have a good response after two weeks. It takes awhile for the brain to cool off inside the closed compartment that is the skull. We are looking at glial inflammation across the spectrum of adult psychiatric and neurological conditions as well. Interesting that mood and anxiety improve as pain falls – possibly a direct medication effect, not only secondary to reduced pain.

    • Nancy Sajben MD Says:

      CNS overheating – a joke?

      Are you aware of elevated body temperature in Juvenile Bipolar Disorder, Fear of Harm phenotype?

  15. Sandy Says:

    Dear Doctor Sajben,

    Being the lady you described in your October post, I want to thank you for thinking “outside the box” and giving me my life back. Before coming to see you in CA I was on opioids, which were doing little to ease my pain. Since seeing you in September my pain from RSD (CRPS) has decreased daily. I sit here at my PC wearing traditional attire and am not experiencing pain from the clothing touching my skin. I went shopping with my Grand Daughter yesterday and was able to spend time with her without using Ketamine. Ketamine tends to make me a little loopey for about 20 minutes, so I chose not to take any since I had to drive to the mall and back. Ketamine helps on the days when I have some pain, but often I feel well enough to do without it.

    The swelling in my right foot has all but disappeared. I had to buy two pairs of shoes in the past with my left foot a size 8 and my right shoe a 10. Even then the pain from wearing shoes was unbearable. Now, I keep losing the shoe of my right foot because my foot has shrunk down so much. My pain has decreased by 80 to 90% since seeing you in September.

    Since I am improving daily using the medicines you prescribed for me, I am confident that I will soon be able to wear shoes of the same size. I have had few side effects, none of which causing me to consider reverting back to Opioids.

    My friends are amazed often exclaiming “Look at your foot!

    Thank you, Dr. Sajben. You are a gem, a physician who really cares. Unreal! Looking forward to seeing you in March.

    Fondly,
    Sandy

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  17. Sara Hobbs Says:

    I am a new patient of Dr. Sajben’s and I am seeing her for pain management. I have RSD/CRPS, a chronic and extremely painful nerve disorder. It occurred after a car accident and surgery in 2009/2010. I have struggled and fought through the pain until now. I have a history of anxiety and mood issues as a teenager and the pain was causing me major depression. Prior to the accident and surgery, I was an accomplished swimmer with USA for 18 years and I coached for a year and graduated with a Bachelor of Arts in Psychology. Due to the pain I ended up out of work and unable to continue my education. I had an 18 month lapse in treatment due to losing my insurance and I suffered severely. I ended up moving to California. After 8 months of things not going as expected and me still in pain, I finally found my “Lifesaver” in Dr. Sajben.

    As an athlete and a psychology major I am very in tune with my body. Dr. Sajben has started me on a series of medications to treat RSD/CRPS, these include Oxytocin and Naltraxone. Just starting these 2 medications made a world of difference. I no longer feel in despair and distraught and overwhelmed. I feel like I can finally breath again. Although so far my pain relief in minimal but I am getting relief, my mood and ability to cope alone as made the last week easier than the last 3 1/2 years of my life. The emotional calmness within myself and the ability to breath has made the pain not as intense. I am in a very stressful situation. I am not with any friends or family out her, I moved to have treatment. I work with my boyfriend’s family business and anyone knows that that is stress in its self. I do it to occupy my time since I do not have a job. That is another stressor, financially, I have no income. I have nothing left of accident settlement after bills and living expenses have been paid. All this on top of legal issues and the injury and disabling pain, it compounds and intensified everything I have been feeling. Since the 2 medications have been added, I call it the “I don’t give damn” feeling. I am able to just let things roll by and I am not anxious and worrying. I CAN BREATH AGAIN!!!

    I have found each day easier and being able to breath when my pain is at its highest and being able to still communicate and talk and express myself without feeling like a zombie, its been the greatest experience. I look forward to continuing my work with Dr. Sajben and seeing how I respond as I am only 1 week in. But, what I do know is that with stabilizing my mood its has helped my ability to cope with the pain and in my opinion, helped my pain lessen, although not by much, being able to breath is good for me. One day, one step, one breath at a time.

  18. Pat Tapp Says:

    Dr. Sajben,

    How can you do all of these things? As a little old lady I can hardly understand it all, but…………………….please know I admire what you are doing and I am lucky to be your patient!

    Pat Tapp

  19. Kathy Johnson Says:

    Thank You Dr. Sajben,

    You have saved my life. Three weeks ago I was planning suicide, today I have precious life. I have spent every minute of the last four years trying to get help for horrible, chronic pain. I had tried everything San Diego could offer including two back surgeries, numerous procedures, western medicine, eastern medicine and everything in-between.

    Today I want to be alive and am planning the rest of my life. My family and friends are so grateful that I can stay with them and not have to accept the dark alternative.

    Patients coming to Dr. Sajben must be willing to follow directions carefully and be willing to accept the up’s and down’s of finding the correct medications. It takes time to determine what works for each individual, but don’t get frustrated, she will do everything possible to help you.

    Kathy Johnson

  20. Nancy Renée Cotterman Says:

    A group of us with CRPS are getting credentialed to help those with CRPS feeling overwhelmed and suicidal. It is a big issue within the CRPS community.

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  22. Dr Richard feldman Says:

    Hello ,
    I am a 59 y/o physician . I have had difficulty tolerating multiple meds for
    my own depression . I have become interested in trying Ketamine after the group at Mt Sinai in NY recently
    published their work on intranasal ketamine for depression . It appears
    you have discovered this use
    as an outgrowth of your treatment of chronic pain . My question is twofold :
    1) have you used intranasal ketamine long term in pts with pain and or depression ie. many months to years and if so what kind of dosing regimens have you found to work best ? . Appreciate any thoughts you may have
    on the subject.
    Thank you,
    Dr Richard Feldman

  23. ana rendon Says:

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  24. Medea Karr FNP Says:

    Hello Dr. Sjaben, I’m really enjoying the very thorough information on your site! I’m a family nurse practitioner specializing in fibromyalgia and myofascial pain, and I also see patients with a variety of other pain issues. We have a few pain specialists here in Seattle doing ketamine IVs but this is the first I have heard of intranasal ketamine. I am very intrigued and have a number of patients who might benefit. Are you able to post your intranasal ketamine protocol, or be willing to email it privately? Or do you find that the oral protocol you posted works just as well? I’ll definitely be doing more research on this topic, especially with the increasing restrictions on opioid prescribing in my state and nationwide. It seems that ketamine, LDN, and various other NMDA and glial agents are the wave of the future in pain management. Thank you again for the inspirational site,
    Medea Karr ARNP
    fnpmedeakarr@gmail.com

    • Nancy Sajben MD Says:

      I no longer need to prescribe orally. That was done initially 14 years ago, in 2000, when I began to prescribe ketamine for intractable pain. Instead, since finding a nasal metered dosing system, I only prescribe nasal or sublingual ketamine for those who do not mind the bitter taste or have nasal issues. And that reduces the volume used.

      More importantly, I do not use ketamine alone. In pursuing the powerful anti-inflammatory effects of other medications that restore balance to the glial anti-inflammatory cytokines, patients find that ketamine may not even be needed any longer. I like to stabilize them pain free for months, then withdraw one at a time, leaving only the low dose naltrexone (LDN), about which so much dogma fills the interwebs.

      And knowing that opioids cause pain, I saw that removing the opioid from the chronic pain patient who wishes to try, that allows me to begin low dose naltrexone. I have watched pain completely disappear when it had been mild to moderate on the opioid in a case of postop residual cervical radiculopathy. It was remarkable to see the business owner get his life back off opioids, from being bedridden for years, praying for the day he’d qualify for Medicare 15 years away, now back to work, back to normal. Of course it took horrific side effects from the opioid that probably accounted for his willingness to try the slow taper off, with fear and anxiety each step of the way for months. His baseline was the depression and anxiety, but he bravely took the steps.

      Funding now is going to exciting molecular studies and stem cells for pain.

      We are throwing away decades of FDA-approved generic medication and the well established science of the innate immune system that MD’s hear about but don’t know how to translate into the clinic. Who would believe this anyway without funding for large studies to learn how many would respond, and TV ads selling shiny new drugs?

      That substitutes for demanding funding to evaluate our generic drugs to see if they too reduce inflammatory cytokines. Could that help to prevent Alzheimers and other neurodegenerative diseases?

      Do not accept the dogma that says LDN must never be given more than 4.5 mg and that it works only on the opioid receptor, only at bedtime. Actually it’s important that pts must come off the opioid before they can use it, or they’d throw it away thinking it has no effect because the opioid is creating pain and they cannot reasonably accept other research since the opioid seems to be helping….only maintaining pain so they must keep coming for more every month the rest of their lives.

      Proof requires studies and funding. So is it a good thing that doses have been reduced by law and by threat? Studies are needed.

      The work will languish without those who want to help pain and try to apply the science that got attacked for even studying glia in 1991. Who would study glia?

      When doctors call to ask me to teach how to use ketamine, I have found it takes about 2 to 2-1/2 hours to teach these methods that work.

      • Medea Karr FNP Says:

        Thank you so much for the thorough response, this is extremely helpful, especially given the current backlash against opioid prescribing. I have a number of high dose opioid patients with CYP enzyme processing issues and we’ve been worrying about their options if the laws become even more restrictive. I’ve been monitoring everything that’s being published about microglia etc, and have already started experimenting with some of the microglial modulators. And even in my chronic opioid patients I’ve had success with ultra low doses of diluted naltrexone taken 3-4 times daily to help calm the overactive glial cells and also help the opioid tolerance. I’ll start trying the nasal ketamine, along with other pain modulators, to get these folks better relief on lower (or no) opioids. Also I’ve had good results using a combo of medical cannabis tincture plus ultra low dose naltrexone to help people taper down opioid doses, along with the standard hydroxyzine, tizanidine/clonidine, methocarbamol, etc. We have a great addictionologist/pain specialist up here who has been researching tizanidine instead of clonidine for better control of withdrawal symptoms without as much sedation and hypotension, so that has been very helpful when people need to taper down their doses. Thank you again for sharing your experience and wisdom! Medea Karr ARNP

        • Nancy Sajben MD Says:

          Thank you for your comment. I am delighted you find this work important in relieving pain.

          Everyone should be tried on these essential glial modulators before being assigned to a lifetime of visits for an opioid prescription every month for the next 30 to 60 years.

          Please check what I am posting tonight. FDA and insurers seem set on 100 mg morphine equivalent per day.

          Too sad no research on glial modulators and almost nil funding on pain research in general.

  25. Billy Bowman Says:

    Dr. Sajben
    I have started Vld naltrexone. After 4 days I have stopped due to what I thought was more than usual depression. I am a long term chronic pain patient with A failed 2 level fusion and AS diagnose a year after the surgery when the pain came back with a vengeance. I since (15 years later) have diagnosis of RA and OA. I am on Intrathecal therapy and oral meds for breakthrough pain. I just started VLD Naltrexone. I stopped after 4 days due to depression but am continuing tonight after what I have read here. I have been through the ringer with anxiety and depression and sleep disorders. I am excited about the things I have read here and would like to know if you can refer me to a doctor in Denton Texas (or the DFW Metroplex area) that is on board with these therapies. I currently see an anesthesiologist but need a new Doctor due to moving up here. I am currently still commuting to San Antonio. Thank You for all you do and have done for us. People like you keep me wanting to live in hope that something can help and I can end this cycle of pain/depression.

    • Nancy Sajben MD Says:

      I find it hard to even know about the doctors at my own hospital. Tough question!

      You are sweet to thank me for this information. Stay tuned for a very exciting one coming up, but may take awhile.

      It’s a big project.

  26. Jon Wheeler Says:

    Where are we going in the pain management field? I visit my pain management Doctor each month and see the overflowing waiting room filled with patients in obvious distress waiting 30, 60, 90 minutes past their scheduled appointments while the office staff spend all their time ignoring patients while processing billing and insurance claims.
    11 months ago I had spinal stimulator implanted to help manage my chronic, pain due to degenerative disc disorder, multiple bulging discs, stenosis in several vertebrae, spondylosis, and facet hypertrophy in multiple locations, along with widespread arthritis. As my orthopedist describes it, my lower back looks “crappy”.
    The stimulator has been a failure. The technicians from Boston Scientific have given up trying to program my device. They claim to have requested a field engineer to review my case and attempt to program my device. That was 2 months ago and I have yet to hear back. Boston Scientific’s response to my calls have been patronizing and useless.
    My pain management Doctor recently informed me that I will be in pain for the rest of my life and I need to “learn to live with it”.
    My question is this: Where are we going with treatment of chronic pain?
    I keep seeing articles regarding great potential advances in the treatment of chronic pain, along with articles lamenting the lack of funding of research in this field and general apathy among the medical profession toward chronic pain treatment. Recently I’m reading about how opiates supposedly are making the pain worse, yet I see no credible case for any replacement treatment that would give the patient the ability to control their suffering, even if just for a short time. The ability to have SOME control is essential in maintaining hope and sanity.
    I’m finding this extremely discouraging as I’m facing another 40-50 years of debilitating pain, along with the psychological stressors, social isolation, and financial ruin.
    I read about others with much worse conditions than mine receiving even worse care, bordering on cruelty.
    I feel like we (the patients) are reaching a breaking point, if not already there, judging by the sharp increase in suicides. There is enormous profits in this field due to all the new laws, yet I see little effort beyond milking the system and the patients dry.
    Again, where are we going here? Lives are at stake here and I see only chaos and greed in the medical field regarding chronic pain treatment.

    • Jon Wheeler Says:

      Dr. Sajben,
      Thank you for your response and for all of your contributions towards finding new ways to alleviate chronic pain.
      Although I understand the reasoning behind cya treatment (cover your a$$), I find it reprehensible.
      As far as 80 hour work weeks due to insurance tail chasing…I wish my weeks were that short. In order to meet increasing demand and management’s need to maintain or cut costs of labor by cutting medical benefits through discount plans with fewer covered procedures and ever increasing deductibles, copayments, etc. I found myself working 100+ hour workweeks.
      Theses excessive hours are what led me to my medical condition. Being on my feet in industrial maintenance for 16-20 hours a day (sometimes 30 or more) caused my back to essentially collapse. As I couldn’t establish a single incident of injury, I was not covered under workers compensation.
      My question I was trying to ask was where are we as a whole in the treatment of chronic pain. When I have suggested some of the treatments you and some other specialists are performing with promising results I have recievef harsh responses and threats to release me from the doctor’s care. (Where I live Pain Management clinics are a monopoly, all owned by one single medical management entity. Getting a new doctor, or even a second opinion, is impossible).
      As I see it, the new laws requiring all chronic pain to be treated by a “pain specialist” has created a new business where corporations are deciding treatments instead of doctors and patients…very similar to the fears created when the ACA was being formed. Personally I’d rather have a law governing care rather than a boardroom full of MBA’s. We can change laws, and lawmakers, but we can’t change the insatiable desire to increase profits. The days of just Doctor and patient are, sadly, history.
      To get back to the thread’s topic, my insurance deductible has doubled every year for the past 3 years from $1000 to $4000 and covered procedures and prescriptions have been slashed dramatically. Celebrex, which gave me great relief, went from $45 a month to over $300. Now I suffer upper GI symptoms from the Naproxyn being prescribed.
      I’ll continue to watch your progress and suggest treatment options with my doctor. Sadly, he has performed all the profitable procedures and is not open to other options, especially when suggested by a lowly patient and they offer little to zero profits to his practice. I’ll have to be satisfied with the prescription strength enteric coated ibuprofen and Naproxen that doesn’t even touch my pain and the useless spinal stimulator that cost me and my insurance over $100K.
      It is reaching the point where I’ll have to seek pain relief outside of medical supervision as so many are being driven to do.

      • Nancy Sajben MD Says:

        “corporations are deciding treatments instead of doctors and patients”

        That is correct. Our hands are tied. Yours and mine, in every first world country.

        • Tracy Says:

          I see Dr. Chopra for crps type 1 cold since 9/11/2014.

          Every compounded LDN we have tried from 4.5 mg to 1 mg has left me non functioning drooling zombie like.

          My husband is a physician also.

          We feel it’s an extrapryamidal effect. Sorry for my spelling error.

          I am experiencing the opposite effect.

          Have you ever had this experience I even have baffled Dr. Chopra.

          We have lowered the dose to 1 mg I have no ability to tolerate the effects.

          Thank you for considering answering our question. No other meds on board.

  27. Cheri Says:

    Dr Sajben
    My son almost 17 has chronic daily headache
    And depression as a result
    Do you see patients this age as I would like to.explore LDN or ketamine treatment for him as nothing else has helped

  28. Susan Woodburn Says:

    I have tried all the antidepressants out there. Ketimine sounds like s possibility. I would pay out of pocket as I have Kaiser. Do not really care anout that as I have the money. May be hard to get Kaiser to send record since it is all on computer. I do have left over nerve pain after surgery for ridiculopathy. Not bad and can deal with by a tens unit. Doing sll the right things but going deeper into that hole

  29. Jay Durnil Says:

    I have been seeing Dr Sajben for a few years now. She is a kind and caring practitioner and the only one I have seen out of many willing to try “out of the box” treatments that have completely relieved my long term treatment resistant depression. I am increasingingly impressed by the benefits of ketamine and also low dose naltrexone. The ldn has provided me a myriad of benefits besides being adjunctive in my treatment for depression. I highly suggest reading up on this compound in low doses. I have noticed that I have not had a cold or a flu since I began treatment with it. It has cleared up a fungal infection that nothing else worked for, and I am becoming very interested in its anti-cancer benefits. Dr Sajben has many other reasons why she chooses this medication but please read for yourself how this may help you.

    • Nancy Sajben MD Says:

      The active links in blue at this page: https://painsandiego.com/

      refers to posts added on May 26, 2009 and January 2011

      that discusses basic science research on glia since 2000 explaining why naltrexone in low dose (LDN) works. The nobel prize was given 3 years ago for the discovery of ONE receptor where it works, previously unknown.

      Profoundly important medication. I prescribe it primarily for intractable pain or treatment resistant depression.

  30. Hilda Phillips Says:

    Thanks for your help with pain!

  31. Kristine gaur Says:

    Dear Dr. Sajben, I live in Mira Mesa, a friend gave me your website. My journey with Chronic pain began 3 years ago with a herniated disk in my L4-L5 with nerve impingement. I learned i have degenerative disk disease. I am also diabetic. The term CRPS and RSD had come up as my pain became worse and would not subside. It has turned into horrible debilitating widespread neuropathic nerve pain all over my body. I was taking low doses of oxycodone for 3 years and it isn’t helping and I don’t want to increase it. I want to stop taking it if possible. I have Stage one Kidney disease and Nafl disease so I have to be careful with medications. I don’t know if you can help me, but I can not function anymore I can no longer do the smallest of daily tasks. I can not sleep because the pain is worse at night. I’m at my wit’s end.

  32. Julie Says:

    This is Julie from the neridronic acid clinical trial. I relapsed completely after 9 weeks. In November, I travelled to Verona Italy for treatment with 400 mgs. My severe osteopenia and bone marrow edema is now gone. I am running 3.5 miles per day and my fatigue levels are much lower. I wrote this email to Grunenthal today:

    Dear Grunenthal,

    I continue to improve. My profession is exercise and physical therapy. Once the neridronic acid eliminated my bone marrow edema and osteopenia, I was able to begin working on the fatigue….

    …I believe that exercise or neridronic acid used independently will not solve CRPS. I believe that combined these two interventions will greatly help the CRPS population. I believe that amount of time elapsed from CRPS onset will make all of the above more difficult, but not impossible.

    Kindest regards,

    Julie Ahrnes from the Khan clinical research study

  33. Sara Maroto Says:

    HI I am a part time, light duty practicing RN, who after 20+ years is now on disability from a Spondylolithesis that happened to me back in 2008. My symptoms were a achy calf and numbness all the way down to the lateral side of my foot to the last three toes, with some degree numbness in my perineal (dermatone) area as well. All medical treatments were trialed and exhausted by my Neurosurgeon, so after six months he went in and did an open PLIF at RIH in Providence, R.I.

    I woke up pain free. That lasted for approximately 3 months or so. I continued to take oral Opioids, NSAIDS, Neuroliptics, Antiseizures and Muscle relaxers to continue to help relieve some of the post op pain associated fractured Vertebrae (Spondylolithesis), joint and bone regrowth, incisional pain and bone After that all my original symptoms returned plus a new one: A weakened lower back with pain across the whole entire lower portion and pain in the “SIJ” left hip area. I found it odd that I was not offered a back brace hard or soft. My CT scans contiued to show that all the hard ware was intact and that I was solidly fused even when I was complaining of increased pain, pain upon coughing and sneezing, the inability to stand up straight, but having to walk tilted forward leaning on a shopping carriage or _ a walker at o ly age 40!

    Now, 2016, I suffer with debilitating chronic pain from DDD, Lumbar-Sacral Foraminal Stenosis , L5 Anterolithesis at 8 mm. Intractable Radiculopathy. I have had a failed L5S1 fusion in 2009 with a non-Union and more recently undergone a triple level fusion L4-S1 (This is my third Lumbar procedure) with solid fusion however, I still suffer from intractable left groin, lateral thigh and foot pain, burning and achy in quality mostly an 8 out 10 on the pain scale everyday.

    I am status post SCS (Medtronic) removal of battery pack and leads secondary to battery malfunction, thirdly, re: refractory pain syndrome. The rep had tried several different programs and all seemed like my body was already used to them. When trying to turn up the rate or the gain on the leads, this seemed to have caused significant abdominal discomfort and from the onset It gave no coverage to my most painful area; ” SIJ” on the left side hip region (Iliac Crest), It did however provide optimal distraction and coverage to my left thigh, calf and dorsum. I still opted to have it removed. The battery pack area was uncomfortable and was starting to give off a frequency of error messegess, was not charging at all, and my Orthopedic expressed his frequent interest in performing an MRI, which my particular model was not designed to withstand the electromagnetic field.

    • Nancy Sajben MD Says:

      I always refer my patients to Thomas Chen, MD, Neurosurgeon at University of Southern California.

      First and always, address the mechanical. He is the only one I would refer to.

      After that, I would schedule such a patient, but cost of compounded medication on a monthly basis potentially for years, and local stay for 2 or 3 weeks can be prohibitive.

      This site is not for email. Please call if you wish an appointment.

  34. Cindy Says:

    Thank you for providing this outstanding educational weblog, Dr. Nancy Sajben. You provide brilliant cutting-edge insight and research for which I am deeply grateful.

  35. Phil Browb Says:

    It seems that I am one of the Lucky ones who had a successful Medtronics Spinal Cord Implant. It took me about a year and a half to get used to it and for it to build up scar tissue and adhere to my spinal column. Since then I hardly notice it except when I crank it up to control the pain when I am in the laying down position. I can now sleep in a regular bed most of the time. During the daytime, when I am either setting or walking, I keep the settings at about 1/2 the night levels during the daytime. Yes, I do feel some discomfort during the day, but I am a full grown adult and can handle it without much of a notice. The Spinal Cord Implant has been worth every cent my Medicare and BC/BS Supplemental Insurance paid for it. It has given me my life back. I am 75 years old and had the implant in June 2014.

  36. Shawna Siegal Says:

    I was just reading about the spinal cord stimulator. I had 3 compression fractures in my thoracic spine, surgery to my L 5. My pain doctor tried the trial today and as he was doing it I felt so much pain in the area he was putting the wire. He said it was due to my thoracic being narrow and damaged and the space was so small , he continued to finish. Once done I could not move, breathe or deal with that pain. It felt as if I was being stabbed in a tooth nerve, that same feeling. Iade him take it out immediately. I am still in severe pain and he said it was all in my head. Please let me know if this dr who just learned how to do these trial stimulators should have done this where my thoracic is so bad. Also will this pain ( feeling of being punched in the lung) will go away.
    Thank you
    Shawna.

    • Nancy Sajben MD Says:

      Document everything. Name, date, time, and keep perfect records. Just in case.

      Next, see a different doctor who has more experience inserting them, possibly a university pain service.

      I hope that nothing will evolve out of this and that all will be OK, but I have no certainty of that.

      Seek local expert help.

  37. Julie Says:

    Dr. Nancy Sajben is a truly gifted neurologist. After 25 years of practically being bed-ridden, my mother has her life back again. My mother was on a huge daily dose of morphine for 25 years due to RSD. I don’t even know where to start in terms of explaining how bad my mother was, no doctor even knew what RSD was, let alone how to treat it. They kept giving her more and more morphine throughout the years. My father ended up being diagnosed with Parkinsons, and I moved my mother and father to San Diego where I can help care for them. I found Dr. Sajben and instantly, on the first visit, my mother and I left crying tears of joy as we knew she would finally get the help she needed. Fast forward 1 year in the future, Dr. Sajben successfully lowered my mother’s morphine by 50%! I was nervous, so was my mother, but I’m telling you, Dr. Sajben recommendations have worked out 200%. Dr. Sajben treats the whole person. We highly recommend Dr. Sajben. I’m saying this as a prior CEO of a large healthcare system. I am an educated person and I rarely sing the praises of people or doctors as my expectations are sky-high. In Dr. Sajben’s case, she is truly an asset to patients and I’ve yet found anyone that can hold a candle to her level of care.

  38. John Says:

    I am personally not impressed with the pain stimulators. I have 2 of them. My 2nd one was put in by a young arrogant surgeon who would not listen to me. He placed the battery right where my belt rides. 1 1/12 years after that experience the wires came unhooked and were visible bulge under my skin. So I went back to the surgeon who implanted my first stim and had him fix it, the sad part is I am handicapped due to my back, but don’t qualify for disability due to I didn’t play the games. I have insurance thru my wife’s employer wich has a high deductable at $7,000 per year. So those 3 surgeries cost us $21 grand out of our pocket and I am taking more pain meds than before because they just are NOT what they make out to be, it’s high pressure sales. Frankly I am having Inez issues now and am thinking the batter on the one is leaking. I guess my wife will find out at my autopsy cause I’m not going thru any more costly guessing games.

    • Nancy Sajben MD Says:

      Spinal cord stimulators have probably made billions in profit – they will never publish 5 year data. We will never know how many they can help.

      The risk: They do not seem to advise people that once the metal leads are placed, you can never have an MRI scan the rest of your life, not for cancer, not for stroke, not for anything.

  39. Sherrie Atwell Says:

    Dr.Sajben, I have a friend who has had a spinal stimulator for several years and recently had motor skill troubles in all four limbs and trouble talking, They thought it was a stroke at first but did not show on a CT scan and are unable to perform an MRI. There also is a question of possible brain cancer because they found a mass on his lung, but again cannot be determined because they are unable to do the MRI. I am seeking more information on the possibility of the spinal stimulator causing his motor function problems. Thanks, Sherrie

    • Nancy Sajben MD Says:

      So very sorry to hear this. Your friend can be counseled on cause by their neurologist. And true, MRI cannot be done after a spinal cord stimulator has been placed. Too many people do not know the pros and cons of stimulators.

  40. Francine Fleming Says:

    Hello Dr. Sajben,
    I have been diagnosed with Polymyalgia Rheumatica. I truly want to avoid going on Prednisone long term so I have been researching Palmitoylethanolamide. The science looks really promising. I live in St. John’s, Newfoundland, in Canada, but no one has ever heard of PEA here. I am having trouble getting PeaPure in from the Netherlands but I am also really wary of ordering a product online, even from Vitalitus. I just wanted assurance by a ‘real person’ that the Vitalitus products are okay. I have found out that the Palmitoylethanolamide in PeaPure is manufactured in the USA and then shipped to the Netherlands. Why can’t we get PeaPure in North America?
    Regards,
    Francine

  41. kennethvarner2013 Says:

    Dr. Are you familar w Medicnova out of San Diego and their phase 3 fda fast tracked clinical trials w UCSD & UCLA w the medication ‘ Ibudilast ‘ to reduce brain inflammation in order to promote gilia production and treat pain, addiction, depression etc… If you have any insight to share about ibudilast or a comparison w LDN it would be greatly appreciated. l

    • Nancy Sajben MD Says:

      Ibudilast is a glial modulator. Great to hear of studies finally being done, again.

      Last time around it failed to show benefit. Hopefully it will this time. We need more glial modulators to reduce, to reset, the balance of CNS inflammation.

      The NNT, number needed to treat, before gabapentin helps pain is 7.2, meaning one person’s pain may respond of 7.2 tested.

  42. Craig Says:

    I am currently undergoing a trial Medtronic SCS. I have had to have it reprogrammed 3 times since it was installed 5 days ago. I have had sensations and issues that I have addressed with my rep and my neurosurgeon. I get a severe headache when the unit is turned on. I get the constant feeling of having to urinate. I have current running through my testicles which they can not seem to program out and I am getting little pain relief. I have had to failed back surgeries, many failed injections and I have CRPS. The leads that were inserted when I was in the table covered my mid back and both legs. After I got to my feet and waited while they programmed the unit in another room. They came in and plugged it in and I no longer had coverage on the right side. My crps is in both legs, my hands, arms and face. The lyrica helped to tamp down some of the burning but I am in pain 24/7 and this was my last resort. I have scar tissue completely surrounding my S1 nerve. By the grace of God, I am on my feet, on crutches. I seem to get a look of disbelief when I tell them the unit is causing these issues or it’s not giving me the relief I was counting on. Relief, only to cause greater issues and pain. Is not relief to me. I can not wait to get this trial out of my back. I believe the leads slipped and that is why I am not getting the full coverage I had on the table. The issues I have had are as follows: severe headache, constant feeling of having to urinate, extreme joint pain, abdominal pain, sleeplessness, involuntary jerking, surges in current even when sitting still. Intense pain around the lead insertion site. Current uncomfortably running through my testicles, regardless of setting. It is my opinion there is still not a lot known about crps and I have read evidence of people have great success with these units. Everyone reacts differently. My body obviously creates a lot of scar tissue and my orthopedic surgeon created a fair amount herself. I can’t imagine even more or being forced into a chair for yet another unlucky decision. The medication helps and I have lived this far without the optimism that it would end soon. I had high hoed for this device but I don’t think it is right for me.

  43. Britt Eastman Says:

    Hi I’m moving down home to southern OC.
    I was wondering if you have trained any doctors that are located in South OC (not in San Diego,CA) but more north (I’ll be in San Juan Capo areas to Laguna areas or more inland) I have CRPS that does not respond to any treatments.
    I love your approach and am very interested because I am not responding at all to anything anymore not even these horrible opiates and still it gets worse. We know the horrible side effects of long term opiate meds and the body. I just was wondering if you know of drs in my area that you trained or that agrees with your methods in such cases. (CRPS)
    Thank you for your time -Britt E.

  44. Donna Rubinetti Says:

    I developed RSD/CRPS about four years ago following a fall down several icy steps in which I reached up to a railing to break the fall. This resulted in shoulder/axilla pain that was not demonstrable on any diagnostic test or scan. My rheumatologist ultimately made a diagnosis of RSD after all other medical exams revealed no damage, therfore the dx was one of exclusion.
    The spread of this syndrome has been aggressive. Nerve pathways have moved from shoulder/brachial plexus area along the entire right side of my body, now crossing to the left side. Lying, standing, and especially sitting causes me excruciating, burning, stabbing pain along with allodynia. Prior to this injury I was diagnosed with mixed connective tissue disease that was in remission.
    For the past two months I have been taking ldn at the suggestion of my pain mgmt physician. I began with 1.5 mg and titrated up to 4.5 mg. I have not had relief as of this date. I recently began taking PEAPURE from the Netherlands, 400 mg TID.
    I have had numerous IV ketamine infusions but with no relief.
    I desperately want pain relief as I feel as though I’ve been set on fire. Do you suggest more time with these supplements? I do not take any opiods nor do I want to.
    Thanks for any help you can give to me.

    • Nancy Sajben MD Says:

      Awful. There are no easy answers.
      Even more awful is NIH does not care about pain research, clinical or otherwise.
      We know the innate immune system is thoroughly involved with chronic pain. Hundreds of medications already FDA approved may be able to modulate pain – either for better or worse.

  45. Donna Workman, CNP Says:

    Dr. sajben,
    Dr. San em
    I’ll try to keep this short because I really need to either speak to you or write you a story, probably one you’ve heard before, but I need your help. First, I am a Psychiatric nurse practitioner. I have had my own practice for going on 13 years. I read your article which was sent to me by the RSDSA by a Jim Broatch. I was totally amaze and everything you said makes perfect sense to me. Unfortunately, there seem to be no physicians in this state who have used or make mention the use of LDN and certainly not the course of treatment you propose. I’m determined to change that because I can. You might be surprised to know that I live in Northeast Ohio where we have supposedly the best Drs. In the world. Briefly, my interest in CRPS comes because my son has it. He has had Ketamine which worked but left him with hallucinations and flashbacks. I think because he suffers from bipolar disorder that was probably not a good choice for him. He has tried all of the usual medications prescribed for CRPS and he either had adverse reactions or they were ineffective. He has tried acupuncture which set his arm on fire, he has had injections which had no effect and a ganglion block that made his head and neck swell up like a pumpkin, and all from different “pain management” physicians. Did you know that when you fail or don’t respond to their treatment they send you away untreated. So we’ve been to 6 pain management physicians. The 3 who tried their treatments and 3 who looked at his records and told him there was nothing they could do for him. He is now trying lazor treatments given by a podiatrist who specializes in CRPS. He has had 2. After the 2nd one his arm and hand swelled and he has been in severe pain. He had a heart attack last April and almost died and now he wishes he had. He can’t work, he sits in his dark house by himself and is not eating or sleeping. He has given up. No one has offered him anything for pain nor will anyone consider that maybe he needs something until we find another treatment for him. I feel like he is dying, he looks like he’s dying and why I ask myself? So, you have given me new hope. I don’t know if I can find anyone to help my son, but I have patients with chronic pain and I can write prescriptions for every medication you use. I need to learn from you. If you ever have time to talk please call me 440-228-0507. If not could you please send me any information I can use to share with some of these docs and use to treat patients myself. djkampmam98@yahoo.com? I’ve been studying everything I have that you’ve written. Thank you and God bless you.

    • Nancy Sajben MD Says:

      You never know more than the science. It takes years of seeing amazing things with these small number of glial modulators. When the case is severe, as you describe your son, I use them all. Sequentially starting each one.

      I am available to any physician to rapidly cover a large amount of material in 3 hours if you or they wish to schedule time when my calendar permits.

      We need a science driven clinical pain management program.

  46. Chronic Migraine Says:

    Dear Dr. Sajben,

    I was curious if you are able to see patients via video-conferencing (eg: Skype)? I’m located in Philadelphia, PA and very interested to speak to you regarding treatment options for major depressive disorder (treatment-resistant) and intractable chronic migraine.

    Best.

  47. Elizabeth Davis Says:

    In 2010 I had a hysterectomy and was talked into a bladder lift just had a little leakage but was worried at the age of 49 maybe would had gotten worse as the years go by so I went ahead and let them I had my GYN and urologist which I find out later had a bad rep. Anyway he used mesh in me and wasn’t informed that he was going to use it. My problems began the day of my discharge I had severe 24/7 pain in my groin area so bad I had to keep ice down there. Only time I wasn’t in pain was when I could sleep. I even was suicidal. The urologist kept saying its scar tissue. Found out later that there were other patients of his with the same problem. I even had to catherize myself. Went to a different urologist and she clipped the mesh clipped because it was to tight around the urethra so my bladder was in spasms found out a year later it should of been removed so I went to another highly rated urologist that was recommended on mesh removal and had it removed. I still had the pain. Finally ended up going to a pain Doctor. Had a pedundal nerve block didn’t work had a sympothetic nerve block. Nothing. So the medtronic nerve stimulator was my last option to try. The trial was awesome first time in years no pain so I was excited about getting the permanent one. It took almost a year to get it because I had to have a neurosurgeon do a lamenectomy and he was located in one town and my pain Dr in another and it took forever for him to get his privlages in a facility over where my neurosurgeon worked. I just had it put in this Feb. Had a few complications because of all the scar tissue inside my body from a 1989 back surgery and the mesh. He had to drill new holes in my sacrum to put the leads in so I have to leads in my sacrum he did accidentally nik my spinal cord but got the bleeding stop. Kept me in the hospital for 2 days to keep an eye on me. They turned the stimulator was turned on at my post op which was two weeks after the surgery. So now I have no pain but pressure in my groin area and my whole body aches like I have had the heck beat out of me. My legs hurt all the way to my feet and they cramp up. I do have peripheral neuropathy but it was totally under control before the surgery. I don’t know what’s going on. I’ve messed with my stimulator to see if it would change anything but no success. I’m going to contact the medtronic rep after easter holiday. Do you have any suggestions for me? I apologize for the long story.

    • Nancy Sajben MD Says:

      I am so deeply sorry to hear this. Surgery of any type can lead to complications, but pain resulting from mesh is some of the worst I have ever seen.

      Before any surgery of any kind, do your research. Always search 2 or 3 words such as lawsuit mesh.

      Then, read as much as you can, use google scholar for medical publications – not with advertising.

      Here’s a Mayo Clinic link on mesh:

      http://www.mayoclinic.org/diseases-conditions/pelvic-organ-prolapse/in-depth/transvaginal-mesh-complications/art-20110300?pg=2

      Page 2, refer to the link for abbreviations.

      “in 2016, the FDA changed the classification of surgical mesh to repair POP transvaginally from a moderate-risk device to a ****high-risk device.****

      Research has shown that surgical mesh for transvaginal repair of POP can cause complications such as mesh erosion, pain, infection, bleeding, pain during sex, organ perforation and urinary problems. Many of these complications require additional treatment, including surgery.

      Treating SUI with a mesh sling also can cause complications, including mesh erosion, infection and pain. However, research suggests that the complications are infrequent and less severe than are complications associated with surgical mesh for transvaginal repair of POP, and rarely require follow-up surgery.

  48. Geri Latchford Says:

    Dr Sajben…. Live in NY. Will travel. Have crps right foot spread to other leg. Bowels a problem. Had for 9 months. Former NYC radio news anchor with 2 children. Please help. In and out of emergency room. Lost a lot of weight. Very impressed with your information. Ldn especially. Please contact. Thank you.

    • Nancy Sajben MD Says:

      Ask an MD in NYC to commit to scheduling 3 hrs teaching via telephone. Doctors can benefit from learning how to use glial modulators to profoundly reduce pain and/or depression, and may achieve remission.

  49. Donna aronson Says:

    I have been living with CRPS for four years following a stroke. I have been in excruciating pain 24 seven with no let up I am currently in rolled in a clinical trial which is setting the use of Neridronic acid via intravenous administration I will not start with the study medication until mid-September but I’m putting all my hopes and dreams into its success this pain is damaging my entire life mentally psychologically and physically I’ve been totally disabling my friends and family are frustrated and fed up so am I! Please investigate this study just Google neridronic acid and let me know what you think have you ever heard of this treatment before it is currently being used in Italy but is not yet FDA approved in the USA at this point I would try just about anything so I enrolled in the study and recently found out that I have qualified I cannot wait till mid September supposedly the study has found that more than half of the people who received for intravenous treatments have gone into remission I pray that I am among those who found relief otherwise I may go crazy

    • Nancy Sajben MD Says:

      Results are not yet available in this study, that is why it is being done. We do not know % of responders which have to be significant before FDA will approve in the US.

      Best wishes. Thank you for volunteering.

  50. Tim ONeill Says:

    Dr. Sajben wish I had found your site earlier. 60 yrs. old male, retired FDNY, BattalionChief, Transverse myelitis C6 2009, quad, wheelchair user, but have gotten use of arms, fingers and upper body back. Chronic Pain is plaguing me and ruining my life. I have burning on buttocks and legs severe this is torcherous because I have to sit in chair, shoulder blades ache as well as biceps and triceps sometimes clavicals. Unfortunately, I let some wingnut put a spinal cord stimulator in aaggghhh.cant believe this mess.

    I live in NYC, very interested in your protocols, will travel, will do anything I need to get this done, so many interests I want to persue, please Help Me!!

    Tim NYC

    • Nancy Sajben MD Says:

      Spinal Cord stimulator —-did it trigger any of those symptoms?

      You live near the renowned pain center at Icahn School of Medicine. Ask their advice and contact the RSDSA.org – linked at the top banner of this blog. Just click where it says donate, and read about them. Extraordinary group who can recommend other pain specialists near you.

  51. Susan Says:

    I adore the advocating you’ve done on behalf of pain patients.
    Your writing expresses the truth of what we suffer. Ignored an disposal people I think we should be called.
    I received Ketamine after 17 years of severe chronic pain. I couldn’t believe there was life!!
    I suffer from multiple spine surgery’s gone bad.
    After being in two car accidents Zsa passenger I was forced to a different doctor…a PA..I was seeing a MD.
    The PA decided her job was to negate my pain. Rapid detox me at home sending me into flight or fight….Im fighting fot Ketamine now!
    I will leave for Europe to be treated with dignity and to have a quality of life.
    I leave behind my family including grandchildren.
    Thank you CDC an uneducated MD s.
    Do no harm????
    Suicide awaits or flight 1345 to Europe.

    • Nancy Sajben MD Says:

      Susan, please get help. Call your family and friends and get professional help. Go to your nearest emergency room.

      And call
      National Suicide Prevention Lifeline
      Call 1-800-273-8255

  52. Sandy collins Says:

    Dr. Sajben,
    I have just found your amazing website through my Pudendal Neuralgia board. As you know, PN is a horrible condition and sitting is extremely painful with tight muscles/neuropathy. Walking, standing is also difficult as my PFCN nerves and who knows what else is affected.
    I am 61, have had this condition for three years which started out of the blue and seems to be aggravated by my topical bi est. I had surgery last year from a surgeon who said I would be ninety percent better, which made m condition worse.
    I have tried the TCA’s but the side affects were terrible for me. I take compounded rectal suppositories 10/10/20/5 baclofen/Diazapam/gabapentin/Ketamine. I also just use diazapam/Baclofen alone most days as the ketamine makes me loopy, but it is effective even at 5 mg for pain. I have already ordered PEA and have begun taking. I am thinking of ordering the two percent cream to rub on my butt! I am in a non legal MMJ state and have ordered CBD oil which Realm of Caring endorses.
    Is there anything else I could be doing to help my condition. The Dx’s want to give me Tramadol or other opoids and after reading that they cause more inflammation, I will not take them. I wish you saw out of state patients as I would fly across country to see you! In North Carolina there are no good “out of box pain” medication specialists who have a clue or even care of the sufferening and non functional life this has burdened me since 2014. I asked my compounder in Atlanta if a dx wrote Ketamine nasal spray would they compound it and they said no-since it is open to abuse. I would travel anywhere to find someone was willing to treat out of state patients.
    Bless you, for all you do and the wonderful information.
    Best,
    Sandy

    • Nancy Sajben MD Says:

      Use the search function on this blog, top left above the small photo. It is a small rectangle. Type in vulvodynia. Read those posts. One of the two medications can be obtained without prescription – PEA (in Netherlands PeaPure). Use the search function for ***both***of those terms also.

  53. Elaine Wurtenberg Says:

    Dear Doctor Sajben, My daughter relocated to California over the past year. She is a former patient off Dr. Robert Scheartzman, in Philadelphia. She received the ketamine coma treatment in 2004. She is having a very difficult time finding a doctor to continue her care, and therefore has not had a booster infusion since the end of 2016. I see that you are not accepting any new patients, but was wondering if you could suggest another doctor. I look forward to your response. Thank you.
    .


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