Scrambler Therapy Helped My Daughter Walk Again

By Reggie Greening, Guest Columnist

Beginning in August 2017, my daughter Amanda began having severe pain in her left foot after spraining her ankle. She was 20 years old at the time and described the pain as feeling as though her bones were being crushed by a red-hot anvil.

Over the next few months, Amanda started having more and more symptoms. It began with sharp pain, then discoloration, and severe swelling set in. This was about the time when she stopped being able to walk and had to be put on opioid medication in an attempt to manage the pain.

The bone crushing sensation began around the end of September, followed closely by burning pain. Amanda was still unable to walk and was taking opioids every four to six hours like clockwork. No one could figure out what was wrong or how to manage the pain other than with opioids.

While attempting to get a diagnosis, Amanda went through many rounds of testing. She had multiple x-rays, two MRIs (one with contrast dye injected intravenously), a three-phase bone scan, a nerve conductivity test, and two phases of bloodwork examined. She also went to a plethora of doctors, including a podiatrist, orthopedist, rheumatologist, dermatologist, physical therapists, homeopathic physician, chiropractor, pain management doctor, and a general medicine doctor.

The podiatrist and one of her physical therapists suspected Complex Regional Pain Syndrome (CRPS), and her podiatrist was the one who eventually determined the diagnosis of CRPS on February 16, 2018.

This spurred my research to find a more sustainable treatment option for Amanda. I spent hours searching online before discovering Scrambler Therapy.

I found a physician in New Jersey who posted videos on YouTube about Scrambler Therapy (also known as Calmare Pain Relief Therapy) and its benefits for those suffering with CRPS and other chronic nerve conditions.

We live in Louisiana, so I looked for a doctor who had a Scrambler Therapy machine closer to our home state. I eventually found a doctor in Dallas who has a machine in his office.

Amanda’s first round of treatment was administered by an osteopathic doctor in March 2018. After the fourth consecutive day of treatment, she was able to walk with the aid of crutches for the first time in seven months. The next day, after her fifth treatment, Amanda was able to walk independently. By the end of her initial round of treatment, she was entirely off opioids and NSAID pain relievers.

Our local TV station did a story about Amanda’s recovery.

Right now, the Scrambler treatment is not covered by insurance and payment for it adds up rather quickly. I am trying to get this therapy more widely acknowledged and known about so that it may become an option for others suffering with chronic neuropathic pain.

I have seen the benefits of Scrambler Therapy firsthand in my daughter. At the time of this writing, Amanda has been off opioids for two months and has been able to maintain the benefits of the initial treatment through booster treatments as needed.

Scrambler Therapy has the potential to help not just those suffering from CRPS (for whom pain relief often seems distant and hopeless), but also for those suffering from other neuropathic pain conditions.

The Greening family lives in Shreveport, Louisiana.

Pain News Network invites other readers to share their stories with us. Send them to editor@painnewsnetwork.org.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Bad Posture During Computer Use Leads to Back Pain

By Pat Anson, PNN Editor

It's no secret that staring into a computer screen for too long can lead to a stiff neck or back pain. Many of us instinctively lean forward to get a closer look at laptop or tablet, without being fully aware of how bad our posture is or what it’s doing to our spines.

Researchers at San Francisco State University say this “head-forward position” compresses the neck and can lead to fatigue, headaches, poor concentration and muscle tension. And it takes less than a minute for the symptoms to start.

"When your posture is tall and erect, the muscles of your back can easily support the weight of your head and neck -- as much as 12 pounds," says Erik Peper, PhD, a Professor of Holistic Health at San Francisco State University.

"But when your head juts forward at a 45-degree angle, your neck acts like a fulcrum, like a long lever lifting a heavy object. Now the muscle weight of your head and neck is the equivalent of about 45 pounds. It is not surprising people get stiff necks and shoulder and back pain."

Peper and his colleagues tested the effects of head and neck position in a recent study published in the journal Biofeedback.

SAN FRANCISCO STATE UNIVERSITY

First, they asked 87 students to sit upright with their heads properly aligned on their necks and asked them to turn their heads. Then the students were asked to "scrunch" their necks and jut their heads forward. Ninety-two percent reported being able to turn their heads much farther when they were not scrunching.

In a second test, 125 students scrunched their necks for 30 seconds. Afterwards, 98 percent reported some level of pain in their head, neck or eyes.

“Most participants were totally surprised that 30 seconds of neck scrunching would rapidly increase symptoms and induce discomfort. It provided motivation to identify situations that evoked neck scrunching and avoid those situations or change the ergonomics,” Peper said.  

What can you do to prevent yourself from scrunching? Two easy solutions would be to increase the font size on your computer screen or get a pair of computer reading glasses. You can also make sure your computer screen is at eye level, which will reduce the temptation to lean forward.

If you suffer from headaches or neck and backaches from computer work, check your posture and make sure you are sitting upright, with your head aligned on top of your neck.

"You can do something about this poor posture very quickly," says Peper, who recommends people test themselves by scrunching forward and try rotating their head. Until they do that, many have no idea how bad posture contributes to back and neck pain.

"You can exaggerate the position and experience the symptoms. Then when you find yourself doing it, you can become aware and stop," he said.

A recent study by researchers at the University of Nevada Las Vegas found that 60 percent of students have persistent pain in their neck and shoulders -- often caused by slouching or bending to watch their iPads or tablets. Women were twice as likely as men to experience neck and shoulder pain during tablet use.

Nerve Stimulator Approved for Cluster Headache

By Pat Anson, PNN Editor

A neuromodulation device that stimulates a key nerve in the neck has been cleared by the U.S. Food and Drug Administration as a treatment for the prevention of cluster headache.

The handheld device – called gammaCore – is the first and only product cleared by the FDA for the prevention of cluster headache. It has already been cleared for the relief of pain caused by cluster headaches and migraines.

Cluster headaches are a series of short but extremely painful headaches that can occur every day for weeks and months at a time. They strike suddenly and subside quickly, but are so severe they’ve been called “suicide headaches.” Men are more likely to get cluster headaches than women. The cause is unknown and there is no cure. Recommended treatments for cluster headaches are limited to oxygen and triptan. 

“The FDA clearance of gammaCore for adjunctive use for the preventive treatment of cluster headache has the potential to help the approximately 350,000 Americans impacted by this debilitating condition often referred to as a ‘suicide headache,’” said Frank Amato, CEO of electroCore, the maker of gammaCore.

“We are pleased that cluster headache patients now have a FDA-cleared option, and one that is both safe and effective, especially given the difficulty in treating cluster headache and the limitations of current treatments.”

gammaCore is available by prescription only but can be self-administered by patients. It sends a mild electric charge to the vagus nerve in the neck, which stimulates the nerve while reducing pain. It’s recommended that the gammaCore be used twice daily to prevent cluster headache and reduce its severity.

ELECTROCORE IMAGE

The $600 device also has regulatory approval for the treatment of cluster headache, migraine and medication overuse headache in the European Union, South Africa, India, New Zealand, Australia, Colombia, Brazil, Malaysia, and Canada. 

Potential Treatment for Lupus

The vagus nerve is the longest cranial nerve in the body, running from the base of the brain through the neck, heart, lungs and abdomen. In addition to cluster headache, scientists think vagus nerve stimulation (VNS) could be useful in treating a variety of chronic pain conditions.

FEINSTEIN INSTITUTE FOR MEDICAL RESEARCH

In a small pilot study at the Feinstein Institute for Medical Research, researchers found that VNS significantly reduced pain and fatigue associated with lupus, an autoimmune disease that damages joints, skin and internal organs. Musculoskeletal pain is one of the most common lupus symptoms, affecting up to 95 percent of patients.

Feinstein researchers used an experimental device to stimulate the vagus nerve through the ear. Lupus patients who were treated with the device for five minutes daily had a significant decrease in pain and fatigue after just five days.

“Previous studies at the Feinstein Institute have found that under certain conditions, stimulating the vagus nerve can reduce inflammation,” Timir Datta-Chaudhuri, PhD, wrote in an email to PNN.

“With inflammation being a factor in many conditions, the vagus nerve could be used as a therapeutic target for conditions beyond lupus, and potentially for pain, when inflammation is a contributing factor. In fact, this discovery has been used in the past to develop bioelectronic devices which have been tested in clinical trials in Europe and shown to be effective in reducing the joint pain and inflammation in rheumatoid arthritis.”

Datta said there are plans to continue testing the device in clinical trials. If the results are positive, the Feinstein Institute would seek to partner with other labs and companies to create a device for wider use.

Can Hypnosis Help Relieve Chronic Pain?

By Pat Anson, PNN Editor

Two new studies suggest that hypnotherapy can relieve pain for some patients with irritable bowel syndrome (IBS), complex regional pain syndrome (CRPS) and other chronic pain conditions.

The first study, published in The Lancet medical journal, involved nearly 500 IBS patients who were recruited from 11 hospitals in the Netherlands. IBS is a common condition characterized by repeated attacks of stomach pain, cramps, diarrhea and constipation.

Study participants were randomly assigned to one of three groups: individual hypnotherapy, group hypnotherapy, or support sessions that included dietary advice and education about IBS.  The hypnotherapy sessions were designed to reduce pain and discomfort from IBS.

After three months, 41% of the people in individual hypnotherapy and 33% of those in group hypnotherapy reported adequate relief, compared to less than 17% of those in education and support sessions.   

The results from group hypnotherapy were even better after 9 months. Nearly half the patients in that group reported relief from IBS symptoms.

“The trial finding that hypnotherapy works better than educational support adds evidence to previous studies showing that hypnotherapy may have a helpful effect,” the UK’s National Health Service said in a review of the Dutch study. “The finding that group hypnotherapy works about as well as individual hypnotherapy is interesting, as this means many people could be treated by the same therapist at the same time, which could reduce waiting times and the cost of treatment.

“It also demonstrates that unfortunately, even with the best care, IBS can still be a difficult condition to treat. Half or more people receiving hypnotherapy still gained no symptom relief.”

Hypnosis and CRPS

Another hypnosis study, recently reported by Japanese researchers at the World Congress of Pain, involved 121 patients with refractory chronic pain – also known as intractable pain – who agreed to hypnotherapy either biweekly or in monthly 60 minute sessions. The patients all had chronic conditions that were difficult to treat, such as CRPS, phantom limb pain, neuropathic pain and cancer pain.

Researchers found that 71% of the patients reported pain relief during the hypnosis sessions. And for many of them, the analgesic effect continued after the session ended.

“These patients have all undergone multidisciplinary pain treatment, including medication, physiotherapy and CBT (cognitive behavioral therapy),” Miyuki Mizutani, PhD, a clinical psychologist at Aichi Medical University, told Pain Medicine News. “And ultimately, they did not respond completely to those treatments. So we believe the untreatable part of the pain can be treated by hypnosis.”

Hypnotherapy even works for patients with CRPS, although they often require more hypnosis sessions before having an analgesic effect.

“I’ve now been performing hypnosis for 18 years, and have found it very effective in those patients, though it can be difficult to administer in chronic pain,” Mizutani said. “It takes time, and complete remission is not very common. However, our experience is that repeated analgesic experiences can lead to long-term improvements in chronic pain.”

Puppy Medicine

By Jennifer Hochgesang, Guest Columnist  

I was miserable. My trigeminal neuralgia pain from multiple sclerosis was still uncontrolled, leaving me mostly housebound. I had also just been diagnosed with vestibular migraines, which cause vertigo. Sometimes the vertigo was so extreme I was unable to walk, the world moving like a drunken carnival ride that never stopped even when my eyes were closed.  

And while the trigeminal neuralgia (TN) was on the right side of my mouth, I had just gotten ulcers out of nowhere on the left side. Anytime I drank something I felt a blind searing pain that took minutes to subside.

I was just barely pushing through, not sure how much more I could take. But I had an appointment to see a puppy at a nearby animal shelter.

I have had dogs all my life. Each one has been a part of the family and amazing creatures: loving, smart, playful and giving. My last dog, Aequoris, passed away two years ago and her sister Zola a little before that. I needed time before getting another dog. But as I went through this year in the worst pain of my life, I started to slowly think about getting a dog again.

But I had many questions to ask myself: Was I well enough to care for a dog? Could I afford a vet? Would the dog get enough exercise? Did I have help for the times I was too sick to care for it? Were there walking services in my area or boarding services if I had to go to the hospital? Would pet insurance cover those situations? Would my family members want a dog and be willing to help?

Even as I answered all those questions on the way to the shelter, I almost cancelled. I just felt so physically awful and it was hard to think of enjoying a puppy.   

When we got there, they put us in a small room so we could meet the puppy and get to know her a little. She was an 11-week old rescue from a litter of five. They said she was a Spaniel mix, but really they had no idea what breed she was.

When they brought her in, my first thought was that she was pretty funny looking. Then she actually ran up to me and kissed me right on the left side of my mouth, the one that doesn’t have my TN. It was like she knew! I couldn’t believe it!

I held her and smelled that sweet puppy smell. She wasn’t funny looking after all. She was beautiful. She had dots of brown over her eyes, silky black fur down her back, and fawn-like legs with spots everywhere.

We played and I fell in love within seconds. I watched her play, moving like a little infant excited with the world. I laughed as she tried to catch a ball and fell, and was so moved when she came to me for comfort.

Suddenly I realized I wasn’t in as much pain! Holding her, rubbing her soft fur and watching her jump around just did something for me – like it was medicinal. She was helping me. I knew at that moment she would bring that gift to me and in return I would do whatever I could to make sure she was cared for: vet visits, exercise, training and love. I named her Sasha: helper of womankind.

Sasha is now almost six months old. She is crazy smart and learned sit, down, and up in the air the first day. I have also started working with a trainer so she doesn’t touch the right side of my face and set off a TN attack.

I can have Sasha off leash in the backyard and throw the ball for her to catch with my 7-year-old daughter, who thankfully runs like crazy with her.

But she still rings the bell to go outside seven times an hour and tries to eat my socks no matter how many times I say no. She grabs tissues and runs so fast, dodging furniture and ducking under and over until you want to pull your hair out.

But then you leave the room for one second and come back to find her butt wiggling, tail thumping on the floor, and plaintively whinnying, “I’m so happy to see you. I missed you so much.”

Sasha has the sweetest face and when she lays next to you with her head curled in your lap letting you pet her, looking up at you -- it’s just pure love.

Is it a coincidence that in the past five weeks I’ve finally found the food triggers for my trigeminal neuralgia? I’ve stopped eating dairy, citrus, chocolate, caffeine and sugar. My pain has gone down so much. It’s like night and day since I got Sasha. I still need to work with a nutritionist to make sure I’m eating the right foods, but for now this is working for me.

Sasha is still a baby so I haven’t expected her to do much more than be a cute furball. But one day while I was working on my iPad, she came and positioned herself right in my lap. I had to move her over a little so I could work. She still stuck like glue to the left side of my body with her head on my leg or arm throughout the day. I thought she was just tired.

Then slowly my TN pain began to increase, until I had a really awful volley of attacks every few minutes. Sasha moved closer and closer to my face as the pain got worse. During one brutal attack she kissed me on the left side and I was so thankful. She actually understood I was in pain and where it was. She knew when it was getting worse. And all she wanted was to heal and comfort me.  

As I write this, Sasha is sitting right here next to me chewing on a rawhide pretzel. She brought seven toys up on the couch in case she gets bored with the pretzel and wants me to throw something. I take a break from writing to pet her and sometimes she will turn over and give me her belly to rub. Soon she’s going to get up and ring that bell to go outside in the light snow.

She is just the most beautiful thing.

Jennifer Hochgesang lives in Illinois. Jennifer has multiple sclerosis, trigeminal neuralgia and vestibular migraines.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

12 Gifts of Knowledge About Chronic Pain

By Pat Anson, PNN Editor

Are you looking for a special gift for a loved one over the holidays? How about a gift to yourself? If you live with chronic pain -- or want to have a friend or family member have a better understanding of what you're going through -- here are 12 books that would make great gifts.

These and other books can be found in PNN’s Suggested Reading section. I recently added new books on kratom, stem cell therapy and medical cannabis, along with books on the history of pain and the opioid crisis.

There’s even a book that might make you laugh out loud. Who knew chronic pain could be funny?

Click on the book's cover to see price and ordering information. Pain News Network receives a small amount of the proceeds -- at no additional cost to you -- for orders placed through Amazon.

Backbone: Living With Chronic Pain Without Turning Into One by Karen Duffy

If you believe laughter is the best medicine, then “Backbone” is for you. In this funny and inspirational book, Karen Duffy recounts her struggles with chronic pain from sarcoidosis and how she learned to cope with it through perseverance and spunk. Duffy also offers tips to healthy people on how to be supportive to loved ones who live with chronic pain.

The Kratom Cure: Potent Plant for Pain, Anxiety, Addiction by Joanne Hillyer

In this beginner’s guide to kratom, Joanne Hillyer examines both the benefits and drawbacks of kratom and how it’s been used for centuries in southeast Asia as a natural stimulant and pain reliever. Hillyer also explores the various strains of kratom, where to get them, and the growing controversy over its use. Is kratom a dangerous narcotic that should be banned or a helpful and healing herb?

Real Food Heals by Seamus Mullen

“Iron Chef” star Seamus Mullen thought his career as a chef was over when he developed chronic joint pain and was diagnosed with rheumatoid arthritis. Mullen restored his health by changing his diet — and now avoids foods that are processed or inflammatory. In this cookbook, the celebrity chef shares his recipes for healthy eating with natural ingredients.

The Story of Pain: From Prayers to Painkillers by Joanna Burke

This book examines the history of pain since the 18th century, when many people believed that pain was a message from God and submission to pain was seen as redemptive. Today, pain is seen more as an evil that needs to be fought with painkillers and other therapies. Joanna Burke says knowing the history of pain can help us understand our own suffering and that of those around us.

Living Pain Free: Healing Chronic Pain with Myofascial Release by Amanda Oswald

Myofascial release expert Amanda Oswald explains how fascia — the main connective tissue in the body — is the key to restoring pain-free health and motion. She explains how stretches, exercises and other self-care techniques can relieve migraines, headaches, jaw pain, frozen shoulder, neck and back pain, pelvic pain and conditions such as fibromyalgia.

Heal Me: In Search of a Cure by Julia Buckley

Travel writer Julia Buckley went a a global quest to find an alternative treatment for Ehlers-Danlos syndrome. Buckley underwent a voodoo exorcism in Haiti, was doused with chicken blood in South Africa, and met a California masseur who believes he is guided by angels. Buckley says the best advice came from a Brazilian faith healer who taught her how meditation can help relieve pain.

American Overdose by Chris McGreal

Chris McGreal traces the history of the opioid crisis in the United States — starting with Purdue Pharma and OxyContin — and how it spread from Appalachia to the rest of the country. Purdue is not the only bad actor in the opioid crisis, as McGreal is also critical of the healthcare industry, law enforcement, politicians and regulators who adopted opioid policies based on greed, ignorance and political agendas.

The Medicalization of Marijuana by Michelle Newhart and William Dolphin

This book explores changing public attitudes about marijuana and its transformation from a stigmatized illegal drug to a promising new medical treatment. Individual stories capture how patients are using cannabis to treat chronic pain and other medical conditions, and how doctors are slowly accepting it as a form of medicine.

Stem Cells: The Healing Revolution by Dr. Raj Banerjee

This book answers some of the most basic questions about stem cell therapy and regenerative medicine. Dr. Raj Banerjee, who founded a clinic in St. Louis nearly two decades ago, shares the testimonials of his patients while exploring the history, challenges and benefits of stem cell therapy and how it can be used to treat a wide range of chronic pain conditions, including arthritis and degenerative disc disease.

Dopesick by Beth Macy

Journalist Beth Macy looks at the opioid crisis from multiple perspectives, including physicians and pharmacists, law enforcement and attorneys, community leaders and drug dealers. Macy examines opioid addiction with compassion and concern, but perpetuates many media-driven myths about pain patients and prescription opioids.

Unlearn Your Pain by Dr. Howard Schubiner

This is the third edition of Dr. Howard Schubiner’s book on the “Mind Body Syndrome” — the theory that many chronic pain conditions are the result of unresolved stress and emotional issues. Schubiner explains how to rid yourself of pain without drugs, surgery or psychotherapy by “unlearning” your pain.

The Furnace of Fire by Elaine Ballard

Elaine Ballard suffered a severe back injury when she was 22 years old. Fifty years later, she is confined mostly to bed and recently learned she has arachnoiditis. Ballard wrote this book to help educate other pain sufferers about arachnoiditis and to share how her Christian faith helped her through many difficult times and pain flares.

If there is a book or publication that's helped you manage chronic pain and might help others, let us know.

Faulty Medical Devices Blamed for Thousands of Deaths

By Pat Anson, PNN Editor

The U.S. Food and Drug Administration said today it would take steps to modernize and improve its oversight of medical devices in the wake of a scathing new report that found faulty devices were responsible for over 83,000 deaths and 1.7 million injuries worldwide in the last decade.

The “Implant Files” project, a year-long joint investigation by the International Consortium of Investigative Journalists (ICIJ) and over 50 media partners, found that the FDA approved many devices with little clinical testing and rarely pulled them off the market when problems arose.

Spinal cord stimulators have some of the worst safety records among the 4,000 devices tracked by the FDA, the ICIJ found. Stimulators are implanted near the spine and send electric currents to block pain signals from reaching the brain. The devices are often touted as safer alternatives to opioid pain medication and about 60,000 are now implanted annually.

But a review of FDA data found over 500 deaths and 80,000 injuries involving stimulators since 2008. Patients reported being shocked or burned by the devices and many had them removed.  

“I thought I would have a wonderful life,” a disabled 45-year old South Carolina man told the Associated Press. “But look at me.”

Jim Taft’s doctor told him a spinal cord stimulator would cloak the chronic pain in his severely injured right arm and make him “good as new.” But a wire in the device broke and after an operation to repair it, Taft said it shocked him so many times he had trouble sleeping and fell down a flight of stairs. The stimulator was removed within a year of being implanted and Taft is now bedridden.  

“This is my death sentence,” Taft said from his bed. “I’ll die here.”

Outdated FDA Review Process

Artificial hips, pain pumps, spinal disc replacements and hundreds of other devices were also found to be faulty, raising concern about the level of scrutiny they received before going on the market.   

“In contrast to drugs, many surgical innovations are introduced without clinical trial data or centrally held evidence,” Professor Derek Alderson, president of the Royal College of Surgeon, told The Guardian.  “This is a risk to patient safety and public confidence.”

FDA commissioner Scott Gottlieb, MD, said his agency would modernize its “outdated” 40-year old review process for medical devices.

“The new technology that we’re seeing holds tremendous public health promise for patients. But with the advances also come new complexities that can make the review of safety and effectiveness more challenging,” Gottlieb said in a statement.

“Advances in material science, digital health, 3D printing and other technologies continue to drive an unparalleled period of invention in medical devices. It’s vital that the FDA’s regulatory approach continue to evolve and modernize to safely and efficiently advance these opportunities. Not only must we keep pace with this complexity and innovation, but we must also stay ahead of the new and evolving risks that sometimes accompany this progress.”

Gottlieb said about 20% of medical devices are based on technology that is more than 10 years old. He said the FDA would consider releasing a list of those devices in order to stimulate the use of newer technologies.

“To be clear, we don’t believe devices that rely on old predicates are unsafe, or that older devices need to be removed from the market. However, we believe that encouraging product developers to use more modern predicates would give patients and their doctors a choice among older and newer versions of a type of device,” Gottlieb said.

Do you have a medical device and want to check its safety record? The ICIJ has a database of over 70,000 recalls, safety alerts and safety notices in 11 countries. You can search by the device name or manufacturer by clicking here.

FDA Warns About Unapproved Drugs in Pain Pumps

By Pat Anson, PNN Editor

The U.S. Food and Drug Administration is warning patients and healthcare providers about serious complications that can occur when using medications not approved for use with intrathecal pain pumps. The agency says it has received “numerous reports” of pump failures, dosing errors, infections and other safety issues.

Pain pumps are implanted under the skin, usually near the abdomen, and deliver medication through a catheter directly into spinal fluid to treat chronic pain. They require a healthcare provider to periodically refill the pump with pain medication. The pumps are generally used as a last resort for patients whose pain is not adequately managed by oral medication, surgery and other treatments.

Currently, there are only two FDA-approved medications for intrathecal pain pumps; Infumorph (a morphine sulfate solution) and Prialt (a sterile solution).

Drugs approved for intrathecal administration must meet additional safety standards because the spinal cord and brain tissue are highly sensitive to preservatives or infectious organisms such as bacteria or viruses.

The FDA has found that some patients are being treated with medications that are not approved for pain pumps – including hydromorphone, bupivacaine, fentanyl and clonidine – as well as compounded medications.

One reason patients may not be using Infumorph is that it is currently listed on the FDA’s drug shortage list. Some patients may also believe the unapproved drugs are more effective, although the FDA says they are still too risky.  

“While medical devices, such as implanted pumps that deliver medication directly into the spinal fluid, have the potential to play an important role in treating pain, their use must be judicious and their instructions for use must be carefully followed. This is especially true when it comes to implantable pumps that deliver analgesic medicine directly into the nervous system,” FDA Commissioner Scott Gottlieb, MD, said in a statement.

The FDA says the failure rate of the pumps more than doubles when unapproved medications are used. Some drugs may contain preservatives that can damage the pump tubing or cause corrosion. Dosing errors can also occur because the software on pain pumps is only designed to calibrate doses with approved medications.

“FDA acknowledges that some patients being treated for pain may not be adequately managed by medicines approved for use with these pumps; however, the use of medicines not approved with the implanted pumps are associated with additional risks,” the agency said. “The FDA recommends that health care providers review the implanted pump labeling to identify the medicines and medicine concentrations approved for use with the specific pump.”

Patients and providers who experience an adverse event with an implanted pump or suspect one is having problems are encouraged to file a voluntary report through MedWatch, the FDA Safety Information and Adverse Event Reporting program.

A Painkilling Brew for Whatever ‘Ales’ You

By Steve Weakley

When anesthesiologist Admir Hadzic, MD, isn’t putting patients to sleep he’s putting them in a better mood with his Dr. Blues Belgian Brews.

Hadzic brews a potent dark beer called “PainKiller” that has 10% alcohol content, an award-winning blonde ale named “NerveBlock” that will make you comfortably numb, and a pilsner IPA called “SuperPills” that’ll make you hoppy.

References to the medicinal benefits of beer date back to the ninth century. For a short period during Prohibition, doctors even prescribed “medical beer” for patients who could no longer buy their brew legally without a prescription.

Dr. Hadzic, who was born in Yugoslavia and is a naturalized U.S. citizen, came up with the idea for medically themed malts when he married a Belgian anesthesiologist and moved to her country.

Belgium is the largest beer exporting country in Europe and Hadzic quickly fell in love with its chief export. He partnered with two local brewers to produce his own line of specialty beers.

In addition to being a practicing anesthesiologist, Hadzic is a blues bassist and has his own band, the “Big Apple Blues.” His beers actually ferment to the recorded sounds of his slide guitar.

“Since I’m a doctor and I play blues music, I’ll call it Dr. Blues Belgian Brews,” Hadzic told Pain Medicine News.

In addition to PainKiller, NerveBlock and SuperPills, Dr. Blues makes a malty “PaceMaker” beer and the non-alcoholic “Placebo” beer -- for people who like the flavor but not the buzz and can’t tell difference anyway. Placebo is so popular it’s already sold out for the year.

Dr. Blues beers are only available online and while a lot of the marketing is tongue-in-cheek, they’re also careful not to encourage excessive alcohol consumption. The website links to a recent Lancet study that found no amount of alcohol improves health, as some studies have suggested.

“DR BLUES does not promote drinking. Instead, he brews his recipes for the lucky, consenting few, who like him, insist on a unique story & experience for special occasions,” the website cautions.

Hadzic maintains a website, “Dr. Blues.com” that has fascinating factoids about his favorite beverage. You may not know that China is the world’s largest beer consuming nation or that Scotland’s “Snake Venom” is the world’s most potent beer at 67.5% alcohol.  Snake Venom is also one of the world’s most expensive brews at $67 a bottle.

If you are ever in Belgium and in need of beer, blues or anesthesia, look up Dr. Blues. He’s your one stop for the best of all three.

Pain App Lets Patients ‘Paint’ Their Pain

By Pat Anson, PNN Editor

There are dozens of mobile apps that can help chronic pain patients track their symptoms, send reports to doctors, get health tips and even keep tabs on the weather.

GeoPain, a free app recently launched by a University of Michigan startup, takes the technology a step further. Instead of just giving a single number on a pain scale of zero to 10, patients can “paint” their pain on multiple locations on a 3D image of the human body.

The app’s creators say visually mapping the pain gives doctors a better idea of the pain’s location, severity, it’s possible cause and the best way to treat it.

“We can dissect the pain with greater precision, in one patient or several, and across multiple body locations,” says Alexandre DaSilva, co-founder of MoxyTech and director of the Headache & Orofacial Pain Effort Laboratory at the U-M School of Dentistry.

“Whether the patient has a migraine, fibromyalgia or dental pain, we can measure whether a particular medication or clinical procedure is effective for each localized or spread pain condition. Geopain is a GPS for pain health care.”

Patients can also use GeoPain to show their doctors a visual recording of a pain flare long after the flare has ended.

“What patients are responding to the most is the visual tracking of their pain over time. They have shared some great stories of how they can now cleary show doctors how their pain has changed, which helps give them credibility and speeds up treatment,” Eric Maslowski, MoxyTech’s co-founder and chief technology officer, wrote in an email to PNN.

“Many clinicians like the visual nature of the app and ease of use. What was surprising to us initially was their interest in it for documenting patient visits for insurance and liability.” 

The app was initially created to track pain in patients enrolled in studies on migraine and chronic pain at the University of Michigan. Research showed that GeoPain data directly correlates with opioid activity in the brains of chronic pain patients, suggesting it might be useful in clinical trials to measure the effectiveness of pain medication.

The free app is available at Google Play, Apple’s App Store and at GeoPain.com.

Can a Rare Moss Be Used As a Painkiller?

By Pat Anson, PNN Editor

Cannabis, kava and kratom have some competition. Swiss scientists say a rare moss-like plant could be another natural substance that can treat pain and inflammation. And it’s completely legal.

Radula perrottetii is a member of the liverwort family that only grows in Japan, New Zealand, Tasmania and Costa Rica. It produces a molecule called perrottetinene (PET) that is remarkably similar to tetrahydrocannabinol (THC), the psychoactive ingredient found in cannabis. 

"It's astonishing that only two species of plants, separated by 300 million years of evolution, produce psychoactive cannabinoids," says Jürg Gertsch, PhD, a professor in the Institute of Biochemistry and Molecular Medicine at the University of Bern.

UNIVERSITY OF BERN

A few year ago, Gertsch learned that dried samples of liverwort were being advertised on the internet as incense that produces so-called "legal highs." At the time, little was known about the pharmacological effects of PET, so Gertsch and his colleagues set out to discover how the substance works.

In studies on laboratory mice, they found that PET reaches the brain very easily and that it activates the same cannabinoid receptors that THC does. PET also has a strong anti-inflammatory effect, which makes it potentially useful as a painkiller.

Because PET produces only a mild degree of euphoria, researchers believe it has low abuse potential and fewer side effects than THC.  

Gertsch and his colleagues recently published their findings in the journal Science Advances. They plan to conduct more extensive animal testing before any clinical trials on humans. And that could take years.

In the meantime, liverwort is already being used for medicinal purposes. “Despite serious safety concerns,” WebMD says liverwort is used to treat gallstones, liver conditions, varicose veins and menopause. Others uses include “strengthening nerves” and stimulating metabolism.

Amazon and eBay advertise liverwort – not as medicine – but to help decorate terrariums and aquariums.

Gene Therapy Eases Chronic Pain in Dogs

By Lisa Marshall, University of Colorado at Boulder

When Shane the therapy dog was hit by a Jeep, life changed for him and his guardian, Taryn Sargent.

The impact tore through the cartilage of Shane's left shoulder. Arthritis and scar tissue set in. Despite surgery, acupuncture and several medications, he transformed from a vibrant border collie who kept watch over Sargent on long walks to a fragile pet who needed extensive care.

"Sometimes he would just stop walking and I'd have to carry him home," recalls Sargent, who has epilepsy and relies on her walks with Shane to help keep her seizures under control. "It was a struggle to see him in that much pain."

Today, 10-year-old Shane's pain and reliance on medication have been dramatically reduced and he's bounding around like a puppy again, 18 months after receiving a single shot of an experimental gene-therapy invented by CU Boulder neuroscientist Linda Watkins

shane and taryn sargent (casey cass/cu boulder)

Thus far, the opioid-free, long-lasting immune modulator known as XT-150 has been tested in more than 40 Colorado dogs with impressive results and no adverse effects. With human clinical trials now underway in Australia and California, Watkins is hopeful the treatment could someday play a role in addressing the nation's chronic pain epidemic.

"I'm hoping the impact on pets, their guardians and people with chronic pain could be significant," said Watkins, who has worked more than 30 years to bring her idea to fruition. "It's been a long time coming."

The Role of Glial Cells

Watkins' journey began in the 1980s when, as a new hire in the department of psychology and neuroscience, she began to rock the boat in the field of pain research.

Conventional wisdom held that neurons were the key messengers for pain, so most medications targeted them. But Watkins proposed that then-little-understood cells called "glial cells" might be a culprit in chronic pain. Glial cells are immune cells in the brain and spinal cord that make people ache when they're sick. Most of the time, that function protects us. 

Watkins proposed that in the case of chronic pain, which can sometimes persist long after the initial injury has healed, that ancient survival circuitry somehow gets stuck in overdrive. She was greeted with skepticism.

"The whole field was like 'what on Earth is she talking about?'"

She and her students hunkered down in the lab nonetheless, ultimately discovering that activated glial cells produce specific inflammatory compounds which drive pain. They also learned that, after the initial sickness or injury fades, the cells typically produce a compound called Interleukin 10 (IL-10) to dampen the process they started.

"IL-10 is Mother Nature's anti-inflammatory," she explains. "But in the onslaught of multiple inflammatory compounds in chronic pain, IL-10's dampening cannot keep pace."

Over the years, she and her team experimented with a host of different strategies to boost IL-10. They persisted and, in 2009, Watkins co-founded Xalud Therapeutics. Their flagship technology is an injection, either into the fluid-filled space around the spinal cord or the site of an inflamed joint, that delivers circles of DNA in a sugar/saline solution to cells, instructing them to ramp up IL-10 production.

With financial help from the National Institute of Neurological Disorders and Stroke, the MayDay Fund and CU's Technology Transfer Office – which has provided intellectual property support, assistance with licensing agreements, and help obtaining a $100,000 research grant in 2018 – Watkins is edging closer to bringing her idea to clinical practice.

She has teamed up with veterinary chronic pain specialist Rob Landry, owner of the Colorado Center for Animal Pain Management in Westminster, to launch the IL-10 research study in dogs.

Their results have not been published yet. But thus far, the researchers say, the results look highly promising.

"They're happier, more engaged, more active and they're playing again," said Landry, as he knelt down to scratch Shane's belly after giving him a clean bill of health.

With Shane able to accompany her on her walks again, Sargent has also seen her quality of life improve. Her seizures, which increased in frequency when Shane was injured, have subsided again.

linda watkins with shane (casey cass/cu boulder)

Human Studies Underway

Because the treatment is so localized and prompts the body's own pain-killing response, it lacks the myriad side effects associated with opioids – including constipation and dependency – and it can last for many months after a single injection.

Ultimately, that could make it an attractive option for people with neuropathic pain or arthritis, Watkins says.

This summer, Xalud Therapeutics launched the first human study in Australia, to test the safety, tolerability and efficacy of the compound. Another one-year clinical trial of 32 patients with osteoarthritis of the knee is now underway in Napa, California.

More research is necessary in both pets and people, Watkins stresses. But she's hopeful.

"If all goes well, this could be a game-changer."

Social Media Lowers Depression Risk for Pain Patients

By Pat Anson, PNN Editor

Seniors citizens who have chronic pain are significantly less likely to suffer from depression if they participate in an online social network, according to a new study.

Researchers at the University of Michigan reviewed the results of a 2011 survey of more than 3,400 Medicare patients aged 65 and older, in which respondents were asked about their depression, pain and social participation. About 17% of the seniors used an online social network in the previous month.

Researchers found that seniors who had chronic pain were often depressed, socially isolated and less likely to participate in activities that require face-to-face interaction.

However, online social participation appeared to buffer the impact of pain on depression. Seniors in pain who did not use an online social network were twice as likely to become depressed.

“The results suggest that for those in pain, it may be possible that online social participation can compensate for reduced offline social participation, especially where it pertains to the maintenance of mental health and well-being. This is critical because the onset of pain can often lead to a ‘downward spiral’ of social isolation and depression, resulting in adverse outcomes for the health of older adults,” wrote lead author Shannon Ang, a doctoral candidate at the U-M Department of Sociology and Institute for Social Research.

“Online social participation serves as a way to possibly arrest the development of pain toward depression through this pathway, by ensuring that older adults remain socially connected despite the presence of pain.”

Social media may also preserve cognitive function and psychological well-being in the elderly, researchers said. The findings are significant in an aging society where social isolation and loneliness are key determinants of well-being.

"Our results may be possibly extended to other forms of conditions (e.g., chronic illnesses, functional limitations) that, like pain, also restrict physical activity outside of the home," Ang said.

The survey data did not identify what types of social media – such as Facebook or Twitter – were more effective in warding off depression and social isolation.

The study was published in the Journals of Gerontology.

Pain Researchers Say Let Sleeping Dogs Lie

By Pat Anson, PNN Editor

Most people with chronic pain recognize the importance of good sleeping habits. A night spent tossing and turning can mean a day full of aches and pains.

For that reason, dog lovers are often told they shouldn’t sleep with their pet. One survey of pet owners found that over half said their dogs tend to wake them at least once during the night. Sleeping with a pet can also be unsanitary and lead to behavioral problems.   

"Typically, people who have pain also have a lot of sleep problems, so usually if they ask their healthcare provider about a pet, they're told to get the pet out of the bedroom. But that standard advice can actually be damaging," says Cary Brown, PhD, a Professor of Rehabilitation Medicine at the University of Alberta.

Brown is co-author of a small study, published in the journal of Social Sciences, in which seven chronic pain patients who slept with their dogs were asked about their pets’ impact on their sleep. Brown said the response was "overwhelmingly positive."

"They liked the physical contact with their dogs—cuddling before bed, and how it distracted them from feeling anxious about being alone at night. They felt more relaxed and safer, so they weren't anxious as they were trying to sleep," said Brown.

"A sense of relaxation and caring are emotions that release positive hormones in our bodies that will help us sleep better."

Having our pets sleep with us can also help ward off loneliness. A dog can take on a significant role for the chronically ill when friends drift away and social circles shrink.

“I’ve got my buddy and I’ve got my companion hanging out with me and I don’t get that loneliness,” one patient said.

“I always have got somebody to cuddle and make me feel loved when I am lonely and in pain and when I am trying to sleep,” said another.

Researchers say doctors need to have deeper conversations with their patients before suggesting that a pet sleep somewhere else.

"When you ask people to remove an animal they are in the habit of co-sleeping with, it could have consequences the health-care provider hasn't considered," Brown said. "For some people with chronic pain, their relationship with their pet could be the only one they have and the comfort that dog or cat produces would be lost."

For some patients, it’s also a reciprocal relationship. They try to help their dogs sleep and comfort them when they have pain.

“She [the dog] has days when she experiences lots of pain, I make myself get down on the floor at her level …. I will sit with her and talk with her and very softly, very calmly, I make a point of massaging her ever so gently,” one woman said. “I find this brings down her heart rate, she’s not in pain, the pain is starting to go down. I can physically see the changes in her and eventually she nods off to sleep.”

Although dogs have been living with people for thousands of years – and often sleeping with them – surprisingly little is known about the emotional and physical benefits of sharing a bed.

“This small study shines a light on this important and yet neglected area of research. It reveals that for these participants their dog appears to enhance their sleep in many ways. Further research is warranted to explore more fully the ways in which pet dogs influence sleep for people with chronic pain,” said Brown.

A Pained Life: Torn Between Hope and Fear

By Carol Levy, PNN Columnist

Tonight, I feel like the character Pushmi-pullyu from Doctor Dolittle. You know, the animal that has a head at both ends; one head pulling to go to the right, the other head raring to go to the left.

I’m also feeling torn between hope and fear.

Although I have trigeminal neuralgia, which is not a headache, I am going to be admitted tomorrow to the headache inpatient unit at one of the city hospitals.

The treatment I will receive is a 24-hour a day IV lidocaine drip, for 4 to 5 days.

Many years ago, I had lidocaine infusions but they were for only 3 to 4 hours each time. I tried it a few times, a few weeks apart, but there was never any benefit. On the upside, there were also no side effects.

“doctor dolittle”

As I read the information online about getting lidocaine for a protracted period, I am getting nervous. Hallucinations? Uh oh. I don't think so. That scares me.

I already know about the potential heart risks. The doctor told me I will have to be tethered to a heart monitor the whole time as a precaution. A sudden drop or increase in blood pressure, unconsciousness and even seizures are possible.

I did not know about the potential for deep vein blood clots until I read the information the clinic sent me. I will have to wear anti-clot stockings the whole time.

There is a list of other “moderate” and “mild” side effects: a metallic taste, tinnitus (ringing in the ears), lightheadedness, agitation, drowsiness, problems focusing, slurred speech, and numbness of the mouth and tongue.

The more serious side effects worry me. Nothing happened when I tried lidocaine the other times, but maybe having it 24 hours a day for a few days in a row vs. 3 to 4 hours every few days makes a difference.

That’s where the Pushmi-pullyu comes from. I do not know if I want to do this.

This will be the first time in the last 13 hospitalizations where I will not be going in for brain surgery to treat my trigeminal neuralgia. I have to admit, there is probably an unconscious aspect of feeling as though I am allowing myself to do one more potentially really dangerous procedure, like another surgery, and I am putting that feeling of danger on the lidocaine.

On the other hand, the reason to go ahead is pure and simple. Bathing the nerves in anesthetic for 72 hours, maybe slightly longer, makes sense to me. The nerves will be numbed or at least calmed down. How can that not work?

My bags are packed. I'm ready to go.  So once again, hope wins out over fear.

Is that a good thing or bad? I won't know for a few days, but I wonder if instead of Pushmi-pullyu for those of us in pain, it should be Fearmi-hopeyu -- with the “hopeyu” being the stronger of the two.

(10/23/18 update: Carol reports the lidocaine infusion did relieve her pain for a while, but by the 3rd day, “I had some bad reactions that altered my reality perception, not what I would think of as hallucinatory but close cousin so we had to stop it.” Carol says she is very disappointed by the outcome, but it was “definitely worth the trying. And thank you to all who asked.”)

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.” 

Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.