Images of an Invisible Illness
Migraines are often referred to as an invisible illness. We Migraineurs master the art of hiding our pain to others. For those who know us well, one look at our face or eyes may be a sign that we are hurting. Some of us experience symptoms similar to having a stroke, which gives “Normals” a clue that something is physically wrong. But a large majority of us suffer in silence without anyone realizing the unimaginable pain ravaging our brains. Unless you’ve been one of the 36 million Americans who live with migraines, it can be difficult to understand how debilitating this disease can be.
My experience with migraine
I began having migraines at age 5, but they were episodic, averaging 2-10 attacks in a year’s time. In early 2011, at age 29, the migraines suddenly progressed into an almost daily occurrence. For two years, I struggled to find a cure while trying my best to continue working full-time. In March of 2013, under my headache specialist’s advisement, I stopped working to focus on improving my chronic migraines. I had hoped that during this period of short-term disability, I would be able to regain control of my headaches. I soon realized it’s not that easy. I have now been away from work for 15 months and recently my doctor and I decided that I will not be returning to my job as a banker any time soon.
Capturing the truth of life with migraine
When I stopped working, I began taking pictures in the hopes of chronicling my progress as I tried new treatments and therapies. I wanted to capture images that depict what it’s like to deal with the pain. My hope is to give people who don’t have migraines a better understanding of life with migraines.
Everyone’s journey in managing their migraines is different. This is my diary, my photo book, and my documentary of my quest to living a more fulfilled life while managing chronic migraines. Hopefully, it will also serve as a form of education to those who don’t suffer and provide comfort to those who do, knowing you are not alone.
Aura at the beginning of a migraine attack
Most of my migraines start with an aura. I could be looking at a beautiful sunset (like this one in St. Lucia) and then all of a sudden, a bright, sparkly spot is stuck in the middle of my vision. It starts as a crescent moon shape. Then it grows larger and larger until, eventually, it drifts out of my line of sight.
In this picture, I show the progression of the aura as it happens over a 20 minute period. Even if I close my eyes, the aura is there. I often say that “I can’t see” when the aura hits, but it’s only part of my vision that is missing.
There's no stopping my migraine after the aura
I can’t drive when this happens. I begin to get nauseous and panic about how I need to rearrange my day. There is no stopping the headache once the aura has arrived, even if I take all my abortive meds and pain killers right away. It’s similar to staring at a light bulb or the sun and then looking away but still seeing the shadow of the light, only more intense. When the aura dissipates, the real headache begins. It could last for half a day or three weeks. To see more depictions of the auras that migraineurs experience, visit this New York Times slideshow of artists’ renderings. #10 is my favorite.
What does it look like when a bad migraine starts?
Most people who see me on a regular basis say that they can see the migraine coming on by looking at my face. This picture accurately depicts what I look like when a bad migraine first starts. A blank stare, squinty eyes, and deep concentration. I also call it “Melty Face” because I feel like my skin is drooping off my face. "Melty Face" was in full effect this night out with friends (on the left) and when I was walking around downtown DC (on the right). On both occasions, I had to find a taxi to take me home so that I could suffer in a quiet, dark room.
Sensitivity to light when migraine hits
Unnatural light is painful to me most of the time and I live like a vampire in fear that it will trigger a headache. When a full-blown migraine occurs, any light might as well be a nail in my coffin. In the pictures below, I was at a Washington Capitals hockey game. I had to put my shades on indoors because the lights made me sick to my stomach. In the third period, a migraine hit. As much as I try to live a normal life while protecting myself from triggers, my head has a mind of its own.
On the left: Actual Picture of me watching the Caps play at the Verizon Center. On the right: But to me, even with my sunglasses on inside, the lights seemed THIS bright.
Metallic taste during the headache phase of migraine
When the headache is in full swing my mouth has a metallic taste and I crave salt. As the pain intensifies, I feel like it grows tentacles which unfurl and claw their way into the crevices of my brain and take root. The pounding in my head feels like I’m using an ice pick and a chisel to break up the roots of pain that have taken hold in the brain. Behind my eyes, the nerves get squeezed and all I can do is squint to protect them from the intruding light around me. I can feel my face sag and the lights in my head dim and soon no one will be home, it will all be numb.
Learn more about side effects.
The struggle with sleep during a migraine attack
My best friend and worst enemy is sleep. Here, I’m asleep in the car, which happens more than I’d like to admit. A severe migraine hits when I’m out and I have nowhere to go, so the car becomes my refuge. Sleep can sometimes help to “reset” me and I wake up feeling refreshed. I also use it as a crutch to sleep through the pain. On an average day, I sleep 8-12 hours at night and often take a 1-3 hour nap during the day. If I’m going through a bad spell, I could sleep as much as 18 hours a day for multiple days in a row. I lose track of all time. Since leaving employment, I’ve worked very hard to keep a consistent sleep schedule even in times of severe attacks. I’ve made progress, but it remains a struggle.
Learn more about better sleep hygiene.
My many, many migraine medications
Every April, the Department of Justice and the Drug Enforcement Agency sponsors The National Prescription Drug Take-Back Day across the country. This is a chance to safely dispose of your meds without harming the environment or risking the drugs getting into the wrong hands (kids, contractors entering your home, family members, etc.). Over the years, I collected more than 30 medications I had been on at one time or another trying to combat migraines. I gave back over 500 pills!
I currently take 6 medications on a daily basis and have another 4 medications to use to abort an attack. If I didn’t have insurance, the costs of these meds would be about $1,800 per month.
Find out how to participate in the next Drug Take Back Day for info about safely disposing unused medicines.
Relying on migraine injections when the pain is intense
I don’t respond well to Triptans such as Imitrex or Maxalt, which help a large majority of Migraineurs. When the pain is really intense, I now rely on a drug called DHE (dihydroergotamine), which works to narrow the blood vessels around the brain, and Toradol, an anti-inflammatory. I inject both drugs myself at home or I make my boyfriend do it for me – he’s a pro at it. When a migraine gets really bad, we’ll use this for a day or two before calling in the experts...
A trip to the ER when I can't find reprieve from migraine
When days of DHE and Toradol shots don’t cut it, I throw in the towel and go to the ER. It’s a little sad when the doctors and nurses know you by name, but at least they don’t think I’m a drug-seeking junkie anymore. On average, I need help from the ER once every 2 to 3 months to break a bad cycle of migraines. I have a system down with my headache specialist who will send instructions to the ER before I get there to avoid unnecessary tests and useless drugs. Here I’m giving the thumbs-up sign after feeling better from an IV cocktail of steroids, an anti-inflammatory, anti-nausea and painkillers. Normally within 3-5 days, I’ll join the land of the living again.
Finding myself lost in brain fog
Below is a statue of Andrei Sakharov, Nobel Peace Prize Winner, from Russia. This was taken outside of the Russia House in DuPont Circle in DC. I can’t find any reason for why he is posing like this except that with all that knowledge, his brain must hurt. My concentration isn’t what it used to be. Between the headaches and the medication side effects, I find myself not paying attention to what I’m doing sometimes. I’ve been known to forget how to get home, lose my car, not remember entire conversations, and miss the steps in written instructions.
I don’t drive as much as I used to because I often feel that I’m not fully aware of my surroundings. I stick to a 3-mile radius around my house most days. If I forget to turn down a street on the way home or get lost in an otherwise familiar place, we call it “Pulling a Katie.”
Using alternative medicine for migraine
After taking a 12-week pain management class, I opened up to the idea of using alternative medicine to manage the migraines. I believe that the right balance of medications and self-healing can help you feel more in control of your pain. I’ve tried acupuncture, biofeedback, gluten-free diet and physical therapy. I stuck with each method for at least 6 or more months before moving to the next option when one didn’t seem to be helping. I’ve found that the most effective alternative method for me is yoga and deep breathing.
Exhaustion and fatigue left me out of shape
My biggest challenge when I started disability was getting out of bed. Most days I used all of my energy trying to work and then I would crash at home and start again the next day. Two years of this cycle left me severely out of shape.
Exercising to better manage my energy during migraine
I literally got winded walking 3 blocks down the street to the grocery store. I knew that exercise was going to be key to better manage my illness. My goal was not to be a bikini model (although that would be nice) but just to have more energy and to feel strong. I worked with a personal trainer for a year who understood my physical limitations. I now have the knowledge and desire to work out on my own or to go to group fitness classes. Some days I feel great, other days a workout can give me a migraine if I push too hard, and occasionally I watch 70-year-old men put me to shame. Exercising has not been an easy road, but it has been the most rewarding.
Learn more about my exercise journey.
Getting Botox for migraine
Botox is FDA approved to help migraine headaches. I’ve been getting injections of 200 units every 10 weeks for the past 3 years. There are 31 different injection sites around the head, including the forehead, temples, and back of the head. Botox has a life cycle of its own. For me, I don’t begin to get relief until 2 weeks after the treatment, and then it starts to wear off 2-3 weeks before my next treatment. The intensity of the headaches decreases for 4-6 weeks but does not completely stop them from occurring. This has been one of the most successful treatments for me. These photos show me trying to express different emotions after the Botox has kicked in. Notice that my forehead doesn’t move!
Hair loss from a migraine medication
Soon after I Ieft work, my hair started falling out. I spent months in and out of the offices of my GYN, a dermatologist, and an endocrinologist, until my neurologist accurately diagnosed that it was a medication side effect. It was caused by a preventative medication that I had been taking for years. In order to stop the hair loss, I weaned off the drug that had been vital in managing my headaches. It was a painful process. This was the first physical, outward sign of my struggle and I was very sensitive about it. I was losing handfuls of hair each day for months. I thought for sure I was going to need to sport a buzzcut. A year later, my hair is growing back and my naturally wavy hair has become very curly.
Read more about hair loss.
Lidocaine for migraine
Late August 2013, I was admitted for a week to the Jefferson Headache Clinic in Philadelphia. One of only 3 centers like it in the U.S., the clinic uses IV lidocaine (an anesthetic) to try to “reset” the brain. With this drug, the brain gets a vacation from the continuous firing of migraines in hopes that it will reduce the number of headache days by an average of 50%.
This photo shows my first day in the hospital, sporting a PIC line for the 6 medications that ran through the IVs, a heart monitor, and a bed alarm. The high levels of lidocaine cause hallucinations. Having never experimented with such drugs, I didn’t know what to expect so I came in with an open mind. At first, the hallucinations were merely fun colors and shapes, but after a few days, I would randomly see people or objects that I knew weren’t there.
Did the lidocaine work?
For about 4 days after leaving the Jefferson Headache Center, I felt like a fog had been lifted from my head. It had been years since I knew what it was like to have moments of relief. Sadly, the migraines came back like an old friend you never want to see again.
Read more about my first stay at Jefferson.
My second attempt with lidocaine
I went back to the hospital for a second round of intense treatments in February of 2014. The doctors felt that repeated treatments could chip away at the migraines and increase my chances of relief. They used a different mix of medications this time and the hallucinations were less scary.
How was the second round?
The headaches are just as frequent after two treatments, however, the intensity has declined overall. My daily pain level averages between a 4-5 on a 10 point pain scale. Several times a day it will spike to a 7 or 8 and now I have a nasal anesthetic to manage the pain, which works wonders.
I’ve been able to stop using opioids on a daily basis, now reaching for them only 1-3 times per month. ER visits are down and overall I feel like my body is cleaner without the opioids. A dear friend visited me in the hospital and we pretended to be on a Caribbean island (left). In the middle is my poor bloated and bruised belly after daily shots of Heparin. And Cedric the Frog kept me company while tripping (right).
Learn more about Opioid Usage.
A year of challenges and good days
The past year has been filled with many challenges, but I worked hard to enjoy the good days. I completed an 8-week mini-med school class at Georgetown University, I helped with my family’s wine ventures, I ran into a pod of dolphins while sea kayaking, and attended a music festival.
Enjoying the good days
How can I have a life and have chronic migraines? It’s not easy. These pictures don’t show the medications I needed to enjoy these few hours of fun, they don’t show the days of rest I needed afterward and they don’t show the innumerable number of times I had to skip events or cancel at the last minute. It’s been a struggle to know when to share these good times via social media. Many people have a hard time reconciling the person who canceled plans with you last week, but is enjoying a concert this week. I’ve learned that I deserve to live life as much as I can. Those who really know and love me will be happy for the times I manage to find joy in the otherwise lonely world of having a chronic illness.
Learn more about migraine stigma.
Migraine and disability coverage
Recently, my doctor and I decided that returning to a full-time job was not the best thing for me. While I’ve tried many new treatments since leaving work, the migraines have not significantly improved. I find that I only have about 2-4 hours a day where I can be a functioning member of society. I am lucky to have long term disability coverage that will give me a livable income until my condition improves. I’m also in the process of applying for Social Security disability. Understanding disability income options and restrictions has been quite an education, but it’s something everyone should prepare for, whether you have migraines or not.
While I may not be returning to banking anytime soon, I’ve found a way to turn my journey with chronic illness into a platform for helping others. In Dec 2013, I joined the Migraine.com team as a staff writer and website moderator. This has been the most fulfilling and rewarding experience. I’m learning so much through this process. Who knows where writing can take me. This may not be the life I had envisioned, but I’m taking every opportunity to turn it into a life I am proud of.
How much has your migraine disease changed or evolved over time?