Updated Device Helps Prevent Migraines

By Pat Anson, Editor

A new pocket-sized wearable device is available to help treat and prevent migraine headaches.

Cefaly Technology has released the Cefaly II, an updated version of the Cefaly I, which is worn over the forehead like a headband and uses small electrical impulses to stimulate the trigeminal nerve, which has been associated with migraine headaches.

The Cefaly II is much smaller and fits in the palm of a hand. Like its predecessor, the device is worn on the forehead, but is held more securely in place by a magnet. Because of its smaller size, the manufacturer believes the Cefaly II will be more accessible and easier to use.

“This compact device is so easy to tuck in a pocket or purse and I am hopeful it will further increase compliance and bring an even larger reduction in migraine attacks to patients,” said Dr. Pierre Rigaux, Chief Executive Officer of Belgium-based Cefaly Technology.

“Now that the device is so small, it’s a big deal because patients can have their Cefaly II with them wherever they go, which means they’ll be able to use it more readily, at their most convenient time.”

cefaly technology image

The Cefaly II uses a magnet to attach itself to a self-adhesive electrode worn directly on the forehead. The rechargeable, battery powered device sends tiny electrical impulses through the skin to desensitize the upper branches of the trigeminal nerve and reduce the frequency of migraine attacks. Patients have full control of their daily 20-minute session and can ramp up the intensity to their own comfort level.

In a small study of 20 migraine sufferers, published in The Journal of Headache and Pain, the Cefaly I provided "statistically significant" pain relief and an 81 percent reduction in the number of migraine attacks. Patients in the study also said they used significantly less migraine medication.

The electrode and output of the Cefaly II is identical to the Cefaly I, according to the company.

Here’s a company produced video of how the Cefaly II works:

The Cefaly II is only available by prescription and costs $349, with a 60-day money back guarantee. The device can be ordered online by clicking here. The Cefaly I will no longer be offered, but the electrodes for it will be available for another 5 years. Cefaly Technology has sold about 20,000 of the devices in United States and 80,000 outside the U.S.

Migraine is thought to affect a billion people worldwide and about 36 million adults in the United States, according to the American Migraine Foundation. It affects three times as many women as men. In addition to headache pain and nausea, migraine can also cause vomiting, blurriness or visual disturbances, and sensitivity to light and sound.

Lies, Damned Lies, and Overdose Statistics

By Pat Anson, Editor

“There are three kinds of lies: Lies, damned lies, and statistics.”

That famous quote, often attributed to British Prime Minister Benjamin Disraeli, was first used by Mark Twain in 1906. One hundred and ten years later, we still don’t know who said it first or why.

Which brings us to overdoses -- and the confusing, sometimes exaggerated, and often contradictory statistics on how many Americans are dying daily from opioid pain medication.  

According to the nation’s news media, anywhere from dozens to hundreds of Americans are dying every day from drug overdoses -- or as the Los Angeles Times boldly claimed today, “Overdose deaths now total 130 every day, or roughly the capacity of a Boeing 737.”

A Boeing 737? Really?

According to Boeing, a 737 can hold between 85 and 215 passengers, depending on the model. But maybe the Times is just giving us a ballpark estimate -- which may be entirely appropriate, given the muddled and murky reporting we get on overdoses.

The Times story got me curious about how other news organizations are reporting the overdose numbers. Here is a sampling:

“100 Americans die of drug overdoses each day.” The Washington Post

 “Dozens of Americans die daily from overdoses of pain relievers, heroin and other opioids.” Associated Press

“The United States averages 110 legal and illegal drug overdose deaths every day.”  Pittsburgh Post Gazette

“The number of these deaths reached...  about 125 Americans every day.” New York Times

 “More than 120 Americans die of opiate overdoses every day.” Logan Daily News

           “44 people in the U.S. die every day from overdose of prescription painkillers.” Des Moines Register

“More than 40 Americans die every day from prescription opioid overdoses.” Fox News

“Roughly 78 Americans die every day from overdoses of opioids.” Fox News

Yes, that’s right, Fox News reported two different estimates. To be fair, the numbers depend on whether you're counting all drug overdoses, opioid overdoses alone, or just prescription painkiller overdoses. Still, the numbers are all over the map and probably confusing to most readers.

Advocacy groups and politicians also play the numbers game:

“Every day, 46 Americans die from using prescription painkillers.” American Association of Retired Persons

“Every day, about 60 people die from opioid overdoses -- 44 from narcotic painkillers and 16 from heroin.” Physicians for Responsible Opioid Prescribing

“Over 130 Americans die every day from opioid and heroin overdoses.”  The Police Assisted Addiction Recovery Initiative

“Each day, 129 people die from drug overdoses in our country.”  Sen. Patrick Leahy (D-Vermont)

“Every day, 51 Americans die as a result of prescription opioid overdose.” Sen. Joe Manchin (D-West Virginia)  

So who is right? According to the Centers for Disease Control and Prevention, 28,647 Americans died from opioid overdoses in 2014, which works out to about 78 per day -- the number most often reported by the nation’s news media.

It is also a very misleading number, because many of those deaths include overdoses from heroin, illicit fentanyl and other illegal opioids. Take out the illegal drugs and the CDC admits that only about “half of all opioid overdose deaths involve a prescription opioid.”

That estimate too is misleading, because some heroin and illicit fentanyl deaths are wrongly reported as prescription opioid overdoses, because the coroner or medical examiner never actually performed a toxicology test on the deceased. The CDC admits that as well, but not too loudly.

So the next time you see someone report on the number of overdose deaths in the United States (and tries to fill a Boeing 737 in the process), remember that quote about “Lies, damned lies, and statistics.”

And thank either Mark Twain or Benjamin Disraeli for reminding us that statistics don’t always tell the truth.

Two Drug Combo More Effective for Fibromylagia

By Pat Anson, Editor

Two drugs commonly prescribed for fibromyalgia – Lyrica and Cymbalta – are more effective in treating the disorder when used together, according to a new study by Canadian researchers.

Lyrica (pregabalin) is an anti-seizure nerve drug, while Cymbalta (duloxetine) works primarily as an anti-depressant. Both have been used for years to treat fibromyalgia -- a poorly understood disorder characterized by deep tissue pain, fatigue, insomnia, and mood swings. Until now no one has studied how effective the two drugs could be when used in combination.

"We are very excited to present the first evidence demonstrating superiority of a duloxetine-pregabalin combination over either drug alone," said lead author Ian Gilron, MD, Director of Clinical Pain Research at Queen’s University in Kingston, Ontario.

“The results of this trial suggest that combining pregabalin with duloxetine can safely improve outcomes in fibromyalgia including pain relief, physical function and overall quality of life.”

This was a small study – only 41 fibromyalgia patients participated – and the researchers admit that larger trials are needed to see if the results can be replicated. The new research was published in the journal Pain.

The study is the latest in a series of clinical trials -- funded by the Canadian Institutes of Health Research -- which Gilron and his colleagues have conducted on combination therapies for chronic pain conditions. By studying promising drug combinations, they hope to show physicians how to make the best use of current treatments.

"The value of such combination approaches is they typically involve drugs that have been extensively studied and are well known to health-care providers," says Gilron.

Patients in the study were divided into three groups that either took pregabalin alone, duloxetine alone or a combination of the two for six weeks. Doses were gradually increased in the study to the maximum tolerated dose. When used in combination, patients could only tolerate relatively low doses of pregabalin and duloxetine, suggesting the drugs have an overlap effect when used together.

“The pharmacological diversity of a pregabalin-duloxetine combination is a mechanistically appealing feature that increases the likelihood of additive analgesic actions although there could similarly be some additive adverse effects with this combination. Even at significantly lower doses during combination therapy, superior global pain relief during combination therapy would suggest a greater additive effect for pain reduction than for side effects,” said Gilron.

The biggest side effect of the pregabalin-duloxetine combination was drowsiness, and the researchers admit that reduced physical activity caused by drowsiness could have contributed to pain reduction. 

Patients have long complained of other side effects from pregabalin and duloxetine when used separately, such as weight gain, nervousness, and brain fogginess. Many have also reported severe withdrawal symptoms and “brain zaps” when trying to get off the drugs. The study apparently didn’t address those issues. 

Lyrica (pregabalin) is one of Pfizer’s top selling drugs and generates over $5 billion in revenue annually. In addition to fibromyalgia, Lyrica is approved by the Food and Drug Administration to treat chronic pain associated with epilepsy, shingles, diabetic peripheral neuropathy, and spinal cord injury. The drug is also prescribed “off label” to treat lumbar spinal stenosis, the most common type of lower back pain in older adults.

Cymbalta (duloxetine) generated sales of $5 billion for Eli Lilly until its patent expired in 2013 and cheaper generic versions of duloxetine became available. Cymbalta is approved for fibromyalgia, neuropathy, osteoarthritis, depression and anxiety.

Only one other medication – Savella – is approved by the FDA for fibromyalgia, but it is not as widely used as the other drugs.

Fibromyalgia was initially thought to be a musculoskeletal disorder, but research now suggests it's a disorder of the central nervous system - the brain and spinal cord. Researchers believe that fibromyalgia amplifies painful sensations by affecting the level and activity of brain chemicals responsible for processing pain signals. It affects twice as many women as men.

A Pained Life: The Art of Pain

By Carol Levy, Columnist

There was a gigantic painting in the dining room of my parents house. My mother was the artist. It was beautiful, captivating and very, very unsettling.

Dead center she had painted a person crouched down in a tight position. It has been many years since I last saw it, but as I recall one hand was held outstretched towards the viewer. This person was surrounded by triangles, each one a different color, all pointing downward towards the person in the middle.

I did not like to look at it, but I never thought through what bothered me so much about it -- until I became involved with Susanne Main's research into creative depictions of life with chronic pain.

Susanne is an associate lecturer and PhD candidate at the Open University in the United Kingdom. Using online platforms, she is exhibiting artistic renderings by chronic pain patients.

Some are in your face: this is my pain, my life. LISTEN TO ME!

Some are explanatory: this is what arthritis does to my body. Some show the emotional effects of living with daily pain.

The goal of the Exhibiting Pain project is to find new ways of communicating to each other and the medical community what our pain is, how it feels, how it effects and affects us.

The meaning behind the picture I contributed, Trigeminal Neuralgia Strikes, was obvious, even the double meaning of the title: the lightning-like strike of pain and the fact that trigeminal neuralgia strikes out of the blue.

I was very surprised by the response. One commenter felt using red for the pain made it seem “superficial," the picture not indicative of how painful the disorder can be.

But the picture also got my point across. He said it made him want to know more about a condition of which he had been unaware.

"trigeminal neurlagia strikes"

So it was successful. To me.

We often lament how people don't “get” our pain no matter how many times and ways we try to explain it. We know what we are saying. We assume that that is what is being heard.

I drew the picture some time back to denote the pain for both Trigeminal Neuralgia Awareness Day and for Women in Pain Awareness month. It never occurred to me that what I drew was not  what people were seeing. 

So often we say, "They refuse to understand." I explain and explain until I'm blue in the face and they still say, “It's not so bad” or “I had a headache like that once.” 

The one thing I rarely hear, or to be honest even thought, is maybe I am not explaining it in a way they can understand. Instead of getting frustrated or angry, maybe I need to ask, “What exactly is it you don't understand?”

Sometimes we think we are speaking the same language, but the language of pain is often so very person specific. It's like the old break- up line: “It's not you, It's me.”

I regret never talking with my mother about what she had painted. I knew her life had been hard, and that she retained a disability from her bout with polio. I did not want to truly know her sadness and suffering. I now realize her picture spoke, very clearly and with no doubt, of her own pain.

But when it does not speak, like with my picture, it may just be me. And I may need to learn the language of the listener, so what I say is what is being heard.

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.

Why Won't Doctors Come to My State?

By Ellen Lenox Smith, Columnist

The other day at a medical exam, I was asked if I would consider helping to raise awareness about a serious issue we face in Rhode Island: doctors are rarely willing to come practice here.

My doctor’s medical practice wants to hire new physicians, but they have trouble finding a doctor even willing to be interviewed.  Many doctors in the practice are in their 50’s and will be difficult to replace when they retire.

Why is it so difficult to find their replacements?

I looked up an article written by John Kiernan called “2016’s Best & Worst States for Doctors” and began to find some answers.

To my surprise and dismay, Rhode Island is listed as the 50th worse state for opportunity and competition, and it is rated 46th for medical quality.

Overall, Rhode Island was ranked as the 49th worst state for doctors, only beating New York and the District of Columbia.

Learning this, I called the Rhode Island Medical Society to get a better understanding of  why we rank so poorly. I spoke with Steve DeToy, the Director of Government and Public Affairs. He offered to explain what was happening, not only in our state, but around the country.

According to DeToy, about 20 percent of Rhode Island’s population is eligible for Medicare. Reimbursement fees for Medicare are established by a formula and presently are equivalent to those in Massachusetts.

DeToy told me the problem is not Medicare, but the reimbursement rates set by commercial insurers, which are deterring doctors from wanting to practice here. Health plans like Tufts, United, Blue Cross Blue Shield, etc. have for years established very low reimbursement rates and there is no regulatory agency telling them what they should pay a doctor for.

These insurers may be saving costs to keep rates lower, but we are losing the chance for more medical help in Rhode Island. Why would a doctor choose to come here with huge debt from medical school knowing they could go to another state and be paid for the same services at much more reasonable rates?

The only positive aspect I found in this inexcusable and perhaps avoidable mess is that Rhode Island participates in federal and state funded health professional loan program that helps pay the exorbitant costs many doctors face for medical school loans. On average, medical school students end their education about $180,000 in debt.

In return for the loan payments, primary care, dentistry, and mental health professionals make a two year commitment to practice in communities where there is a shortage of physicians. Part-time employment requires a commitment of four years. This year, 24 such awards were given out. Last year, due to financial issues, only 14 were awarded.

Many patients in Rhode Island who live with complicated conditions are having trouble finding a doctor willing to treat them. Doctor shortages are a serious problem, not only here, but in other small and rural states where reimbursement rates are set too low. As doctors reach the age of retirement, imagine what it’s like to have trouble finding a qualified replacement to keep treating your patients.

Who can blame these practitioners? Why would you want to have less reimbursement for the same job that can be done in another state where you can get adequate compensation?

Medical professionals should earn enough to pay off their loans, support their families, and live the lives they deserve.

Where does your state stand? Do you know? We need to write our congressmen and make sure they are focused on this issue and are coming up with reasonable solutions to address this problem.

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.

How Curcumin Helped My Chronic Pain

By Judie Plumley, Guest Columnist

In 2013 I had a spinal fusion, 7 months after I had transvaginal mesh removal and reconstruction surgery.  During the operation, I contracted a severe bacterial infection in my spine called methicillin-resistant Staphylococcus aureus (MRSA). 

To make a long, painful story short, I ended up having 5 more spinal surgeries in the next year.  They did not get rid of the infection until it had liquefied 2 vertebrae and surrounding tissue. It almost killed me. 

There is extensive nerve damage, and my back is filled with rods and screws. 

During the worst of it I was on fentanyl, Dilaudid, Demerol, gabapentin (Neurontin) and oxycodone.  I spent 2015 weaning myself off the narcotics.  I was losing my insurance and I knew if I didn't, I would be in a withdrawal from hell.

I did go to two pain clinics, but just simply refused to be treated like a criminal.  I started exploring other options to deal with my pain.

Judie Plumley's spine

Since my son is a massage therapist, the first thing I started as soon as I was able was to get weekly massages while I healed.  Joseph stretched the forming scar tissue in order to allow me to move.

Next, I started using kratom, a half teaspoon twice a day.  I was amazed by the effect.  It knocked out a considerable amount of pain, but I was still spending 12 to 14 hours in bed each day.

About 2 months ago, my sister told me to try a supplement that combined curcumin – a yellow spice -- with black pepper oil. I bought it from Amazon, $15 for 120 caps. 

I am amazed with the results!  My pain is now bearable.  I can do about twice as much as I could before, and I am spending much less time in bed.

I am now in the process of getting off the gabapentin, but it is much harder than any of the narcotics.  The withdrawal is horrible.  As soon as this devil is off my back, I am done with doctors and hospitals.

curcumin

I refuse to be treated like a drug addict or a criminal.  I believe pain clinics are nothing more than a scam and that drug companies intentionally add things to their drugs to make people addicted. The antidepressants that are taking the place of opiates are even worse! Ever heard of a brain zap?

I swear, they are trying to kill us, or drive us to kill ourselves.  I don't understand why they are attacking people in chronic pain.  It's a terrible way to live.  I am lucky I have my son, a good support system, and have found something that works.  Life is hard enough as it is.

I have kept a journal since 2014.  I plan to write a book about my experience with MRSA.  Unless you’ve had it, you have no idea how dangerous and painful it is.

Judie Tucker Plumley lives in Georgia.

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.

How to Be a Patient Advocate

By Barby Ingle, Columnist

People in the pain often get ideas about what they can do to help advocate for the pain community, such as a petition drive or letter writing campaign. Some of these ideas are great, but when they try to implement them or get others to, things don’t work out -- there’s little participation, they get discouraged, and that is the end of that.

Over the past 10 years as a patient advocate who is very vocal and seen many ideas come and go, I have learned not to spend too much time doing what I know doesn’t work.

Is this fair to others in the pain community? I think so.

About 7 years ago I wanted to make a difference in the disease community of Reflex Sympathetic Dystrophy (RSD). I wanted to get bills passed to require mandatory education in RSD for providers. It would have to be a state-by-state process, which would take time, money and dedication, with no guaranteed results.

I started in Virginia by reaching out to a state legislator. He met with me through Skype, and then had me come to his office. I learned that anytime you want to mandate anything, it is very difficult to get passed into law. The legislator suggested I work with the Virginia health department. I had multiple meetings with state health officials and managed to get RSD information up on the health department's website, as well as over 10,000 RSD pamphlets printed and spread throughout Virginia. It was amazing. I then set my sights on other states.

We needed to raise funding for the printing of pamphlets for other states. A woman called and said that she saw our request for donations, but before she donated she wanted to make sure that this was not another fly-by-night idea. She was right to ask, although I was slightly offended that my hard work, volunteer time and dedication would be called into question.

In the end, we couldn’t raise the funding needed to get this accomplished. I was very sad, but had to admit my great intentions could not come to fruition because I was not able to raise the support or funding it would take. People loved the idea, but didn’t want to help physically or financially.

I have grown very leery of petition drives for similar reasons. The chances of a petition changing something major is almost zero. Even when over 80 pain groups came together this past year to help guide and make changes to the CDC opioid prescribing guidelines, it was not enough.

We did get one pain patient representative added to an advisory "stakeholder" group, which gave recommendations to the CDC's "Core Expert Group" committee. But that committee already had in mind what they were going to do, and unless we got someone on the Core Expert Group, we were not going to change their minds or the guidelines. Thousands of people in the pain community also wrote letters and signed petitions to the CDC. It didn’t make a difference.

What can we do to change this?

There has to be a way to harness the energy and passion in the pain community that is effective, efficient, and useful. Otherwise the pain community will continually be run over and ignored.

I believe we have to get into legislative offices. Today, this week, or this month, make an appointment with your state or local representative -- especially if they are on a legislative health committee. Go see them in person. Tell them your story. Tell them why proper and timely access to pain care is badly needed. How you are counting on them to support future legislation that is supportive of pain patients.

Tell them that you are paying attention, not just when there is a bill up for a vote, but every day -- because you are in pain and have special needs every day. Paint your story for your legislator so they will remember you when they are in the backrooms making deals before committee hearings.  Make them remember your face, your name and your story when they are deciding what bill to pass and how it will affect you.

Put a face to your disease and a face to chronic pain. As a 501 (c) (3) non-profit leader, I cannot say you should vote for this legislator or against that one. I approach legislative needs with each legislator not caring what aisle or political party they belong to. All legislators can help us because they are all in a position to pass laws.

Realize that everyone has an agenda. Which is most noble? The pain patient trying to do something for themselves so they can have more productive lives; insurance companies that lower the cost of healthcare; drug and medical device makers that are investing their time and money into treatments; or the providers we rely on to gain access to those treatments?

Become a person that the legislator knows, become the face in their thoughts when pain care comes up for legislation. Put a human in the process, so that the legislator sees that this affects people they know.

Patient advocacy groups have formed coalitions, such as the Consumer Pain Advocacy Task Force. These coalitions are planning and implementing strategies, and working together to make change as well. Professionalism and diplomacy are keys to their work and they need to be done by all in the pain community, whether you belong to an advocacy group or if you are working on your own.

Advocating with aggressive anger to our legislators, pharmacy boards, CDC, DEA, FDA, etc. allows our emotions take over and it is setting us all back. Flooding an office with angry letters, emails and phone calls with non-sustainable facts does not work.

We need to have in-person visits before the legislation even comes up. This is the "off season" for most legislators. Reaching out now, before the legislative sessions start again, for a face-to-face meeting has a time -- and it is now. 

We also need to target our own representatives. Having people from New Mexico calling legislators in West Virginia is probably not going to change any minds in West Virginia. In addition, making comments that are unsupported by facts, such as claiming that more patients are overdosing or turning to the streets for relief, are not yet proven. They can be debunked and then we are seen as catastrophizers.

Please know actual facts and be able to site statistics with solid sources when you advocate.

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation (iPain). She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her 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.

What Next for Arachnoiditis Patients?

By Pat Anson, Editor

A pioneering two-day conference on arachnoiditis has ended in Helena, Montana with dozens of  patients armed with new information about the chronic and disabling spinal disease.

Many are also left wondering who will treat them and how to pay for it.

"We practitioners need your help and you need our help," says Forest Tennant, MD, who is the world's foremost authority on arachnoiditis, a progressive and incurable inflammation of the spinal cord that leaves most people who have it with severe chronic pain.

Tennant, who treats about 60 arachnoiditis patients from around the country at his pain clinic in West Covina, California, has developed a complex and unique therapy for arachnoiditis that combines pain medication, anti-inflammatory drugs, vitamins and hormones. Once bedridden or using walkers, several of his patients were healthy enough to make the long trip to Montana to hear him speak.

"I would not dare prescribe these drugs if I didn't have control of the opioids and everything else you're doing. These things are hazardous in the hands of the inexperienced," he warned.

At age 75, Tennant knows it is time for other doctors to learn and start practicing his treatment methods.  But he and his patients face a dilemma. Most pain management doctors and specialists already have a full patient load and Tennant himself is not taking new patients.

"Every good specialist in this country is booked. They're not available and they don't know anything about this anyway," says Tennant.

"Pain management really is its own specialty now and if they're not in that field, they're not going to help you do this. These hormones are going to have to be done by the same doctor that manages your pain and manages your inflammation. It's going to have to be done by the same practitioner."   

If attendance at the conference is any indication, finding doctors willing to learn and practice Tennant's treatment protocol will be difficult. Invitations went out to over two thousand practitioners in Montana, but only a handful showed up.  No one from the Montana Medical Association or the Montana Board of Medical Examiners attended.

"The problem with this protocol in the conventional medical world is that this crosses disciplines. We're talking rheumatologists, we're talking endocrinologists, and that's where conventional medicine gets stuck," says Christine White, ND, a naturopathic physician from Missoula who attended the conference. "Conventional medicine has evolved into this realm where the general practitioner doesn't do a lot. They refer out (to specialists) and what we need to do as physicians is get general practitioners willing to take on more rings of this problem."

The problem may be a bigger one that anyone imagines. Tennant estimates as many as one million Americans may suffer from arachnoiditis, many of them misdiagnosed with “failed back syndrome” or other spinal problems.

Most people get the disease when the arachnoid membrane that surrounds their spinal cord is damaged during surgery or punctured by a needle during an epidural steroid injection. Inflammation sets in and can spiral out of control, forming scar tissue that cause spinal nerves to stick together. That leads to adhesive arachnoiditis and neurological problems, which can cause burning or stinging pain that can be felt from head to toe.

Insurance Won't Pay the Bills

Besides getting treatment, another common problem faced by arachnoiditis sufferers is their insurance coverage.

"The reimbursement structure is part of the problem and the reason why I ended up with adhesive arachnoiditis," says Terri Anderson, who as a federal employee was covered by Blue Cross Blue Shield when she went to get treatment for back pain.

"I think the doctors and surgeons looked at my Blue Cross Blue Shield and they wanted to do epidural steroid injections and spinal surgery. Blue Cross had good coverage for all these invasive procedures, so I think they have some culpability," she said

Like many arachnoiditis patients, Anderson is not reimbursed for the unusual drugs and hormone therapy that she gets "off label" from Dr. Tennant or for the cost of traveling to see him in California. Her out of pocket expenses add up to about $200 a month.

"My co-pays for my medications are about $500 a month," says Nancy Marr of Los Angeles, who is insured through Medicare and a supplemental policy with AARP. Marr doesn't have to travel far to see Tennant, but she does have to pay out-of-pocket for his services.

"To participate in this kind of a program at this point in time would end up costing people a tremendous amount of out-of-pocket costs," she says.

While all of this is discouraging, the mood was anything but gloomy at the conference. For many, including this reporter, it was their first chance to meet and interact with people they've been communicating with online for years. That sense of community and a common goal stirs optimism. And so does the knowledge that the conference may have laid the groundwork for a treatment that could ultimately benefit thousands of people who are suffering.

A Pain Poem: Locked Inside

“Locked Inside”

By Jennifer Chambers

Locked inside, I can’t get out of this rebellion called my face

Clawing from the inside to escape this hellish embrace

This mocking normalcy on the outside hiding the hell within

There’s nothing to show the judgers the truth hiding behind my skin

The lightning strikes with no warning of the coming storm

Leaving me in sudden agony far from the appearance of the norm

Funny stares and looks while I fight away the tears

Trying not to expose the truth behind my quaking fears

If there was evidence of each fight, scream, scratch and tear

Is this how my tormented and brutalized face would appear

Covered in rips and scratches, lines drawn upon lines

Indicative of my daily struggle to survive these impervious binds

pain art courtesy of painexhibit.org

Jennifer Chambers suffers from trigeminal neuralgia, a rare facial pain disorder, as well as fibromyalgia. Before she became sick, Jennifer worked as a psychologist.

When not immobilized by facial pain, Jennifer spends her time with family and writing her blog, The Spirit Scribe. She started her blog as an outlet for her pain and depression. Writing helps her get through depression, by giving her a release and a place to express herself daily.

Pain News Network invites other readers to share their stories (and poems) with us. Send them to:  editor@PainNewsNetwork.org. 

New Treatment Gives Hope to Arachnoiditis Patients

By Pat Anson, Editor

Dozens of pain patients and physicians are meeting in Helena, Montana this weekend at a pioneering medical conference focused on arachnoiditis -- a progressive spinal disease long thought to be incurable that leaves many patients disabled with chronic back pain.

The conference is being led by Dr. Forest Tennant, a pain management physician from southern California, who has developed a unique protocol to treat arachnoiditis with a combination of pain medication, hormones and anti-inflammatory drugs. Unable to get the same type of therapy where they live, desperate patients from as far away as Maine, Alaska and Florida have been traveling to see Tennant for treatment at his pain clinic in West Covina, a Los Angeles suburb.

“We’re making history today. In all my wildest dreams I never thought we’d be having an arachnoiditis seminar in my home state,” said Gary Snook, a Montana native and a patient of Tennant for over a decade. “If there is one thing that we can learn today, it's that this hopelessly incurable disease that we suffer from is not as hopeless as we once thought.”

It was Kate Lamport’s idea to have Tennant give a seminar on arachnoiditis in her hometown of Helena. The 33-year old mother of four developed spinal pain after a series of epidurals for child birth and bulging discs in her back. She was diagnosed with arachnoiditis last year and went to see Dr. Tennant in California.

“As I learned more about arachnoiditis, I realized how many people were struggling just getting a diagnosis and treatment,” Lamport says. “There are so many people who want to go see Dr. Tennant, but they can’t. He’s booked and they can’t afford to travel, so I wanted to put something together to give people an opportunity to come see him and learn from him.”

The arachnoitditis conference is not just for patients. Several physicians and practitioners are also attending, hoping to learn some of the therapies Tennant has developed over the past decade.  

FOREST TENNANT, MD

“Physicians are simply not getting the education and training they need,” says Tennant. “I am just so frustrated by all of the patients who are calling and all of the physicians that are calling, the demand for knowledge. And so we need a new way of doing some training and some education. And this is my first attempt to step outside of the educational box, if you will, and see if this is a mechanism that will successful.”

Tennant has conducted extensive research on the disease and has launched an Arachnoiditis Education Project for physicians. He says patients respond much better to treatment when arachnoiditis is in its early stages, when the inflammation is limited to the arachnoid membrane that surrounds the spinal cord.

As the disease progresses, the inflammation causes scar tissue to build around spinal nerves, which begin to adhere or stick together, leading to adhesive arachnoiditis -- which causes severe pain and other neurological problems, such as burning and stinging sensations that can radiate from the back down to the feet. More advanced stages of arachnoiditis can lead to paralysis.

Growing Number of Cases

Once considered rare, arachnoiditis is appearing more frequently as interventional pain physicians perform more surgeries and epidural steroid injections as alternatives to opioids for back pain. Tennant estimates as many as one million Americans may suffer from arachnoiditis, many of them misdiagnosed with “failed back syndrome” or other spinal conditions. He says every pain practice in the country needs to familiarize itself with arachnoiditis.

“We’ve had a decade of some marvelous science that no one talks about. We talk about opioids, epidurals and all the problems, but we don’t talk about the good things that have happened scientifically that have helped us develop a protocol to treat spinal cord inflammation,” Tennant told Pain News Network.

One discovery is the role that specialized cells in the brain and spinal cord – called microglial cells -- have in protecting and nourishing nerve cells. When glial cells become hyperactive in response to an injury, they trigger an inflammatory response that causes chronic pain.  That inflammation needs to be addressed with corticosteroids, says Tennant, or pain medications will never be effective.

The second discovery is that the central nervous system uses oxytocin, progesterone, pregnenolone and other hormones to regulate microglial cells. Hormone supplements and injections can be used to boost hormone levels and keep microglial cells at healthy levels.

“These two discoveries are profound. If it had not been for these two things, we would not be doing this seminar. The protocol that I’ve developed is because of these discoveries,” says Tennant.

Treatment Lowers Use of Opioids

Tennant’s treatment protocol is complex and requires the “off-label” use of several different medications. But many of his patients report they’ve been able to lead more productive and active lives, while reducing their use of opioid pain medication.

“It’s allowed me to be more active. I’m less exhausted, I get around better. I don’t have to use a walker as much,” says Rhonda Posey of Texas, who started seeing Tennant in April. “I’m smiling more. I’ve got better spirit and I have hope.”

“I actually believe that I was close to dying last year,” says Nancy Marr of Los Angeles, who suffered from arachnoiditis for a decade before she started seeing Tennant last year. “I went to see Dr. Tennant because my pain physician all of a sudden was threatening to withdraw all of my opioid medication.”

Blood tests revealed that Marr had low hormone levels and her inflammatory markers were “off the charts.” After treatment by Tennant, she’s only taking half the oxycodone she used to need for breakthrough pain.   

“My inflammatory markers are within normal range and my hormone levels are up. I’m feeling much better. I do have flares, but I can do a lot more,” she says.

“I’m on less pain medication now than I’ve been on for years,” said Jerry Davis of Arizona, who believes his back problems stem from a case of meningitis. “I got off the fentanyl. I got off all the other stuff."

Davis said he can usually sleep through the night, no longer has to spend some days in bed, and can lead a fairly normal life.

"I wasn’t in a wheelchair, but I probably would be by now if I hadn’t found him,” he says.

At age 75, Tennant isn’t sure how much longer he’ll be practicing. But he’s determined to share what he’s learned with other doctors, so they can provide the same treatment and hope he's given to arachnoiditis patients. Tennant is planning to host another arachnoiditis seminar in Hattiesburg, Mississippi this October.

I'm Old Enough to Know What Pain Is

By Jessica Link, MD, Guest Columnist

“You’re too young to be in pain!”

Those are the words that I have heard way too often in the last months. I recently moved for a new job opportunity, and though it was the right action to take for my career, it was a nightmare for my pain.

I was diagnosed with rheumatoid arthritis at age 27 and have been through numerous joint surgeries. For any person that suffers from arthritis, no matter your age, you know it can be a very painful disease.

The fatigue, cotton-stuffed brain, and general flu-like muddle that plagues me are tough, but nothing compared to a flare. It’s a burning white, vision-blinding pain that will wake me from sleep if I move the wrong way. It’s a relentless monkey on my back that weighs me down from exercise, work, and a social life. It’s the one thing that can rob me of my will to move or even breathe.

According to most doctors, I am “too young” to have pain. And I am “too young” to take an opioid.

Part of the difficulty I face is that I am allergic to NSAIDs (ibuprofen, naproxen) and will have an anaphylactic reaction if I take them. I use a small dose of tramadol a couple of times a week to take care of the worst days. Most days I use a combination of TENs, massage, exercise, and topical treatments as well DMARDs and biologics.

JESSICA LINK, MD

The pain management doctors in my area refuse to take anyone who is on even the smallest dose of opioids. It took me a long time to convince my rheumatologist that I will not be an addict by taking one pill every few days. The response I get is what many like me have heard: “Opioids are addictive. They will ruin your life.”

This makes my blood boil. Opioids have just as much power to allow someone to live as they do to bring someone down. However, a success story will not get the coverage that abuse and addiction will.

Part of my frustration stems from the fact I have a medical degree and understand all the science behind my disease and the drugs used to treat it. That same degree also allows me to draw upon my experiences caring for patients suffering from addiction.

There are two types of people who are suffering that are united by a common enemy: pain. Some have physical pain and need the medication to live, and others have pain caused by the medication.

Removing the medication does not fix the problem because the pain remains. It only leads to more suffering; suffering that slowly drains life from people. For so long now everyone wants to point fingers, place blame, and label a scapegoat.

However, I feel that every side has played a role in this disaster, below are just a few:

1. Pharma: Improper and misleading advertising.
2. Doctors: Overprescribing at times in an attempt to ease suffering.
3. Government groups: Throwing power around to make laws without thinking through the consequences.
4. Pain patients: We need to take responsibility to safely store our medications, be educated, use pain management tools, and advocate for ourselves.
5. Addicts: Addiction is a disease but getting help and working to be clean is a choice.
6. Media: One-sided stories and outrageous coverage cause more harm than good.

I’m old enough to have opinions. I’m old enough to know right from wrong. I’m old enough to have empathy and compassion. I’m old enough to know what pain is.

Jessica Link started her career as a family doctor before chronic medical issues forced her to shift directions. Now, she works full-time as a medical writer. She lives in Connecticut.

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.

Medicare Drops Pain Questions in Patient Survey

By Pat Anson, Editor

The Centers for Medicare and Medicaid Services (CMS) has caved into political pressure from Congress and healthcare lobbying organizations by proposing to drop all questions related to pain in patient satisfaction surveys.

The proposed rule change is the latest in a series of steps by the federal government aimed at fighting the so-called opioid epidemic by reducing the prescribing of narcotic pain medication. The policies are meant to prevent addiction and abuse, but have left many pain patients without access to opioids, and feeling marginalized and abandoned by the healthcare system.

At issue in the Medicare rule change is a funding formula that requires hospitals to prove they provide quality care through patient satisfaction surveys. The formula rewards hospitals that provide good care and are rated highly by patients, while penalizing those who do not. 

Critics claim that three pain care questions in the survey -- known as the Hospital Consumer Assessment of Healthcare Providers and Systems survey (HCAHPS) -- encourage doctors to overprescribe opioid pain medication to boost their hospital's scores.

"While there is no empirical evidence of this effect, we propose to remove the pain management dimension from the Hospital Value-Based Purchasing program to eliminate any potential financial pressure clinicians may feel to overprescribe pain medications," CMS said in a statement.

"CMS continues to believe that pain control is an appropriate part of routine patient care that hospitals should manage and is an important concern for patients, their families, and their caregivers."

CMS has been under intense political pressure over the last few months to drop the pain questions. In March, 26 U.S. senators sent a letter to Health and Human Services Secretary Sylvia Mathews Burwell claiming "the evidence suggests that physicians may feel compelled to prescribe opioid pain relievers in order to improve hospital performance on quality measures."

Several physician groups have also made the same claim, without offering anything more than anecdotal evidence. Physicians for Responsible Opioid Prescribing (PROP)  said the survey "fosters dangerous pain control practices" and even the American Medical Association recently said the surveys "are clearly motivating forces for opioid prescribing."

A top Medicare official disputed those claims in an article published in JAMA. 

"It has been alleged that, in pursuit of better patient responses and higher reimbursement, HCAHPS compels clinicians to prescribe prescription opioids. However, there is no empirical evidence that failing to prescribe opioids lowers a hospital’s HCAHPS scores," wrote Lemeneh Tefera, MD. “Nothing in the survey suggests that opioids are a preferred way to control pain.”

These are the three pain questions in the CMS patient survey::

During this hospital stay, did you need medicine for pain?

During this hospital stay, how often was your pain well controlled?

During this hospital stay, how often did the hospital staff do everything they could to help you with your pain?

The agency said it would develop and "field test" alternative questions related to pain and include them in the survey. Public comments on the proposed rule change will be accepted until September 6, 2016.

CMS said the rule changes "are based on feedback from stakeholders, including beneficiary and patient advocates, as well as health care providers, including hospitals, ambulatory surgical centers and the physician community."

While some politicians and lobbyists may support the CMS decision, pain patients clearly do not. 

Pain News Network and the International Pain Foundation recently conducted a survey of over 1,250 pain patients. Nine out of ten said patients should be asked about their pain care in hospital satisfaction surveys. Over half rated the quality of their pain treatment in hospitals as poor or very poor, and over 80 percent said hospital staffs are not adequately trained in pain management. 

The Centers for Disease Control and Prevention has adopted guidelines that discourage primary care physicians from prescribing opioids or chronic pain. The Obama administration has also proposed spending over a billion dollars on opioid addiction treatment. Not one cent is proposed for pain research or for funding alternative treatments for pain.  

Post-Operative Chronic Pain Costly for Hospitals

By Pat Anson, Editor

A new study by Canadian researchers has documented the long-term cost that chronic pain can have when patients are sent home from a hospital with post-surgical pain that doesn't go away.

Researchers at Toronto General Hospital (TGH) and University Health Network (UHN) estimate that about 15 percent of complex post-operative patients develop moderate to severe chronic pain, and have significant disability that requires the use of opioids for long-term pain relief.

The estimated additional cost of treating those patients at TGF ranges from $2.5 million to $4.1 million year, due to repeat doctor visits, extended hospital stays, and re-admissions.

On average, chronic pain patients stay five to seven days longer in the hospital for the same condition as patients who do not have chronic pain.

"We need to break the cycle of pain before it becomes chronic. It is much harder to treat someone when the pain is entrenched, and the window of opportunity is lost," says senior author Hance Clarke, MD, who is Director of the Transitional Pain Service in the Anesthesia Department and Pain Management at TGH and a clinical researcher at the Toronto General Research Institute.

Clarke says it takes about six months for post-surgical pain to develop into chronic pain, and it’s important to intervene before that happens. About 13 percent of TGH surgical patients already have chronic pain when the enter the hospital, which can worsen after surgery.

The cost of treating chronic pain in Canada is estimated at between $47 billion and $60 billion a year -- more than HIV, cancer and heart disease combined. It costs about $5,000 a year to care for a chronic pain patient in Ontario.

"Pain is an epidemic, and the costs to the healthcare system, as well as to patients, are staggering," said Clarke.

Up to 70 percent of patients after major surgery are discharged from the hospital with a prescription for opioids. Three months later, over one in four (27%) are still using them.

"Identifying at-risk patients, typically those who have pre-existing pain, mental health issues, chronic use of opioids before surgery, is critical, so that we can develop follow-up plans, and educate patients and other healthcare providers,'' saysClarke. "We need to give patients the tools to manage their pain, should it become problematic."

The study findings are published in the journal Pain Management.

Ironically, the Canadian study highlighting the need for early pain intervention in hospitals comes at a time when politicians and some leading health officials in the U.S. are calling for an end to hospital surveys that ask patients about the quality of their pain care.

The American Medical Association recently said the patient surveys, which are required by Medicare, “are clearly motivating forces for opioid prescribing.”

Medicare says there is no evidence to support that claim, but has proposed dropping all pain questions from the survey.

Medical Marijuana Lowers Prescription Drug Costs

By Pat Anson, Editor

Prescriptions for pain relievers and other medications have fallen significantly in states where medical marijuana is legal, according to a new study published in the journal Health Affairs.

Researchers at the University of Georgia analyzed data from Medicare’s Part D prescription drug program in 2013 – a year when 17 states and the District of Columbia had legalized medical marijuana -- and estimated there was a cost savings of $165 million in prescription drug claims.

The results suggest that if all 50 states had medical marijuana laws that year, the overall savings to Medicare would have been around $468 million.

“Generally, we found that when a medical marijuana law went into effect, prescribing for FDA approved prescription drugs under Medicare Part D fell substantially,” said lead author Ashley Bradford, a recent graduate from the University of Georgia who will pursue her master's degree in public administration this fall.

"The results suggest people are really using marijuana as medicine and not just using it for recreational purposes.”

Compared to Medicare Part D's 2013 total budget of $103 billion, the $165 million in estimated savings only amounts to half of one percent. But it shows the potential for medical marijuana as an alternative to prescription drugs for a wide range of ailments, including pain. Until now, little was known about the impact medical marijuana was having on healthcare spending.

"We realized this question was an important one that nobody had yet attacked," said co-author W. David Bradford, who is the Busbee Chair in Public Policy in the UGA School of Public and International Affairs.

Researchers studied data on all prescriptions filled by Medicare Part D patients from 2010 to 2013, and then narrowed down the results to focus only on nine conditions for which marijuana might serve as an alternative treatment:  anxiety, depression, glaucoma, nausea, pain, psychosis, seizures, sleep disorders and muscle spasticity (stiffness).

The biggest reduction in prescriptions was for analgesics used to treat pain. Doctors in states where medical marijuana was legal wrote an average of 1,826 fewer daily doses for analgesics in 2013.

Currently 24 states and the District of Columbia have laws allowing for medical marijuana. The federal government still considers marijuana illegal, however the Drug Enforcement Administration is reviewing marijuana’s status as Schedule I controlled substance. Reclassifying marijuana could make it legal for medical use in all 50 states.

“Our findings and existing clinical literature imply that patients respond to medical marijuana legislation as if there are clinical benefits to the drug, which adds to the growing body of evidence suggesting that the Schedule I status is outdated,” said Bradford. “Lowering the costs of Medicare and other programs is not a sufficient justification for approving marijuana for medical use, a decision that is complex and multidimensional. Nonetheless, these savings should be considered when changes in marijuana policy are discussed.”

Previous studies have found a significant decline in use of opioid pain medication in patients who use marijuana and that marijuana users are not at greater risk of alcohol and drug abuse.        

Acetaminophen Linked to Autism and ADHD

By Pat Anson, Editor

An over-the-counter pain reliever widely used by pregnant women has been linked to autism and attention deficit problems in their children, according to researchers.

In a new study involving over 2,600 Spanish women and their children, published online in the International Journal of Epidemiology, researchers said maternal use of acetaminophen – also known as paracetamol -- appears to increase the risk of autism spectrum disorder (ASD) in boys. There was also a “weak” association between acetaminophen and attention deficit disorder (ADHD) in both male and female children.

“To our knowledge, this is the first prospective study to report an independent association between the use of acetaminophen during pregnancy and autism spectrum symptomatology in exposed children. It is also the first paper to report differential gender effects of prenatal acetaminophen exposure on neurodevelopment,” the researchers said.

About 40 percent of the women in the study used acetaminophen while pregnant. Their children were evaluated at 1 and 5 years of age.

The researchers speculated that boys may metabolize acetaminophen differently than girls, accounting for the greater risk of autism.

“Animal studies have suggested that male mice undergo greater toxicity than female mice after being administered a similar dose of acetaminophen. Furthermore, the male brain may be more vulnerable to early life stressors  and this could explain why neuropsychiatric disorders of childhood, such as ASC and ADHD, are more prevalent in male children,” they said.

Acetaminophen (paracetamol) is the world’s most widely used over-the-counter pain reliever. It is the active ingredient in Tylenol, Excedrin, and hundreds of other pain medications.

In a review of the study, the UK’s National Health Service (NHS) said researchers failed to prove a clear link between maternal use of acetaminophen and autism or ADHD.

“This research cannot prove paracetamol use is directly responsible for these findings. Not all links were statistically significant – for example, paracetamol was not linked with ADHD when looking at full diagnostic criteria, or with ASD when looking at the full sample of children,” the NHS said. “Importantly, no link was found with developmental or intellectual outcomes in the child.

“The current viewpoint is that occasionally using paracetamol as needed, and at recommended doses, is safe during pregnancy. This study has not provided sufficient evidence to the contrary to change this advice.”

Over 50 million people in the U.S. use acetaminophen each week to treat pain and fever. The pain reliever has long been associated with liver injury and allergic reactions such as skin rash.

Another recent study of pregnant women found that Lyrica (pregabalin) – a medication also prescribed for pain – appears to  increase the risk of major births defects, including heart defects and structural problems with the central nervous system.