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.

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.

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.

Nerve Stimulation Effective in Treating Cluster Headache (VIDEO)

By Pat Anson, Editor

A neuromodulation device that stimulates a nerve in the neck substantially reduced the number and frequency of attacks in patients suffering from cluster headache, according to small study published in the journal Neurology

Image courtesy of electrocore

Image courtesy of electrocore

Seventy-nine percent of patients who completed the study (15 out of 19) reported an overall improvement in their condition after using gammaCore, a nerve stimulator that sends electrical signals along the vagus nerve, which runs through the neck to the brain. Eleven of the patients had chronic cluster headaches, and eight were classified as episodic.

“Cluster headache is a dreadful, extremely painful and disabling condition that can be very complex to manage. Given the unmet need for effective and safe treatments, we were excited to see the outcomes in these patients of an approach offering very considerable promise for future development.” said Peter Goadsby, PhD, who led the research at the Royal Free Hospital in London and the Beaumont Hospital in Dublin.

Cluster headache is a neurological disorder characterized by recurring, severe headaches on one side of the head, often around the eye. Attacks occur suddenly and can range from 15 minutes to three hours. Recommended treatments for cluster headaches include oxygen or triptan. 

Nearly half (47%) of the acute attacks treated with gammaCore ended in an average of 11 minutes.  Ten patients reduced their use of oxygen by 55% and nine patients reduced their triptan use by 48%. Preventative use of the gammaCore device resulted in a substantial reduction in the frequency of attacks, from 4.5 attacks every 24 hours to 2.6 after treatment. 

The treatment, which is self-administered by the patient for two minutes, involves placing the hand-held gammaCore device on the skin of the neck over the vagus nerve. In the study, patients administered two to three rounds of neurostimulation twice per day. Acute attacks were treated with up to six doses at the onset of the attack. Patients reported no serious side events.

GammaCore, which is manufactured by New Jersey based electroCore, is not currently approved by the Food and Drug Administration and is not available in the United States. 

The company is seeking FDA approval for gammaCore in the treatment and prevention of cluster headache. The device currently has regulatory approval for the acute and/or prophylactic treatment of cluster headache, migraine and medication overuse headache in the European Union, South Africa, India, New Zealand, Australia, Colombia, Brazil, Malaysia, and Canada. 

“It is not certain how vagus nerve stimulation treats and prevents migraines and cluster headaches, but data suggest that it may work by sending signals into the brain that reduce the amount of a substance, called glutamate, that has been associated with headache symptoms,” the company says in a statement on its website.

ElectroCore is developing Vagus Nerve Stimulation (nVNS) therapies for the treatment of multiple conditions in neurology, psychiatry, gastroenterology and respiratory fields. The company’s initial focus is on the treatment of primary headaches (migraine and cluster headache), and the associated chronic co-morbidities of gastric motility, psychiatric, sleep, and pain disorders.

ElectroCore has raised more than $80 million from investors including Merck’s Global Healthcare Innovation fund.