Cannabis Gave Me Hope in My Darkest Hour

By Mia Maysack, PNN Columnist

I've lived most of my life with an ongoing migraine -- often trapped in a hazy brain fog induced by prescription medication.  

Suggestions of all kinds of alternatives have been made to me, including cannabis. But it wasn't until my very first headache cluster – which lasted 54 straight days -- that I gave in and the medicinal use of this miracle drug saved my life.

At that point, I hadn't slept in an inhumane amount of time, wasn't able to work, participate in life, or keep food and drink down. Then a friend literally begged me to "take a hit."

Call me a square, but I didn’t take a sip of alcohol until my 21st birthday and had never used marijuana or had the desire to.  What did I have to lose?

I had tried everything else. My arms were still bruised from IV's at the ER. So with absolutely no more craps to give, I lit up.  And almost instantaneously felt better.

I spent a lot of time battling shame for breaking the law and the stigma of marijuana use. But I've evolved to accept my truth. Marijuana is not a gateway drug, unless a person makes the choice to escalate their substance use. No treatment option is meant to be approached as a cure, nor should it be a crutch.   

Marijuana can be ingested in multiple ways, there are countless strains and products without the THC itself -- although that's the key element that eases my ailments. It helps me combat nausea, cultivate an appetite, gives a slight boost in morale, and get quality rest.  

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Cannabis works for me about half the time.  But that goes deeper than a glass half empty or half full.  It's a matter of having a resemblance of a life or not.   

There have been no overdoses or deaths reported from this natural plant. Over two dozen states, as well as our nation's capital, have adapted to the reality that it can be used as medicine.  It has saved and made A LOT of money, lowered criminal activity and rescued many others aside from myself.  

If someone had told me one day I'd be writing about marijuana for the world to see, I wouldn't have believed them.  But my public, unapologetic declaration is that cannabis provided a glimmer of hope during my darkest hour.  I share this not to promote it or advise anyone else, but because I want to raise awareness and demonstrate the courage to step out of your comfort zone.   

I've wounded relationships over this stuff, because not everyone can wrap their minds around it. I've also gotten in a bite sized amount of trouble over it -- munchie pun fully intended. It’s not for everyone but there are good reasons ill patients are being granted access to it. There’s research to support marijuana being helpful in attacking the opioid crisis, both for those struggling with addiction as well as those who are prescription dependent.    

How a person chooses to conduct themselves is a matter of free will. It has nothing to do with whether a CBD oil extract or pot brownie helps them get out of bed in the morning. It’s a matter of self-accountability and self-care. Cannabis saved my life.  

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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.

Learning to Cope With Loss

By Mia Maysack, PNN Columnist

There has never been an employment situation that has not been impacted by my chronic migraines, fibromyalgia and other health conditions. I'm a worker bee but pushing myself too hard for too long while trying to keep up has resulted in my inability to pursue aspirations that are not physically feasible.

The realization of not being able to live up to who you feel like you are is a tough one. A person cannot refrain from asking: What is wrong with me?

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All the while, outsiders ask the same question, most with a hinge of disbelief pertaining to "invisible illness."

She looks and seems fine. Is anything really wrong with her?

In that regard, I've chosen to no longer stress over occasionally needing to wear my sunglasses indoors.

At least people can see those!

It can be a difficult concept to understand, how someone can seem fine one day, then be bedridden for the duration of any given week. Things we may have been able to do, even just the day before, vary moment by moment.

I’ve sensed an undertone of judgement regarding what taking proper care of myself looks like. A few examples of what I mean: 

“Must be nice to lie around in bed all day!”

“You’re still sick?”

“I have headaches too, but still manage to….”

In an effort to alleviate the pressure of these expectations, I've gotten to the point that I do my absolute best to avoid making commitments or plans. I only make them with those who understand my need for sudden disappearances, last minute cancellations, awkward positioning and random yoga stretches.

One of the greatest gifts I've ever given myself is taking good care of and putting myself first. Despite what seems to be a popular belief, that doesn’t mean trips to a day spa or an exotic beachfront. Pursuing self-care for me is the difference between being somewhat functional or a dungeon dweller.

Every time my health interferes with whatever I had my sights on, it’s like ripping gauze off a wound that’s not yet healed. It reopens its own spectrum of painful emotions, often leading to guilt over missing out and all those our absence is impacting. It’s a double-edged sword in a battle I seemingly cannot win.

It can be frustrating, but inward compassion is imperative. Think of it this way: When we know someone we care about is feeling unwell, what do we do? We offer support, advise them to rest, take the time they need, and do whatever is necessary for the sake of their health and healing.

We as chronic pain warriors deserve the same compassion, empathy, respect and self-care. I've learned over the years that forgiveness, patience and grace for ourselves is just as important as having that capacity for others.  

My experience has mostly been a lonesome one. Never once have I had a medical professional ask me how I am coping with these heavy burdens that are anticipated to be lifelong. I have still not been able to fully comprehend the gravity of what that diagnosis means.

It has been an excruciating process to get to where I am now. There's no guide book for this stuff, we gotta just keep trying until we find a way to make all of this serve us -- as opposed to the other way around.

I prefer now to find the positive in changes as they come, not worry about them until they do, and neglect the urge to over-analyze them long after they've arrived.  For me, it’s all about finding the joy, beauty and blessings in the given. There is always something to be appreciated and admired.

We must remain true to ourselves, even through and despite the turmoil of chronic pain. It may not reflect the vision we once had, but there’s no need to look back.  We are not headed in that direction anymore.  

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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.

A Beautiful Catastrophe

By Mia Maysack, PNN Columnist

Having lived my last 18 years with chronic migraines, I have my fair share of headache and migraine "poses." Yet I must admit, they're never as glamorous as what one can find in a fashion magazine. 

There’s a trend in the world of fashion to direct photo shoots in a way that brings attention to the structure of the model’s face or to exaggerate their make-up. They often to do this by framing a model’s face as if they’re experiencing head pain.

This has become known as the “migraine pose” or “headache pose” and they recently caused quite a stir on Instagram and Twitter among those that truly endure these ailments.

“If you don’t have migraine disease please don’t use #migrainepose,” a poster warned a makeup artist who shared some of her work.

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“Wow. Talk about insensitive to true migraine sufferers. Migraines look nothing like this primped model. AWFUL,” wrote another.

“Please admit your ignorance to migraine disease and show your support by instead posting a picture for #shadesformigraine. Help teach others that diseases of any kind should not be mocked,” said another migraine sufferer.  

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I don’t look like any of these models when I have a bad migraine. Ordinarily, I may be hooked up to an IV machine due to severe dehydration or I might be kneeling to the porcelain Gods attempting to combat overwhelming nausea.

There's also light and sound sensitivity, dizziness, vision disturbances, vomiting and fatigue. I describe my pain as a continuous “brain freeze” or feeling like my head was slammed against a wall.

Here are six poses that I have when I go through various stages of defeat, despair, distress, misery, grief and agony.

My most infamous pose of all? I'm nowhere to be found because I remain barricaded in a pitch black, silent room as I pray for the strength not to lose that last shred of sanity I have left and resist the urge to put an end to all of this already.

That image isn't sexy enough to sell magazines, is it? Nevertheless, that's the reality that millions of Americans are forced to live with and there is absolutely nothing pretty about it. 

When experiencing that level of discomfort, people are debilitated and focusing on any task can be impossible. To top it off, there is often no way of knowing how long an attack may last.

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Then there's the heavy emotions, such as guilt for missing out on things or feeling as though we are a burden and letting others down. And there’s the frustration and anger of being sick and tired of being tired and sick.  

People who are not experienced with enduring this type of pain likely don't stop to consider these things. Although we wouldn't wish this lifestyle on anyone, there is a priceless value and basic human need in being validated, acknowledged and understood. We need a pose for that.  

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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.

When Home Feels More Like a Prison

By Mia Maysack, PNN Columnist

Recently, my primary care doctor recommended I go in for a “sleep study,” which is exactly what it sounds like. My immediate thought was, “I've been doing my own sleep study for 28 years, want to know what I’ve learned?”

But jumping through society's hoops is an art form that I've somewhat mastered, so let's flash forward to the appointment that took place weeks later.  

I’m in a closet sized room with a sleep study “fellow” -- meaning I'm going to sit there and essentially explain my whole life story to him, and then I get to do it again with the actual doctor.  

He's asking me about sleep, naturally, so I tell him there’s no sense of regularity as I am fortunate if I get a couple solid hours of sleep a night. I ordinarily never reach my REM cycle, so eventually my body will crash and burn -- resulting in too much sleep that's damaging to my natural rhythm and makes the existing problem worse. 

Chronic pain impacts every aspect of my life, but they have no interest in discussing that because this appointment is only about sleep. How is it productive to disregard the biggest motivational factor in the situation at hand?  Guess I'll have to go to medical school to find out.

Then comes the medication talk, which has actually gotten easier over the years as I've stopped playing the role of a pharmaceutical guinea pig -- hence there being less to discuss. All of the drugs he recommends I have already tried, and I am now only interested in holistic approaches.

This is when he brings up anxiety and depression, almost as ammunition against me -- or so it felt like. Do I consider myself anxious or depressed? How long have I been afflicted?  Then comes a whole new list of pill suggestions that are thought to help anxiety and depression. I feel like we are both wasting our time.

pain art courtesy of painexhibit.org

pain art courtesy of painexhibit.org

"Anyone would feel that way if they endured never-ending, agonizing pain,” I told him.   

He looks at my paperwork, sees that I've selected “homemaker” under employment and proceeds to say, “You don't work, so..."

This remark was declared in such a way as to suggest it is no wonder that I'm not tired, because I don't do anything all day.

"I actually work quite a bit," I objected and proceeded to list my duties.

I maintain the house while my lovely fiancé works. I cook, clean and do laundry. I have ownership over taking care of our doggy daughter, Aiva. I facilitate monthly group meetings, write newsletters, moderate online forums and volunteer countless hours. I also attempt to maintain a bite-size version of a social life and strive to make self-care a priority. 

Oh! And I live within a body that mostly feels as though it is deconstructing from the inside out.

He reported that naps are detrimental to our health, which is a comment I shrugged off because, clearly, he's never been chronically ill and has yet to be a parent.

People may peer into the window of my life and think to themselves how nice it must be to sit around at home all day while a man goes out to earn his keep as well as mine. But I've got some quick facts for anyone that would spend even a split moment envying the life of a chronic pain warrior.

I've been in the process of pursuing disability for just shy of four years -- which I began a decade after I really should have. But I was so hard on myself and likely a bit too proud, for this isn't at all the life I had envisioned. But I am grateful and committed to making the best out of it while demanding my ailments be validated.   

Prior to getting engaged, the place we live in was paid for in full by me. Even after becoming unwell to the point of stepping away from full-time work, I still continued to attempt working part-time outside of the home. But I was digging myself a hole in the ground, which led to the need of accepting even that was not in the cards, which led to the emergency need to access my retirement funds. 

I do not share this information for attention or pity but merely to drive the point home as to how crippling all of this can be on a person, especially over a long period of time. For some of us, home is less a place of tranquility and feels more like a prison.

Yesterday, I cleaned and organized our home, got laundry done, ran some errands and cooked a delicious healthy dinner. Today, I stayed in bed until 10:45 am, didn't leave the house, have difficultly navigating the stairs, hope to vacuum later if able, and have pain in every extremity. 

These are things that this fellow, as well as the doctor that graced us with his 30 second presence, didn’t seem to care about, let alone have the time to begin to understand. 

I'm thankful that I can do the things I can when I am able. It's imperative we take full advantage of the gifts we have while still able to do so, as we never know what tomorrow will bring. All it would take is a slight change in circumstance to make what may feel like the worst even worse.

Living as Spoonies, we are much too quick to accept being dehumanized. We even do it at times to ourselves.  May we all unapologetically let go of the weight of feeling we must somehow justify, explain, excuse or defend ourselves. Do what you can, where you are, with what you have, and know that is it both worthwhile and good enough.  

Benefits from my sleep study appointment include the mention of melatonin supplements, something I've tried in the past and will consider trying again, as well as “light therapy” to promote a regular internal clock which I plan to follow up on.

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Mia Maysack resides in Wisconsin.  She lives with chronic migraine, cluster headaches and fibromyalgia.  Mia is the founder of a wellness and life coaching practice for the chronically ill, and was recently honored by the U.S. Pain Foundation as its “Pain Warrior of the Month.”

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 Approves Third Injectable Migraine Drug

By Pat Anson, PNN Editor

Migraine sufferers will soon have another treatment option. Eli Lilly has announced that the U.S. Food and Drug Administration has approved Emgality (galcanezumab), a monthly self-injected drug for the prevention of migraine in adults.

Emgality is the third injectable migraine drug the FDA has approved this year. In May, the agency gave approval to Amgen’s Aimovig (erenumab), the first migraine drug that uses fully human monoclonal antibodies to target receptors in the brain where migraines are thought to originate.  Last week, the FDA approved Teva’s Ajovy, a migraine prevention drug that can be injected monthly or quarterly.

Lilly said the efficacy and safety of Emgality was demonstrated in three Phase 3 clinical trials in patients with episodic or chronic migraine.

Emgality reduced the number of monthly migraine headache days by an average of 4.7 days in patients with episodic migraine and by 4.8 days in patients with 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.

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“Despite the devastating impact of migraine, only about 10 percent of people living with the disease are currently taking a preventive treatment,” Christi Shaw, president of Lilly Bio-Medicines, said in a statement. “With this approval, we are thrilled to offer a preventive treatment option to adults living with this disease.”

Lilly said Emgality would be available “shortly” at a listed price of $575 for a single injection or $6,900 annually. That introductory price is identical to that of Aimovig and Ajovy, although various discounts or rebates could make the cost lower. Lilly said it would offer Emgality for up to 12 months free to patients with commercial insurance under its patient assistance program.   

“We know the impact high deductible and rising out-of-pocket costs have on families, and Lilly takes seriously our role in ensuring affordable access to Emgality for as many patients as possible,” said Shaw.

Earlier this month, the European Medicines Agency’s (EMA) Committee for Medicinal Products for Human Use issued a positive opinion of Emgality for the prevention of migraine in adults who have at least four migraine days per month. That positive opinion was referred for final action to the European Commission, which grants drug approval in the European Union.

My Guidebook for Living With Chronic Pain

By Mia Maysack, Guest Columnist

Chronic pain can mean a lot of different things, depending on its severity on any given day as well as the seriousness of the condition that causes it. Those of us of who live with it are already at somewhat of a disadvantage, as opposed to others living more carefree lives.

Chronic migraines, for example, make it difficult for me to be able to complete even the simplest of daily tasks due to the confusion, pain, overall sensitivity and over-stimulation they cause.

This creates a mandatory “go with the flow” approach to life due to the unpredictability of symptoms. Plans, appointments, dates, commitments, family gatherings and social activities -- not to mention work -- are constantly needing to be changed, rescheduled or canceled. That gets old fast for us, as well as for everyone our absence affects.

There's no limit to how great of a ripple effect that can have. I have a personal nagging guilt I carry in my heart each time it happens. In an effort to alleviate the pressures, I've gotten to the point where I do my absolute best to avoid making plans.

I may live mostly feeling “under the weather” but at the end of the day and all throughout it I am still a person. I have agendas, hopes, dreams and goals, so please understand the disappointment and frustration I feel from continually placing everything on hold and being powerless to stop it.

Picture this: A thief breaks into your home in the middle of the night. Imagine watching this person tear your home apart, destroy so much of what you care about and worked hard for, yet you are unable to do anything to control the situation or make it stop. That criminal for me are my migraines. They steal a lot from me.

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Several times now, I have had a successful life built only to witness the big bad wolf of head pain come and blow it all down. Then I am confronted with gazing upon the ruins my life and reflecting on how much it took to get there in the first place. I then decide that dwelling in the past will not fix or solve nothing, so I take a deep breath and clean up the mess yet again.  

There has never been an employment situation that has not been impacted by my illness. I'm a worker bee, but pushing myself so hard for so long has resulted in an inability to continue onward with my aspirations. The realization of not being able to live up to who you want to be is a tough one. One cannot refrain from inquiring within, “What is wrong with me?”

All the while, outsiders have the same question, most with a tinge of disbelief: “She looks and seems fine. What, if anything, is really wrong with her?” 

Taking Care of Me First

One of the greatest gifts I've ever given myself is taking care of me first. Whoever is meant to stand by you through this treacherous journey will always be understanding when you do. 

Think of it this way: When you know someone that you care about is feeling unwell, what do you do?  You offer support, advise them to rest, take the time they need, and do whatever is necessary for the sake of their health.

We as chronic pain sufferers deserve the same compassion, empathy, respect and self-care.  I've learned that forgiveness, patience and grace for ourselves is just as important as having those qualities available for others. 

Never once have I had a medical professional ask how I am doing in terms of coping with this heavy burden of a life-long condition. It has been an excruciating process to get to where I am now. There is no guidebook for living with chronic pain. So I created my own.

I prefer to find the positive in changes as they come and to not worry or over-analyze them after they've arrived. For me, it's all about finding the joy, beauty and blessing in the given moment. There is always something to be appreciated and admired.

There's no doubt that an underlayer of sadness accompanies our ailments and it's important for us to understand that is completely normal. It's also crucial to allow ourselves to truly feel that grief. There's no expiration date or time limit on learning how to deal with this crappy hand we have been dealt. We keep our poker faces on as we figure out how to conduct ourselves because folding up or giving in is will never be a suitable option. We are tough and have come too far to do that.

When it gets to be too much and you're not sure how much longer you can hold on, raise your stakes and tell the universe: “Let's do this. I am all in!”

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Mia Maysack lives in Wisconsin. She is lives with chronic migraine and cluster headaches. Mia is a proud supporter of the Alliance for Headache Disorders Advocacy and was recently honored by the U.S. Pain Foundation as its “Pain Warrior of the Month.”

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.

Positivity Is My Survival Technique

By Mia Maysack, Guest Columnist

As a young girl, swimming and diving were my main passions in life. I spent every day at our neighborhood pool, from the moment they opened it until the second they closed -- even on rainy days.  I figured I was already wet and there was a great group of lifeguards. I didn't have a care in the world.

All of that changed at the age of 10 when I developed “swimmer’s ear” -- an infection of the ear canal that is often brought on by water that remains in the ear after swimming.  The water creates a moist environment that aids bacterial growth.  

After a routine visit for ear drops at a local clinic, I returned home to rest. Within a couple hours, I awoke from a nap feeling stiff from my neck on down. It was as if I were suddenly paralyzed. I was terrified. The next few moments felt like an eternity. If my mother had not come in to check on me, I could have died right there in my childhood bed.  

My mom knew something was wrong with her young and healthy daughter, and it wasn't much longer before we were on our way to the hospital. During the ride, I remember feeling the head pain for the very first time.

I also recall feeling upset with my father, because on the way he had all the windows down and I felt so cold.  He also had his rock music blasting, which angered me considering how much head pain I was feeling. I did not realize it then, but he was only doing his best to keep me awake - as I was slipping into a coma. 

After arriving at the hospital in a wheelchair, I threw up all over my poor dad. After profusely apologizing, I fell into a deep sleep. Days passed without anyone having any idea what was going on. When my desperate mother inquired, she was told, "Every moment Mia survives is a miracle."

Eventually it was discovered my body was fighting a grave infection and emergency surgery was required. The bacteria was harbored within the mastoid bone of my left ear. It should have been a relatively quick fix, but during the procedure the surgeons found the bone so infected that it crumbled into tiny pieces. It required hours of focused and careful work. 

After sewing my head shut, I was left to rest in the intensive care unit. It was then that left side of my face began oddly twitching. My family had been through the ringer at this point, but my mother did not leave my side. She noticed this change and called for immediate attention, fearing I was having a stroke or seizure.

MIA MAYSACK

MIA MAYSACK

It turned out there had been bacteria left behind and it was now attacking my facial nerves, which demanded a second emergency surgery. 

This rare experience left me with deafness in my left ear, partial facial paralysis that has turned into permanent facial synkinesis, as well as chronic migraines and daily cluster headaches. Considering the odds I was up against, I often refer to myself as walking miracle. Bacterial meningitis is swift, sometimes deadly and often results in limb removal. So although my entire life had been turned upside down, I knew I was lucky to be alive. 

Although I go through life with a positive and gratitude attitude, my head has been hurting every single day since this happened. We had no way of knowing back then that I would live with the consequences of that experience forever. I am thankful to have learned the concept of mortality at a very young age, as that helped to cultivate core values, morals and choices for myself  -- which kept me out of a lot of unnecessary trouble other kids my age were getting into. 

Upon returning to school, none of my friends wanted anything to do with me. Instead of checking in and asking what happened to me, untrue stories circulated and the teasing began. Children can be downright cruel in middle school and high school, and because I now looked different than everyone else, I was an easy target. I would spend my recess inside the nurse’s office, working with her on facial retraining exercises. I used to glue or tape my eye closed at night, otherwise it would have essentially dried out and I may have suffered vision loss or lost the eye altogether. 

Accepting My Differences

I have come a long way since then with overall acceptance and I embrace my differences because they represent my fight for life, health and well-being. 

Over all these years, I have tried just about every treatment for my pain that anyone could think of. Medications further complicated things, while neglecting to help with the underlying issues.  Diet changes made no difference.  Nor did biofeedback, acupuncture, Botox, dry needling, trigger point injections, herbal remedies, massage, and chiropractic. The list goes on and on. 

I feel a deeply rooted disappointment with our current healthcare system. We have made many powerful discoveries and improvements in medicine, and the breakthroughs are tremendous for many.  I have come across some great personnel within the medical community, however they are few and far between. 

Due to my illness being invisible, I am often either treated as though I am overreacting, flat out lying, drug seeking or being dramatic. At one point I was banned from a pain clinic for missing a few appointments  because I did not feel safe enough to drive myself.

There is a common attitude toward chronically ill patients, that we are not fully taking responsibility for ourselves or our ailments, and a general opinion within society that we should pop an aspirin and shut up already. If only it were that easy or simple. I wouldn't be here writing this if it was. 

Living each day with head pain, among other discomforts, gets in the way of me being able to think straight and living the life I used to envision for myself.  Often overlooked or flat out disregarded is the constant losses the chronically ill are forced to navigate through.

For example, I worked very hard to earn a job at the very same hospital that saved my life, but ultimately had to step down because they were unwilling to accommodate my need to work fewer hours. I've also had to drop out of college multiple times because they are not set up to cater to the needs of those who suffer from debilitating pain. 

Within the past year and a half, my daily pain scale number of 5/6 has escalated to a 7/8, which has been devastating. Due to high demand, getting in to be seen at a pain clinic (if you are fortunate enough to have one in your area) can take months. When you've been stuck in a cluster headache for 90+ days, it's only natural to feel isolated and alone. There are times I have asked myself how or if I am able to go on like this. 

Our health is one of the most important things in life. That truth is what led me to pursue patient advocacy so passionately. I began witnessing other people getting treated the same way that I was, and it sparked a fire to advocate for the sake of them as well. 

I am living proof that we are far more than any diagnosis. Positivity has become a survival technique as well as a coping mechanism for me. It has led me down a path of holistic wellness through mindfulness and the humble reminder that -- although things could definitely be better -- they could have been much worse.  

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Mia Maysack lives in Wisconsin. Mia is a proud supporter of the Alliance for Headache Disorders Advocacy and was recently honored by the U.S. Pain Foundation as its “Pain Warrior of the Month.”

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.

Migraine Costly to Workers and Employers

By Steve Weakley

Most employees who suffer from chronic migraine headaches miss nearly a full week of work (4.6 days) due to migraines each month, according to a large new online survey.

Amgen and Novartis surveyed over 11,000 migraine sufferers in 31 countries to demonstrate how painful and costly the condition can be for both workers and employers.  The My Migraine Voice survey included people who had four or more migraine days a month.

Eighty percent of the survey takers in the U.S. said their employers knew about their migraines, but only 21 percent said their bosses offered support and understanding. Nearly two-thirds (63%) said migraines impaired their work performance and many felt judged by co-workers as a result.

"From being afraid to speak up about their disease at work in fear of losing their jobs, to feeling judged by colleagues, the stigma around migraine in the workplace is an ongoing issue that the migraine community faces daily," said Mary Franklin, executive director of the National Headache Foundation, in a press release.

"The findings from the My Migraine Voice survey shed light on the true impact of migraine at work, and showcase the urgent need for employers and employees to change the dialogue around migraine."

According to one estimate, U.S. employers lose about $11 billion a year in missed work and lost productivity because of migraines.

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Amgen and Novartis presented the survey findings at the 60th annual meeting of the American Headache Society in San Francisco, to help stir up interest in their new injectable migraine drug, Aimovig (erenumab). The FDA recently approved the monthly self-injected drug for the prevention of migraine in adults.

Aimovig uses human antibodies to target brain receptors that are thought to trigger migraines. Three clinical trials demonstrated that the drug reduced the number of migraine days for sufferers by an average of 2.5 days per month.

One obstacle in getting people to try Aimovig is its price. Amgen say the drug will cost about $6,900 a year, or $575 for each monthly dose. Amgen holds the sales rights for Aimovig in the United States, Canada and Japan, while Novartis will sell the drug in Europe and the rest of the world.

Amgen is offering a migraine management program to several large U.S. employers. The program consists of an educational program as well as a research study to document the impact of migraine on worker absenteeism, presenteeism, healthcare utilization and costs. The wellness portion of the program includes webinars, email and website tips, and a  mobile app to track migraine symptoms.

FDA Approves Injectable Migraine Drug

By Pat Anson, Editor

The U.S. Food and Drug Administration has approved a monthly self-injected drug for the prevention of migraine in adults.

Aimovig (erenumab) is the first FDA-approved migraine treatment in a new class of drugs – known as fully human monoclonal antibodies -- that target receptors in the brain where migraines are thought to originate. It blocks the activity of calcitonin gene-related peptide, a molecule involved in migraine attacks.

"The FDA approval of Aimovig represents a long-awaited and important therapeutic development for patients and their physicians who are in need of additional treatment options for the prevention of migraine," said Sean Harper, MD, executive vice president of Research and Development for Amgen, which shares the licensing rights to Aimovig with Novartis.

The effectiveness of Aimovig for the prevention of migraine was evaluated in three clinical trials, which found that patients experienced one to 2.5 fewer migraine days per month compared to those who took a placebo. The most common side effects were irritation at the injection site and constipation. 

Like many specialized drugs used to treat chronic conditions, Aimovig comes with a hefty price tag. Amgen says the drug will cost about $6,900 a year, or $575 for each monthly dose.

Out-of-pocket costs will vary for patients depending on their insurance. Amgen has a co-pay program for Aimovig that could reduce the cost to as little as $5 per month for eligible patients.

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The company says Aimovig will be available to patients within one week.

"Aimovig offers self-administration with proven efficacy across a spectrum of patients, including in those who have previously tried other preventive therapies without success," said Stewart  Tepper, MD, professor of neurology at the Geisel School of Medicine at Dartmouth Medical School. "Importantly, in clinical trials, Aimovig patients were able to start and stay on therapy – with a discontinuation rate of two percent due to adverse events – and experienced sustained migraine prevention."

Migraine is thought to affect 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 also cause vomiting, blurriness or visual disturbances, and sensitivity to light and sound. Women are three times more likely to suffer from migraine than men.

About one-third of migraine sufferers can predict the onset of a migraine because it is preceded by an aura – a sensory or visual disturbances that appear as flashing lights, zig-zag lines or a temporary loss of vision. People with migraine tend to have recurring attacks, triggered by stress, hormonal changes, bright or flashing lights, lack of food or sleep, and diet.

Amgen and Novartis expect Aimovig to be approved in the European Union in the next few months. Amgen holds the sales rights for Aimovig in the United States, Canada and Japan, while Novartis will sell the drug in Europe and the rest of the world.

Growing Abuse of Gabapentin

By Christine Vestal, Stateline

Doctors who are cutting back on prescribing opioids increasingly are opting for gabapentin, a safer, non-narcotic drug recommended by the Centers for Disease Control and Prevention.

By doing so, they may be putting their opioid-using patients at even greater risk.

Recently, gabapentin has started showing up in a substantial number of overdose deaths in hard-hit Appalachian states. The neuropathic (nerve-related) pain reliever was involved in more than a third of Kentucky overdose deaths last year.

Drug users say gabapentin pills, known as “johnnies” or “gabbies,” which often sell for less than a dollar each, enhance the euphoric effects of heroin and when taken alone in high doses can produce a marijuana-like high.

Medical researchers stress that more study is needed to determine the role gabapentin may have played in recent overdose deaths. However, a study of heroin users in England and Wales published last fall concluded that combining opioids and gabapentin “potentially increases the risk of acute overdose death” by hampering breathing and reversing users’ tolerance to heroin and other powerful opioids.

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Kentucky last year classified gabapentin as a controlled substance, making it harder for doctors to prescribe it in copious quantities and for long durations. The new classification also allows police to arrest anyone who illicitly sells the drug, although the state’s drug control chief, Van Ingram, said that was not the intent of the new law.

In the last two years, Illinois, Ohio, Massachusetts, Minnesota, Tennessee, Virginia and Wyoming also have moved to control the flow of gabapentin by requiring doctors and pharmacists to check a prescription drug database before prescribing it to patients to make sure they aren’t already receiving gabapentin, or some other medication that interacts with it, from another physician.

In a statement to Stateline, Pfizer communications director Steven Danehy said, “Reports of misuse and abuse with this class of medicines are limited and typically involve patients with a prior history of substance abuse, including opioids.”

The drugmaker also pledged to “continue working with regulatory authorities and health officials to evaluate and monitor the safety of these medicines.”

Prescribed for Many Conditions

Approved by the FDA in 1993 for the treatment of epilepsy and the nerve pain associated with shingles, gabapentin is sold by Pfizer under the brand name Neurontin. A generic form of the drug has been available since 2004 and is now sold by several other companies as well.

Gabapentin is now one of the most popular prescription drugs in the United States, according to the New England Journal of Medicine. It was the 10th-most-prescribed medication in 2016. Its more expensive cousin, pregabalin, sold as Lyrica and also made by Pfizer, was the eighth best-selling.

Many doctors recommend gabapentin to patients for a long list of disorders, including hot flashes, migraines, restless leg syndrome, fibromyalgia, and neuropathic pain associated with diabetes and spinal injuries. Some doctors also prescribe it for anxiety and insomnia.

Now, research is underway to determine whether gabapentin may be effective as a treatment for alcoholism.

Already, it is widely used to ease the symptoms of drug and alcohol detoxification. And addiction specialists routinely use gabapentin to manage pain in people who are either addicted or at risk of addiction to opioids and other substances.

Alone, high doses of gabapentin have not been found to affect breathing. The vast majority of gabapentin deaths, about 4 in 5, also involved opioids, according to the journal Addiction.

People who stop taking the medication abruptly, however, can suffer withdrawal symptoms such as trembling, sweats and agitation.

In February, Food and Drug Administration director Scott Gottlieb said the agency was reviewing the misuse of gabapentin and, for now, had determined no action was necessary. Similarly, the CDC has not issued a warning about gabapentin, nor has the Drug Enforcement Administration.

(Editor's note: the CDC opioid guidelines recommend gabapentin without any mention of the risk of abuse or overdose associated with the drug, or of possible side effects such as weight gain, anxiety and mood disorders.)

Early Signs of Abuse

In Kentucky, Ingram said it has been clear to police and pharmacists for the last three or four years that gabapentin was becoming an increasingly popular street drug. “People were seeking early refills, claiming they lost their prescriptions and openly conducting transactions in parking lots outside of drug stores,” he said.

But since it wasn’t a controlled substance, nothing was done about it. That’s likely to start changing with the new law, he said.

“Misuse of gabapentin is just one more collateral effect of the opioid epidemic,” said Caleb Alexander, an epidemiologist at Johns Hopkins University who has been studying the heroin and prescription drug epidemic. When one drug becomes less available, drug users historically seek out alternatives, he said. “What is most surprising is the sheer magnitude of its use.”

The share of Appalachian drug users who reported using gabapentin to get high increased nearly 30-fold from 2008 to 2014, according to a 2015 study in the American Journal of Psychiatry.

Paul Earley, an addiction doctor practicing in Georgia and a board member of the American Society of Addiction Medicine, said, “We knew that a small subset of our addiction patients would abuse gabapentin.” But he said it wasn’t until 2016, when Ohio sounded an alarm about the drug’s association with overdose deaths, that addiction doctors started taking the problem more seriously.

“For years, we considered gabapentin to be ‘good for what ails you,’” Earley said. “But I’m much more cautious than I used to be. If there’s anything we’ve learned from the opioid epidemic, it’s that we need to rethink how we prescribe drugs we once assumed were safe.”

This is story is republished with permission by Stateline, an initiative of The Pew Charitable Trusts.