Beautifully Catastrophic

By Mia Maysack, PNN Columnist

Whatever I do, there is going to be detrimental repercussions to my health and I do it anyway. Because if I didn't, I may as well be dead. At least in the sense of the quality of life I'd be lacking.

I have a love for creative expression through dance. As a young girl swimming and diving were my passions, but after a freak accident in the water gave me bacterial meningitis and chronic migraine, I found another passion in the form of dancing.

Over the years, my ability to dance had lessened and getting a nerve disorder diagnosis was another wake-up call. But who's to know what the future holds. It’s wise to make good use of this gift while still able.

I am lucky to get a few solid moments of dancing and when I get to the point of breaking a sweat, heightened pain is just about guaranteed as a result.

What's a person to do, if they can’t do what they love? For me, the answer has been to pursue it at a lighter extent, a handful of times per month as opposed to every day as it was in the past.   

My movement has evolved into a demonstration of my ailments --- to acknowledge and release them, while providing outside space for them to breathe. We all have unique traits and possess individualized talents that I believe were given to us as gifts to provide back to the world. 

I submitted this creative dance video to the 4th Annual Migraine Moment Short Film contest. It’s dedicated to those mourning the loss of who they were or wanted to be before becoming a Pain Warrior.

Prior to the making of this video, there was a solid month of resilience training. After recording it, I crawled into bed and rocked myself in response to the excruciating pain induced by dancing.  

The pain was horrendous and lasted for days, but I felt gratitude to have had even just a few moments to do something that brings me joy. I worked hard for that extra Spoon to be able to continue on through discomfort. It’s empowering to reclaim a part of myself in the midst of what can feel like broken pieces.   

A lot of us have had to give up things we've enjoyed. That’s another realm of grief that ordinarily doesn't make it to the surface, because we're fixated on just getting by one moment at a time. That alone takes much of our energy. 

It's imperative that we not allow our ailments or conditions to become our identity. I no longer look at it as if I “make myself sick” by engaging in this release. I already am sick. And that's not my fault either.   

I've found when I take conscious time to engage in meaningful activities that aren't revolved around being sick that there’s an impactful sense of replenishment. 

Some of us have been dealing with our battles for longer than we even want to think about or have situations that are expected to be incurable or life-long. What if we shifted our focus on what we can do right now? 

A lot of odds may be stacked up against us but we need not underestimate the power within an adequate self-care approach and routine. Although we've fallen down 7 times, we must rise up 8 -- and as many more times it takes.

It's important to mourn our losses so we may then find the strength to move on from them. It provides the opportunity to re-invent ourselves, which in my experience has been necessary more times than I'm able to count.  

I've referred to my chronic conditions as a thief. These illnesses have taken away jobs, social engagements and the concept of commitment. It's devastating to pick up the broken pieces of a shattered life, especially when it happens repeatedly.  

Alas, the good news is that our mindset is entirely within our power. What can be done with this pain, how will it be productively used?

There will always be those that’ll suggest I shouldn’t ever wear headphones, blast loud music or engage in any sudden movements. But I’ll never give it 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 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.

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.

1 in 5 Multiple Sclerosis Patients Misdiagnosed

By Pat Anson, PNN Editor

Nearly one in five patients who are told they have multiple sclerosis are misdiagnosed with the autoimmune disease, according to a new study of patients referred to two MS treatment centers in Los Angeles. The patients spent an average of four years being treated for MS before receiving a correct diagnosis.

MS is a chronic disease that attacks the body’s central nervous system, causing pain, numbness, difficulty walking, paralysis, loss of vision, and fatigue. The symptoms are similar to those of several other chronic conditions – including neuropathy, migraine and fibromyalgia – which often leads to a misdiagnosis.

Researchers at the Cedars-Sinai Multiple Sclerosis and Neuroimmunology Center analyzed the cases of 241 patients who had been diagnosed by other physicians and then referred to the Cedars-Sinai or UCLA MS clinics.

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Their findings, published in the journal Multiple Sclerosis and Related Disorders, indicate that 43 of the 241 patients (18%) with a previous diagnosis of MS did not meet the criteria for the disease.

"The diagnosis of MS is tricky. Both the symptoms and MRI testing results can look like other conditions, such as stroke, migraines and vitamin B12 deficiency," said lead author Marwa Kaisey, MD. "You have to rule out any other diagnoses, and it's not a perfect science."

The most common correct diagnoses was migraine (16%), radiologically isolated syndrome (RIS) (9%), spondylopathy (7%), and neuropathy (7%). RIS is a condition in which patients do not experience symptoms of MS even though their imaging tests look similar to those of MS patients.

The misdiagnosed patients received approximately 110 patient-years of unnecessary MS disease modifying drugs. Nearly half received medications that carry a known risk of developing progressive multifocal leukoencephalopathy, a potentially fatal brain infection.

"I've seen patients suffering side effects from the medication they were taking for a disease they didn't have," Kaisey said. "Meanwhile, they weren't getting treatment for what they did have. The cost to the patient is huge — medically, psychologically, financially."

The cost of disease modifying medications for an MS patient in the U.S. exceeds $50,000 a year. Investigators estimated that the unnecessary treatments identified in this study alone cost almost $10 million. 

Researchers hope the results of the study will lead to new biomarkers and improved imaging techniques to help prevent future MS misdiagnoses.

A similar study in 2016 also found that MS patients were often misdiagnosed. One third of the patients were misdiagnosed for a decade or longer, most took unnecessary and potentially harmful medication to treat a disease they didn't have, and some even participated in clinical trials for experimental MS therapies. About a third suffered from morbid thoughts of death.

Finding Validation at the Migraine Symposium

By Mia Maysack, PNN Columnist

It was an honor to attend the annual Migraine Symposium and Awards Dinner held by the Association of Migraine Disorders (AMD) this past weekend at Brown University in Providence, Rhode Island.  

At the symposium there were more than 25 experts covering topics from breakthroughs in migraine research, emerging technology, holistic treatments, medicinal cannabis and one of the most painful conditions known to mankind: cluster headaches.        

As someone who lives with multiple brain diseases and disabling chronic intractable pain, sharing space with migraine community members and healthcare professionals that sincerely care made the occasion extraordinarily meaningful to me.

I was introduced to many exceptional human beings, each of whom I could easily write a column about, but for now I'd like to shine the spotlight on the President of AMD, Dr. Frederick Godley.  Not only is he an extraordinarily intelligent and kind soul, his positive attitude illuminated the entire room

#ShadesforMigraine

#ShadesforMigraine

Let me share one of the very first moments of validation I'd ever experienced as a person living with migraine and cluster headaches caused by post-bacterial meningitis. Having inquired with many healthcare professionals as to whether or not I am living with a traumatic brain injury (and been disregarded by each and every one), my eyes fill up with tears while rejoicing when I write that although I am not a patient of Dr. Godley or being treated by him, he acknowledged that possibility.  

At the end of the day, it doesn't do those of us coping with severe ailments much good to fixate on any specific diagnosis. What's most important is we find a way to manage whatever hand we are dealt. But the validation helps. There have been moments when I've begun to question my own sanity. There's no possible way my head could be hurting *this* bad or for *this* long. Most others are in persistent disbelief as well, even though I crack jokes that if I were to ever wake up pain free, then I must be dead!

I am grateful that I am not and tremendously excited about the future possibilities in migraine treatment. Considering that for about 30 years one of our only options was a small class of medications, now is the best time to get involved in the migraine community because we're moving forward with such momentum. There have been funds granted for much needed further research.

PTSD and Psychedelics

Some other thoughts about the symposium:

The very significant validation that post-traumatic stress disorder (PTSD) is a common underlying element of pain or even a potential cause of it. Think about it. If your own body feels as though it is fighting and turning against you on a daily basis, how are we to live without stress or experience any sense of security? 

It's not as common as it should be to go into a doctor's office and be addressed as an entire person. In my experience it has been: “Let's do what we can to mask the symptoms and settle on normalizing what’s left.” That is not treatment. Unacceptable.

The same small class of medications that are one of the only options for people living with ongoing head pain have a similar chemical makeup to Psilocybin, a psychedelic compound found in mushrooms. Psilocybin and LSD are beginning to have more credibility as potential options in treating Trigeminal Autonomic Cephalalgia (TAC) or cluster headaches. There's hope they could be helpful in treating other conditions as well, despite the fact they've got an overall reputation as being hazardous drugs. 

Ever come across a rule that just seems absolutely ridiculous? That's kind of how I feel about the current classification of these substances. We all know it only takes one person to essentially ruin things for everyone else. As a result, most people think this kind of stuff only causes harm and chaos.  No one is suggesting that anybody should go to their local drug dealer and score a bag of whatever -- we’re discussing potential. It all boils down to the science and our focus here is solely medicinally related.

Much like we've been exploring the use of CBD without THC, we are moving forward with learning more about these other substances -- potentially without the psychedelic or hallucinogen properties. Perhaps they're needed to induce relief. And if that is the case, in what micro-dosage could this possibly be prescribed in a safe, effective way?     

Although I am not using them, I've known others who’ve had successful results. In the proper way and for the right reasons, I have also chosen to advocate for them, as there seems to be far less complications with more natural options than those from the pharmaceutical realm. Each approach has its rightful place and there's no one-size-fits-all for everyone. 

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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 Constant Daily Companion

By Mia Maysack, PNN Columnist

I've got a companion everywhere I go. The wants and needs of this little bugger consistently require that I prioritize it before myself. It tests my boundaries, my patience, as well as my sanity.

I cannot eat, sleep or even use the restroom uninterrupted. This results in a consistent flow of tailored accommodations to make life easier for all involved. Temper tantrums are not only a daily occurrence, but a humble reminder that I am operating on a clock outside of my control.

I'm not discussing a child. I am referring to my chronic illness.

Migraines and my other ailments wake me up throughout the night, demanding attention. We all know how this works. No one gets any rest until the situation settles down. Pain is a constant companion who must be catered to.

Today, for example, I woke up to what felt like a pitchfork making its way through my cheek and out through my left eyeball.  Grabbing my face out of reflex -- as if somehow that'll ease the discomfort -- I rocked myself back and forth until the severity lessened.

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My entire body still feels the aftershock of that attack, but it's only the first of many that'll transpire throughout the day. I know enough to recognize this as a warning.  My brain injury is now triggered, turning an everyday 5/6 on the migraine scale into a solid 8/9.

The impact on my physical body is severe due to the heightened sensitivity of my nerves. Getting up from a sitting position gets harder by the day. At times it is not possible for me to stand up straight or navigate stairs. Sometimes I can barely walk.

There is overwhelming nausea to the point that even breathing seems to aggravate it, so no food or drink remains inside. This causes further complications, as malnourishment and dehydration only worsen things. The dizziness gets so severe it hinders my eyesight.

Despite the fact I am on no drugs whatsoever, I feel “out of it” to the point that all I can do is write because I'm unable to verbally speak.  

If you're so sick, how can you type?  Lowest brightness. Special glasses. I document this so the world can understand and because I am currently on bed rest.

It doesn't take long for the darkness to creep in, with special guests anxiety, grief, stress and panic. Despite how much it hurts, keeping my mind busy is imperative. So I write.  

What I'd really love to do is rest, but it hurts to close my eyes. And even though quality sleep is what my body needs most, it further heightens my head pain.  In other words, the self-care that has been my saving grace actually worsens things.

I'm not a violent person, but if someone suggested a Tylenol or something like it, I'd have to fight the urge to use my last ounce of energy to punch them in the face.

No work was done today, meetings were cancelled, my dog didn't get a walk and I am barricaded in a blacked-out room. Another rescheduled dinner date with the girls, unable to answer phone calls or messages, couldn't run errands or get any chores done. The world continues to spin without me.

Missing out on life and feeling the weight of disappoint is a crippling side effect of all these symptoms. With broken hearts we mourn the lives we've lived and who we once were.

I have always been the one to take care of everybody -- the nanny, teacher, nurse. Now I struggle just to keep up with what's going on internally. As if that’s not difficult enough, we have to fight to be taken seriously or even believed. That is unacceptable.

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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.

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.

Climbing Mountains Together

By Mia Maysack, PNN Columnist

Just about every time I'm in the bathtub, I contemplate slipping my head under water for a tad bit too long.  I do not consider myself suicidal, nor do I really want to die in the literal sense. But sometimes I reach a point when I'd do almost anything to kill this pain.   

Current situation: At least 30 cluster headache attacks thus far this week. Constant migraine going strong for about two weeks. Ongoing fibromyalgia flares. Working to pass kidney stones induced by stress and dehydration. Nausea, dizziness, fatigue and exhaustion have latched onto my soul like draining parasites. None of my go-to treatments have eased any of the discomfort.   

Despite my own battles, I consistently make myself available to others in the thick of their own private storms. The world needs more light and I can always use a distraction from my own body self-destructing. Win/win.  

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Recently I did what I could to talk a loved one off the ledge. This person is also unwell but in a very different way. Their infliction is not physical, but boils down to their own personal choices.  

You might imagine the frustration I feel when surrounded by others who could save themselves from drowning simply by standing up.

All the while, I've been standing strong for years but consistently get swept away by overwhelming undercurrents that are entirely out of my control. 

It can be difficult to encourage others to live when you're barely hanging onto a shred of hope for yourself. But I consider myself honored for the opportunity to try.  

I cannot keep track of how many times I've had to “die" in a figurative sense so that I could grieve the losses of countless aspirations, ideas, goals and dreams.  I've always been known as a positive person and that's most definitely who I am.  It is not an act, but people tend to think it’s easy for me and they couldn't be more wrong. 

It takes absolutely everything I have to lay my head down at night, knowing I'll awaken to the same demons I spent the previous day slaying. And that it'll likely remain this way, forever.  

My positivity began out of necessity and is a method of survival. Relentless pain every single day for 20 years straight is enough for anyone to question their sanity or possibly even lose it. As a matter of fact, we're currently mourning the medically assisted suicide of a fellow Pain Warrior, who endured similar pain for the same amount of time.   

I felt the need to write this so that others do not think they are crazy. Under our circumstances, it's understandable we might fantasize about no longer feeling this way. The mantras, positive quotes and clichés can only get us so far, and it can be downright devastating to not have adequate support, acknowledgment, validation or pain relief.  

I also had to write this because I want to convey that you are all the main reason why I still hold on. Knowing there's a community of others who truly get it, provides me with a purpose and reason to get myself out of bed in the morning.

It has become my mission to demonstrate that these mountains of misfortune aren't meant to be carried, but they can be climbed. They might even be moved if we all work together.   

No one can give us quality of life or the will to live outside of ourselves, but we can lean on one another during our deepest and darkest moments of despair. It's okay to have bad days, to be in a negative headspace, to question the purpose of all this, to feel angry, hurt or sad.  

As I envision the water calming my ailments and swirling its way down the drain, I think about the possibility of someone reading this at a time they needed it most. That thought gives me the strength I need. 

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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.

Nerve Stimulator Approved for Cluster Headache

By Pat Anson, PNN Editor

A neuromodulation device that stimulates a key nerve in the neck has been cleared by the U.S. Food and Drug Administration as a treatment for the prevention of cluster headache.

The handheld device – called gammaCore – is the first and only product cleared by the FDA for the prevention of cluster headache. It has already been cleared for the relief of pain caused by cluster headaches and migraines.

Cluster headaches are a series of short but extremely painful headaches that can occur every day for weeks and months at a time. They strike suddenly and subside quickly, but are so severe they’ve been called “suicide headaches.” Men are more likely to get cluster headaches than women. The cause is unknown and there is no cure. Recommended treatments for cluster headaches are limited to oxygen and triptan. 

“The FDA clearance of gammaCore for adjunctive use for the preventive treatment of cluster headache has the potential to help the approximately 350,000 Americans impacted by this debilitating condition often referred to as a ‘suicide headache,’” said Frank Amato, CEO of electroCore, the maker of gammaCore.

“We are pleased that cluster headache patients now have a FDA-cleared option, and one that is both safe and effective, especially given the difficulty in treating cluster headache and the limitations of current treatments.”

gammaCore is available by prescription only but can be self-administered by patients. It sends a mild electric charge to the vagus nerve in the neck, which stimulates the nerve while reducing pain. It’s recommended that the gammaCore be used twice daily to prevent cluster headache and reduce its severity.

ELECTROCORE IMAGE

ELECTROCORE IMAGE

The $600 device also has regulatory approval for the treatment of cluster headache, migraine and medication overuse headache in the European Union, South Africa, India, New Zealand, Australia, Colombia, Brazil, Malaysia, and Canada. 

Potential Treatment for Lupus

The vagus nerve is the longest cranial nerve in the body, running from the base of the brain through the neck, heart, lungs and abdomen. In addition to cluster headache, scientists think vagus nerve stimulation (VNS) could be useful in treating a variety of chronic pain conditions.

FEINSTEIN INSTITUTE FOR MEDICAL RESEARCH

FEINSTEIN INSTITUTE FOR MEDICAL RESEARCH

In a small pilot study at the Feinstein Institute for Medical Research, researchers found that VNS significantly reduced pain and fatigue associated with lupus, an autoimmune disease that damages joints, skin and internal organs. Musculoskeletal pain is one of the most common lupus symptoms, affecting up to 95 percent of patients.

Feinstein researchers used an experimental device to stimulate the vagus nerve through the ear. Lupus patients who were treated with the device for five minutes daily had a significant decrease in pain and fatigue after just five days.

“Previous studies at the Feinstein Institute have found that under certain conditions, stimulating the vagus nerve can reduce inflammation,” Timir Datta-Chaudhuri, PhD, wrote in an email to PNN.

“With inflammation being a factor in many conditions, the vagus nerve could be used as a therapeutic target for conditions beyond lupus, and potentially for pain, when inflammation is a contributing factor. In fact, this discovery has been used in the past to develop bioelectronic devices which have been tested in clinical trials in Europe and shown to be effective in reducing the joint pain and inflammation in rheumatoid arthritis.”

Datta said there are plans to continue testing the device in clinical trials. If the results are positive, the Feinstein Institute would seek to partner with other labs and companies to create a device for wider use.

Stop Shaming Pain

By Mia Maysack, PNN Columnist

I've encountered and witnessed shaming several times in the pain community. It’s as if there was a contest to compare one pain to another.

I once shared a personal experience online about a specific treatment option and got ripped apart by people who disagreed.

Then came a debate pertaining to how to properly label my specific head pain. Due to the fact I have cluster headaches, yet also live in a constant state of migraine, I've used the term “migraine clusters.” That caused offense and was deemed incorrect. No one debating me came up with a proper label for my never-ending pain, so I'm still trying to figure that one out.

There are also questionable looks and inquiries about my health, because I don't have a wheelchair, visible cast or a gushing wound.

I've also encountered others describing their ailments, only to cut themselves off by saying, “Oh, but it's nothing like what you endure!"

Our experiences don’t have to be the same for them to be valid. That's a mind frame the world as a whole could do well to adopt.

There have been times I've partied in my own pity for far too long, but I've since learned that serves no positive or productive purpose past a certain point. Visit those feelings and then send them on their way. Don't allow them to unpack and live in your brain. I'm not preaching, this is just as much a reminder to myself as anyone else.

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We as human beings have all been through something that has changed us. A large portion of my life has been dedicated to the medical field. Nothing gave me a rush quite like having a full floor of patients that were well taken care of.  I used my career for a long time as a means of distraction from my own pain, because how couldn’t one get over themselves while constantly surrounded by people who have it much worse than you?

Newsflash to us all:  Whether in a hospital or walking around a park, there’s no possible way to know what someone is going through, feeling or what their circumstances have been up until the point your paths might cross.

We are all faced with hardships, some more than others, but pain is pain. Each individual is at a different place in their journey and each personal experience is unique.  This is a remarkable thing, because it provides a golden opportunity for us to learn from one another -- as opposed to having a ridiculous and unnecessary divide as we cater to the “I am offended” epidemic our world seems to be inching closer to by the day.

As an advocate and a person, my intent is never to cause insult. However, I am also not afraid to use my voice in an effort to get important conversations started. 

Having a difference of opinion is acceptable, but disrespect or tearing one another down is absolutely not.  Could we all at least agree that there's enough suffering already happening in our lives? Why contribute to it with each other? 

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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.