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 Daily Persistent Headache

By Warren Cereghino, Guest Columnist

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

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

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

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

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

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

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

WARREN CEREGHINO

WARREN CEREGHINO

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

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

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

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

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

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

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

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

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

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.

Study Finds Vagus Nerve Stimulation Delays Pain Signals

By Pat Anson, PNN Editor

Neuromodulation devices that stimulate a key nerve in the neck – the vagus nerve --- have shown potential in treating a variety of chronic pain conditions, including migraines and autoimmune diseases. A new study helps us understand how the devices work.

Researchers studying post-traumatic stress disorder (PTSD) found that vagus nerve stimulation appears to dampen and delay how the brain responds to pain signals.

"It's thought that people with certain differences in how their bodies -- their autonomic and sympathetic nervous systems -- process pain may be more susceptible to PTSD," said Imanuel Lerman, MD, a pain management specialist and associate professor at the University of California San Diego School of Medicine. “And so we wanted to know if we might be able to re-write this 'misfiring' as a means to manage pain, especially for people with PTSD."

UC SAN DIEGO HEALTH

UC SAN DIEGO HEALTH

Lerman and his colleagues at Veterans Affairs San Diego Healthcare System used functional magnetic resonance imaging (fMRI) to get a look at the brains of 30 healthy volunteers after a painful heat stimulus was applied to their legs.

Half were treated with vagus nerve stimulation (VNS) for two minutes -- via electrodes placed on the neck – before the heat stimulus. The other half received a mock stimulation.

Researchers found that VNS delayed the response to heat stimulus in several areas of the brain known to be important for sensory and emotional pain processing. These pain-related brain regions were activated ten seconds later than participants who received sham stimulation. Volunteers who received VNS also sweated less in response to the heat.

“Not everyone is the same -- some people may need more vagus nerve stimulation than others to achieve the same outcomes and the necessary frequencies might change over time -- so we'll need to personalize this approach," said Lerman, who reported his findings in the journal PLOS ONE.  "But we are hopeful and looking forward to the next steps in moving this approach toward the clinic."

The next step for researchers is to conduct a clinical study of VNS on military veterans in the San Diego area. They want to determine if at-home vagus nerve stimulation can reduce emotional pain and neural inflammation associated with PTSD. People with PTSD often have intrusive memories, negative thoughts, anxiety and chronic pain. It is usually treated with psychotherapy, anti-depressants and anti-anxiety medications.

The Food and Drug Administration has approved VNS for the treatment of pain caused by cluster headache and migraine. A handheld device – called gammaCore –  is currently available by prescription for $600 to treat those conditions. 

The Feinstein Institute for Medical Research recently reported that VNS significantly reduced pain and fatigue associated with lupus, an autoimmune disease that damages joints, skin and internal organs. In a small pilot study, lupus patients who were treated with VNS for five minutes daily had a significant decrease in pain and fatigue after just five days.

An implanted vagus nerve stimulator is also being tested for the treatment of rheumatoid arthritis.