Around the age of eight, Caitlin Webb, now 22, began getting migraines whenever she had her braces adjusted. After starting her period at age 12, the migraines became chronic, and the pain intensified. She’d have extreme dizziness, nausea, vomiting, cold sweats and uncontrollable shaking. “It makes you so fatigued,” she says. “The fatigue lasts forever. It never feels like it goes away.”

The ceaseless misery of the headaches upended Caitlin’s life. She had been active in Girl Scouts, took dance classes and played a variety of seasonal sports, but all that was curtailed by migraines.

School became a challenge, too. Often, her peers and even teachers didn’t understand what was going on with her. “We had to do a lot of advocating for her,” says her mother, Diane, “It was very poorly understood that children could be affected by migraines and that these headaches could be of this much consequence to their lives.”

When Caitlin began seeing pediatric neurologists, she learned she had three different types of headaches disorders—migraine, cluster headaches and occipital neuralgia—in addition to several other health conditions.

Over time, she developed coping strategies. She found that sometimes just blowing single notes on her flute made a difference; it helped regulate her breathing and relax her tense body. She also learned that movement, particularly in the cold, such as ice skating, could decrease her pain. “Life hacks in combination with prescribed medications and other co-treatments,” have been essential in managing my headaches,” she says. “But I was still suffering quite a bit.”

Relief at Last 

A breakthrough treatment came into her life when she was 19.

Caitlin had begun seeing an adult headache specialist, in part to begin transitioning out of pediatric medicine, but also because her longtime pediatric neurologist had recommended a pain management treatment he couldn’t provide. Caitlin could have seen a pain management specialist in New York, but that would have meant traveling there three times a week from her home in Totowa, New Jersey. Thankfully, she was able to find a headache specialist closer to home: Regina Krel, M.D., director of The Headache Center at the Hackensack Meridian Neuroscience Institute at Hackensack University Medical Center.

Dr. Krel started Caitlin on a pain management treatment, and while she did get some relief, it wasn’t significant. But a new class of medications for preventing migraine—calcitonin gene-related peptide antibodies (CGRP) monoclonal antibodies (mAbs)—became available in May 2018, and Dr. Krel thought those might be worth trying.

Starting the CGRP mAbs produced “miraculous” results, Caitlin says. She was migraine-free for 50 days straight. “It was beautiful,” she says. “With the migraines, I have this brain fog and my words can get jumbled up. But for those first 50 days, I felt like my brain just opened. I was able to think clearly.”

While that stretch of relief hasn’t been repeated in the two-and-a-half years since, between the quarterly CGRP mAbs infusions and her supportive treatment therapies, Caitlin has, at times, been able to reduce her headache days to four a month when she regularly had 25 to 30 a month, says Dr. Krel.

“Migraine is a neurological disorder for which there is no cure at this time,” Dr. Krel says. “Management has to be a combination of preventative therapy, rescue therapy and lifestyle modifications.”

Caitlin understands she’s in it for the long haul, but her current treatment protocol allows her to focus on her college studies and do things she enjoys, like photography, hiking, and searching for geocaches with her boyfriend. “Because the headaches are not constant, they're not as frequent, they're not as intense,” she says. “I do have more freedom now.” 

Next Steps & Resources:

• Meet our sources: Regina Krel, M.D.
• To make an appointment with a headache specialist near you, call 800-822-8905 or visit our website.

The material provided through HealthU is intended to be used as general information only and should not replace the advice of your physician. Always consult your physician for individual care.