Living With Chronic Headaches: One Mom’s Story of Coping With an Invisible Disability
Key takeaways:
Chrissy Mitchell, a homeschool mom of two, has been living with occipital neuralgia — a type of chronic headache — for years.
The condition is debilitating but invisible to others, so she’s had to be brave about speaking up and advocating for herself.
Chrissy has struggled to find doctors to help her and offers advice to others on choosing the right doctor.
Before 2018, Chrissy Mitchell lived the typical, busy life of a mom with young kids. The Kirkland, Washington-based mother of two, homeschooled her daughters, participated in her passions of ceramics and fitness, and taught Zumba classes part time. Then, after suffering an unknown infection doctors could never identify, Chrissy started to get strange headaches.
She’d suffered from tension headaches since 2002 when a car accident left her with whiplash. But this was different. The pain started behind her ear and then curled up and around her head. Sometimes her scalp would be tender or she’d feel like she had an earache. Her hands would sometimes go numb. The symptoms arrived every few days and could be debilitating, either preventing her from moving her head or forcing her to lie in the dark for hours.
Chrissy and her husband started visiting doctors to look for answers. Their long, difficult, expensive search for the right diagnosis upended their lives. But it also taught Chrissy how important it is to advocate for yourself when you have an unusual, invisible condition.
A long road to the right diagnosis
As a stay-at-home parent, Chrissy gets her health insurance through her husband’s work. The limitations of their particular plan complicated the process of finding a doctor who understood Chrissy’s condition.
“It’s very difficult to find somebody who’s in your network,” Chrissy says. She has seen two different neurologists, an ear doctor, a spine doctor, a migraine specialist, and several different general practitioners in her search for answers.
Eventually, after many wrong turns, Chrissy was diagnosed with occipital neuralgia, a rare type of chronic headache that’s caused by irritation or injury to the nerves in the head. Because the condition is so unusual, many doctors Chrissy saw were unfamiliar with it. Instead, she says they tried to pigeonhole her into more familiar diagnoses, like migraines. That lengthened her search and multiplied the stress on the family.
“I’ve got two small kids. It’s not convenient,” Chrissy says of juggling so many appointments. “It can be a six-week wait to see somebody.”
Once Chrissy received the correct diagnosis, she was prescribed an occipital nerve block every 4 months and then, more recently, a low dose of nortriptyline, an older type of antidepressant that helps calm the nerves. She also goes to physical therapy twice a month to help manage her condition.
The nerve-blocking injections are unpleasant. ”If you’ve ever had an epidural or spinal, it’s about the same,” Chrissy says. But they relieve most of her symptoms while they last.
Unfortunately, though, the treatments haven’t provided long-lasting relief.
“It’s usually cured within one to two occipital nerve blocks. But I’m going on 4 years now of having it,” Chrissy says about her condition.
Her long struggle has changed her life. Her kids have gotten used to mommy lying down in the dark for hours. She’s cut back on teaching Zumba and has gone from exercising 20 hours a week to 3 hours a week. She also avoids ceramics projects that involve heavy lifting, because they can bring on headaches.
The family has also suffered financially. While Chrissy is grateful for her husband’s good job, the costs of her condition are considerable.
“We are on something called an HSA, which means we have to pay everything upfront until we hit $3,000, which doesn’t take very long. Once we hit that, then we only have to pay 20%. Occasionally, we will almost hit our out-of-pocket maximum, which is $8,000 for the year. So it gets a little crazy,” Chrissy says.
Lessons for others suffering from rare or unusual conditions
Chrissy’s ongoing battle with chronic headaches is difficult, but it’s also taught her how to both stand up for herself and lean on others.
“Head pain is not something that you can easily explain to people,” Chrissy says. Her condition isn’t immediately visible, and most people haven’t heard of occipital neuralgia. Even so, Chrissy has learned to push herself to be more open about her struggles.
“I’m not a person who speaks up. I don’t want to put my medical issues out there for people to talk about. But when you do let people know, ‘Hey, I have this chronic headache issue,’ people are a lot more understanding than you might think. They may not understand the pain that you are feeling, but they will emphasize. So be brave. Speak up. Because if you don’t, they’re not going to know what’s going on,” she advises others with invisible or rare health issues.
Chrissy also suggests that while it’s OK to ask more of others, it’s also OK to ask less of yourself. “My life kind of went upside down. I worked 20 hours a week. And then 10 classes a week, and then maybe subb[ed] for three. Your body goes a little bit crazy and it’s very detrimental to be hard on yourself. So give yourself some grace,” she says.
Finally, Chrissy shares some hard-won wisdom about finding the right doctor for you. Besides being informed about your condition, she urges other people not to accept any healthcare provider who doesn’t listen to and respect you.
That’s particularly important for people with less common problems or who have symptoms that don’t fit typical patterns. Chrissy says she knows what it’s like to feel dismissed and misunderstood. It’s taught her to speak up.
“You don’t get to check me off and put me in this category,” she says. “Don’t let people push you around.”
What the future holds
Chrissy may be armed with more wisdom now, but she’s still struggling with frequent headaches — especially when her nerve block begins to wear off.
What’s next for her?
She’s investigated several more experimental treatments, such as implanting electrodes to stimulate the troublesome nerves or surgically moving nearby blood vessels. But these interventions are unlikely to bring more long-lasting relief than her current injections, so she’s decided against them for now.
She’s also researching clinical trials and research groups that are looking into other treatment options, including some in Europe.
Wherever her treatment journey takes her, one thing is for certain: Despite her headaches, Chrissy will be in the driver’s seat.
Her struggles with chronic headaches may have cost her a lot, but it has also taught her how to speak up for herself. When people can’t see the pain you’re feeling, it’s up to you to explain it to them, she’s learned. If you do, you’ll be surprised how many people are willing to help.
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