Ketamine IV vs Nasal Spray or Sublingual

08/22/2012 — Nancy Sajben MD

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Patients ask me to compare IV ketamine to other routes of administration such as intranasal or sublingual. No one has done comparisons. Even if they had, every person is different and may have several pain syndromes.

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I have outlined one case below. One disadvantage of IV ketamine is the cost and the need to schedule for an IV treatment with your physician often weeks in advance. For some, this may mean setting aside two weeks to travel and make other arrangements. The alternative is carrying this low cost medication in your pocket and using as needed to relieve pain when you have pain, or to prevent pain when you know your activity will flare it.

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Ketamine is an important medication for pain.  It is considered a third line choice for pain relief, but it is almost a first line choice for Complex Regional Pain Syndrome, CRPS  – the old term is RSD. And I prescribe it for other conditions that have been refractory to treatment. But, far more than any other pain syndrome, pain from CRPS can be flared by emotional stress or minor injury and it can spread to other areas.

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Ketamine is a short acting medication. It is both analgesic and anti-inflammatory.

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Opioids create pain; ketamine not only relieves pain, it also relieves inflammation. In fact, opioids may prevent ketamine from helping at all.

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A small number of pain specialists in the USA, most at university centers, provide IV ketamine for CRPS. Not all people respond. A lucky few may get months of pain relief, but may require monthly boosters, i.e. it may be a short acting medication only during the infusion or it may offer relief for weeks or months but not years. I do not believe anyone has published comparisons showing duration of effect.

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I view ketamine as a short acting medication that requires other combination medications to “clamp” the relief and prevent pain from recurring.

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Here is a case report posted a few years ago of my patient who had 8 months of relief from IV ketamine. It was given 24 hours/day for 5 days in May 2007, followed by four hour IV boosters two days every month. Unfortunately all ketamine stopped having any effect after 8 months. I then added multiple medications that were selected because of specific mechanisms — no opioids, no ketamine — and she has been pain free since December 2009 on a single drug.

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CASE REPORT

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Today was the 5th visit in the last two weeks with an out of state patient who has had CRPS since 1999. She also has sciatic neuropathy, chronic lumbar pain after 360 degree spinal fusion, shoulder pain, and two types of headache. Medications are now significantly helping all pain syndromes.

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Before seeing me, she had had a total of 9 infusions of IV ketamine most of them given at doses of 300mg/hr — a very high dose. She had no side effects from ketamine. One of those infusions was given for 6 days over 4 hours each day. She had failed a lidocaine infusion at high dose. A spinal cord stimulator was reprogrammed 10 times, but only made pain worse.

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I then started her on a combination of medications. With addition of the first new medication, she had 50% improvement in the first 24 to 36 hours, that lasted beyond the relief from nasal ketamine that was also started. Unfortunately, on day 8, she and another family member, came down with a virus that causes headache and severe vertigo. Nevertheless, all pain is markedly better.

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With ketamine she is able to reduce pain down to 1 on a scale of 10 for a few hours. Best of all she can carry it with her and use it as needed. She no longer needs to take two weeks out of her life to schedule IV ketamine infusions.

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It will take almost 3 months to slowly increase the other medications we started. Hopefully this combination will “clamp” the pain and prevent it from increasing so that she may become pain free without needing ketamine.

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After that, if she is able to become pain free, the plan is that we will then be able to slowly remove most of the new medications we started this week and still maintain relief of pain. I will see her again in the future.

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Sierra wildflowers

Click to embiggen

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The material on this site is for informational purposes only,

and is not a substitute for medical advice,

diagnosis or treatment provided by a qualified health care provider.

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Please understand that it is not legal for me to give medical advice without a consultation.

If you wish an appointment, please telephone my office.

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For My Home Page, click here: 

Welcome to my Weblog on Pain Management!

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Posted in Case Report, Complex Regional Pain Syndrome, Ketamine, Opioids, RSD, Sciatica, Spinal Cord Stimulator. Tags: , , , , , , . Leave a Comment »

Depression, Ketamine, Naltrexone, Glia and Inflammation – A Case Report

06/10/2012 — Nancy Sajben MD

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Current antidepressant therapies are only modestly effective, may have significant side effects and do not provide universal efficacy.

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The role of inflammation and immune systems in the pathogenesis of depression has become well-established since 2000. Immune system activity is mediated by pro-inflammatory cytokines that change behavior.

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This 2012 review is the first to summarize genetic variants of the inflammatory system involved in immune activation and Major Depressive Disorder, Major Recurrent Depression, Dysthymia, Childhood Onset Major Depression and Geriatric Depression: The role of immune genes in the association between depression and inflammation: A review of recent clinical studies. They reviewed 52 papers of which 27 are case-controlled studies. 

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Pro- and anti-inflammatory cytokines are produced by glial cells in the central nervous system (CNS). Glial cells make up 90% of the cells in the CNS; 10% are nerve cells, neurons. When glia are activated, they produce cytokines that lead to inflammation. Glia and inflammatory cytokines play a role in infection, stroke, trauma, chronic pain, Multiple Sclerosis, Alzheimer’s Disease, Parkinson’s Disease, ALS and Major Depression. The Nobel Prize was awarded in 2011 for discoveries of the innate immune system, in particular the mammalian Toll-like receptor 4 (TLR-4) which is the receptor for naltrexone. That discovery incidentally was made by Bruce Beutler at Scripps Research Institute.

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You can read more about glia and the inflammatory response posted January 2011: Pain and the Immune System – It’s Not Just About Neurons – Naltrexone. This is not specific to pain but also relates to some with major depression.

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Ketamine is a major anti-inflammatory and glial modulator. Naltrexone is a glial modulator that I have prescribed for chronic pain in low dose for almost four years in patients who are not taking opioids, and in ultra low microgram dose for more than eight years in patients who are on opioids for pain. Some of those case reports are posted on this site.

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Low dose naltrexone, LDN, may be effective for Autism, Multiple Sclerosis, and some autoimmune diseases. Jarred Younger at Stanford has shown fibromyalgia symptoms are improved by LDN; Jill Smith at Pennsylvania State University, Hershey, has shown remission in Crohn’s Disease with LDN; and Bruce Cree at UCSF has shown improved quality of life in a small study of Multiple Sclerosis that he is pursuing with larger multi-center studies.

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Case Report

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This week I saw a young man who traveled from Northern California for me to possibly treat major depression with nasal ketamine. Depression prevented him from working for the last two years. He scored 34 on the Hamilton Depression Rating Scale. Scores over 24 indicate severe depression. On June 4, 2012, we started his treatment using ketamine nasal spray. The daily dose was increased but has not yet reached an effective level. In my experience of prescribing ketamine for pain and depression in the last eleven years, the dose differs for everyone and is not related to age, gender or body weight.

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As conveyed by him to me, his progress thus far:

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ON JUNE 7, 2012, early morning, he used 40 mg of ketamine by nasal spray. He reported feeling dizzy, experiencing spinning sensation for two hours and then was his usual self, i.e. he felt bad the rest of the day as his usual self but vision was better. His strabismus (lazy eye) usually depends on better mood, but mood was unchanged.

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At 3:00 pm, he took naltrexone, a very low dose approximately 4 mg.

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ON JUNE 8th: approximately 12 hours later, he woke at 2 AM. He later told me that he was feeling “extremely sharp! I felt great! Clear in mind, quiet and calm. I didn’t realize how noisy my mind is till everything felt calm.” He returned back to sleep.

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He woke again at 6 AM feeling great! Not thinking negative thoughts, but no other change, i.e. did not like or love activities or people anymore than in recent years with his depression.

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At 1:15 PM, in the office his self-rated improvement of depression was 40% due to the low dose of naltrexone taken yesterday afternoon. He had no effect from ketamine as yet, and had not used any in more than 24 hours.

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My plan has been to trial low dose naltrexone for persons with treatment resistant depression. If it is effective, then ketamine is not needed. Ketamine is a short acting medication and may pose issues such as tolerance, whereas low dose naltrexone is simple, once daily, used with few side effects and has never caused tolerance in my clinical experience.

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It is very possible that with such rapid improvement overnight and continued treatment, his depression will continue to improve over coming weeks and months.

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The material on this site is for informational purposes only,

and is not a substitute for medical advice,

diagnosis or treatment provided by a qualified health care provider.

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Please understand that it is not legal for me to give medical advice without a consultation.

If you wish an appointment, please telephone my office or contact your local psychiatrist.

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For My Home Page, click here: 

Welcome to my Weblog on Pain Management!

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Posted in Case Report, Depression, Ketamine, Low Dose Naltrexone LDN, Naltrexone. Tags: , , , , . Leave a Comment »

RSD, Complex Regional Pain Syndrome – a case report

05/23/2012 — Nancy Sajben MD

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Severe Pain for Three Years,

 80% better in 10 days

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“This has been life altering.”

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This is a very bright young woman who was an all state volleyball player until onset of Complex Regional Pain Syndrome three years ago in the right hand and wrist. It began after blood was drawn from the hand for a chemistry study and, one week later, the fingers turned black, lost blood flow, followed by emergency surgery for removal of a blood clot from the back of her hand. She woke after surgery, tearing the sheet off due to intense pain on light touch — that is called allodynia — and then developed severe edema from the hand to the shoulder.

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It was four excruciating weeks before the diagnosis of complex regional pain syndrome was made.

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CRPS or RSD is a diagnosis that every MD,

every surgeon, every ER doctor,

every psychiatrist and psychologist, every nurse and therapist should know how to diagnose.

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Because she was a minor, they would not do nerve blocks.

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She developed contractures of the fingers and hand,

was unable to move the fingers.

  A major university hospital diagnosed Munchausen Syndrome;

mom was diagnosed with Munchausen’s by proxy.

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This happens so often. This is 2012.

If it’s not the doctors,

it’s the insurance companies

creating roadblocks to diagnosis or treatment or both.

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Why is pain management not taught at medical schools?

Only 3% of schools today give 30 hours instruction in four years, Yale most recently.

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At a major university hospital two hours away, she failed to respond to 14 stellate and brachial plexus blocks. But the wound reopened by itself, the stitch fell out. The psychiatry department evaluated her after she was so drugged with methadone, she does not even recall the interview. They diagnosed Munchausen Syndrome. That changed everything. Relationship went sour. Distrust of MD’s began and was confirmed many times in many places along the northeastern corridor and Texas.

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That fall, she became a student at the university of her dreams. The diagnosis of CRPS was confirmed at their university medical center hospital where they wanted to continue the same blocks that had failed. Elsewhere, the chief of a renowned ivy league university pain service wanted to talk to her only about spinal cord stimulators, declined by the family.

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In May 2010, she qualified for an NIH study of neurotropin double blind 6 weeks on, 6 weeks placebo. Failed.

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She was seen by Dr. Schwartzman in Philadelphia October 2011, and sent from there to NYC to rule out neuroma dorsum right hand, negative.

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On Lyrica, she gained 20 lbs, then back to 130 lbs baseline when off of Lyrica. Intolerance to Morphine – hives, Duragesic – total body itching. Ambien – hallucinations, Lunesta – hyper. Benadryl helped somewhat. Detoxing from Nucynta – lips were bright red.

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Her weight dropped from 130 to 115. Many medications were trialed and failed. Marinol helps pain slightly and gives the best sleep in years, better appetite. It does cause anxiety, but she had not slept in three years, and it gives 4 to 6 hours of good sleep. She developed sharp bitemporal headaches. I advised headache is a side effect of Pristiq —- now thankfully discontinued and better.

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Since August 2011, she has had CRPS pain in the right leg, worse walking, weight bearing.  There is discoloration of the dorsum hand usually, at times along proximal forearm, recently at right foot and leg. She had edema up to the shoulder measuring 30 cm. Nails growth faster at the right hand, possibly less hair growth right hand. Temperature usually cooler on the right hand, at times at night the hand and foot become hotter. No change in sweating noted.

The first year, she had almost total loss of function in the hand with pain and contractures —and forced herself to move the fingers with OT and PT, then home exercise. She still has days when the fingers remain flexed, but 98% of the time there is full movement as she continually tries to use the hand/fingers to write and type. Nose may become ice cold and tingly since CRPS spread to right side of face and right lower limb. At times tingling fingers. She struggles with memory when pain is severe and with lack of sleep.

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Pain ranges 7 to 10, average 8. Edema was significant for one year, now comes and goes. Allodynia is present hands and feet, now a different scale than before when she could not even be in the car.

However, with weight bearing and walking, pain of the right lower limb became most intense.  She will be 21 in July, but on a bad day was unable to leave her bedroom to walk downstairs as pain was too severe. She would communicate with family by loudly calling or texting. It was unthinkable to make plans for the next week due to severe pain. She has osteoporosis with atrophy of the right upper limb, and has had color changes and edema of the hand.

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She lives in an eastern state inland, two hours away from the mid Atlantic seaboard and major medical center. She failed ketamine infusion at a major university medical center on the east coast. The cost and inconvenience was significant and the family did not know that ketamine may fail to have any effect if taking opioid analgesics. Once mom discovered that, she was able to wean off the opioid medication. Ultimately, after many more interventions, much later, in crisis, she did benefit from IV ketamine infusion, and was able to regain some movement of her fingers on the right hand, but there was no lasting relief. It was a struggle to obtain approval through her insurance.

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She has been spending a great deal of time in bed for months. Morning stiffness is widespread for one to two hours. Bending is difficult, feels as if “hit by a bus,” but she does stretching, moving, distraction and Yoga when able.

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Much better in 10 days

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Day one: pain of the entire right side, face, trunk, limbs, rated 7 to 10 on a scale of 10, average 8. She guards the dominant right hand and the signature is difficult. Atrophy of the right upper limb is present, nails longer on the right hand, dusky dark erythema and long jagged scar over the dorsum right hand, mild erythema of the right upper and right lower limbs.

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On the first day, in the office, she tried the first dose of ketamine nasal spray and after a repeat dose, she was puzzled, thinking to herself, then let us know she realized she was able to concentrate. A small dose is not enough to relieve severe pain, but even major depression can vanish at that dose. Two sprays relieved the brain fog of depression; pain was still 8 on a scale of 10. Blood pressure and pulse did not change before and after doses. She felt hopeful.

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In the next few days she was able to do the unthinkable: make plans with friends, walk 45 minutes, become active, and remain active in a way that had not been possible. She was far more active with much less pain.  Over the weekend, six days after she arrived, after we had sequentially added several new medications, she found the dosage of nasal and sublingual ketamine that worked for her. She has actually had times when she was pain free. As noted during prior ketamine infusions, she requires a far higher dose than most patients to achieve effect. The plan now is to use higher doses at home when time permits for best effect, and booster sprays of nasal ketamine as needed when away from home. She can carry it in her pocket. There is no need for ICU infusions and the fight to get insurance coverage for those stays.

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Of great significance, she has even made plans for the entire summer.

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More details of her case will be added, as time permits. For now, this page is here to allow the patient and family and others to send comments. She will continue slow titration of other medications that will take three months before reaching the target dose, before we can assess efficacy. Based on my experience treating chronic intractable neuropathic pain including CRPS, it is possible these medications will be able to stabilize and relieve pain without ketamine.

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See other case reports of treatment of CRPS here, here, and here.

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You can read some of the science of pain, glia and inflammation. Ketamine is significantly anti-inflammatory. Three of her new medications are glial modulators. Treatment of severe chronic pain usually involves rational polypharmacy, not one medication and not medication alone. It requires a holistic approach to heal: P.T., O.T., massage, cognitive behavioral therapy, guided imagery, visualization, positive thinking, remaining active, and other modalities that depend upon the underlying cause: physical, emotional, spiritual, and financial. The treatment for CRPS is not specific for that condition alone, but the gains can be possible with tremendous discipline, effort, single minded determination and the loving support of friends and family.

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Be cautious of spinal cord stimulators. Try everything else first.

They can create pain and scarring or tether the spinal cord.

Be proactive.

Remember that guidelines and strategies for diagnosis and treatment are outdated.

Support RSDSA.org if you can.

They support high quality pain research.

You can go directly to their site or donate to them (not me)

using the link at the top of my site here.

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Patients and doctors do not understand that opioids create pain.

A 2006 publication from Vanderbilt shows how much better pain can be to taper off.

The abstract:

Significant pain reduction in chronic pain patients after detoxification from high-dose opioids.

The article:

Significant pain reduction in chronic pain patients after detoxification from high-dose opioids.

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More on this young woman’s journey coming.

It’s been busy!

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The material on this site is for informational purposes only,

and is not a substitute for medical advice,

diagnosis or treatment provided by a qualified health care provider.

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Please understand that it is not legal for me to give medical advice without a consultation.

If you wish an appointment, you will need to telephone my office.

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For My Home Page, click here: 

Welcome to my Weblog on Pain Management!

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Posted in Case Report, Complex Regional Pain Syndrome, CRPS, Depression, Dextromethorphan, Glia, Ketamine, Lamotrigine, Low Dose Naltrexone LDN, Neuropathy, Opioids, Procedures, RSD, Spinal cord stimulators, Sympathetic blocks. Tags: , , , , , . 11 Comments »

CRPS Two Years, Pain Free on Low Dose Naltrexone

01/29/2012 — Nancy Sajben MD

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Girl with CRPS cold type two years, pain free on naltrexone 3 mg

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KR, 17 year old seen 11/4/11, with Complex Regional Pain Syndrome [CRPS] involving left lower limb from foot to hip, onset 3/09. She has nonspecific immune system abnormalities and many food sensitivities that caused leaky gut syndrome and 30 lb weight loss with certain foods causing the stomach to be rock hard and vomit. Elimination diet allowed her to regain 30 lbs.

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CRPS diagnosed February 2011, two years after first symptoms. The leg was cold, purple, mottled with allodynia. Pain had been 9 on scale of 10 for weeks prior to my visit when she was started on prednisone 60 mg x 1 week, 40 mg 1 week, and a few days on 20 mg, dropping her average pain to 4/10. Pain at my visit 11/4/11, ranged from 4 to 9, average 5, that was 40% better after prednisone. She takes a wheelchair to school and for distance, is able to walk short distances with cane, and without cane she concentrates walking slowly to avoid limp. She is very bright, highly motivated and described the limb as cold, aching, throbbing, shooting, stabbing, sharp, tender, burning, exhausting, tiring, miserable, unbearable. Pain severely interfered with walking, work, sleep, enjoyment of life, general activity, and relations with others. At rare times, the limb would jump. Numbness was present posteriorly off and on, especially when sitting, not present when standing.

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She had good health until mononucleosis at age 13 in October 2007. A few weeks later irritable bowel syndrome began (IBS-C), then CRPS began after injury March 2009, reinjury July 2009, then no problems until February 2011. The initial injury occurred when roughhousing with a friend, and her foot pulled her toes in a dorsiflexed position. The next day it was swollen and purple with bruising pain after the first injury. She was in a boot for several weeks. CRPS improved, she went to Peru climbing Machu Pichu when she was reinjured again. The foot was swollen, burning with allodynia. She was taken to a hospital in Chile where they wrapped the foot, advised to take Advil. Once home, she went to physical therapy. It resolved in 6 weeks.

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February 2011, fulfilling PE for high school, she tried out for swim team. Day two, she had pain from kicking in the water and was never able to get back into the water. She was in crutches the next 2.5 months and began physical therapy three times weekly since then. Pain began in the sole of the foot, but a slip and fall in the rain caused pain to spread to the hip. A flare in the past month caused pain much more in the left knee after prolonged sitting for tests. She now takes her wheelchair to school which she began to use early October 2011. She was in the chair consistently two weeks, now only as needed, and never uses it at home. She has used a cane since later April when she got off her crutches. In hot weather, the cold left lower limb sweats profusely. No hair changes. On prednisone, toes nails grow faster. She has used warm and cold compresses to relieve pain. She failed gabapentin when it caused her to be nonfunctional on 900 mg/day with no relief. Lyrica caused hives. Nortriptyline caused personality change, becoming very mean, an Atilla the Hun, opposite her usual good nature. Cymbalta 20 mg – severe dry throat, thick mucous, medications lodged in esophagus. Tried Tramadol 25 mg TID and Naproxen 500 bid.

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Incidentally, she saw a neurologist at Children’s Hospital in 2009 due to sudden onset of diplopia that was found due to allergy to contacts, and resolved with new contacts. She saw an allergist in 2010, and tested positive for nonspecific autoimmune disorder: ANA 1:160 speckled, positive for food sensitivities, and after four months of stopping certain foods, ANA was negative: gluten, dairy, garlic, broccoli, lima beans, banana, asparagus, pineapple, oyster, mushroom. While eating those foods she had IBS-C, stomach would harden, causing vomiting, and she lost 30 lbs, was 120 before —- it is part of the leaky gut syndrome that prevented her to absorb certain nutrients. She has regained weight and all symptoms resolved. She does not have dry mouth or dry eyes. She is sensitive to normal doses of medications like her grandmother.

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Exam: Toes are cold on the left. At the moment, no changes in hair, skin color, temperature, sweating. Stretch reflexes symmetrical, brisk in both lower limbs. She uses a cane but is able to walk slowly without limp, carefully, holding both arms stiffly at her side as she concentrates on walking. Sensory examination was not detailed due to patient discomfort and long trip from home that was very tiring.

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Treatment: Prednisone was rapidly tapered off. Begin 1 mg low dose naltrexone [LDN]. Begin N-acetyl cysteine [NAC] 600 mg x 3/day for “cold” CRPS – it is reported to take 3 or 4 months to help.

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Reponse: Mom wrote a few days later, “On the way home from our visit in La Jolla, K started to experience sensation in her leg. You had asked her at the appointment if she had numbness and she could feel some in the back of her leg. She didn’t realize the extent of it. The Naltrexone [1 mg] seems to be awakening areas of her leg. She has felt more muscle pain as well. She feels this may be because she is able to use more muscles in her leg with the increased feeling. She also had her foot stepped on the next day (Saturday). In the past, she would have been incapacitated with the pain for a couple weeks. With the Naltrexone, she felt very little pain at all. We were both very excited to see these changes. 🙂 She is at about a level 3 to 4 in pain.”

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Encouraged mom to continue increasing LDN as tolerated.

11/16/11, ” K is pain free at 3 mg of Naltrexone. We are not sure of any side effects at that level as she has a cold/flu and has had nausea and headaches. She does not have any sleep issues so far. K thought the Delsym was making her lightheaded. She will start it again as soon as she is feeling better.…

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Needless to say, it makes me very happy to know I am able to help someone in pain, especially a child.

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11/21/11: “We are thrilled too! The only things she is taking is the NAC and the naltrexone. When she tried 2mgs the pain receded to just the upper back of the leg. She also noticed the minor cut she had that day burned a lot. At 3mg all pain just vanished. I can’t tell you how excited we are. Her muscles are a bit sore in the leg as she is exerting herself more in physical therapy…. I am interested to see K’s next autoimmune text results in 6 months. I am wondering whether her Autoimmune test results will be negative from taking the naltrexone.”

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1/15/12, “K has been using the LDN at 4 mg and it is working better for her….Once K has recovered from the mononucleosis and is back on her feet again she will know for sure whether her leg pain is gone when standing in one position. If not, she will try the dose at 5 mg and let you know how that goes.”

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The material on this site is for informational purposes only, and is not a substitute for medical advice,
diagnosis or treatment provided by a qualified health care provider.
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For My Home Page, click here:  
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Posted in Case Report, Complex Regional Pain Syndrome, CRPS, Low Dose Naltrexone LDN, RSD, Uncategorized. Tags: , , , , , . 3 Comments »

Case Reports – Fibromyalgia, Spinal Stenosis, Disc Disease, CRPS, Transverse Myelitis, Central Pain

01/28/2012 — Nancy Sajben MD

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Glial research key to intractable pain?

These are not ordinary cases.

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These patients have failed every known treatment for years under the care of well known specialists.

They show a remarkable and lasting response to these simple medications.

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The response is important because these medications are 

(1) available, low dose, nontoxic medications largely ignored by the medical community for pain,

(2) glial modulators, and

 (3) more glial research is urgently needed for millions with intractable pain.

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May 2011: The World Health Organization says undertreated pain is America’s #1 public health problem

Department of Health and Human Services says that patients with chronic pain

outnumber patients with heart disease, diabetes and cancer combined

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Fibromyalgia Disabling, Responds to LDN & Dextromethorphan

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AP, 75 years old with scoliosis, restless legs syndrome, anxiety, seen 8/6/04: Onset of fibromyalgia in 2000 after losing half her investment portfolio. It began with acute onset of severe arthralgias, myalgias, fatigue without fever, that prevented her from returning to her business as an art dealer for corporations, private collections. It disappeared without a trace suddenly in 2 months. She was nearly bedridden, just able to sit in a chair, diagnosed as fibromyalgia by a rheumatologist.

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Two years ago, pain, fatigue and “brain fog” returned in 2002, now disabled with intense muscle ache across upper and lower back, circumferentially in thighs/legs, everywhere except head, trunk, feet, fingers – stable since acute onset, markedly interferes with activity, mood, thinking, walking, sleeping, doing her checking account and driving. Pain ranges 2 to 10, average 4 to 5. Burning pain is recent, across upper thoracic and arms, avoids simple activity to avoid flare.  She rated moderate depression due to pain and inability to be active and live a social life. She has been unable to resume walking, a favorite activity. Exam: very anxious, muscle tenderness 18 points, including buttocks, calves, iliotibial bands, right cervical-thoracic paraspinal more than left. Spine tender at almost every level, maximal at L4-5. Sciatic notches tender. Both legs severely discolored brown from chronic venous insufficiency. Gait very slow, wide based later found due to cerebellar atrophy (MRI).

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Oxycontin was started and changed to fentanyl 50 mcg/hr every 72 hours. Fentanyl was then decreased to 25 mcg/hr after adding Fentora 100 mcg twice daily, Lyrica 50 mg at bedtime, with mirtazepine 15 mg and temazepam 15 mg for sleep. She continued to have marked difficulty walking, concentrating, thinking, and was unable to drive or do her checking account. Constant issues with constipation required multiple preparations for stool softener, laxatives, anti-emetics; hypertension was difficult to control, and she had high anxiety and stress.

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Fibromyalgia was then helped somewhat by pramipexole 0.5 mg twice daily, amitriptyline 20 to 50 mg/day, Lidoderm 5% patches 3 per day, clonidine 0.1 mg twice daily, that allowed fentanyl patch to be discontinued and lowered her opioid requirement down to Fentora 100 mcg bid, still with some constipation but less.

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11/3/08, started low dose naltrexone [LDN] 1 mg – slept only 3 hours that night. On 4 mg, no sleep at all, 1 mg somewhat better, 2 nights after that back to usual sleep but Pain levels low 0 to 3 limited to low back ache.  Before LDN,  pain ranged from 3 to 8, average 5. She had no withdrawal from opioids.  BM’s were excellent for at least 3 days.  Sinemet 25/100 replaced Fentora for restless legs syndrome.

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However, LDN was discontinued a few weeks later as she had so much energy she was hypomanic. Months later she again developed some pain.

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4/8/09 started Delsym 2 teaspoons every 12 hours. Pain dropped to zero. She never needed opioid again, had no withdrawal. A dose of Delsym is the same as long acting dextromethorphan [DM] 60 mg capsules, but 60 mg was too strong for her —- she became hypomanic again. DM allowed her to become pain free. She stopped DM 10 days, feeling so great she forgot to take it until low back pain returned initially mild, then severe. “I started getting back pain, I thought it was just back pain. I have scoliosis, then it became very severe, then realized am I getting fibromyalgia again.”

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After resuming DM, it took only 3 days for pain to come down from 10 to 3-4, then less and less to 1-2 on scale of 10. She was back on DM 4 days. Today, after being off DM and getting return of pain, she is now still using a Lidoderm 5% patch daily to the low back and occasional Aspercreme to groin qhs. Did not need to use these when pain was zero.

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She is 80 years old feeling better than she felt when she was 50!  “My biggest problem is slowing down. I’m 80. I enjoy doing what I’m doing. I like being alive. I’m a little hyper so I stopped drinking coffee.  Hyper because so excited about life, and catching up to what I could have done.” She is now able to clean and organize things she put off for years while in pain. She began designing bathrooms and kitchens for more than one location and waking up after 6 hours of sleep to begin work all day. Her husband describes her as having the energy of ten people. He needs to interrupt her to stop work and have lunch.

`

“It changed my outlook, I’m so much happier. I am in heaven. I am back to my mental age of 50. I feel alive with energy, vibrance, lust for life. I drive clearly, I have a brain, my reaction to the wheel, to moving and turning and seeing things is better.”

`

10-19-09, with mild recurrence of pain, she was advised to continue DM 60 mg  AM and PM, add naltrexone 4.5 mg PM, continue both for 1 or 2 weeks and discontinue if no more pain.

`

7-26-10, experimented with timing and dosage, 4.5 mg LDN best at 5 or 7 AM, 2 to 4 PM, and bedtime.  DM 60 mg twice daily. Voltaren gel qd < 1/2 tsp total in AM only at times variously at hips, back, medial arms, groin, thighs, behind knees where pain occurs when it occurs. Rates pain 0 to 2, avg 0. Has pain if waits too long to take LDN too long.

`

“I feel wonderful. I don’t feel high. Normal, comfortable at ease, mentally clear – more than in years, memory is better – even helped dyslexia. Now I’m able to skim reading.” She reads faster, is able to multitask ten things at once and get them all done. Husband says, ”She has boundless energy.” Biggest problem is instability gait, wobbles. Fear of falling. Fell backwards in bedroom one month ago,a  trip and fall onto her back, bruised posterior thoracic and right arm. Had home PT. She works out in gym, treadmill daily. Exam: 2/3 of proximal legs and both feet now normal skin color. Gait slowed. Wide based. MS and mood – excellent. Drowsy [never sits still at home].

`

Fall 2010, husband reports her gait markedly improved, faster, more stable after dental prothesis. She is walking faster. She is now 82 and full of energy. Visits initially were monthly for several years while on opioid analgesics, now seen 2 or 3 times a year for minor adjustments and off opioids since 2008.

`

Of course all specialists have stories of unusual responses,

but these are responses to the combination of medications that I use, that are not used by other MD’s.

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Transverse Myelitis Responding to Low Dose Naltrexone

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There is currently no known treatment for Transverse Myelitis. It is very rare, if ever possible, to be able to reverse lesions of the brain and spinal cord seen on MRI, especially if chronic. This man is responding to this tiny dose of naltrexone, 1/6th or 1/8th of the smallest tablet.

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FB, 47 year old male triathlete seen 11/1/10. He was in excellent health until 11/09. He began to have interscapular pain worse on the left, days later a band around the waist approximately T8-T10 described as “muscular” discomfort, later with numbness in the same area, followed by weakness, spasticity of the left lower limb and atrophy. Intermittent Lhermitte’s, now resolved. Hypersensitivity to sensation of his shirt across his chest and shoulders lasted 4 to 6 weeks with initial onset. Initially misdiagnosed as Multiple Sclerosis. MRI and spinal fluid led to diagnosis of transverse myelitis.

~

On 3/11/10, MRI cervical and thoracic cord [probably the second MRI of two sets of MRI’s] showed extensive parenchymatous lesions extending at least 10 segments from T1-T10 with extra-axial fluid collection that appears as an extensive arachnoid cyst over multiple levels. No obvious cord compression. CSF Mixed lymphocytes with reactive pleocytosis, WBC 2/cu mm, 97% lymphs, 3% monos.

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Diagnoses  11/1/10:  Transverse myelitis with foot drop, spastic monoparesis, atrophy of the left lower extremity, neurogenic bladder, constipation, band around the lower thoracic “waist” onset 11/09, self-treated by injections of B12 with declofenac.   He also had gluten intolerance – eating gluten flares above symptoms

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1/27/11, return visit: “I feel l ike I’ve come light years away” compared to one year ago.

Low dose naltrexone [LDN]  prescribed November 2010, took for few months. Felt immediate effects, improved in strength at left lower extremity, foot drop still present but no longer catches toes on curbs or steps.

He increased dose to 7 or 8 mg, began to feel slightly weird, mild insomnia, like head felt a little weird. Stopped LDN a couple months.

Resumed LDN April 2011,  and again began to feel positive effects; used it daily since then, probably 6 to 7 mg/day.

Resolved: burning pain both feet had radiated up the calves when seen 11/10 ––> discontinued gabapentin one year ago, about 1/10.

Resolved: banding around the waist.

Improved strength 30%  in left lower extremity, still unable to push off with the left foot, but no pain.

Improved: Occasionally used to get a trembling in the left leg evenings 7 or 8 pm, shaking every 20 secs for an hour, at times preventing sleep – resolved about 4 months ago, occurs now perhaps 1 or 2 days a month.

Improved bladder urgency, must find toilet 3 minutes before he voids, now limited to the first 3 hours of the morning.  Before, he could not be far from restroom. Rectal sphincter feels weak.

~

In December 2011, he felt symptoms were plateauing, slowly getting better. Went on vacation in January, ran out of LDN for 11 days and is today 30% weaker. That was the longest time he has been off LDN in the last 9 months. The left leg feels a little like spaghetti. When on LDN, he felt stronger when lifting the leg.

~

Sleep: When began LDN, had 3 or 4 months of vivid dreaming, but urinated during sleep 2 or 3 times a month while have the vivid dream that he was voiding. That resolved.

Still has weird sensations: right foot a little burning sensation, not pain, of the whole foot, lasting 1 or 2 hours, quite tolerable, nothing like it was before when pain radiated to the calves of both legs.

His medications:  LDN, vitamin D3, alpha lipoic acid, Fish oil 2 or 3/day,

Every couple weeks he gets an injection of B12 and diclofenac 2 vials to buttock and feels definite benefit – I warned not to use diclofenac due to high risk of heart attack, cardiac arrhythmias with this NSAID.

~

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Spinal Stenosis Pain Responds to Nasal Ketamine

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ML, 81 year old diabetic woman with heart surgery 9 months ago, reports that she was able to walk 26 miles a day in Snow Canyon Utah 10 years ago, but barely able to walk room to room the last year due to lumbar pain and weakness from spinal stenosis. Function failed to benefit from tramadol 100 mg x 3/day and she disliked the side effects. Gabapentin failed to help, but when she tried to stop, she had severe nausea and she lost so much weight in four days that her endocrinologist advised her to resume it.

~

Nasal ketamine was started with excellent results allowing her to walk again. Unfortunately, on her own, she abruptly and almost immediately stopped tramadol which resulted in severe opioid withdrawal: severe vomiting, dry heaves and watery diarrhea for 48 hours. She was admitted via ER with chest pressure and muscle strain of abdominal muscles from vomiting. EKG and chemistry ruled out heart attack. Low potassium was corrected and she returned home the next day delighted with pain control.

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A few days after hospital discharge she reports: “Feeling good, actually exercising in the pool every day, 30 minutes without stopping.” Weather here has been sunny 80 degrees this January. “I never built back my stamina after the heart surgery because of the pain.  I think I am finally on the right  track and it feels good!!” Her son is coming over to walk around the block with her tomorrow.

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 Complex Regional Pain Syndrome 70% Better in 6 Weeks after Opioid Detox,

Responding to Low Dose Naltrexone, Ketamine, Lamotrigine, Memantine

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AD, 23 year old male athlete with Complex Regional Pain Syndrome [CRPS] caused him to be bedridden 4.5 years on opioids. Pain was so severe he was unable to eat and lost 30 pounds of muscle. He was slowly able to bear weight and walk 5 or 6 steps with an underarm crutch, but used a wheelchair when not in bed. Fatigue was severe and unbearable just to be out of bed a few minutes. Pain involved all limbs, but focused at the cold right lower extremity, particularly the knee where he had maximal pain. He is tall and weighed 110 pounds when first seen July 2011.

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I advise patients that opioids create pain.  I am guided by a colleague who detoxed thousands of persons in pain over a 20 year period and never once found the patient had more pain after detox. Confirming this, Baron and McDonald published Significant pain reduction in chronic pain patients after detoxification from high-dose opioids in 2006. Some of the science  is discussed here.

~in 2006

This young man decided the night of his first visit to stop opioids and was admitted for symptom control with opioid withdrawal. He was started on low dose naltrexone [LDN], N-acetyl cysteine, dextromethorphan, slow titration of lamotrigine and memantine slow titration, and oral ketamine. Six weeks later he returned and rated himself 70% better, no longer in a wheelchair, not needing a crutch, but still with significant fatigue that caused him to need to lie down during the day. However, he was able to return to his MBA program by September and is doing well in college.

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  CRPS pain 70% Better in 6 weeks on Low Dose Naltrexone [LDN], Patient with ALS

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FG,  a 71 year old woman with Complex Regional Pain Syndrome [CRPS] and severe burning pain in the legs that markedly interfered with sleep, was seen in fall 2011 for pain in the legs that began two years ago after thoracic fusion October 2009, with cage and titanium rods T4-T9. Disc at T5-6 was compressing the spinal cord and there was an asymptomatic T4-T5 compression fracture 4 to 5 years ago. After thoracic fusion she was able to use a walker for a time, but had weakness progressing to paraplegia and had been in a wheelchair for 6 months. ALS was diagnosed at two university medical centers. Her feet were deep purple, swollen twice their size. and now back to normal size after 7 low power laser treatments. She was now having a frequent ache in both deltoids for a few months from needing to use her arms to push up from the wheelchair. Recently she had severe weight loss with shortness of breath, and during sleep used CPAP for obstructive sleep apnea. Polymyalgia rheumatic from year 2000 was in remission – she’d been on prednisone 5 years until 2005. Breathing was shallow, FVC 1.72 is 54% of predicted.

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She had a spinal cord stimulator at T10-11.

Medications tried and failed: Cymbalta 30 mg maximum dose, Neurontin 400 mg BID maximum dose, Lyrica dose unknown. Fentanyl patches no effect.

Methadone 25 mg/day for 1.5 years, is the only medication that helps, estimated 80% relief, nevertheless described pain as severe. She used it 5 of 7 days. With ALS causing progressive respiratory difficulty consistent with neuromuscular disease, it was deemed dangerous to continue an opioid. 

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Low dose naltrexone 4.5 mg to be started after all methadone is out of her system. She was started on N-acetyl cysteine 600 mg capsules x 3/day – the standard of care in Netherlands since 1995 for cold CRPS. Lamictal 25 mg, to begin 1 daily for 2 weeks and slowly titrate to 300 mg per day.

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On return 6 seeks later, she was delighted to report 70% relief of pain. She plans to return if pain progresses.

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Complex Lumbar Disc Disease Markedly Better with Low Dose Naltrexone 

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CL, first seen age 57, December 2004, for pain right buttock radiating to right leg due to degenerative disc disease with lumbar radiculitis. She injured the right knee four weeks prior after giveaway weakness of the right leg. After the recent lumbar laminectomy in June 2003, she had done well only during the months of October, November, December before she herniated the lumbar disc at L3-4 and declined further surgery. The flare occurred after sitting in a chair for 4 hours taking a class. Symptoms were similar to those she had prior to extensive lumbar surgery but she declined repeat surgery. On Exam, she had positive straight leg raising at 45 degrees bilaterally and diminished reflex right knee, but motor, sensory exam was otherwise intact.

  ~

She had received epidurals perhaps 6 per year from 1999 until December 2004, posing a risk for osteoporosis, and she had symptoms of probable ulcer disease from a steroid dose pack. She had extreme pain during the epidural, but got fairly good relief for only one to two months. Pain in the leg now is 50% less from the recent epidural but will it last?

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Past Surgery: Cervical laminectomy and fusion C5-C7 with anterior plate, lumbar hemi-laminotomies L3 to S1 on the right and discectomy right L3-L4 in June 2003. MRI done after surgery 4/30/04: 1.  Large right paracentral recurrent disc herniation filling right lateral recess at L3-4. 2.  Asymmetrical right foraminal & extraforaminal disc protrusion at L4-5.  3. L5-S1, mild right foraminal stenosis due to facet hypertrophy & asymmetrical disc bulging on the right.

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She was started with a Fentanyl patch then changed to Oxycontin but continued difficulty walking, standing, lifting. Flying to Boston to see her son would result in being bedridden for the week in Boston and after returning home. However, a few days prior to another trip to Boston, Namenda 5 mg profoundly helped back pain. She was no longer bedridden but was able to travel up and down the East coast and fly home with markedly improved function. Stretching, doing yoga. Walked briskly on beach with son for quite some time.

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On  8/31/09 , surgery for hyperparathyroidism removed two parathyroid glands on left side, biopsied on right.  Back pain “killing me” on left lumbar side postop, hospital 1-1/2” mattress caused flare. She was not back on Namenda 5 mg as it was too painful to swallow and expensive on her budget.

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Low dose naltrexone [LDN] was started 12/12/08, after stopping the Fentanyl patch 2 days previously. On January 2009, she reported: “My pain level dropped to about 2-3 at that time and was down to 1 by Dec. 15th. With the patch still in by bloodstream for those few days my pain level never really spiked.  There was a very even transition from the patch to the LDN. What I do know is that my pain level has remained at about a 1-2 for the past month, even with an increased stress level and much time spent on my feet. [She has had lifelong insomnia.] It hasn’t changed my sleep pattern at all.  I still take the Temazepam several times to help me sleep a little bit better. I’m very happy that the LDN has given me so much relief from the pain I’ve dealt with for over 5 years.”

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1/29/12, she emails, “Although my lower back pain is pretty well controlled, my right knee pain prohibits me from doing many things that I would like to do. However, I had a significant event last night.

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I awoke at 3AM with terrible stabbing pain going from my right knee to my right foot. I was in too much pain to deal with the Ketamine spray on a Q-tip, so I just used 3 sprays in each nostril, pinched my nostrils together, and tilted my head back slightly. The pain was completely gone in 30 seconds and I was able to go back to sleep immediately. 

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I used the 50mg/ml dose since I haven’t picked up the stronger spray yet. It was amazing! I’ve continued to use the nasal Ketamine today and it has helped considerably, though not as dramatically as it did at 3AM.

[P.T.] told me there’s nothing more he can do for me.  He said he’d be happy to help me with my re-hab after my knee replacement.  So now I guess I will just have to hope that [my rheumatologist] will be able to offer me some pain relief with hyaluronic acid injections until I can convince myself that a replacement is the only solution.

So the LDN and the Ketamine spray are my constant companions for now.

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 Right Upper Quadrant & Ribs After Laparoscopic Gall Bladder Surgery Better with LDN

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CR, 40 year old engineer with scoliosis who had been a triathlete. She first saw me on 6/6/05 for persistent, intense, right upper quadrant abdominal and rib pain that began immediately after laparoscopic gall bladder surgery on 11/17/04, associated with severe fatigue. Pain in the abdominal area was so acute after surgery that she couldn’t swim for four months. Pain impaired breathing and ability to stand erect. She became a long distance swimmer as she now could not do a flip in a pool, run, bike or take part in other sports. Severe pain was triggered even by slight jogging, jarring, vibrations forcing her to buy another car. Positions that relieved right rib pain, made scoliosis worse. Prednisone last year caused loss of memory for  > 1 month of work projects.

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Spasm along the right lower rib was so severe she once fell out of bed. A cardiologist and neurologist advised removing the lower ribs.

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Pain was constant mild to moderate at right lower ribs with muscle spasm at the right epigastric area,  intermittently severe stabbing, tender, penetrating, burning.  She describes the pain as a scorpioin tailed dragon that stabs with its scorpion tail and blows fire breath inside the ribs. Pain ranged from 1 to 7, average 4 to 5, and severely interferes with function including ability to concentrate, general activity, enjoyment of life, sleep, work, relations with others and moderately interferes with walking and mood. Each of the 2 times she started P.T., she heard a “pop” when the ribs were released; spreading the ribs relieves pain/spasm.  She tried acupuncture, yoga, Feldenkrais.

 ~

Exam: hyperalgesia over the tender T8 dermatome at the lower right ribs shading off toward T10; easily palpable tender trigger point at right epigastric area that radiates to the right anterior lateral iliac crest suggesting visceral ligamentous problems. Physical therapist noted a stiff band in the right upper quadrant but there are no ligaments in this area of the anatomy. She had temporary relief with adjustments, poor response with opioids and failed gabapentin. Intercostal blocks T8-T10 or T11 and right upper quadrant field blocks using Marcaine gave transient 50% relief. MRI and CT scans failed to disclose any etiology.

By 11/17/05, P.T. had freed several structures about the rib cage, but was not able to loosen the lower ribs that no longer flare out as the left side. P.T. has helped far more than nerve blocks (duration of nerve block effect 2 to 4 weeks if cortisone used, or 5 to 14 days if a field block after miserable numbness 48 hours). Pain is focal at the MCL inferior to the lower right rib, deep under the incisional scar triggered by crunches  (as with use of dishwasher, etc).  She is now able to swim butterfly, but not flip turns – flip turns are a crunch flexion. Right levator scapulae trigger point is flared with the same crunches and “feels related.”  She continues Feldenkrais but avoids flexion,no longer has difficulty breathing and since P.T. has been able to get the inspiration spirometer to the top. Inflammatory pain along the costochondral margins anterior and posterioly from T2 to T12 and below the right lower ribs fairly resolved with the topical ointment ketoprofen 20%, lidocaine 10%. She tried Bengay at the levitator scapulae but stopped Daypro due to burning mid sternum, uses aspirin with yogurt.

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New spine x-rays were reviewed at Boston Children’s Hospital compared with her most recent 10 year old spine MRI: The ribs are splinted upward where they should be down.  Scoliosis then measured 31 degrees at T1-6, and 28 degrees at T6-11 with the superior iliac crest 1 cm down.

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February 2009, she started low dose naltrexone [LDN] 1 mg:  For years, pain was 8 to 9, like I had swallowed a fire burning. After LDN it was gone in one hour, zero for 18 hours later returned but much lower 1.5 on scale of 10. Premenstrual pain also was there lower abdominal, prior 3 to 4, down to 1 while taking LDN. A morning swim in ocean usually takes a couple hours of swimming to warm up to get that endorphin high, since LDN now occurs in 20 min. Begins with complete feeling of ease and well being because you’re swimming in cold water, everything is cold and you’re tired, suddenly you’re not tired, its easy, nothing is terrrible anymore, all the frustration melts away. There are no long life threatening events, everything seems easier, you’re happier, and you love everyone. Everyone you see a that moment is beautiful and you love them.  The world is a little slower.  You always feel like you could swim [or run] forever, whereas before that point you feel you can go maybe 5 more minutes.

~
Since mid morning a little hyper – sometimes I am if I have lots of sugar or caffeine [had none], talking faster, less patient slightly –  entire family has ADD or ADHD. 
Slept really well  —- usually has light sleep, poor quality.
I got my desk cleared off for the first time in weeks.
Had sinus headache 1-2 weeks, the head was still unchanged after LDN.
Had night sweats > 10 years, at 4 am none last night, in fact the opposite.  

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Sleep improves for some while on LDN. It is a morphinan, i.e. morphine like. “I sleep well on LDN… the neuroma in my foot is not gone but hurts less, one of those items I’ve been ignoring because the rib/abdominal pain kept me from hiking enough to care.  So far that’s what I’ve got, for some reason the best dosing for me seems to be alternating 2mg and 3mg. I don’t know why that is. I still get a good endorphin rush pretty early into exercise, even walking which I can do again.  Last week I accidentally walked 6 miles, longest I’ve walked in years!  Next I want to try hiking once the snow is gone.

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A stingray stabbed her the top of her foot on 4-28-11. Lifeguards usually call EMT for morphine as the injury causes so much pain that people black out. There was profuse bleeding, estimated one cup of blood, and swelling the size of an egg. The entire foot was covered with blood as were the footsteps on the beach. Pain quickly increased to 7 on scale of 10 but never went above ankle, then pain dropped to a 3 before they were able to put her foot into hot water. She was laughing with the lifeguard while being treated.  Swelling was almost gone 4 days later. It was a little tender to pressure, the puncture was still visible. She did not wear a shoe to avoid pressure over the wound, and to keep the wound clean to avoid bacterial infection. People were asking why she was not walking with crutches – not remotely necessary.

~

She has scoliosis and wore braces for it as a child. “I’ve been using the SalonPas patches on my lower back, they give me a minor skin rash but work great. I suspect a combination of topicals and stretches will be the key.  For meds we’d have to be in the office with my records (allergic to tylenol and bad reactions to naproxen/Aleve though I may try it again some day).  Its more a question of what to do about the underlying cause -the spine- and avoiding the pain. I know having the pain isn’t good long term but its minor enough that I really didn’t feel it all this time because my front hurt more.  Peeling the onion!  While I was having a lot of rib pain I would get pulled forward and my lower back would go “out.” P.T. could help that by loosening the front and working the back.  Now it seems more complex to address.  I used to do lots of sit-ups and crunches to stabilize it but P.T. says no to those and my core is pretty stable.  I have been able to do yoga again (another LDN success) and I thought that helped in the past.  I’ll have to continue with that and see if it helps things in the long run….  I have to seek out the spine experts now that I can move more.  My ski turns are uneven, always have been becuase I turn easier to the left than the right (so I’ll turn one cheek more readily than the other).”

>

Vibrations from dolphins ease the pain for days. She has experienced more encounters with dolphins and whales since the surgery. One day when she was aware of squid in the water, she noticed what she thought was the world’s biggest squid swimming 10 feet below her, except that it was a gray whale, which soon surfaced and blew water. Her reasoning for why marine life are attracted to her: scar tissue built up around her surgical scar, which she says makes a squeaking sound in the water. “It might be similar to how they perceive pain and illness.They might be coming together to try to help.”

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Further information will be posted on these cases, and more cases will be added as time permits.
They will include persons who had years of intractable chronic pain that severely limited function, who are now pain free
on low dose naltrexone [LDN] and/or other medications.  Some with intractable chronic pain have now been pain free off LDN and all pain medications for three years.
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The material on this site is for informational purposes only,

and is not a substitute for medical advice,

diagnosis or treatment provided by a qualified health care provider.

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For My Home Page, click here: 

Welcome to my Weblog on Pain Management!

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Posted in Case Report, Chronic Fatigue, Complex Regional Pain Syndrome, Dextromethorphan, Fibromyalgia, Ketamine, Lamotrigine, Low Dose Naltrexone LDN, Naltrexone, Namenda, Spinal Stenosis, Transverse myelitis. Tags: , , , , , , , , , . 2 Comments »

RSD – CRPS – Complex Regional Pain Syndrome – Long Distance Patients

08/01/2010 — Nancy Sajben MD

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I see long distance patients in my office who generally come for a two week stay, and I wish to encourage their comments on this page. I am sorry I did not post this page for them sooner.

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Most people I see have been tried on every common approach to treatment for Complex Regional Pain Syndrome, CRPS. I prescribe most of those therapies as well, but I also use an expanded number of neuropharmacology approaches. Some of these are outlined in the case report I filed in March 2010. Patients have sent comments on their progress, and others have made comments on spinal cord stimulators, below.

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In my opinion, it is important to use rational polypharmacy. When pain is intense, it is important to look at more than one mechanism. Once pain comes under control and remains at zero, then we can slowly begin to taper off one at a time.

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The following describe two of the several mechanisms of interest to me.

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NMDA Antagonists

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The glutamate-NMDA receptor is profoundly important in controlling pain pathways. It is responsible for tolerance to medication and centralization of pain. Research in France has shown that with chronic pain in persons with CRPS there is an increase in NMDA receptors in the central nervous system. After pain control, the increased number of NMDA receptors returns to normal.

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With persistent pain or chronic depression, glutamate increases and becomes excitotoxic. When it attaches to the NMDA receptor, it causes calcium to enter the neuron, creates free radicals, and kills neurons. This leads to brain atrophy and potentially memory loss.

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The goal is to block this mechanism. I use three medications that work at this level.

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Morphinans – Glial dysregulation of pain pathways

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Another important area of focus for me are the morphinans which means morphine-like. Their mechanism of action is at the microglia, the immune cells in the central nervous system. There is important new research on glial dysregulation of pain pathways. Once primed and activated by pain, the next pain insult causes glia to react harder, faster and longer perpetuating pain with cascades of pro-inflammatory molecules. Glial research on pain is very recent, very new, very important, and is a rapidly growing  body of science. It offers an entirely new paradigm for treatment of chronic pain.

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The Reflex Sympathetic Dystrophy Syndrome Association library has

many research articles that you may wish to read.

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I am grateful to be invited to their workshop on activated glia.

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Oth

Contributing Factors

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I look at the whole person, review all of their medications including their vitamins and botanicals, toxicity and adverse interactions with medication. I check the blood level for 25(OH) vitamin D (done at ARUP labs), parathyroid hormone (PTH) if not already done, and stress the importance of anti-inflammatory diet, fish oil, and adequate levels of vitamin D3.

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Spinal cord stimulators – controversy

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A recent Wall Street Journal article discusses some of the controversy of interventional techniques in this evolving specialty and mentions that some studies are underway to show efficacy. Implantable devices are controversial “and questions remain about the appropriateness of their use.”

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In April 2010, new guidelines were published, updating earlier ones from 1997: Practice Guidelines for Chronic Pain Management: An Updated Report by the American Society of Anesthesiologists Task Force on Chronic Pain Management and the American Society of Regional Anesthesia and Pain Medicine.

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“Spinal cord stimulation: One randomized controlled trial reports effective pain relief for CRPS patients at follow-up assessment periods of 6 months to 2 yr when spinal cord stimulation in combination with physical therapy is compared with physical therapy alone (Category A3 evidence).”

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A3 evidence was defined as: “The literature contains a single randomized controlled trial.”

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The guidelines had no references, nor did it indicate how old that study was. A short two year followup and a single limited study after more than 32 years of implanting these devices should call for more research.

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I do not recommend spinal cord stimulators as there is no research showing long term efficacy and no quality evidence showing they are superior treatment. Success declines after placement and that may occur the first day. In fact, there is one long term 5 year European study showing no efficacy after two years. A surgical nurse offered her frightful surgical experiences in comments below. Any invasive procedure may trigger pain in a person with CRPS and removal of the device does not necessarily relieve pain.

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Often patients are not aware that alternatives exist and are not given fully informed consent on the stimulators. Those risks include increased pain with any invasive procedure in persons with CRPS, paralysis, spasticity, infection, scarring, potential flare into generalized CRPS pain. The fact that these leads may be permanent  – they can never be removed – means that person can never undergo MRI scans in future even if they should have cancer or stroke. The leads may become scarred into nerve tissue and tethered to the spinal cord.

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A colleague, a prominent Harvard trained anesthesia pain specialist in practice for 40 years, declines to recommend stimulators or pumps for that reason: there is no long term data proving efficacy.

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Complications of spinal cord stimulators should be published. Perhaps they exist. If anyone has seen them, please advise me. I tend to see the complications or the failures, but those who place them and the corporations that fund them should have a special obligation to study the complications and the long term benefits. Having a spinal cord stimulator does not prevent use of other medication but it may add to the burden of pain to overcome. Nationally there should be an audit of stimulators placed, with patient outcomes including complications and number of revisions made. The risks are too grave not to require this and the cost is too high if there is no lasting efficacy.

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The excerpt below is from a 2003 review on spinal cord stimulation (SCS) for Complex Regional Pain Syndrome. It may be outdated, however Medtronic failed to provide me with any long term studies when requested:

“The use of SCS for the treatment of pain in CRPS (including RSD and causalgia) has been reported in the literature for over 25 years. The consensus opinion from experts suggests that SCS should be considered in the treatment algorithm when conservative or traditional therapies have failed. However, such considerations are not based on reliable evidence generated through well-designed randomized controlled trials. To date, there has not been a systemic evaluation of the existing literature concerning the efficacy of SCS for patients with CRPS.”

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For those wishing to come to San Diego for two week stay, please see information on long distance patients in banner at top of page.

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~~~~~The material on this site is for informational purposes only, and is

not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. ~~~~~

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Posted in Case Report, Chronic Pain, CRPS, Glia, Spinal Cord Stimulator, Spinal cord stimulators. Tags: , , , . 8 Comments »

RSD – Complex Regional Pain Syndrome – A Case Report

03/03/2010 — Nancy Sajben MD

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Rational Polypharmacy

Naltrexone is a remarkable drug for intractable pain

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I first saw this RN in June 2006.

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She is now 60 years old.  She was an OR scrub nurse for almost 30 years, but was disabled for the last 5 years before seeing me. She had Reflex Sympathetic Dystrophy [RSD] of both legs with “arthritis” of the feet/ankle that felt like she was “90 years old” with cold allodynia. Allodynia is pain from a stimulus such as light touch or a breath or air that is not normally painful. Imagine a light touch that feels like severe nerve pain, one of the most disturbing pains a person could have. The temperature of her feet was 81 degrees, hands 92 degrees.

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Pain of both feet felt like a vise grip, gnawing, penetrating, “like broken bones in the feet,” variable at different times but always worse as the day progressed, with a crushing sensation that penetrated through foot and ankle. She was unable to tolerate socks or anything on her feet after 5 pm, unable even to tolerate air on the area, unable to tolerate coolness below waist, but felt hot above waist. She wore a blanket and covers on the hottest 120 degree days, and forced herself to tolerate touch at the legs in order to desensitize them, as we instruct patients to do. She felt constant tingling numbness of the soles of feet for 3 years, with weakness, stiffness “almost solid” like a block. Spasm in soles of feet had resolved the last 6 months before seeing me.

Pain ranged from 2 to 9 on a scale of 10, where 10 is the worst pain imaginable, worst after 5 pm. Average pain was 3. It interfered with sleep at times, and she used a tented frame to keep blankets off her feet, preheated the bed to avoid any coolness, and avoided cold under all circumstances. In the morning, the joints felt like she had a broken ankle. She would massage the feet with lotion, put on alpaca socks, and slowly begin to walk. Then tried to mobilize the joints. Walking made pain worse though walking had always been a favorite activity.~

Before seeing me she had had more than 10 sympathetic blocks, was hospitalized 11 days due to headache from prednisone 60 mg that had been trialed to relieve her pain. She had been prescribed Procardia to relieve the “vascular” disease that she did not have but the drug led to gangrene of the gall bladder; she had been prescribed almost every “adjuvant” used to relieve pain and as much as 9 grams of Neurontin daily, all of this to attempt to relieve the severe pain in her legs and feet.

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This is how she got better

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When I first saw her in 2006, I prescribed low dose oral ketamine that gave relief lasting up to 3 hours from each dose. She then requested referral to Dr. Schwartzman, chief of neurology at Drexel University in Philadelphia, for continuous 5 day ketamine infusion that was done May 2007. She was pain free but it completely lost effect after 8 months, despite booster infusions every 4 to 6 weeks for 4 hours daily over 2 days during those 8 months. After insurance the cost out of pocket was $45,000 in 2007 alone. Dr. Schwartzman had nothing more to offer after it failed and said most patients have relief for less than 6 months if at all.

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In March 2007, I started her on a combination of Namenda 55 mg daily with lamotrigine 350 mg daily that relieved 90% of the pain, but once every 6 to 8 weeks she needed 12.5 to 25 mg low dose oral ketamine for breakthrough pain. Even more rarely, she used oxycodone 10 to 20 mg.

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In October 2008, adding naltrexone 1 mg by mouth, she became pain free. Since then she has not needed anything for breakthrough pain and on 3/5/09, she reported that her last use of ketamine and oxycodone occurred with the addition of low dose naltrexone.

 

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In 2009, she hiked 30 miles down the Grand Canyon and back up in 3 days.

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Naltrexone was later increased to 4.5 mg as she completely tapered off lamotrigine.

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By December 2009, the RSD was 98% better and she reported that it was not pain anymore. Medications then were naltrexone 12.5 mg at bedtime and Namenda 55 mg daily in divided doses. She had just a “remnant” of a little buzz, but no crushing except when active, late in the day.

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A few months later she slowly tapered off Namenda with no increase in pain; and in October 2010, on my advice she tapered naltrexone 12.5 mg from daily to every third day. There has been no increase in pain but she is reluctant to discontinue naltrexone for fear that RSD may recur.

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She hikes 2 miles 3 to 4 times a week, does Iron Mountain once a week, does “Silver Sneekers” exercise 1 hour 3 times a week and sleeps well 8 to 10 hours a night without a sleeping pill.

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She remains on low dose naltrexone as her sole medication for this

previously disabling neuropathic pain syndrome~

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She has returned to part time work and spends a few weeks a month traveling the world, hiking, volunteering, sightseeing.

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Research funding is needed to view whether we can detect

activated glia in the spinal cord, as discussed here.

If there are no signs of activated glia, she may feel reassured that the condition has resolved.

Naltrexone is an immune modulator.

The site of action of naltrexone is at the Toll-like receptor (TLR4) attached to the cell surface membrane of glia.

The ability to view activated glia would help greatly in treatment of so many conditions including neuropathic pain.

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Naltrexone

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I have found that naltrexone is a remarkable medication for various pain conditions, and going through the steps of rational polypharmacy may be very rewarding for some patients though at times it may work all on its own. It has caused me to completely reassess how I approach the treatment of intractable pain – not just RSD or CRPS but arthritis, sciatica and various forms of mechanical pain. And it has led to further changes in the timing and dosing of naltrexone based upon the experiences patients have reported back to me over the years. It is hoped that further research will lead to better understanding of how naltrexone acts upon pain pathways. Surprisingly we already know quite a fair amount.

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My deepest gratitude to Dr. Jau-Shyong Hong, Chief of Neuropharmacology at NIH, whose many generous discussions, emails and research publications have helped me to understand it’s profound anti-inflammatory effect in the central nervous system through its actions on microglia. I previously posted a discussion of mechanisms of naltrexone and dextromethorphan in greater detail here. Naltrexone and dextromethorphan are classified as morphinans, morphine-like. They suppress Superoxide, a free radical that destroys neurons which may cause or contribute to Alzheimers and Parkinsons Disease. That research goes back to the late 1980’s and continues to grow. Phase II studies with morphinans are now being done on those conditions. Studies are also going on now with naltrexone/Wellbutrin combination for weight loss. The drug is called Contrave, from Orexigen Therapeutics Inc. and the dose I believe is 32 mg naltrexone – I do not know how they decided upon that dosage.

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In my experience, naltrexone is a very benign drug at these low doses, though colleagues who prescribe 400 mg for the FDA approved use at that high dose may see some liver toxicity. I always begin at 1 mg or 4.5 mg, depending upon whether or not the patient is a slow drug metabolizer, i.e. may lack one of the CYP P450 chromosomes for metabolizing drugs. I have long suspected it also has an effect on the hypothalamus because a few patients with profound postmenopausal hot flashes have reported that is no longer a problem and that their husbands simply cannot believe the bonus, and this may explain the effect upon appetite that Orexigen has found. At higher doses than I generally use there may be some constipation which is treatable. It may cause vivid dreaming in some, and a small percentage may have insomnia for a few days. Pharmacology and safety is discussed here.

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Stay tuned. I’ll be adding more case reports of different pain conditions in the near future. They are truly fascinating. It has changed my entire approach to treating pain.

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Cost

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Wouldn’t it be nice if NIH funded more for pain research? Imagine how much money that would save the country and save the lives of each person with disability who could recover? As I posted here, the American Pain Society has shown that NIH spends 0.67% of its budget on pain research – less than 1% – though 10 to 20% of the population in the US suffers from chronic pain, an estimated 60 million Americans, and pain conditions are more prevalent among the elderly.

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I am told by my pharmacist that perhaps 70% of the time insurance will approve coverage for compounded low dose naltrexone. It is very affordable but some insurance carriers deny payment for naltrexone. Medicare will not pay for compounded medication either. Compare this low cost compound to the wholesale price for 100 tablets of Oxycontin, $1300, which may not be relieving pain – then multiple that by 2 or 3 each month for one patient. Imagine if the $22 billion of federal money for health insurance technology, for software which is untested and will expire in a few years, instead went into NIH funding for pain research. What a lovely thought.

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The material on this site is for informational purposes only, and

is not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider.

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For My Home Page, click here:  Welcome to my Weblog on Pain Management!

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Posted in Case Report, Complex Regional Pain Syndrome, CRPS, Ketamine, Low Dose Naltrexone LDN, Naltrexone, Namenda, Neuropathy, RSD, Weight Loss. Tags: , , , , , , , , , , , , , , , . 25 Comments »