Migraine Drugs No More Effective Than Placebo for Kids

By Pat Anson, Editor

Two medications commonly prescribed to prevent migraines in adults are no more effective than a placebo when given to children and teenagers, according to a new study published in The New England Journal of Medicine.

Researchers affiliated with the Childhood and Adolescent Migraine Prevention (CHAMP) study randomly assigned 328 children and adolescents into three groups. One group received a daily dose of amitriptyline (Elavil), the second group received topiramate (Topamax), and the third group was given an ordinary sugar pill.

After 24 weeks, 52 percent of those taking amitriptyline and 55 percent of those taking topiramate had a 50 percent or more reduction in the number of headache days.

But the sugar pill was more effective, with 61% of the placebo group reporting their number of headache days reduced by 50 percent or more.

Researchers say the expectation of responding to a medication may have surpassed the pharmacological effects of taking a drug.

"The study was intended to demonstrate which of the commonly used preventive medications in migraine was the most effective. What we found is that we could prevent these headaches with either a medication or a placebo," says Andrew Hershey, MD, co-director of the Cincinnati Children's Headache Center and senior author of the study. "This study suggests that a multi-disciplinary approach and the expectation of response is the most important, not necessarily the prescription provided."

The children taking amitriptyline or topiramate had a significantly higher rate of side effects, including fatigue, dry mouth and, in three cases, mood alteration. About a third of those taking topiramate had paresthesia, a "pins and needles" tingling sensation in their hands, arms, legs or feet.

"The interpretation of these results is very challenging. In most situations, trials that fail to show benefit of an intervention do so because study participants do not improve. That was not the situation here. A majority of all study participants improved, regardless of their assigned treatment group," says Chris Coffey, PhD, a professor of biostatistics in the University of Iowa's College of Public Health, who was lead statistician for the study.

Researchers say further studies are needed identify the best ways to treat pediatric migraines. Simply prescribing sugar pill would be unethical without the patient’s knowledge.

"Our national team was hoping to develop evidence to drive the choice by medical providers of the first line prevention medication for helping youth with migraine, but the data showed otherwise, says Scott Powers, PhD, a pediatric psychologist and co-director of the headache center at Cincinnati Children's.

"We see this as an important opportunity for health care providers, scientists, children, and families because our findings suggest a paradigm shift. First line prevention treatment will involve a multidisciplinary team approach and focus on non-pharmacological aspects of care."

One of the non-pharmacological therapies being used is cognitive behavior therapy (CBT). While CBT has not been directly compared to a placebo for pediatric migraines, neurologists and psychologists say it can be a helpful component in pain care.

As many as one out of five teens suffers from migraines, but treatment options are limited compared to adults.  Last year the Food and Drug Administration approved two new treatments for pediatric migraine. Zonig is a nasal spray that provides pain relief in as little as 15 minutes, while Treximet is a medication that contains sumatriptan and naproxen, a non-steroidal anti-inflammatory drug (NSAID). Both Zonig and Treximet have been available for years to treat adult migraine.

Migraine is thought to affect a billion people worldwide and about 31 million Americans adults. In addition to headache pain and nausea, migraine can also cause vomiting, blurriness or visual disturbances, and sensitivity to light and sound. About half of people living with migraine are undiagnosed.

Placebo Effect is All in Our Heads

By Pat Anson, Editor

A new study has given researchers a better understanding why some people given a simple sugar pill will say it significantly reduces their pain.

It’s all in their heads.

Using functional magnetic resonance brain imaging (fMRI), scientists at the Northwestern Medicine and the Rehabilitation Institute of Chicago (RIC) have identified for the first time the region of the brain that's responsible for the "placebo effect" in pain relief. It’s an area in the front part of the brain -- called the mid frontal gyrus -- that also plays a key role in our emotions and decision making.

In two clinical trials involving 95 patients with chronic pain from osteoarthritis, researchers found that about half of the participants had mid frontal gyrus that had more connectivity with other parts of the brain and were more likely to respond to the placebo effect.

The use of fMRI images to identify these “placebo responders” and eliminate them from clinical trials could make future research far more reliable. It could also lead to more targeted pain therapy based on a patient’s brain images, instead of a trial-and-error approach that exposes patients to ineffective and sometimes dangerous medications.

"Given the enormous societal toll of chronic pain, being able to predict placebo responders in a chronic pain population could both help the design of personalized medicine and enhance the success of clinical trials," said Marwan Baliki, PhD,  a research scientist at RIC and an assistant professor of physical medicine and rehabilitation at Northwestern University Feinberg School of Medicine.

“This can help us better conduct clinical studies by screening out patients that respond to placebo and we can just include patients that do not respond. And we can measure the efficacy of a certain drug in a much more effective manner.”

Baliki told Pain News Network that differences in the brain could explain why some prescription drugs – such as Lyrica (pregabalin) – are effective in giving pain relief to some patients, but not for others.

“If we do the same with Lyrica, maybe we can find another area of the brain that can predict the response to that drug,” he said.

The study findings are being published in PLOS Biology.

"The new technology will allow physicians to see what part of the brain is activated during an individual's pain and choose the specific drug to target this spot," said Vania Apkarian, a professor of physiology at Feinberg and study co-author. "It also will provide more evidence-based measurements. Physicians will be able to measure how the patient's pain region is affected by the drug."

Currently, most clinical studies involving pain are conducted on healthy subjects in controlled experimental settings. Those experiments usually induce acute pain through immersion in cold water, pressure or some other type of applied pain. Baliki says there are significant differences between acute and chronic pain, and the experiments often translate poorly in clinical settings where pain is usually chronic.   

Do Scents Make You Sick?

By Pat Anson, Editor

One in three Americans suffers adverse health effects – such as migraines and asthma attacks – when exposed to air fresheners, cleaning supplies, perfume and other scented consumer products, according to a new study.

Researchers at the University of Melbourne polled over 1,100 Americans in an online survey and found that nearly all were exposed to fragranced products at least once a week at home, work, or in public places such as stores or hospitals.

Almost 35% reported adverse health effects such as breathing difficulties, migraine headaches, asthma attacks, skin rashes, dizziness, nausea, and other medical problems. For half of these individuals, the problems are so severe they are potentially disabling, as defined by the Americans with Disabilities Act.

"This is a huge problem; it's an epidemic," said Professor Anne Steinemann of the University of Melbourne School of Engineering, who is an expert on the health effects of environmental pollutants.

"Basically, if it contained a fragrance, it posed problems for people."

The study found that fragranced products may affect the bottom lines of many businesses. Over 20 percent of respondents said if they entered a store or business and smelled an air freshener or some fragranced product, they would leave as quickly as possible. And more than twice as many customers would choose hotels and airplanes without fragranced air than with fragranced air.

In the workplace, over 15% of respondents said they became sick, lost workdays or even lost a job due to exposure to fragranced products. Over half said they would prefer fragrance-free workplaces and health care facilities.

Even hygiene is impacted by fragrances. Nearly one in five said they are unable or reluctant to use toilets in public places because of the presence of an air freshener, deodorizer or scented product. And 14 percent said they would be reluctant to wash their hands in a public restroom because the soap might be scented.

“Adverse effects resulting from exposure to fragranced products, such as in workplaces and public places, raise concerns about liability,” said Steinemann. “For instance, individuals can suffer acute health effects, such as an asthma attack, if they enter a restroom that uses air fresheners. If they are unable to access a restroom due to the presence of an air freshener, then that poses a potential violation of the Americans with Disabilities Act.”

Two out of three survey respondents were not aware that fragranced products often emit hazardous air pollutants such as formaldehyde, and 72% were not aware that even so-called natural, green, and organic fragranced products emit hazardous air pollutants.

“Fragranced product manufacturers are not required to disclose all ingredients in their formulations. This lack of disclosure can impede efforts to understand and reduce adverse effects associated with potentially harmful compounds,” Steinemann wrote. “Further, we lack knowledge on which specific chemicals or mixtures of chemicals are associated with the adverse effects, and this is an important area for research.”

The study findings are published in the journal Air Quality, Atmosphere & Health.

Miss Understood: The Oska Pulse Trial

(Editor’s note:  Several weeks ago we were contacted by a representative for Oska Wellness, a San Diego company that makes the Oska Pulse, a wearable device that uses Pulsed Electromagnetic Field technology (PEMF) to treat pain. According to the company, the device dilates blood vessels and releases the body’s natural endorphins, which “has been shown to reduce joint and muscle pain by reducing inflammation.” It sells online for $399.

The company was invited and agreed to provide an Oska Pulse at no cost to PNN columnist Arlene Grau for a test run.)

oska wellness image

By Arlene Grau, Columnist

As many of my fellow pain sufferers know, when it comes to finding relief most of us are willing to try anything. In order to relieve my pain I go through a long list of pain relieving strategies, including a TENS unit, opioids and pain patches. So adding the Oska Pulse wasn’t anything new, especially since the directions were so easy to follow.

In the first weeks of treatment, it’s recommended that you use the device 4-6 times a day for half an hour. Although I don't work due to my being on disability, I'm still a busy mother of two, so this seemed a bit much for me. But I followed the guidelines to get the most out of my experience.

The Oska Pulse is very easy to use. You simply wrap it over the area you want to target, push the button, ensure it beeps and lights up, and the device does the rest. You don't feel or hear anything while it's on, except for when it shuts off, which is kind of nice because you can either relax while you wear it or go about your business. I used it for both my lower back and right hip.

After about a week, I was able to get some pain relief from the Oska Pulse. I wouldn't necessarily compare it to the relief I get from opioids, but it was enough to make me feel like I didn't need to take prescription drugs every 4 hours (which is a triumph). I only took them at bedtime or once or twice for breakthrough pain during the day.

I found that wearing the device 2-3 times in the morning when my back pain and hip are usually at their worst gave me the best results. Then I would wait a few hours and wear it again for one interval. At bedtime I would lay in bed and wear it another 2-3 times.

With the exception of how often I needed to use the device, which is what I think some people may be turned off by, I think the Oska Pulse really helps.

For those of you who work, you can actually wear the Oska Pulse over your clothing and still feel the effects of it. The benefits outweigh the inconvenience of wearing it.

I originally thought the Oska Pulse was not going to work for me, since I'm used to the TENS unit shocking my body and actually feeling something happening. You don’t really “feel” anything when the Oska Pulse is on, but I felt a difference after every use.

In my personal opinion, I think the Oska Pulse did a great job at temporarily relieving my pain and minimizing my inflammation.

Arlene Grau lives in California. She suffers from rheumatoid arthritis, fibromyalgia, lupus, migraine, vasculitis, and Sjogren’s disease.

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.

Unwilling to Suffer in Silence over Opioid Guidelines

By David Hendry, Guest Columnist

As an Army combat veteran, certified public accountant, law-abiding citizen and also a 70-year old arthritic, I am outraged by the restrictions imposed on primary care physicians for prescribing opioid pain medication.

The Centers for Disease Control and Prevention’s opioid guidelines are officially "voluntary" but have primary care physicians plainly scared about losing their licenses. My own physician, who has provided me with a low dose of Norco (and I have never asked for an increased dose), has suddenly found a host of reasons to discontinue it.

I listened carefully to this man I have known for years. He is not a very good liar. He is scared.

The "voluntary" guidelines seem to be saying to doctors: "Cooperate. We would not want anything to happen to your medical license, would we?"

That is the phrasing and logic of an extortionist.

How did Norco and heroin get lumped into the same set of statistics? I have even heard someone say, "Norco is a gateway drug to heroin.”

In fact, heroin has been a problem for decades. Actions to reduce its use have been ineffective and heroin has nothing to do with mild doses of relief for painful medical conditions that will never go away.

DAVID HENDRY

And how did I get statistically lumped in with addicts and criminals? The New England Journal of Medicine article "Reducing the Risks of Relief" acknowledges the opioid problem, but it is clear that there is not enough scientific evidence for such a "one size fits all" rule.

It is inhumane to remove pain relief and offer nothing as a replacement. Over-the-counter medications have their own problems and now we are told to go back to them? If they were effective, we would not need stronger medications.

The callous decision-makers (we're from the government and we are here to help!) exemplify the words of Francois de La Rochefoucauld: "We all have enough strength to endure the misfortunes of others."

We need a class action lawsuit to restore a reasonable balance between "pill mills" and the responsible use of narcotic pain relief. The class of people injured by the CDC guidelines and subsequent state-by-state actions include people like me, my wife (who suffers from post-polio syndrome), wounded veterans, and many others.

We are law-abiding Americans who recognize government over-reach and are unwilling to suffer in silence just because of a bureaucrat's decision.

David Hendry lives in Arizona. He has been a Chief Financial Officer and CEO for several mid-sized businesses. He also has a Master’s Degree in Health Care Management and a Master's in Education. David enjoys tennis, the outdoors and teaching, and is a proud Army combat veteran.

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 represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

No Increase in Physical Activity after Hip Replacement

By Pat Anson, Editor

A new study by British researchers has come to the surprising conclusion that physical activity such as walking and climbing stairs does not increase after hip replacement surgery.

Total hip replacement is one of the most common elective procedures. The surgery is usually performed on the elderly to relieve pain from osteoarthritis, which causes a loss of cartilage and joint function.

But in the first systematic review to examine the differences in physical activity both before and after hip replacement, researchers were left questioning the purpose of the surgery.

"The most common reason for a hip replacement is to reduce pain on movement. We expected that the amount of physical activity post-surgery would therefore increase. What we found surprised us," said lead researcher Tom Withers, from the University of East Anglia’s School of Health Sciences.

Withers and his colleagues looked at the physical activity of over 1,000 patients who had hip replacements, analyzing how far and how fast they walked, as well as cycling and climbing stairs.

"We found that there was no clear evidence of a change in physical activity following surgery,” said Withers. "The benefits of regular physical activity following a hip replacement are well known, so this research is important for healthcare professionals because it suggests that patients need to be encouraged to be more physically active."

The research findings are being published in the journal Clinical Rehabilitation.

"The lack of significant difference in physical activity after patients undergo such a common procedure suggests there is a need for further research, including further investigation into how other personal characteristics or pre-existing conditions might also influence the results,” says Toby Smith, a lecturer in physiotherapy in UEA's School of Health Sciences.

"Healthcare professionals and researchers need to better understand this lack of change and how patient's perceptions of physical activity might be modified to increase their engagement in physical activity post-operatively."

Recent studies in the United States have questioned whether many joint replacement surgeries are appropriate. A five year study of 175 knee replacement patients by the National Institutes of Health found that over a third of the surgeries were inappropriate. Many patients had pain and other symptoms that were too mild to justify having their knees replaced.  

About 30 million Americans have osteoarthritis, including a growing number of younger patients, aged 40 to 65. Doctors are often reluctant to perform hip replacement surgery on patients under age 50 because prosthetic joints typically last for less than 20 years. A second surgery to remove a worn prosthetic can destroy bone and put patients at risk for infection and other complications.

Indians Manager Battles Back from Chronic Pain

By Pat Anson, Editor

Cleveland Indians manager Terry Francona – who has led the Indians to their first World Series since 1997 -- has struggled for decades with chronic pain from knee, wrist and shoulder injuries.

His story is an inspirational one to pain sufferers who have also dealt with the stigma associated with chronic pain and the use of opioid pain medication.

Francona may be the front runner for American League manager of the year, but it wasn’t too long ago that he was barely able to walk after complications from knee replacement surgeries left him in severe pain with blood clots and staph infections.

His managerial career also seemed finished after rumors surfaced that he abused pain medication while managing the Boston Red Sox.

Francona was upfront about his health problems and use of painkillers like oxycodone and Percocet in his book with Dan Shaughnessy; “Francona: The Red Sox Years.”

“I think I probably should have died with all that happened,” Francona said of one extended hospitalization in 2002, when his right leg almost had to be amputated.

“There were a couple of nights in the hospital where I was thinking, I can’t take this anymore.  The nurses would come running in because I’d stop breathing. I was in bad shape. There were people around who did not think I was going to make it. I know I came real close to losing the leg.”

Pain medication helped him survive the ordeal.

TERRY FRANCONA

“I lived on it at that time,” Francona recalled in the book. “When I left the hospital, I was on heavy-duty drugs, and it was tough.”

Francona recovered and resumed his career as a baseball coach. In 2004, he was hired as manager of the Red Sox and led the team to its first World Series title in 86 years. They added a second title in 2007. Through it all, Francona was still in pain and taking so much medication he would sometimes joke about it. He also started hoarding pain pills.

When one of Francona’s adult daughters found a bottle in his home with 100 Percocet pills, she convinced her father to see a pain management specialist and enter a confidential drug treatment program managed by Major League Baseball.  

That was in 2011, the year Francona’s marriage and his career as Red Sox manager unraveled at the same time. A team that many predicted would win yet another World Series suffered an historic collapse. Stories surfaced about players drinking beer, eating fried chicken and playing video games in the clubhouse during games. Anonymous sources pinned much of the blame on Francona, who was unceremoniously dumped by the Red Sox at the end of the season.

“Team sources said Francona… appeared distracted during the season by issues related to his troubled marriage and to his health,” reported the Boston Globe. “Team sources also expressed concern that Francona’s performance may have been affected by his use of pain medication.”

Francona felt betrayed by the team and by the insinuation that he was an addict.

“I don’t have a drug problem, that’s pretty obvious. I don’t drink that much, but I joke about it a lot. Anybody that knew me knew that I had taken more painkillers in ’04, because my knees were shot,” he said.

Francona was hired as manager by the Indians in 2012 and has guided them to four consecutive winning seasons. The Indians swept Francona’s old club – the Red Sox – to win the American League’s divisional series this month. They went on to beat the Toronto Blue Jays to win the American League pennant and now face the Chicago Cubs in the World Series.

This is Francona’s 16th year managing in the big leagues. At 57, he doesn’t talk much about his health problems – preferring instead that the attention be focused on his players. In addition to pain medication, Francona reportedly takes blood thinning medication and wears compression sleeves on his legs to improve blood circulation.  

Pain Companion: Overcoming Victimization

By Sarah Anne Shockley, Columnist

One of the most challenging things about being in chronic pain is the powerlessness we often feel because we are unable to heal our bodies and stop the constant pain.

We may feel victimized by our conditions, pharmaceuticals, invasive procedures, the impersonal nature of most institutions, and even our own bodies.

We may feel we are at the mercy of an interlocking system of agencies and organizations, one or all of which may not present a caring or compassionate face. Medical and insurance forms, appointments, tests, procedures, and legal hearings don’t take into account that we are not at our best physically, mentally and emotionally.

Yet we may blame ourselves if we are not on top of the situation or able to answer questions clearly and accurately.

Sometimes, being ill or injured feels like a crime committed by us!

Take Responsibility

Believing that others are responsible (or guilty) places them in a position of power – leaving you to become the victim. To leave that feeling of powerlessness behind, I decided that, regardless of the circumstances of my injury, I was responsible for my situation from that point forward.

I declared myself at the center of my own emotional and physical well-being and recovery. I decided not to accept an outside source as the final authority, no matter how credible. I knew that I was the one who would ultimately heal myself anyway, regardless of the method used.

That decision alone, while not bringing with it an instantaneous and miraculous cure, at least afforded a measure of relief and a feeling of having more access to different choices, rather than living entirely at the mercy of outside authorities and systems.

Notice What You Can Control

In an effort to feel less at the mercy of outside forces and more in control of my life, I started noticing what aspects of my life were still under my control.

I noticed the decisions I was already making and congratulated myself for them. I also looked at the ones I could take back -- that I had handed over to others because I didn’t know I could make them for myself or felt I didn’t have the knowledge or strength to make on my own.

Instead of following along with everything suggested by medical practitioners without question, I took authority back for myself and became part of the decisions about medications and treatments.

Choose Your Own Path

I decided that I was in charge of my own healing path. I became as knowledgeable as I could about my condition and what modalities were available, so that I could make informed decisions about my treatment.

I researched alternative therapies, natural healing, recent studies and the latest medical breakthroughs. I read blogs and stories about how other people were coping with my condition, and how some had made improvements or found ways to cure themselves.

I looked into what I could can do for myself: How improving my diet could help healing, how I could think more positively, what herbs and supplements might be beneficial, how I could reduce the amount of stress I was under, and how I could get more restful sleep.

Some of these things made only small changes in the amount of pain I was in, but doing them gave me a greater sense of direction in terms of finding ways to live with and ease my pain. It felt empowering to make my own choices, instead of putting my condition and my pain at the helm all the time.

Living with constant pain can make you feel powerless. It’s easy to feel that you have lost control over your own destiny. But thinking of yourself as a victim of pain or a victim of circumstances does very little to help you move toward whatever healing is possible for you.

Deciding to take control of whatever is in your power, taking responsibility for your own healing path, and making conscious choices toward increased well-being on a daily basis can help relieve feelings of victimization and powerlessness. And it allows us to be more fully available to new possibilities that may come our way.

Sarah Anne Shockley suffers from Thoracic Outlet Syndrome, a painful condition that affects the nerves and arteries in the upper chest. Sarah is the author of The Pain Companion: Everyday Wisdom for Living With and Moving Beyond Chronic Pain.

Sarah also writes for her blog, The Pain Companion.

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.

New Website Launched for Kratom Comments

By Pat Anson, Editor

In a sign of their distrust of the federal government, kratom community activists have created their own website for supporters to submit comments to the U.S. Drug Enforcement Administration on the proposed classification of kratom as a controlled substance.

On October 12, the DEA formally withdrew its controversial plan to classify two of the active ingredients in kratom as a Schedule I substances, which would have made the sale and possession of the herb a felony.  Instead, the DEA said it would ask the Food and Drug Administration for a full medical and scientific evaluation of kratom, and solicit public comments on the issue at Regulations.gov. 

But issues arose almost immediately with the Regulations.gov website, where some kratom supporters said their comments weren’t accepted or the website was having technical difficulties.

Similar problems were reported when the Centers for Disease Control and Prevention took comments at Regulations.gov on its opioid prescribing guidelines. In the end, over 4,000 comments on the guidelines were received, a record number.

This week the American Kratom Association (AKA) and the Botanical Education Alliance launched KratomComments.org to take comments from the public that will then be automatically submitted to Regulations.gov with an independent record of their submission. Software used by the website was created by The Soft Edge, Inc. (TSE) to avoid some of the pitfalls of Regulations.gov.

“KratomComments.org is the best way of protecting the kratom community,” the AKA said in a statement. “No comments can be ‘lost’ due to glitches at Regulations.gov. That site has been down already and no one knows what was lost. KratomComments.org ensures that comments made will be independently stored and recorded.

“There is no track record whatsoever of submissions made through TSE platforms to Regulations.gov being rejected. To the contrary, the platform has been used to facilitate the successful submission of several hundred thousand comments.”

But not everyone is on board with a third party submitting comments to the government.

“If you use the American Kratom Association’s ‘kratomcomments.org’ you are risking your comment not being counted,” warns kratom supporter Levi Beers on his website. Beers said he was advised by the DEA to submit comments directly to Regulations.gov and not through a third party.

“People are so confused you’ve got people submitting comments through regulations.gov and kratomcomments.org, which is going to hurt this process,” Beers said.

Hundreds of Comments Submitted

So far, over 800 comments have been submitted to Regulations.gov. The vast majority are from people who say kratom – which comes from the leaves of a tree in Southeast Asia – has helped them manage symptoms of chronic pain, anxiety, depression or addiction.

“Kratom has allowed me to live a highly productive, healthy and enjoyable life after my personal journey through addiction,” wrote Troy Foos, a 51-year old man who said he was addicted to alcohol and opioid pain medication.

“My life, my marriage and my relationship with my kids is a thousand times better because of the 'helping hand' of this plant. Similar to how two cups of coffee get me rolling in the morning, it has allowed me to successfully navigate my addictions and live a healthy, highly effective life at work and at home.”

“As a person with chronic pain caused by fibromyalgia, having kratom as a non-addictive option has been great,” wrote Wyatt Gaylor.  “I can now take it when I'm having a bad day without the side effects associated with opiates.”

“Kratom definitely needs to be banned,” wrote an anonymous poster who left one of the few negative comments about kratom. “My son is currently in rehab for addiction to kratom. This is a very serious product which has caused very serious health issues in someone who is only 20 years old.” 

There is usually a discrepancy at Regulations.gov between the number of the comments received and the number posted. That’s because comments are not posted until the next business day. Others are under review by DEA because of personal information or inappropriate language. Comments will be accepted until December 1, 2016.

Researchers Unveil 3-D Image of ‘Marijuana Receptor’

By Pat Anson, Editor

An international team of researchers has released the first three-dimensional image of a human cannabinoid receptor – a discovery expected to advance research into the medical and recreational use of marijuana.

The research findings, published in the journal Cell, focused on how tetrahydrocannabinol (THC) -- the chemical in marijuana that makes people “high” -- binds to a cannabinoid receptor known as CB1, which is embedded in the surface of many nerve cells.

Cannabinoid receptors are part of a large class of receptors known as G protein-coupled receptors (GPCR), which account for about 40 percent of all prescription pharmaceuticals on the market.

"As marijuana continues to become more common in society, it is critical that we understand how it works in the human body," said Zhi-Jie Liu, a professor and deputy director of the iHuman Institute at Shanghai Tech University, who is also affiliated with the Chinese Academy of Sciences.

"We need to understand how marijuana works in our bodies; it can have both therapeutic potential and recreational use, but cannabinoids can also be very dangerous."

At the beginning of the study, researchers struggled to collect enough data to produce a crystal form of the CB1 receptor, which was needed to create the high-resolution image.

When they finally succeeded in crystalizing the receptor, they found a complex structure of pockets and channels to various regions of the receptor.

The discovery could help explain why synthetic marijuana and medicines designed to mimic cannabis have had unexpected and sometimes harmful side effects.

For example, a cannabis-based drug developed to treat obesity was found to cause depression, anxiety, and suicidal tendencies, so the medication was pulled off the market.

And synthetic marijuana, such as Spice and K2, can have severe side effects such as seizures, hallucinations, anxiety attacks and even death.  

Yekaterina Kadyshevskaya, Stevens Laboratory, USC

"With marijuana becoming more popular with legislation in the United States, we need to understand how molecules like THC and the synthetic cannabinoids interact with the receptor, especially since we're starting to see people show up in emergency rooms when they use synthetic cannabinoids," said study co-author Raymond Stevens, a professor at the iHuman Institute and a professor of Biological Science and Chemistry at the University of Southern California.

The findings could also guide the development of cannabis-based drugs to treat pain, inflammation, obesity, fibrosis and other medical conditions.

"Researchers are fascinated by how you can make changes in THC or synthetic cannabinoids and have such different effects," says Stevens. "Now that we finally have the structure of CB1, we can start to understand how these changes to the drug structure can affect the receptor."

Fewer Pain Meds but More Overdoses in Massachusetts

By Pat Anson, Editor

Opioid prescribing fell by 15 percent for members of Blue Cross Blue Shield of Massachusetts after the insurer adopted policies that discourage the dispensing of opioid pain medication, according to a new analysis by the Centers for Disease Control and Prevention.

The CDC’s Morbidity and Mortality Weekly Report found that 21 million fewer opioid doses were dispensed to Blue Cross Blue Shield members from 2012 to 2015. But the new policies failed to slow the growing number of opioid overdose deaths in Massachusetts, which more than doubled during the same period.

The CDC said it will "take time" before overdoses start to decline.

“Reducing the level of opioid prescribing is a long term strategy to limit exposure to these drugs. Mortality outcomes would not be expected to change for several years after implementation, and impact would be complicated by the increasing supply of illicit opioids,” Courtney Lenard, a CDC spokesperson, said in an email to Pain News Network.  

"Long-term strategies like the one outlined in the report take time to make an impact and therefore no immediate impact can be expected during the first several years of program implementation. Assessing what happened before and after the policy at the mortality level is inappropriate."

Blue Cross Blue Shield (BCBS) of Massachusetts is the state’s largest insurer, with about 2.8 million members.

In 2012, the insurer adopted policies that discourage opioid prescribing by requiring doctors to develop treatment plans that consider non-opioid therapies; requiring pre-authorization for all opioid prescriptions after an initial 30 day supply; and limiting some pain patients to use of a single pharmacy.

The effect was immediate, with an average monthly decline of 14,000 prescriptions for both short and long-acting opioids.

Although cancer patients were exempt from the policies, there was a 9% decline in opioid prescriptions to BCBS members with a cancer diagnosis. The CDC attributed that to a “sentinel effect” in which doctors implement the same policies for all of their patients regardless of diagnosis.

“I think oncologists were becoming more thoughtful and maybe more vigilant about how much narcotics they were prescribing and I think that’s why we saw that decrease in cancer patients,” said Tony Dodek, MD, associate chief medical director for BCBS of Massachusetts. “We’ve only received one complaint about the program in terms of people having access to necessary pain medications.”

Like the CDC, Dodek said it may take years before the stricter prescribing policies start to have an impact on overdoses. So far the signs are not encouraging.

Opioid overdoses in Massachusetts rose from 698 deaths in 2012 to 1,659 deaths in 2015. The trend has continued in the first six months in 2016, with nearly a thousand opioid overdoses reported. Two-thirds of this year’s deaths were related to fentanyl, a synthetic opioid that is increasingly appearing on the black market. Illicit fentanyl is often combined with heroin and cocaine, or used in the manufacture of counterfeit pain medication.

MASSACHUSETTS DEPARTMENT OF HEALTH

“It’s not surprising to me that overdoses have not gone down because there is still a lot of drugs in circulation,” said Dodek. “What we did was slow the supply of new medication that’s in circulation. The fact is there is already way too much medication sitting in people’s medicine cabinets at home and that is what was available to start this epidemic.”

The Drug Enforcement Administration has said the U.S. is being “inundated” with counterfeit painkillers and there are anecdotal reports of some patients turning to street drugs for pain relief as opioid medication has become harder to get. But Dodek says it is recreational users – not pain patients – who are resorting to the black market.

“Any pain patient isn’t having access problems to getting opioids,” he said. “Those who may be using it for recreational purposes or for diversion probably are having a more difficult time (getting prescriptions). We still need to figure out what to do about illicit drugs, but I think decreasing the amount of prescriptions drugs will only be a good thing in the end.”

And what about the effect on pain patients as these policies are adopted? The CDC report ends with this telling statement:

“Finally, it is not known from these data how patient pain and function were affected by limiting access to opioid prescriptions.”

How Positive Thinking Helps Me Cope with Chronic Illness

By Ellen Lenox Smith

Recently, I had a column published on tips for coping with gastroparesis – a digestive disorder that interferes with the movement of food through the intestine.

Despite my research and best efforts to try all the advice I gave, I continued to have no success with elimination. My life was weekly colonics, along with home enemas on the other days.

After six months of my gut essentially being shut down, I finally went to a new doctor, to find out that the diagnosis of gastroparesis was incorrect. I was dealing instead with “motility issues” caused by Ehlers-Danlos syndrome.

Feeling frustrated and discouraged, but also determined, I decided to try one more alternative treatment to see if I could find some relief.  

I found my old DVD of the “The Secret” and forced myself to once again listen carefully to what was being described, to see if this could turn things around. I had used this process before when I first had to retire, as I was experiencing excessive stress relative to our financial situation. I was so concerned how we would survive financially without my income.

Watching the DVD, I learned to understand that energy flows where attention goes, and that life is a product of our thoughts and feelings. It seemed nuts to me at the time, but I had nothing to lose and everything to gain if the process worked.

ellen lenox smith

I began to focus on wanting to have enough money to pay our bills. And strangely enough, within a month, that stress over money seemed to leave me and I began to trust that things would fall into place.

Today, ten years later, I have remained calm about money, which still shocks me! This was not who I was before.

Now I was back to the drawing board to see if this could turn my motility issues around. Since energy flows to what you focus and think about, you have to train yourself not to focus on what you don’t want, but on what you are grateful for andwant in life.

To give this a try, I was to wake up each morning and spend a few minutes in bed thinking about what I am grateful for and then visualize what I want in life. Since it seems harmless and I needed help, I decided to try this process again.

About three weeks ago, I started doing this visualization, remembering what it was like to feel the sensation of having to eliminate and also the process of feeling the release. I know this sounds somewhat irrational, but after six months of nothing working, I was game for anything.

Within three weeks of trying it, I began to not only feel the sensation, but actually began to have success with elimination. All seems to be “on go” unless I eat foods that I react to or I’m under stress, both of which cause the GI system to shut down.  

My system has only shut down three times in the past three weeks. Something is changing and the results are thrilling and fill me with new hope.

Focusing on the positive and pushing negative situations out of the mind is not easy. Just look at the evening news! We wait until the end of the national news for one piece called “Making a Difference” that ends the broadcast with one positive report. Why don’t we sit and watch all positive things that have happened that day?

“The Secret” states: “Everything we think and feel is creating our future. If you’re worried or in fear, then you’re bringing more of that into your life throughout the day.”

What do you have to lose to give this a try? I now no longer stress about money and have added a successful movement of my gut again after six months of no success. I love how much more positive and hopeful I am feeling by practicing this simple process. Future goals to try will be imaging a walk on sand and in my yard,. along with driving again.  

Over the past eight years, I have utilized many conventional treatment modalities. Not all have proven successful, but I feel that I owe it to myself and my family to explore any treatment which might enhance the quality of my life.

Ellen Lenox Smith suffers from Ehlers Danlos syndrome and sarcoidosis. Ellen and her husband Stuart live in Rhode Island. They are co-directors for medical marijuana advocacy for the U.S. Pain Foundation and serve as board members for the Rhode Island Patient Advocacy Coalition.

For more information about medical marijuana, visit their website.

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.

Half of New York Overdoses Blamed on Fentanyl

By Pat Anson, Editor

Nearly half of the overdose deaths in New York City since July have been linked to fentanyl, according to a new report that adds to the growing body of evidence that illicit fentanyl is now driving the nation’s opioid epidemic – not prescription pain medication.

In an advisory sent to healthcare providers, New York’s health department said 47 percent of the city's confirmed overdose deaths since July 1 have involved fentanyl. That compares to 16% of overdoses involving fentanyl in all of 2015. So far this year, 725 people have died from drug overdoses in New York.

“Data suggest that the increased presence of fentanyl is driving the increase in overdose fatalities,” the alert said. “While fentanyl is most commonly found in combination with heroin-involved overdose deaths, fentanyl has also been identified in cocaine, benzodiazepine, and opioid analgesic-involved overdose deaths.”

Fentanyl is a synthetic opioid 50 to 100 times more potent than morphine. Because of its potency, healthcare providers are being warned that additional doses of naloxone – which reverses the effects of an opioid overdose – may be needed when fentanyl is involved.

Fentanyl is available legally by prescription in patches and lozenges to treat more severe types of acute and chronic pain, but illicitly manufactured fentanyl has become a scourge across the U.S. and Canada, where it is often mixed with heroin and cocaine or used to make counterfeit pain medication.

Unsuspecting buyers, including some pain patients who were unable to get opioid medication legally, often have no idea the drug they’re getting from a dealer or friend could contain a lethal dose of fentanyl.

dea image of fentanyl

In addition to New York City, several states in the Northeast and Midwest have reported that fentanyl is now involved in about half of their overdose deaths.

The sharp increase in fentanyl-related deaths has coincided with new restrictions on the prescribing of opioid pain medication. In the past year, the Drug Enforcement Administration has issued two public safety alerts about fentanyl, but the Centers for Disease Control and Prevention has remained relatively quiet about the problem – focusing instead on opioid prescribing guidelines that were released in March of this year.  

Those guidelines have led many doctors to reduce doses or stop prescribing opioids altogether, but they have failed to make a dent in the number of Americans dying from overdoses. There have also been anecdotal reports of a rising number of suicides by patients unable to get opioid medication.

“I know five people who have committed suicide from being denied pain medication by doctors after the CDC came out with their ridiculous statements of the ‘epidemic’ of prescription opioid use,” says Nina Stephens, a Colorado woman who suffers from chronic pelvic pain. 

“Doctors are so afraid of getting in the middle of this epidemic mess with the FDA that they have decided to stop prescribing opioids to their patients, even those patients who are in desperate chronic pain. We are now treating our patients worse than dogs when it comes to pain.”

Stephens says she has to drive 4 hours each month to see a doctor who is still willing to prescribe opioids. A local pain management doctor just 20 minutes away said he would take Stephens off opioids and give her epidural injections instead, which she refused.

“I am truly afraid that soon I will have to drive even farther to find a doctor who will still be willing to prescribe pain pills to me each month or I will have to start looking at the black market.  Maybe a veterinarian would be willing to start treating me?  No wonder the suicide rate is going up so dramatically!” Stephens wrote in an email to PNN.

Canada’s Fentanyl Crisis

Counterfeit fentanyl pills started appearing in British Columbia about two years ago and have since spread throughout Canada. The fentanyl crisis is so severe a two-day conference was held in Calgary this week for healthcare providers and law enforcement.  There were 153 deaths associated with fentanyl in Alberta province during the first six months of 2016.

Some attendees want Alberta to declare a public health emergency – as British Columbia did in April. But Alberta’s Minister of Justice says the current fentanyl situation doesn’t warrant such a declaration.

“None of those powers will assist us in this case but they do give the government a significant ability to violate civil liberties,” said Kathleen Ganley. “We think it’s important we use those powers that have significant impact on Albertans only where they would be helpful to us.”

On display at the conference was an illegal pill press seized by law enforcement that is capable of producing 6,000 fentanyl laced pills per hour.

“Some of the tablets we’ve been seizing in Calgary have ranged from 4.6 milligrams to 5.6 milligrams per tablet—which is very high obviously, considering a lethal dose is two milligrams,” said Calgary police Staff Sgt. Martin Schiavetta in Calgary Metro.

Researchers Discover ‘Brain Signature’ for Fibromyalgia

By Pat Anson, Editor

Researchers at the University of Colorado Boulder have discovered a “brain signature” that identifies fibromyalgia with 93 percent accuracy, a potential breakthrough in the diagnosis and treatment of a chronic pain condition that five million Americans suffer from.

Fibromyalgia is a poorly understood disorder characterized by deep tissue pain, headaches, fatigue, anxiety, depression and insomnia. The cause of fibromyalgia is unknown and there is no universally accepted way to diagnose or treat it.

The CU Boulder researchers used MRI scans to study brain activity in a group of 37 fibromyalgia patients and 35 control patients, who were exposed to a series of painful and non-painful sensations.

The researchers were able to identify three neurological patterns in the brain that correlated with the pain hypersensitivity typically experienced with fibromyalgia.

UNIVERSITY OF COLORADO BOULDER

"The potential for brain measures like the ones we developed here is that they can tell us something about the particular brain abnormalities that drive an individual's suffering. That can help us both recognize fibromyalgia for what it is - a disorder of the central nervous system - and treat it more effectively," said Tor Wager, director of CU Boulder’s Cognitive and Affective Control Laboratory.

If replicated in future studies, the findings could lead to a new method to diagnosis fibromyalgia with MRI brain scans. Patients who suffer from fibromyalgia have long complained that they are not taken seriously and have to visit multiple doctors to get a diagnosis.

"The novelty of this study is that it provides potential neuroimaging-based tools that can be used with new patients to inform about the degree of certain neural pathology underlying their pain symptoms," said Marina López-Solà, a post-doctoral researcher at CU Boulder and lead author of a study published in the journal Pain. "This is a helpful first step that builds off of other important previous work and is a natural step in the evolution of our understanding of fibromyalgia as a brain disorder."

One patient advocate calls the use of MRI brain scans a breakthrough in fibromyalgia research.

"New cutting-edge neurological imaging used by CU Boulder researchers advances fibromyalgia research by light years," said Jan Chambers, founder of the National Fibromyalgia & Chronic Pain Association. "It allows scientists to see in real time what is happening in the brains of people with fibromyalgia. 

"In fibromyalgia, the misfiring and irregular engagement of different parts of the brain to process normal sensory stimuli like light, sound, pressure, temperature and odor, results in pain, flu-like sensations or other symptoms.  Research also shows that irregular activity in the peripheral nervous system may be ramping up the central nervous system (brain and spinal cord).  So the effect is like a loop of maladjustment going back and forth while the brain is trying to find a balance.  This extra brain work can be exhausting." 

The theory that fibromyalgia is a neurological disorder in the brain is not accepted by all. Other experts contend it is an autoimmune disorder or even a “symptom cluster” caused by multiple chronic pain conditions. And some doctors still refuse to accept fibromyalgia as a disease.

One company has already developed a diagnostic test for fibromyalgia – and it’s not a brain scan. EpicGenetics has a blood test that looks for protein molecules produced by white blood cells. Fibromyalgia patients have fewer of these molecules than healthy people and have weaker immune systems, according to the founder of EpicGenetics. But critics have called the blood test “junk science” that is backed up by little research.

A Pained Life: Show and Tell

By Carol Levy, Columnist

I’ve written before about Susanne Main’s Exhibiting Pain research project --- which looked at creative ways to express the chronic pain experience. I was happy to contribute a picture that conveys how quickly pain from trigeminal neuralgia can strike.

The Exhibiting Pain project recently ended, but before closing participants were asked if they had ideas for more research or collections.

My thoughts on the question turned to my own experience trying to get a diagnosis and help for my facial and eye pain.

Because of an insurance issue I had to go to a hospital clinic for over a year. Every visit was the same. I saw a medical resident, sometimes the same person, sometimes not. Regardless, the visit always followed the same script.

“I have terrible pain in my face,” I would say, while pointing a finger towards my face and drawing a circle around the painful area. Because of the horrendous pain triggered by any touch, I made sure not to come in contact with the skin.

The resident would look at me. Then he would shrug his shoulders or shake his head.

“I don't know what you have,” he’d say. “Maybe it's psychological.”

Other residents were dumbfounded and would send me home with a verbal pat on the head. I literally had to cry during a phone call with one resident before I was finally prescribed pain medication.

As many times as I showed up for my appointments, at least once a month, sometimes more, I would always say the same thing: “This is where the pain is.”

My finger never varied from the circle I drew the first time they saw me, and their answer never varied: “I don't know what you have.”

One evening I finally got a diagnosis. The only problem was it came while I was on a date with one of the ophthalmology residents. We were touching. My date lifted his hand and brought it up towards the left side of my face.

I yelled out: “Don't touch me there! You’ll set off the pain.”

He looked at me with a strange expression. “Exactly where is the pain?” he asked.

I mapped out the same area for him that I had at the clinic, for him and all the other doctors I had seen.

He sat up and stared at me.

"I know what you have. You have trigeminal neuralgia.”

It was surreal. His diagnosis was horrendous and scary. And we were on a date for goodness sakes. Why now? Why not tell me that in the clinic?

I never varied in the area I indicated and described, no matter how many times and how many doctors I saw.  For some unknown reason, it was apparently ignored. I would later learn the area I showed them was the exact anatomical map of 2 parts of the trigeminal nerve. In fact, I was a textbook case.  So why did they ignore me?

That I can't answer. But Susanne Main's work has led me to a conclusion: What if doctors asked to see a drawing of where the pain is located and how it feels? Would they be so quick to dismiss it, to not hear what we are trying to tell them?

Maybe the visual is what is necessary to open their eyes. And their ears.

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.