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What I Wish People Knew About Living with Chronic Migraines

Yes, the chronic migraine attacks are daily and part of Sarah Ogden’s life. The diagnosis and pain crippled her before she found strength through lifestyle adoptions to regain control of her own health.

There’s the life that Sarah Ogden led before chronic migraines and the life she leads now. “It took me a long time to come to accept that I simply will not be able to have my “before life” again and I’ve made a lot of progress in seeing that even with chronic migraines, this new life that I have is beautiful, too,” she explains.

Before chronic migraines, Sarah Ogden grew up in Reading, PA. She went to North Carolina for college as a political science and English major. Afterward, she traveled to Northern Ireland to get a master’s degree in media studies as a Rotary scholar. She then settled in Washington, D.C., where she worked in government relations for 11 years.

It was then that the chronic migraines started and everything in Sarah’s world, as she knew it, began narrowing.

“In the beginning, before the pain became unbearable, I tried to continue working,” she recalls. “I slept in my car at lunchtime and would need to sleep through the weekends to recover from keeping up with work and the schedule that it required. That meant I couldn’t show up to social events and because of that I started to lose friends.”

Sarah decided to go on short-term disability, however, once she returned to work, it wasn’t long until she went on disability again. “I wound up taking it again and again intermittently between hospitalizations,” she says. “Physicians tried basic migraine protocol in an effort to ‘get me back on my feet,’ but it just didn’t work.”

There were days that Sarah says that all she could tolerate was lying down on her bed and listening to the humming of her refrigerator. Eventually, she could no longer work. She stayed in her apartment until her savings ran out, holding onto the hope that she would get better. Sarah says it wasn’t until she moved back home to her parent’s house in Reading, PA, that she realized that was not going to happen.

“By the time I returned to my childhood home, I was burned out,” she explains. “I used all of my energy trying to maintain my old life, my life before migraines, and I just wanted and desperately needed to rest. My parents supported me and told me to take a break. So I went to bed and I didn’t get up for three years.”

Sarah Ogden in bed with chronic migraine

Light is so painful for Sarah during migraine attacks that her mother once covered her windows with tinfoil.

Sarah remembers the emotions that flooded her body in that bed—the anger and deep sadness—as she realized that this pain she was enduring would not go away. “I had juvenile rheumatoid arthritis when I was 10 years old so I was no stranger to pain and varying levels of disability,” she says. “I had fairly severe arthritis. I had to get joint replacements. But the pain I was experiencing from chronic migraines was different than the pain I endured before.”

Whereas she learned before how to overcome the way, adapt to it or reinvent expectations for herself in the past, this pain stopped her in her tracks. “It was like hitting a brick wall,” she says. “I was stuck and I felt hopeless.”

Sarah began searching for anything that would help, which meant appointments with many doctors and visits to headache centers. “Then I met Dr. William Young and he helped me dig myself out of the hole of hopelessness I put myself in,” she says. “He never gave up on me and introduced me to this idea of ‘third space.’ I learned that I can’t define myself by my migraines. He helped me remember who I am and bring me back to a functioning person.”

Regaining autonomy over her own life meant adopting a whole new lifestyle. Sarah needs standard care, and that includes a medication regimen, but it was the lifestyle changes that Sarah found the most impactful. “I wouldn’t have guessed it but things like yoga, meditation and nutrition keep me the most grounded,” she says.

Jefferson recently partnered with Control M Health, which is an app that helps chronic migraine patients maintain healthy lifestyle habits, including sleep tracking, hydrating tracking, recipes for anti-inflammatory foods, as well as guided meditations and gentle exercises. “Dr. Young told me that these lifestyle adoptions were not going to cure me, or take the place of my medication, but that they are going to set up my brain for success,” Sarah explains. “I learned brains love stability. The more I could do, the more empowered I felt.”

Slowly she developed a new routine which she maintains today, which includes getting up at the same time every day and meditating in the morning. Afterward, Sarah divides up the day based on how she’s feeling. “Some days I can spend time reading or doing some arts and crafts,” she says. “I like to write so if I’m able to sit at the computer, I like to write there. Other days, I’m mostly lying on the couch, watching TV if I can, or listening to a podcast.”

Sarah Ogden journaling her symptoms

Sarah tracks her goal-setting using Ctrl M worksheets.

Sarah ends each day, no matter how it went, with meditation. “It took baby steps but I’ve come a long way from where I was mentally those three years I just couldn’t get out of bed,” she says. “In rebuilding my life, I moved out of my parent’s house. I met an incredibly supportive man that accepts me just as I am and now we live together.”

Despite the support of her parents and boyfriend, though, Sarah still struggles with the stigma that surrounds chronic migraines and how it impacts her life. Here, she shares the things she wishes people understood about chronic migraines and the people who endure them.

One of the hardest things about having chronic migraines is that no one can see them.

You can’t always tell if I’m in intense pain or if I’m having a good day. Sometimes people will not entirely believe that I’m in as much pain as I am. I think they struggle to reconcile what they are seeing with what I am telling them. If I tell someone I’m really hurting, but they see me standing, and making sense to them, and talking, they could think I seem fine. I learned how to manage my pain and in a way, I’m used to it now. I can’t just crumble every day into a heap and cry if I’m experiencing a severe spike in pain. I wouldn’t be able to function. I learned how to power through. But please believe me if I’m telling you I’m having a bad day.

There are around 39 million people in America who suffer from migraines. And because of the stigma that surrounds them, they hide their pain or do not seek medical help. People think migraines are the excuse you give to get out of work when you’re actually hungover or overstressed.

Chronic migraine is a stigmatized disease.

Migraine is a highly stigmatized disease, and I wish people knew that although migraine is one of the leading causes of disability worldwide, it receives very little research funding relative to its disease burden. This is important because it means that for years, there were very few migraine treatments, and now there is a shortage of headache specialists (only about 500 in the U.S., while there are about 39 million Americans with migraines). Part of the reason is that migraine primarily affects women. Another factor is that people don’t think of migraine as a disabling neurological disease.

Please do not offer me medical advice or recommendations.

I want to preface that people are generally really well-meaning and want to help, but I remember when I first began telling people about my migraine attacks, they would ask me if I was sure it wasn’t a brain tumor. Or suggest essential oils to rub into my temples or the bottoms of my feet. I also heard stories of people who knew someone else who started doing yoga and they were “cured.” It becomes tiring to have to explain that this is a primary disease and a neurological disorder. The fact is that people in the chronic migraine and illness community have been managing their health for a long time, and I can guarantee, we’ve heard it before and have already done our research.

A migraine isn’t just a bad headache.

I think there is this perception that a migraine is a headache and yes, the ache in my head is certainly one component and it is bad, I’m not going to lie. People are aware of common symptoms of migraine attacks like the accompanying sensitivity to light, sound and smell, as well as nausea and vomiting. But there is a whole host of other symptoms. I get really bad dizziness and vertigo. I experience heavy fatigue and brain fog that gets so bad I’m not able to think straight. I will sometimes be talking to someone and I know a migraine attack is coming on because suddenly they sound like Charlie Brown’s teacher, or I will be looking at someone and know what I want to say to them, but I can’t make the words come out. It’s like I’m trapped in my body. You can also have visual disturbances. I’ll see an aura just before a migraine attack, or conversely, there can be occasions that I can literally not been able to see at all. Migraines can affect your whole body. They can make your skin hurt. There are times when I feel sunburned all over. Now I think of a migraine less as a headache but more like a neurological meltdown.

The best way to support someone with chronic migraines is to be understanding.

Like anything, the best way to support someone is just to ask them what they need. If I’m having a particularly bad migraine attack, it’s always nice if someone is quiet around me and is willing to turn down the lights and maybe bring me an ice pack and a Gatorade. But more than that, I really need understanding. My days are unpredictable which makes it hard to make plans. For example, I was supposed to go to my brother’s house for an event he planned and I offered to do some cooking for it. But that week was a week I couldn’t get out of bed most days and I had to back out of doing my part of the cooking. Because it was my brother, he understands that I’m not faking it or trying to blow off the plans. He knows the kind of pain I experience. That kind of understanding goes a long way because I’ve had friends who just couldn’t take it and dropped out of my life because they thought I was “flaky.”

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