“The process of getting an accurate migraine diagnosis was one of the most confusing, fearful, and difficult periods of my life,” Natalie Sayre tells SELF. Sayre, 28, lived with chronic migraine for years before getting a diagnosis.

After the onset of her first migraine when she was 19, Sayre’s migraine attacks worsened, but she had a pretty limited understanding of the scope and intensity of the condition. At the time, she focused on what she describes as Band-Aid-type solutions, like taking over-the-counter and prescription migraine medications whenever a migraine attack struck in hopes of lessening or shortening the episode.

“It wasn’t until I’d pushed myself to the brink of daily, debilitating pain and was forced into medical leave from my first full-time position that I took migraine disease seriously,” she says.

At 22, she was diagnosed with chronic migraine by a neurologist at the UCSF Headache Center, and she has now spent the past several years looking for ways to manage, live with, and reduce the burden of migraine. Sayre tells SELF that she experiences some form of head pain nearly every day.

Sayre is far from alone in her experience—migraine commonly goes undiagnosed and untreated. Noah Rosen, M.D., a neurologist and director of Northwell Health’s Headache Center, tells SELF that only about half of people with migraine ever get a diagnosis—a harrowing stat confirmed in a study in The Journal of Head and Face Pain.

When it comes to chronic migraine, where headaches are present more than 15 days each month, “we're probably successful in diagnosing that maybe even less than a quarter of the time,” Dr. Rosen estimates.

Migraine diagnosis is often a long and frustrating process.

Candace Helton, 32, saw three doctors over a period of six years before getting a migraine diagnosis. She found it hard to explain her headaches to doctors because her symptoms and headaches were inconsistent.

“Sometimes I experience them once or twice a month, sometimes not at all,” she says. “The pain was inconsistent as well. Sometimes it's just this dull headache that I can brush off, and sometimes it's so intense that I can't function properly. But as years went by, I realized that these headaches were happening more and more often.”

The process of getting a migraine diagnosis was disheartening, Helton says. “I often got frustrated because I thought a headache was supposed to be a very easy thing to diagnose, and I got tired of trying and trying different medications that didn't work,” she tells SELF. “There were days when I just didn't want to get out of bed, so I slept a lot and sometimes I would just wake up with a throbbing headache.”

Considering that migraine affects nearly 15% of the population, you’d expect that diagnosis wouldn’t be as challenging as it is. So what, exactly, is getting in the way of diagnosis? Neurologists say there are a few factors at play.

For starters, there is no single diagnostic test for migraine. Instead, migraine is diagnosed through a combination of a person’s history, their symptoms, a thorough physical examination, and by ruling out other causes of headaches, Huma Sheikh, M.D., a neurologist and assistant professor of neurology at Mount Sinai-Icahn School of Medicine, tells SELF. Physicians commonly refer to the International Headache Society’s International Classification of Headache Disorders (ICHD) as a diagnostic tool, which is fairly straightforward. 

What makes diagnosis tricky is that there are multiple conditions that share some of the symptoms of migraine. Because of that, diagnosing migraine can be a long process of elimination marked by a series of negative results on other tests—such as blood tests and MRIs. “That can be extremely frustrating for some people,” Dr. Rosen says. 

Another complicating factor in migraine diagnosis is a person’s ability to access specialized care. Many people go to their primary care provider with migraine-related concerns, but these practitioners often do not have extensive training in migraine diagnosis or treatment.

“If a patient does speak to their primary physician or ob-gyn about their headaches, these initial point-of-contact physicians may not realize that the headaches do need to be treated as a medical condition,” Dr. Sheikh says. “They may not know the right questions to ask to determine if the headaches are a migraine or other primary headache syndrome.”

Seeing a specialist isn’t always an option either, given that there are so few of them around. According to Dr. Rosen, the number of headache specialists in the United States is far fewer than it should be, given how many people experience migraine. These specialists include neurologists and other physicians, such as internists and family physicians, who have taken the Headache Certification Exam through the United Council for Neurologic Subspecialties. Among them, there isn’t a ton of racial or ethnic diversity, adding an additional barrier to care, Dr. Rosen says. People often relate in a special way to people who are like them and understand those core facets of their identities, Dr. Rosen explains.

Finally, migraine is an often mysterious condition surrounded by myths and misconceptions. As a result, many people don’t know much about migraine, from common symptoms to the vast number of ways it can present. Often, people with migraine try to self-treat their symptoms with over-the-counter medications, caffeine, or lying down in a dark room, rather than seeing a physician, or continuing to try to get a diagnosis if early attempts were not successful.

Finding the right migraine treatment often involves trial and error.

There’s no way to sugarcoat this: Treating migraine can be a huge challenge, and unfortunately, there is no cure. Not only will the right treatment vary from person to person, but it can even differ within an individual from one migraine to the next.

“Sometimes the migraine sufferer needs a toolbox of different ways to address different conditions because a migraine can be mild, it can be severe, and you need to treat that differently,” Dr. Rosen says. “You can't treat it the same each time.”

The same is true when it comes to DIY approaches. While deep breathing may help alleviate a mild migraine, Dr. Rosen says that same tactic may just amplify the frustration when faced with a severe migraine.

These days, there’s a glimmer of hope as far as migraine treatment is concerned. Dr. Rosen says we’re amid a “golden age of headache,” where there are more treatment options available than ever before. “But that provides other challenges as well,” he says. “Even though we have more tools and better tools, it's still a challenge to figure out which is the right one for the right person.”

Migraine treatments range from acute medications to preventive ones as well as non-drug therapies. When determining a treatment plan, physicians consider factors like age, medication side effects, how the migraine affects the person, and other health conditions. For example, if migraines tend to make you nauseous or throw up, a physician probably won’t suggest taking a pill at their onset.

“A lot of it depends on open discussion with the patients and what they're looking for,” Dr. Rosen says. “But most successful treatments are a combination strategy involving trigger identification, behavioral changes like improving hydration and their sleep habits, as well as pharmacologic agents.”

Following a vestibular migraine diagnosis, Evey Rosenbloom, 38, tried various medications and treatments for a year. Looking to stop the intense dizziness she experienced, she met with nutritionists, acupuncturists, chiropractors, and massage therapists, and even experimented with breathing techniques.

She found a bit of relief, but the dizziness still made her feel awful. “It was terrible. The migraines would still hit me suddenly, with no warning, so I stopped driving, and I was so dizzy and off balance, I was leaning on walls for support.”

She eventually found relief when she began to actively focus on stress- and anxiety-reduction tactics, including practicing mindfulness; saying positive affirmations; exercising; dancing with her kids; and prioritizing fresh air, nutrition, and sleep. “Within about two weeks of making these changes, I burst back to life,” she says.

For many, identifying and managing migraine triggers—like stress and poor sleep—is an important aspect of migraine management, Dr. Sheikh says. That said, migraine triggers can also be unavoidable—like the weather or hormonal fluctuations. “However, for those who know their triggers are controllable—like certain foods—avoiding them can be helpful in preventing migraines,” Dr. Sheikh says.

This technique has been helpful for Sonia Frontera, 57, who says she learned to manage migraine by listening to her body. “I paid attention to the triggers that preceded the headaches and what actions brought relief,” she says. “Whether it was taking medication right away, applying ice, lying down, using essential oils, massage, and others.”

For people who are still struggling to find a migraine treatment that works, Dr. Sheikh recommends starting a headache diary where you track the date the headache occurs, whether you took any medication, and any potential triggers you think may have caused the migraine—like the weather, what you ate, what your stress level was like, and any hormonal changes that could play a role. “This can be very helpful in picking up patterns and finding triggers,” Dr. Sheikh says. “It is also very important to find a practitioner that you connect with and you feel is responsive and willing to work with you.”

As trying as this process is, support and hope can go a long way. 

Even if you’re feeling extremely frustrated on the pathway to migraine diagnosis or treatment, Dr. Rosen encourages you to never lose hope, and remember that new migraine treatments are constantly being developed. He says that he’s even seen some refractory cases (which describes people who haven’t found relief after trying several evidence-based treatments) finally respond to new treatments or trials.

Dr. Sheikh emphasizes the importance of finding a doctor who you connect with, as well as support from other people with migraine. “There are also Facebook pages that can be helpful in addition to resources like the American Migraine Foundation and American Headache Society that have patient-specific forums that can be helpful in finding people who have also been through similar situations of trying to find the right diagnosis [and] treatment.”

Helton, who went through multiple doctors and treatments before finding a migraine management plan that works for her, urges other people with migraine to not be afraid to get a second—or even a third—opinion.

“Sometimes doctors will tell you that there's nothing wrong with you, but you have to trust your gut,” she says. “If you really feel like there is something wrong, put your foot down and just see another doctor that might actually help you identify what is going on.”

Sayre echoes this sentiment when asked for her most important piece of advice to fellow migraine patients: “Understand that every person’s migraine experience is as unique as their fingerprint,” she says. “What works for one migraineur—from heat versus cold therapy to the dosing of daily preventative medications—might not work for your unique, one-of-a-kind brain.”

The post The Winding Road to Migraine Treatment appeared first on SELF.