Advocacy and Awareness Should Promote Healing, Not Division

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By Mia Maysack, PNN Columnist

June is Migraine and Headache Awareness Month in the United States. This year’s theme is “Advocate for Access.” 

Although I understand the intent behind awareness months, to those of us who truly live with a non-stop condition, they can border on being a tad mundane. Especially when the execution of the awareness itself does very little to propel us forward in any meaningful way.

I live with deeply rooted and untreatable nerve damage from an incurable traumatic brain injury. Bacterial meningitis almost claimed my life as a child. My brain swelled up and still feels pained and swollen even now -- the very definition of intractable pain.  Because migraines are literally my each and every day reality, I'm sick and tired of focusing on or talking about them. 

From what I've witnessed, awareness campaigns are often a repetition of the same conversations, among the same people and within the same circles. We as "migraineurs" don't need to continuously hear about what we already know. In my opinion, it's an unnecessary use of precious energy and the impact doesn't go as far as it could. 

The "pain community" generally seems less of a community and more like a clique -- a repeated line up of only certain people’s voices being heard and a select few being invited to participate in events.  

It gets even worse than that:  I recall emerging onto the pain scene out of an absolute last resort. I jumped head first into involvement with every organization I could find and joined several support groups out of sheer desperation. One day, a routine migraine treatment with Botox went horribly awry -- to the point I still deal with the repercussions to this day. 

I immediately logged on to share this experience, not in an attempt to scare anyone but to raise awareness and hopefully assist in others not encountering the same thing I did. I hoped for some compassionate empathy but what I received was the exact opposite. 

I was torn to shreds online by keyboard warriors claiming not to feel well enough to physically function, but clearly energized to the point of dragging me down. Before I was given a chance to clarify or further explain, I was muted by administrators. This felt violent, uncalled for and oppressive. I was bullied and shunned at a point in time I couldn’t afford to be. 

These very same individuals have the audacity and nerve to schedule days of remembrance for those who could no longer accept or deal with their pain, while simultaneously playing an active role in pushing people over their edge, probably without even caring or realizing it. 

I view it as a sickness, that a person would demand and expect consideration and respect when they don't demonstrate or possess it for others. It's a contest of underlying comparison as well as competitive victimization: I've hurt longer than you, worse than you, my life has been harder than yours, and no one else's life is as bad as mine.  

Is that really a game you want to win? How could one ever expect to feel better with a fixation like that? 

I've come to realize that many who claim to want improvement aren't truly committed to it. It takes work, a retraining of our minds and an entirely new approach to not only how we care for ourselves, but how we care for others.  

This questionable code of conduct is an illness in itself. The resistance to actual improvement is in part what's keeping members of these groups sick -- not to mention the fact that some remain utterly attached to their conditions to the point they're unsure of any identity outside of them. If those they so faithfully follow were truly interested in the well-being of their devoted followers, they'd be attempting to shine a light on the darkness as opposed to benefiting or profiting from it. 

I remained quiet on this for a long time, but one thing about my advocacy is that it’s real. Some people love that and others hate it. I’m not afraid to burn bridges, especially the ones that I built. In case you haven’t noticed, the whole world is hurting and the healing of our planet is what matters. Not just you and your cause.   

Mia Maysack lives with chronic migraine, cluster headache 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. 

‘Golden Era’ for Migraine Therapy Not Providing Relief  

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By Pat Anson, PNN Editor

In recent years there have been many advances in treating and preventing migraine – what some have called a “treatment revolution” in migraine therapy. New oral and injectable drugs block a key protein released during migraine attacks, and a novel smartphone-controlled device uses neuromodulation to help ease migraine pain.

But for many migraine sufferers, the increasingly crowded field in migraine therapy isn’t translating into pain relief or improved quality of life. Many are reluctant to seek treatment or take medication, and feel stigma about having the disease, according to two new studies.

“We are in a golden era for migraine care with the introduction of new therapeutic options for both the acute and preventive treatment of the disease, but if we don't address the need for better education, less stigma and improved access to care, we are falling short," said Eric Pearlman, MD, a senior medical director at Eli Lilly.

A survey released by the National Headache Foundation in recognition of Migraine and Headache Awareness Month found that less than a third (29%) of people with migraine feel that their disease is under control. The online survey of over 1,000 men and women diagnosed with migraine was funded by Biohaven Pharmaceutical.

Many respondents are concerned about side effects from the medications they take, such as brain fog, fatigue and sleepiness. Almost half of respondents (47%) between the ages of 18-59 say side effects have interfered with their ability to go to school or work. Nearly as many (46%) feel anxious about taking medication.

And despite the plethora of new choices available in migraine therapies, nearly two-thirds (65%) of migraine sufferers are still using an old medication -- triptans -- as a treatment for migraine pain.

"We must strive to understand and educate about the impact of this disease on not only physical well-being; but also, emotional and mental health," said Mary Franklin, executive director of National Headache Foundation. "Every person living with migraine has a different experience and we want all to feel confident in their treatment choices; but also know that there are others who understand the real impact of the disease."

The survey asked migraine sufferers about the emotional and mental burden of the disease, and the impact it has on daily life.

  • 77% said they were not able to do the things they wanted to because of migraine attacks 

  • 54% feared they were a burden to family, friends and colleagues

  • 53% say they modified career plans due to migraine

  • 42% were unable to exercise or engage in physical activity

  • 37% feel less productive at work or school

  • 28% feel less able to take care of their children

  • 25% avoid sexual intimacy

The vast majority of respondents (93%) feel misunderstood and that those who don't suffer from migraine don't understand the severity of their disease.

OVERCOME Study

Results from the Biohaven survey were echoed in a large new study of more than 21,000 people living with migraine, which found that less than 30 percent are taking a recommended prescription medication.

"For millions of people living with migraine, the journey to an appropriate treatment program is fraught with gaps," said Susan Hutchinson, MD, scientific advisor to the OVERCOME study. "There are a variety of reasons at play, but it begins with the fact that many may not realize what they are experiencing is a migraine and not just 'another bad headache.'”

The OVERCOME (Observational Survey of the Epidemiology, Treatment and Care of Migraine) study was funded by Eli Lilly. It sought to assess the impact of new treatment options and whether migraine sufferers completed three critical steps in migraine management:

  1. Actively sought care with a healthcare professional

  2. Received a migraine diagnosis

  3. Took a recommended prescription medication

Less than two-thirds (63%) of those who may benefit from acute migraine medication sought treatment from a healthcare provider. Of those, 75% were diagnosed with migraine. Among the diagnosed population, only 59% percent took a recommended drug. Overall, only 28 percent completed all three steps to appropriate care.

The results weren’t much better for OVERCOME respondents who may benefit from a migraine prevention drug. A little over two-thirds (69%) sought care and 79% received a migraine diagnosis. Of those who sought care and received a diagnosis, only 28% wound up taking a preventive medication for migraine. Overall, only 15 percent of this population completed all three steps to appropriate care.

Some migraine sufferers only seek treatment when their pain become unbearable. About 10% of respondents sought care in an emergency room or urgent care clinic setting, where they are less likely to receive an accurate diagnosis or take a recommended medication. 

"Even in light of recent new treatment options in the field of migraine, we still face an uphill battle as too many continue to be underserved," said Robert Shapiro, MD, a scientific advisor to the OVERCOME study. "An important aspect of migraine care that is truly diminished and may contribute to these findings is the stigma felt by many living with the disease. A person's reluctance to seek care or take medication for their migraine can be rooted in the fear of how a friend, employer, or even a loved one may view them for doing so."

Migraine affects about a billion people worldwide and 36 million adults in the United States, according to the American Migraine Foundation. In addition to headache pain, migraine can also cause nausea, vomiting, blurriness or visual disturbances, and sensitivity to light and sound. The World Health Organization classifies migraine as one of the 10 most disabling medical illnesses.