It’s the last day of Migraine and Headache Disorder Awareness Month.
Every year on this day since I began raising my voice for awareness, I feel almost sorry for my new social media friends/followers who don’t yet realize that for me, awareness months never really end. Did they get into this thinking I’d share less any other time of year?
Anyone who might have thought so learns otherwise pretty quickly.
You see, awareness months may end…but we who are are struggling each day with stigmatized, undertreated, and under recognized disorders don’t. The diseases don’t go away quietly just because the month is over; our fight continues.
And I’ve never been one to exit the stage quietly (literally, because I’m a clutz and likely to trip over something). 😉
What do I say about something that has changed me and my life as fundamentally as Chronic Daily Migraine? Actually, quite a bit.
But I thought I’d start with a story about why I say anything at all about it.
Once upon a time, almost 6 years ago, there was a woman whose entire life was turned upside down and inside out…and that woman was me.
I’m a mom of four, a grandma of four adorable grandspawns, a daughter, a sister, an animal lover with 16 outside cats (9 are kittens), two inside cats (I know, crazy cat lady, that’s me), two box turtles, and a huge German Shepherd slobber machine. Most of our pets are rescues.
I love rock and alternative music, I write poetry, I am an artist, and I advocate for awareness of mental illness, chronic migraine/chronic pain, and domestic violence. I write articles on occasion for The Mighty .
I am also one of the approximately 25% of migraineurs in America who suffer from chronic migraine, defined as 15 or more days of migraine symptoms/pain per month; at best, it’s like taking half a month and throwing it in the trash, and for me the symptomatic days number higher.
Understand that this is WITH treatment from my primary care doctor and a specialist; daily chronic migraine in particular is just very hard to treat (if you’ve found this blog, you probably know that already). Part of the problem is that we still don’t know much about migraine; although it’s ranked as the seventh highest cause of disability worldwide- as disabling as quadriplegia, active psychosis, and dementia, according to the World Health Organization- migraine receives less than 53 cents per person in allocated research funding. That’s much lower than many serious conditions.
For me, this condition is truly disabling–since 5 years ago when my episodic migraines progressed to chronic daily (that’s 24/7, 365 with a baseline of symptoms/pain that never leave), I’ve dealt with job loss, loss of time with family, loss of health insurance, having to give up going back to college, losing people I thought were friends who just don’t think my disorder is truly serious or for whom someone with chronic illness just doesn’t fit into their lives, and the grief of losing who I thought I was and the life I had.
One of the challenges I face isn’t physical; it comes from outside sources, from people who don’t understand this condition. Sometimes, people assume that I am still struggling because I’m not motivated enough to find proper treatment. However, it isn’t as simple as just calling your nearest neurologist. Most people think a neurologist is an expert on headache disorders, but not all neurologists are migraine specialists, and not all headache specialists are neurologists. Unfortunately, for the 38ish million migraineurs in America, there are only a bit over 500 headache/migraine specialists…which means many migraineurs may not receive an official diagnosis of migraine for years, and may have to travel farther for treatment. The wait to see a specialist can be months. Trying out all the medications used to treat migraine can take years if you aren’t lucky enough to find one off the bat. And many migraine sufferers don’t ever seek treatment, because the belief that it’s just a bad headache is so prevalent that non migraine sufferers aren’t the only ones to buy into it. I’ve talked to many migraineurs who don’t know much more about their disease than the general public, either because their doctors aren’t knowledgeable about it or because they don’t think it’s serious enough to seek treatment.
I was also diagnosed with depressive disorder 4 years ago, which is very common with any chronic illness, particularly a disabling one. In the right circumstances, most people would expect some degree of depression… for example, when a person with a life-limiting illness who has few options for relief cannot see an end to the pain. People might even consider it odd if that person DIDN’T suffer from depression.
But although living with chronic migraine is what brought me to being diagnosed, I’ve lived with depression most of my life, much of it in denial that I WAS depressed. It was very easy to write off my dark spells as reactions to situations in my life…growing up with an abusive father, an abusive marriage, raising 2 kids who are diagnosed with mental illnesses themselves, stress, etc. However, my reasoning was pretty selective, because it conveniently failed to explore the fact that I self-harmed from my teens into my late twenties, as well as a suicide attempt at age 19 that was very nearly successful.
But when the Chronic Migraine Fairy arrived, I couldn’t distract myself with the problems and people in my life anymore; I had to accept that they weren’t solely responsible for those dark emotions and trips down the rabbit hole, as I call it (hence the name of this blog). And as my antidepressant medication brought me to a more stable place, I realized that clinical depression is different than being extremely sad over a situation….and that the dark places my mind had been were as familiar as an old friend, because I’d been there before.
Depression lies to us. It tells us our problems aren’t important. It tells us we aren’t important. And its voice is powerful and persuasive. It can even convince it us it doesn’t exist, at least for us.
Many people see mental illness as a character flaw or weakness rather than a disease as real as diabetes, even those of us living with its impact…but it is so important to realize that many mental illnesses have a genetic or physical cause, such as chemical imbalances that regulate mood or affect our thought patterns.
Seeking help for a mental illness is no more a weakness or character flaw than going to the doctor for a “physical” illness.
The silence surrounding mental health needs to be broken. If you are dangerously depressed or suicidal, it is not weak to get help. It’s one of the hardest, bravest things you can do. If you aren’t taking advantage of every possible weapon in this fight that may help you cope better (be it therapy or medication or both), you are putting yourself at risk…and you are too loved, needed and important to lose.
Too often, we with chronic or “invisible” illnesses feel very alone, even with supportive friends and family…because no one who hasn’t been down our particular rabbit hole can’t truly grasp what we fight every day.
In writing this blog and sharing my experiences and struggles, I hope to help others feel less alone in this fight.
Since the original writing of this story a few years ago, I’ve also been diagnosed with anxiety and tardive dyskenesia. I’ve lost medical coverage, and subsequently lost treatment for migraine disease. I’m still receiving mental health treatment (thankfully) through MHMR (government service for low income).
It’s been hard. I’ve been without treatment since October 2016, and I won’t lie, I’ve danced around the Rabbit Hole a few times since then. But I’m surprisingly okay mentally and emotionally. I have my bad days like anyone else. Some are very bad; that’s where learning to spot the Rabbit Hole up ahead has mattered most.
I’ve even come to see the good in my Rabbit Hole, because like most things (and people), it’s neither good nor bad–it just IS. Sometimes pretty, sometimes treacherous.
But always part of me.
Physically…it’s definitely been much more limiting to not have treatment. It’s a given that my symptomatic levels are not good most of the time. (Probably one contribution to my upped anxiety.) I’m still in the process of seeking disability, and am on my 3rd denial. (More fodder for anxiety.) It’s probably time I bring in a lawyer, but I’m feeling ridiculous, unexplainable trepidation about finding one and keep putting it off, which I’m sure isn’t the best for me…I’m working on nerving myself up for it.
But I’ve survived this before, the No Treatment Merry Go Round…I’ll survive again. I’m just fighting a bit harder, and taking more time for me.
The journey has been and is painful. There’s no way around that. I never expected this life, and never would have chosen to be this person.
Yet here I am…I’m not sure if I’m actually making the best of what I was dealt, or just trying to give myself a reason to think that’s what I’m doing.
All I know is…once you’ve been down the Rabbit Hole, you’re never quite the same again.
As someone living with chronic migraine, an often misrepresented and stigmatized disease, I do a LOT of awareness posts, not just during the month delegated as Migraine and Headache Disorder Awareness Month (June), but year round…because my disease doesn’t just disappear when awareness month ends. It’s 24/7, 365; the unasked for genetic gift that keeps on giving.
More often than not, those living with an illness are the ones who advocate for it for a few reasons:
▪ Because who knows it better than those affected by it most or those who specialize in treating it?
▪ Because misconceptions and stigma about many invisible disorders and chronic illnesses abound among the general public (and frequently among those in the medical field) to the point that even some of us living with it believe them.
▪ Because all too often, if we don’t, no one else will.
So I had to share the story this beautiful post written by my sister Daphne in response to an Awareness Month graphic I made last year. My sister is my light on dark days, the best friend and sister a girl could ever ask for, personal cheerleader, tear wiper (and she doesn’t get mad if I have a good, snotty cry on her shirt), empathetic listener of both good and bad news, and all-around awesome person. I’m well aware of how lucky I am to have a supportive family–I’ve met too many chronic sufferers who do not, and it hurts my heart for them.
If everyone were even half the person she is, the world would be a much kinder place.
She gets right to the heart of what awareness is about, for my illness and others.
“This is my sister Selena, whose life was changed several years ago when her migraines went from episodic to chronic. Now, I know people wonder: what is the point of an awareness campaign? Is it simply to raise money to fight a particular problem?
Awareness is defined as “knowledge or perception of a situation or fact”.
Therefore, at its most basic level, that is the point of an awareness campaign: to increase people’s knowledge that, for example, chronic daily migraine is a real thing. Or Fibromyalgia. Ehlers Danlos Syndrome. Chronic Fatigue Syndrome. There is a very long list of medical conditions that we aren’t aware of, because they simply aren’t part of our lives.
And that’s okay; we can be very, very grateful this is not our particular burden to bear. It isn’t morally wrong to be unaware of all the health conditions (mental or physical) that can derail people from the lives they had planned for themselves.
What’s not okay is using our ignorance as a shield to deny that this is someone else’s reality. We probably do it in self-defense; it’s easier to pretend that the person with Chronic Fatigue Syndrome is lazy and wants an excuse to stay in bed all day, than it is to accept that CFS is a real problem that could potentially affect you or those you love.
But denial doesn’t help us, and neither does blaming the sufferer for their illness; though it makes sense to take care of our bodies, a healthy lifestyle is no guarantee against these issues. And if you talk to the people in your life who suffer from chronic pain (you probably know more of them than you think), high on their list of challenges are the two attitudes I just named: denial and blame. It’s hard to deal with medical conditions that can leave even doctors stumped, to know that these illnesses will never truly go away; harder still is the knowledge that family and friends think you are exaggerating, making up problems where there are none, looking for an excuse to be lazy, attention seeking, could fix your problem if you would only try (insert solution here)… The list goes on.
So THAT is the point of an awareness campaign: to educate the general population so that when someone says, “I have Ehlers Danlos Syndrome, ” the person they are talking to can listen with compassion rather than doubt, belief rather than skepticism. Such a simple little thing, but what a difference it can make.”
“‘Good’ Bad Day: Descriptive phrase denoting a day of higher than usual pain/symptomatic levels, but one in which the Spoonie is still able to enjoy oneself.”
*note: this is my definition; yours may differ*
These days are sometimes the unicorns of my chronic illness world; few and far between to the point that sometimes in between them, I wonder if they really happened or I’ve imagined them–normally higher symptomatic levels mean misery and less activity or being stuck in bed for me.
Such days are often take-a-break-from-life days imposed by my body and its limits or by me ignoring my body and its limits (we all do it sometimes despite our best intentions)…and more and more often since I had to give up meds and treatment due to losing medical coverage, they are non-days where I may or may not be even minimally functional.
But occasionally, the heavens shine on me and grant me a day that even though I feel exceptionally terrible on, I’m able to interact either online or in person and just plain enjoy myself, pain or not.
Yesterday was a “good” bad day.
Yesterday, many in the migraine community were caught up in Shades for Migraine and having so much fun with it that I felt better mentally just watching their stories and posts and new graphics inspired by the big day. It was contagious; I found myself constantly pulled back in; I had a storm of inspiration for new graphics and created a social media profile pic frame. A few friends asked me to add it to their pics, and a few strangers did, too, which naturally thrilled me; few things make an artist happier than people who appreciate his/her work, but I also enjoyed connecting with new people in the migraine community.
Before I knew it, it was midnight and I needed sleep…in other places the day was just starting, and along with it, more migraineurs across the world were joining the party. As I strapped on my trusty ice pack waited for the Sandman to appear, I was in no less physical misery, but I was content and even happy.
No matter what I was dealing with right then, I was a part of one big extra family I’d never expected to be part of several years ago. I was surrounded by migraine brothers and sisters and those who love us.
No matter how bad things get, those people are always there for me…and I hope I’m there for them just as much.
Chronic, episodic, silent, hemiplegic…and every other variation…you are my family.
And we are fighting together, for ourselves and others.
And if that thought can’t help a bad day feel somewhat more tolerable, I don’t know what will (Yeah, except maybe a cure…I’ll shut up now).
For some of us, June 21 is the longest day of the year. We thought it would be an appropriate day to show solidarity with those who have to live with this invisible, unpredictable and stigmatized disease.
Migraine disease is more common than Alzheimer’s disease, Parkinson’s disease, epilepsy and multiple sclerosis combined. Shocking, huh?! You may also be surprised that despite that fact it only gets a small fraction of the available neuroscience research funding and there is a very small number of neuroscience researchers who decide to take on migraine as a project. Migraine disease is not getting the attention it deserves; all the while, millions of people are suffering year after year behind closed doors.
So….on Wednesday, June 21, let the world know about it! Let the millions of sufferers know that you care… that you know they aren’t faking an illness… that you know much more needs to be done to find a cure and give them relief… that you want to help give migraine disease the prominence it deserves.
Wear some sunglasses all day long. They just need to be visible…hanging around your neck, hanging from your shirt or propped on your head are options if you can’t wear them on your face the entire day. Wear them indoors and in places where people usually don’t wear sunglasses. Be silly. Wear goofy ones if you dare. Let them make a statement… Start a conversation…
Post a photo of yourself (and friends/co-workers) wearing your Shades for Migraine on social media using the hashtag #ShadesForMigraine.
We are trying for a “viral” awareness campaign!
Share this campaign with your friends and family…let’s make migraine a big deal!
The only problem with these cheap Walgreens sunglasses is they’re so dark I can’t see well at night or indoors.
Migraine causes us to be hypersensitive to stimuli around us, in the environment, or that we come in contact with, much as asthma does for someone with the condition.
Like asthma, if you don’t have migraine (which is the condition, not the individual attacks), your body is not wired to hyperreact as ours does.
Triggers (stimuli) are NOT the cause of attacks. Migraine disease is the cause.
This is a genetic neurological condition, not a headache at all. Migraine can occur without the symptom of head pain and can still be disabling.
Photophobia (light sensitivity) can occur before an attack, during an attack, and can even be a problem between attacks for many migraineurs. Since I’m daily chronic, it impacts my life in many ways (for some examples of how it affects me, read my previous blog post Light Sensitivity (Photophobia) and Migraine).
With the month of June being Migraine Awareness month, many organizations are working on ways to increase and spread the awareness of migraine and to try to make migraine more visible. One such group is Shades for Migraine. They have designated June 21 to be Migraine Solidarity Day and are asking for individuals to participate by wearing sunglasses all day! Since this day happens to be my birthday, I am aware that June 21st is the longest day of the year. While the importance of sunglasses may seem strange to some individuals, for those who experience photophobia it is definitely something that hits home. For many of us, sunglasses are a major life necessity for survival.
Shades for Migraine is an event to show solidarity with migraineurs and to raise awareness of migraine, and it’s on June 21st. I participate in it many days by default–I’m one of the many with migraine who have abnormal light sensitivity all of the time (“all the time” means just that–it doesn’t go away). I’m almost positive I’ll be participating tomorrow, too.
If you are also participating in Shades for Migraine, head over to my blog’s Facebook page and post some pics of you in your shades!
Said everyone with light sensitivity accompanying/preceding a migraine attack ever. (Too bad we often can’t sleep through the symptoms…sigh.)
Photosensitivity is a term used to describe an abnormal sensitivity to light. For practitioners, photosensitivity is a vexing symptom since the pathophysiology of its cause is not well understood and little is known about appropriate treatment. For the patient who has the symptom, disability may ensue and frustration from lack of understanding of the medical community can be prevalent.
The term “photophobia” is somewhat of a misnomer since phobia refers to a fear of light. We use the word to denote patients who have an abnormal sensitivity to light. While all of us have experienced an uncomfortable sensation when we have gone from a darkly lit room or theatre to the bright outdoors, we soon adapt to the sensation and the light is comfortable again. However, in some patients, bright lights—even normal lights—are always experienced as uncomfortable. “Photo-oculodynia” refers to a non-painful light source producing pain in the eye. “Dazzling” is a term used when things appear too bright, but, while everything is bright overall, the light is not bothersome or painful.
Etiology of Photophobia
Many conditions cause photophobia, and the most common condition is migraine. Indeed, photophobia is one of the cardinal features and appears prominently in the International Headache Society’s classification of migraine. Photophobia has been shown to be present during and in between migraine attacks. Furthermore, just having the symptom of photophobia predicts that the individual has underlying migraine (Muelleners et al).
For many of us, light sensitivity is a real problem; not only can it accompany or be the first sign of an attack–it can set off an attack. Some chronic migraineurs find that for them, photosensitivity becomes persistent to the point of being a constant (I’m one of them–um…yay? Do I get a prize? Maybe sunglasses…). Some of us end up getting tinted lenses or wearing sunglasses indoors on a regular basis.
For me, being daily chronic and constantly light sensitive, sunlight and fluorescent lighting are my worst enemies (why I don’t tan and rock the Casper look). At worst, they can cause pain to flare horribly. At best, they’re a low key irritant that raises my symptomatic level a notch or two.
I avoid fluorescents if at all possible, but unfortunately grocery shopping is a must (can’t starve myself despite nausea trying, and the others in my house kinda like food). Fluorescent lighting and bad music on the overhead, not to mention loud announcements and sometimes loud customers make grocery shopping my personal hell. I’m always wiped out and feel lousy (or lousier) afterwards.
Nighttime driving with photophobia? HAHAHAHA…not on my agenda unless it’s an emergency, for a few reasons:
All I see coming at me–no road, no traffic lines; JUST. HEADLIGHTS. BLINDING. ME.
2. “Does that vehicle have double headlights, or am I seeing double again?”
3. HALOS AROUND ANYTHING REFLECTIVE. HALOS AROUND LIGHTS. AND WHATEVER THAT LOVELY PHENOMENON IS IN THE BOTTOM PICTURE.
Sure, they’re pretty. They’re also a huge distraction while driving. Not entirely certain if this is an aura or a photophobia thing, but yeah. The first time I saw halos around reflective stuff, I said to my son, “Look! Pretty!” And nearly drove into a ditch because I was so distracted.
OLYMPUS DIGITAL CAMERA
4. No pic for this one, but:
“Are those colored halogens in my rear view? Or multicolored halos? Or are those police lights?”
(Please tell me I’m not the only who has that happen.)
And for many of us who can’t afford an $8000+ price tag, that’s exactly what we’ll continue doing…and doing…and doing…
I’ve been following the CGRP research and trials with both hope and trepidation–hope because they’re the first drugs developed specifically for migraine prevention and have shown a great deal of promise, and trepidation because the projected price tag is astronomical for the average sufferer.
This article gives a lower projected price than many I’ve seen, but it’s still far beyond reach for many of us.
How long will we have hope extended with one hand and snatched away with the other? Many of us with chronic migraine are disabled and unemployed due to this terrible disease. We can’t afford many CURRENT treatments with a much lower price tag, much less this one.
What good is a highly promising medication if those who need it most can’t afford it?
Most people think of migraine as headaches. But head pain is commonly accompanied by severe, disabling symptoms like nausea, vomiting, dizziness and sensitivity to light, sounds and smells. The disease is far more widespread than realized: About 38 million Americans, or 12% of the population, have them, according to the non-profit Migraine Research Foundation.
But treatment options are limited. Just a handful of drugs were developed specifically for migraine, though drugs for other conditions including blood pressure and epilepsy have been found to work, too. Still, there haven’t been any new drugs in development for some time, experts say.
A promising new group of drugs, named after calcitonin gene-related peptide (CGRP), a neurotransmitter tied to migraine, has changed that. CGRP drugs are being developed both to prevent migraines before they happen, and to stop attacks once they occur.
The former category is closest to being available for patients. About seven million patients would likely get the treatment, estimates Evercore ISI analyst Umer Raffat, with an $8 billion to $10 billion potential market size.
Alder BioPharmaceuticals Inc. ALDR, -0.85% is also developing a preventive CGRP drug, and further research on the drug class is expected at the American Headache Society’s annual meeting, which began Thursday and runs through Sunday.
But price and access remain a persistent question. Projections begin at about $8,500, concerning patients and headache experts alike.
Dr. Lawrence Newman, director of the headache division at NYU Langone Medical Center and immediate past president of the American Headache Society, says that could add on to the “double whammy” of having migraines, which describes the symptoms and stigma patients face.
“I’m concerned that the patient will again be exposed to that double whammy,” he said. “They’re made to suffer because of the disease they have and because the insurance company won’t allow them access to a potentially effective therapy.”
Weather and wine and chocolate, oh MY! Those terrible triggers!
(An important distinction here before we continue: triggers are NOT what “causes” migraine. Migraine is a disease that causes sensitivity to triggers (stimuli). If one does not have migraine disease, triggers don’t affect them in this manner.)
“Our study results show that people with migraine have great difficulty identifying their personal triggers and their suspicions may be overly influenced by beliefs popularized on the internet. Unfortunately, these misperceptions lead to a lower quality of life by people avoiding many things they love but without good scientific reason,” explains Alec Mian, CEO and founder of Curelator Inc.
The first study examined trigger suspicions in users with episodic vs. chronic migraine and revealed an unexpected disconnect between suspicions and scientific reality. Both groups suspected virtually the same set of triggers. However, after using Curelator Headache, which scientifically determines true risk factor associations, significant differences in triggers were revealed between episodic vs. chronic participants.”
The funny thing about this is that it ISN’T a new idea. I’ve been talking about how triggers may not actually be triggers since reading a few articles in this vein a few years ago, and how triggers are often cumulative, so the most recent events or substance that pushes an attack into existence may be the one blamed, when in fact it’s a progression.
“In his clinical practice, he sees many patients whose quality of life suffers as a result of both their migraines and their efforts to avoid triggers that they believe will lead to attacks. In addition to light and exercise, other proposed triggers include stress, emotions, and certain foods.
But there’s little evidence that any of these things really do trigger attacks, says Goadsby. He hopes that, in addition to the current study, there will be much more research on triggers.
“There are tens of millions of people with migraine,” says Goadsby, “and all they have to go on are tales handed down about what triggers them.”
“You eat chocolate and you get a headache. Does that mean chocolate triggers the headache?” Silberstein asks. “What probably happens is the first symptom of your migraine attack is the desire to eat chocolate. Just like when you’re pregnant, you might want pickles or ice cream. That’s one end of the spectrum, where the desire to do something is part of the migraine attack, not the trigger.”
Distinguishing between triggers and symptoms is challenging, not just for those who study migraines but for patients as well. Silberstein says there are some known triggers, such as certain odors, hunger, chemicals in alcohol and hormonal changes linked to menstruation, but that other factors may fall somewhere between an actual trigger and a symptom. How can patients tell? “Everybody with a migraine should try to find out what is triggering their attacks,” Olesen says. “When they have a suspicion, it would be a good idea to try and see if it induces an attack. In most cases, it’s probably not going to be true.”
Both Olesen and Silberstein say there are a number of factors that determine whether these suspected triggers will actually lead to an attack. Patients likely have individual thresholds that vary from day to day and from environment to environment: some days your brain is less vulnerable to certain triggers, while on other days the conditions might be right for a migraine.”
The TIME article prompted me to test some of the things I’d previously thought were my triggers, one of which was pepperoni pizza–one of my all time favorite foods and something that is high on the list of things thought to contain classic triggers (aged cheeses and aged, dried, fermented, or smoked meats).
Guess what I found? It did NOT always set off an attack. The times it seemed to were usually times I was already in danger of one, pointing to the cumulative factor, or that it wasn’t one.
Now, triggers CAN change over time; as my attacks progressed to chronic, so did the things that could set them off. But many of those were environmental or cumulative. Some were unavoidable, like weather–scientists don’t know why weather/barometric pressure are likely to set off attacks for so many of us, but science has shown that it does. Others were fragrances like perfumes or cleaning products (bleach is the number one).
When I became daily chronic, triggers more or less went out the window. Nothing actually set off an attack as mine was 24/7, 365, but some things could certainly worsen my pain/symptomatic level. Weather is still the most reliable one, but fluorescent lighting is up there, along with odors and certain chemicals. Too much exercise can exacerbate it, but carefully paced exercise or exertion may or may not. I seem to have a stunning zero food or drink triggers…and I suspect some of us may have less of them than we think.
One of my friends is entirely triggered by environmental allergies ; she’s literally allergic to the environment.
I know allergens in the environment affect mine adversely.
The takeaway here: triggers may not be what we’ve thought they were, either in what we think they are or in their influence on migraine. This may not change how you see them, but it’s worth following.