Don’t Add to My Pain

By Mia Maysack, PNN Columnist

This month I celebrate the anniversary of finally getting a fibromyalgia diagnosis, after years of fighting to “earn” it. To my lifelong course of chronic migraine was added a heaping side dish of a nerve disorder.

Intractable pain is a constant state of being for me, whether I use essential oils, think positive, drink pickle juice for 40 days and nights, or even if someone belittles, disbelieves, mocks or minimizes it.    

People often say things like "I wouldn't be able to make it” if their head hurt like mine does every day. For many, there's no possible way to imagine what it is like, but I'm finding that those who cannot relate at all often have the most opinions about it.

Others wonder how I've been able to accomplish what I have while under the persistent weight of brain discomfort. The answer is simple: Because I've had no other choice!

When not entirely incapacitated, head pain for me has been managed with a grateful attitude and a mind over matter approach. Unfortunately, when navigating matters of the physical body, more restrictions apply.  Neither deep breaths nor the tapping of my ruby red slippers will get me up or down the stairs when I'm unable to walk. 

Many around me have taken all of this personally, because the extent of the hardships I face have left me trapped behind closed doors more than ever. 

Instead of stopping by or reaching out to check in, entire relationships have changed -- primarily because my ailments have yet to be acknowledged, let alone respected.

Only recently did others finally begin to grasp the concept of my migraine and cluster headaches.

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But wrapping their minds around something else? Especially when I lack the energy and desire to continually attempt to justify or explain? Forget about it. 

One thing about me is that I rarely ever complain. I'm known to seek out silver linings and hand the light I find over to the next person in need. I count my blessings on a regular basis and never lose sight as to how much worse things could be or how they can change in the blink of an eye.

So, when attempting to bare my soul while being met with judgment, doubt, questioning or just flat out disregarded, I wonder if those who respond that way ever stop to reflect. Shifting blame toward me or my conditions for our lack of fellowship or communication doesn’t help the relationship.   

Not long ago I was out at a dinner, constantly having to shift in the chair or get up to stand, while repeatedly being reminded what we're conversing about due to brain fog. All the while my head is banging and I can barely eat because the nausea from attempting to ignore everything else was heightening.   

The dear one I'm out with mentions another friend who endures similar circumstances. He proceeds to explain how he's had to carry this person out of places and into their home due to the extent of their fatigue. Hearing this tears me up because I can literally feel for them.  

But instead of using this opportunity to bond, my emotion was met with ridicule: "You are SO sensitive! I cannot talk about ANYTHING with you!"  

It felt like insult to injury, that they'd demonstrate compassion for another but then put me down.   

Before that, someone else I love labeled my chronic pain as a "placebo effect." More recently, even after discussing my disability hearing, a friend wondered if I had a gym membership because they didn’t want to work out alone.  

Not that it is blasphemous to bring up the topic of exercise, but it showed a lack of empathy. If I am in need of using a cane, not always able to drive, experience muscle failure and soreness to the touch, what about that signifies my readiness to lift weights or hop on a treadmill?

I used to go out dancing regularly, but the last time was about 24 months ago for an ex co-worker's bachelorette party -- whose actual wedding I ended up missing because of all this. Another homie of mine hasn't replied to me since I'd been forced to cancel attending her kid’s birthday party at the last minute.  

Quite honestly, if I keep in contact with just about anyone, it's because I initiate the connection. Many have flat out stopped talking to me altogether because my consistent need for self-care is an inconvenience for them.  

What they don't know is that all of this is so real. The other day, I purposefully went outside in the rain to pre-shower, because with Mother Nature's help the chore felt slightly less daunting. 

Having been dealt this hand and then being left to cope on your own has a way of demonstrating the extent of one’s strength they may not have realized they had. I am thankful for everything that broke me because that’s what I am made of.

I now declare unapologetically that all of this has forced me to change. Nothing is welcome in my life that adds more hurt or disrupts my peace. My hope is that everyone reading this reaches the same conclusion and thereby a level of freedom.    

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Mia Maysack lives with chronic migraine, cluster headaches and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill.

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.

Experts Advise Against It, But Opioids Often Used to Treat Migraine

By Pat Anson, PNN Editor

Too many Americans are still using opioids to treat their migraine headaches, according to migraine experts who say opioids are generally not recommended for migraines and could even cause more headaches.

In a recent online survey of 20,000 migraine patients, 19 percent said they were currently using opioids to treat migraine -- up from the 16 percent reported in 2009 in the American Migraine Prevalence and Prevention Study.

“These data show that, despite the known potential risks of using opioids for migraine, far too many continue to do so,” said Sait Ashina, MD, a neurologist and Director of the Comprehensive Headache Center at Beth Israel Deaconess Medical Center. “It’s concerning that people may be using these drugs in place of conventional therapies proven to be safer and more effective for migraine.”

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Clinical guidelines from the American Headache Society (AHS) encourage the use of triptans and nonsteroidal anti-inflammatory drugs (NSAIDs) such as aspirin and ibuprofen as first-line treatment for migraine.

Because opioids can increase the frequency of migraines or lead to medication overuse headaches, opioids are typically reserved for patients when triptans and NSAIDs don’t work or are contraindicated. 

The survey found that nearly a quarter of the patients who reported four or more migraines per month were using opioids to treat pain, and more than half of them reported taking opioids at least once to treat a migraine headache. 

The survey is part of the ObserVational Survey of the Epidemiology, tReatment and Care Of MigrainE (OVERCOME) study, which is funded by Eli Lilly. The company makes Emgality, an injectable non-opioid drug that reduces the frequency of migraine.

“OVERCOME showed that, overall, opioids are being used in place of medicines that are approved and indicated to treat migraine – particularly among those who experience migraine headaches more frequently,” said Ashina, who is a paid consultant for Eli Lilly.

A separate analysis of over 21,000 migraine sufferers in the OVERCOME study found that patients who used opioids were more likely to experience depression or anxiety when compared to those who never used opioids.

Opioids Overprescribed to Children

Other studies presented last month at the American Headache Society’s annual meeting indicate that opioids are overprescribed to children with migraine.

In an analysis of nearly 14,500 emergency room visits by adolescents and young adults with migraine, opioids were ordered 23% of the time within 12 hours of admission. In more than half of those cases (58%), an opioid was ordered as first-line therapy. Rates of opioid prescribing for migraine did significantly decrease during the study period, from 2010 to 2016.

Another study presented at the AHS annual meeting found that nearly one of every six children who receives medication for migraine or headache during their first medical visit was prescribed an opioid. The rates were even higher among older teens, with one of every four prescribed an opioid during the 2009 to 2014 study period.

“Opioids are generally not recommended for the treatment of migraine due to limited evidence for efficacy, the risk of dependence and the evidence that opioid treatment is a risk factor for headache exacerbation. The very medication that relieves pain short term may lead to the onset of chronic migraine,” said Richard Lipton, MD, a former president of the American Headache Society.

Migraine affects a billion people worldwide and about 36 million adults in the United States, according to the American Migraine Foundation. In addition to headache pain and nausea, migraine can cause vomiting, blurriness or visual disturbances, as well as sensitivity to light and sound. Women are three times more likely to suffer from migraine than men.

Invisible Illness and Disability

By Mia Maysack, PNN Columnist

A final once over in the mirror. I straighten my navy-blue blazer and fastened the top button on the very first dress shirt I've ever owned, reflecting upon how grueling the process has been.

Pursuing a disability case was an absolute last option for me.  Being a contributing part of the workforce is something I not only enjoyed very much, but it made up part of my identity.

There were moments I was unsure if I'd even make it to this point, but I'm grateful to have an opportunity to exercise the right to represent myself at my disability hearing without a lawyer.

When sharing this viewpoint with others, I've mostly been advised against it but the route of legal assistance proved a dead end for me (see “Taking Control of My Disability Case”). Other recommendations included: Do not smile or dress nice, don't show much personality at all, or mention hobbies like volunteering because it could be considered contradictory to my claims.

Being differently enabled does not make me any less of a person so I refuse to act as such. It’s frustrating to feel as though you've got to convince others of your truth and, as hard as you try, they still may not “get it.”

I'm aware that my illnesses aren't visible to outsiders and because of that they are questioned. I showed up to provide an authentic glimpse as to what invisible illness can look like and how it has impacted my life.

I live in a constant state of post-infection intractable chronic migraine -- head pain that has never gone away since the year 2000. This pain is expected to be life-long and incurable.

There are also daily cluster headache attacks, which are an entirely different beast. The cherry on top comes in the form of my nerves being hyperactive, resulting in a diagnosis of fibromyalgia.

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These conditions fluctuate. One day looks different than the next, but even at my absolute best there is still pain. Things can turn for the worse at any moment without warning and constant breaks are required for even simple tasks. I am not able to function optimally in a gainful work place environment, despite my countless attempts at trying.  

Between the nausea/vomiting, light sensitivity/vision disturbances, persistent fatigue, brain fogginess and the on-going discomfort, there hasn't been a single aspect of my life that has not been negatively impacted: relationships, activities of daily living, employment, higher education,  goals, dreams, aspirations....

I prolonged beginning the disability process due to the fact that I'm aware so many have it worse than me. I am thankful for my senses, mobility, the fact I can use the restroom on my own and feed myself, although there are periods daily when I can be entirely incapacitated.

Over the years, 34 prescriptions have been written for me -- all worsening matters as a result of the side effects. About 1,800 injections have been administered.

I now take full responsibility for my own wellness and have completely revamped my lifestyle to accommodate my conditions. I’ve also found a new passion for patient advocacy as a way to find a purpose in all of the agony, leading to the reality that I am my own best expert. It's empowering to be armed with knowledge on behalf of the millions who live with headache and migraine disorders.

While conveying this information at my hearing, I experienced more emotion than anticipated, especially when a friend took the stand to provide testimony as a witness. She reminisced on how we used to go dancing together and described how we could be so carefree. But over the years what seemed to have started as a slight hindrance turned into an everyday occurrence, rippling into less and less quality time spent. This took a toll on us both.  

I can only hope it came across that migraine matters, that it burdens us all, and everyone should care about disabilities because it only takes a slight change in circumstance to alter your life forever. I didn't choose to struggle every day with getting out of bed, to have much of my time flat out stolen, or to have many memories tainted by the relentlessness of my chronic pain.  

While awaiting word back on a decision, I cannot help but wonder. How many more times will they want to see and hear from me? I've already come thus far and I'm not giving up! 

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Mia Maysack lives with chronic migraine, cluster headaches and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill.

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.

FDA Clears New Wearable Device for Migraine

By Pat Anson, PNN Editor

A neuromodulation device worn on the arm and controlled by a smartphone has been cleared by the Food and Drug Administration for the treatment of acute migraine. The Nerivo Migra device was developed by Theranica, an Israeli medical technology company, and is expected to be available in the U.S. later this year.

The FDA’s market authorization is based on the results of a double-blind, placebo-controlled study of Nerivo Migra involving 252 migraine patients at 12 headache clinics in the U.S. and Israel. The study findings were recently published in Headache: The Journal of Head and Face Pain.

Over two-thirds of patients who wore the device for 30-45 minutes during a migraine attack experienced pain relief two hours after treatment, compared to only about a third of those who wore a sham device. For many, the pain relief was sustained 48 hours after treatment.

THERANICA IMAGE

THERANICA IMAGE

"The results of the study demonstrate a high efficacy ratio for single as well as multiple attacks, both at two and 48 hours after treatment," said lead investigator Dr. Brian Grosberg, MD, director of the Hartford Healthcare Headache Center in Connecticut.

Placed on the upper arm, Nerivio Migra uses smartphone-controlled electrical pulses to disrupt pain signals. At this time, the device is only indicated for acute treatment of migraine with or without aura in adult patients who do not have chronic migraine. But company officials say it shows potential as a treatment for other pain conditions.

"We have identified at least 7 different painful conditions that may be relieved by this non-invasive, drug-free technology after appropriate clinical development," said Alon Ironi, CEO and co-founder of Theranica. "While the company is preparing to launch the Nerivio Migra in the United States market later this year at an affordable price, we remain committed to continuing our clinical development, expanding the use of remote electrical neuromodulation therapy for additional indications.”

Theranica has not disclosed what its “affordable price” will be. Over the next four months, the company said it would begin a series of clinical studies of Nerivo Migra at 30 headache clinics in the U.S. to assess patient selection and correct product use.

A handheld neuromodulation device – called gammaCore –  is currently available for about $600 to treat migraine and cluster headache.  Another device used to treat migraine – called Cefaly – is worn on the head and costs about $350. A new class of injectable migraine drugs is even more expensive, costing about $7,000 a year or $580 for each monthly dose.

"Over the last 20 years my colleagues and I have used triptans and ergots for acute migraine treatment. There is a large unmet need for new treatments in this population when these medications are not effective, are contra-indicated, or have non-tolerable side effects,” said Stephen Silberstein, MD, a member of Theranica’s medical advisory board.

“In addition, triptans and most current acute migraine medications, including over-the-counter drugs indicated for migraine, are associated with medication-overuse headache, which is associated with increased frequency of migraine attacks, and often results in chronic migraine.”

Migraine affects a billion people worldwide and about 36 million adults in the United States, according to the American Migraine Foundation. In addition to headache pain and nausea, migraine can cause vomiting, blurriness or visual disturbances, as well as sensitivity to light and sound. Women are three times more likely to suffer from migraine than men.

Shades of Grey

By Mia Maysack, PNN Columnist

A blonde walks into the mall, minding her own business, and sits down at a table in the food court.

A random dude calls out, "Don't you know it's rude to keep sunglasses on in here?"

That line felt like a punch to me.

"Well good sir, what can I say? My migraine lacks proper manners."

Yes, I wear sunglasses indoors because I'm cool like that. But it's also because after living with persistent and debilitating head pain for almost two decades, I need to wear sunglasses as a shield against the brutal assault of fluorescent lighting.

And sunglasses are one of the few ways I can make my seemingly non-existent illness visible to the rest of the world.  

There are specially designated migraine glasses that provide relief by strategically dimming light. Brightness levels on cell phones and other devices can also be turned down by a special app that filters blue light.   

Despite these helpful tools, walking under the bulbs in any public place feels as though light is raining down on me and, like a sponge, absorbing all of my energy.

That is why a trip to the grocery store could go well, but afterwards I'm out for the count and barely able to make it up the stairs.

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Within the last couple years, my mobility has continued to be compromised -- especially when it comes to either sitting (driving) or shifting positions (sitting to standing). At a conference recently, after noticing my navigation or lack thereof, a dear colleague suggested what I had been silently dreading: the possibility of using a cane. There's nothing wrong with canes, I'm grateful for all medical devices, but suffice to say they aren’t exactly what I had pictured at the ripe old age of 29.  

I've become accustomed to losing a lot as a result of chronic pain and illness, but confronting a limited physical future is my newest anguish.

The combination of chronic cluster headaches, daily intractable migraines and now fibromyalgia not only heighten the pain scale number, it hinders even the simplest of daily tasks. It impacts the few things I am still able to do that bring me joy, such as participate in creative body movement through yoga or dance.

I smirk thinking back to the days I could go out and dance for hours on end. There's a certain spark that comes alive in me when bass throbs its way through a loudspeaker. I'm quite aware that is contradictory to head pain, yet somehow, I cannot live without it. My soul begins to vibrate in the most calming way as I am enticed by the rhythm and it takes over.

Fast forward to today and I'm fortunate to get a couple minutes of dancing in before symptoms worsen. I cannot go as hard or as long as I used to, but it has caused an evolution in my movement, leading me to a whole-body present moment acceptance.  

Last week at an appointment, I mentioned that a cane will likely be needed daily in the near future. Initially the provider skipped over the remark entirely, but when I brought the conversation back around to ensure we were on the same page, she reacted with “Oh yes, your question about a cane.” 

I don’t recall needing an answer so much as an acknowledgement, as I do not feel the need to ask for permission to do what’s going to be best for myself. 

It’s never too far from my mind that I walked away from bacterial meningitis. If it is now catching up to me, there’s never an ideal time for that to happen and I am fortunate to have had moments with an abundance of blessings. No matter how dark life can get, it’s imperative we make the absolute most of every breath and make a conscious commitment for the sake of ourselves to never give up. 

Whether we live inflicted with physical ailments or not, none of us know what the future holds, nor when our number may be up. All it takes is a slight change in circumstance to alter our lives forever, so we must take time to appreciate and find ways to enjoy the gifts we have. 

The blonde kept the shades on and walked out with her cane like the bad ass that she is!      

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Mia Maysack lives with chronic migraine, cluster headaches and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook support group, and Peace & Love Enterprises, a wellness coaching practice focused on holistic health.

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.

My Daily Persistent Headache

By Warren Cereghino, Guest Columnist

Waking up from my pre-work noontime nap one October day in 2007, I had a headache.  I still have it.

Thinking little of it at the time, I took two acetaminophen capsules (maybe Tylenol; maybe the generic from CVS or Costco) and headed off to work. 

I toiled nightly in a Los Angeles television station’s news department, where I was a news editor contributing to the nightly 10pm newscast.  I liked the work and didn’t mind the night schedule because it kept me out of mischief and off the streets.

That first night, the headache persisted.  And it just never stopped.  Over the next few weeks, I was gobbling pain relievers of one form or another every four hours, all the while trying to find the cause and a cure with all sorts of practitioners.

A little research taught me that this was known as “New Daily Persistent Headache.”  It sure as hell was persistent.

My journey took me to the offices of two different chiropractors who had successfully treated the persistent headaches of two referring friends (one was my daughter-in-law, who is a RN).  Both doctors tried, and both were unable to make it go away. 

Next, I tried acupuncture. That didn’t work, either. 

WARREN CEREGHINO

WARREN CEREGHINO

Meanwhile, I kept gobbling acetaminophen and ibuprofen like they were candy.  Determined to find the cause, I turned to neurologists. Two doctors who were with separate practices in Santa Monica evaluated me, had me undergo a scan and tried to figure it out, but to no avail.

By year’s end, I was still struggling with the debilitating effects of the headache and despairing of ever finding the elusive cause and cure. I had to face the fact that the only avenue open to me appeared to be pain management.  

In January 2008, I went to see David Kudrow, MD, whose neurology practice in Santa Monica specializes in pain management.  He treats patients and conducts research.  Dr. Kudrow gave me a thorough interview and then prescribed a nightly dose of 10mg of Elavil, an anti-depressant.

I cannot remember what he predicted in regard to when it would take effect, but a few weeks later I encountered a young man who’d grown up across the street from me and was now a practicing pediatric neurosurgeon.  He said he agreed with the prescription and told me it would take about a month to take effect.  He was right. 

Over the years, the dosage of Elavil (or its generic amitriptyline) has had to be increased, first from 10mg nightly and then to 20mg.  A couple of years ago Dr. Kudrow bumped it up again to 30mg nightly.

Recently he suggested I try to scale back to 20mg nightly. I tried, but it didn’t work. The 20mg dosage didn’t offer enough pharmacological firepower and I went back to 30mg after about ten days. 

Dr. Kudrow saved my life.  I have other health issues, but without his help in pain management I wouldn’t even be able to address the other issues of hypertension, diabetes and pre-clinical heart disease. I’m two months shy of turning 82 as of this writing.  Without Elavil, I would be dead.

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Warren Cereghino is a retired TV news producer, writer and editor who spent 55 years at TV stations in Phoenix, Sacramento, San Francisco-Oakland and Los Angeles.  Warren is a graduate of Arizona State and a military veteran who served during the Berlin Crisis of 1961. 

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.

Advocating for Migraine and Headache Research

By Mia Maysack, PNN Columnist

This week I had the privilege of attending the 12th annual “Headache on the Hill” lobbying event in Washington, DC, which is organized by the Alliance for Headache Disorders Advocacy (AHDA). This was my second time being involved and I plan to attend for as many years as possible.

Headache on the Hill is a two-day engagement that began with a briefing for over 160 advocates who traveled to Washington from around the country. This is when we heard from experts and learned how to strategize, focus on what we want to achieve, and get an opportunity to engage and ask questions.  

Early the next morning we had a headache policy forum breakfast and heard from Rep. Andy Harris, MD (R-Maryland), who lives with cluster headaches and is passionate about our cause.

“If we have to drag the federal government kicking and screaming into a modern age on treatment of pain syndromes, including headache pain syndromes, migraine, cluster headaches - we'll do it and I'll be there with you every step of the way," Harris said.

After breakfast, we all joined together to venture as a group to Congress to meet with our representatives and shares our stories on the struggles we face as migraine and headache sufferers.

ALLIANCE FOR HEADACHE DISORDERS ADVOCACY

ALLIANCE FOR HEADACHE DISORDERS ADVOCACY

Most important is the need of more funding for research on headache disorders. Only through research do we possess a chance at ever understanding all the layers of this complex medical problem.

Headache disorders affect more than 90% of Americans and cost the economy $31 billion every year in lost productivity, yet less than 1% of the budget for the National Institutes of Health (NIH) is spent on headache and migraine research.

We are not attempting to suggest that our cause is more worthwhile than others. We're merely pointing out that we are on severely unequal ground. How is it that so many millions of Americans are enduring migraines and headaches, yet it is the least funded field of medical research? 

We know that chronic migraine is the second leading cause of global disability and cluster headache has the deserved reputation of being "the most severe pain that humans can experience." I have endured both in some form every day for almost 20 years straight.

Is there a logical reason why 59% of Americans impacted by chronic migraine who seek refuge in emergency departments receive opioid medication? Opioids can worsen the severity and frequency of migraines. Meanwhile, we have to fight for other treatments such as oxygen therapy, which has been proven to assist in decreasing cerebral blood flow and lessen the pain of cluster headaches. Oxygen is natural, has no side-effects and is non-habit forming, which are the approaches the NIH should be investing in.

Breath work and mindfulness meditation have also changed the game for me personally and I am grateful to declare that discipline in those practices has led to an overall heightened sense of awareness, which actually helps me with coping.

We've recently been fortunate enough to have several injections introduced as preventative treatments for migraine. That’s a great start -- though many of us are unable to gain proper access to these expensive treatments due to our circumstances.

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The bottom line is that by showing up in D.C. and by advocating every chance we get in regular everyday life, we can make progress in raising awareness and funding for more research. Our efforts during Headache on the Hill were well received. Advocates from over 40 states attended, our meetings were empowering and there was empathy for our stories.

I am extraordinarily grateful to the members of Congress that made time to meet with us, the advocates who were alongside me for this adventure, and everyone who has or will participate in Headache of the Hill. 

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Mia Maysack lives with chronic migraine, cluster headaches and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook support group, and Peace & Love Enterprises, a wellness coaching practice focused on holistic health.

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.