Moving against migraine.
There are two pictures Rachel Koh looks at every day. She took these candids of her sons during a family vacation. At that very moment, she was pain-free and without any of her usual migraine symptoms. It only lasted about four hours.
Blessing and a curse
These short pain-free hours have only happened once or twice and give Rachel mixed emotions. She says it gives her hope that this could happen more often, but it also reminds her of a life stolen by chronic migraine disease in 2008.
Even among the roughly four million Americans who are chronic, Rachel belongs to the “exclusive 24/7 club.” This is an even smaller subset of people with chronic migraine disease who are never symptom-free (except for the random reprieve Rachel experiences for a total of less than 10 hours a year).
Long road to diagnosis
Rachel remembers having horrible episodes of head and stomach pain as a teenager. Doctors brushed her off, chalking it up to her menstrual cycle, telling her she couldn’t handle stress and accusing her of exaggerating her symptoms. Migraine is often stigmatized—even within the medical community—causing too many patients to go years without a diagnosis.
In her late 20s, almost a decade after what she believes was her first attack, Rachel was finally diagnosed with episodic migraine. She had access to neurologists and pain specialists who helped educate her on the four phases of a migraine attack: prodrome, aura, head pain, postdrome
For years, no health care provider had ever uttered the word “migraine,” but once she learned about the common symptoms and patterns of migraine attacks, she finally knew the name of her disease.
Rachel remembers her father and aunts talking about their grandmother. They said she was crazy, she complained all the time, she was delicate, and often stayed in her room. This sounded too familiar. Rachel never met her great-grandmother yet they faced the same stigmatization and likely the same disease.
When she thought about it more, she realized other family members described what she now knew were migraine attacks. Her father had “bad headaches” for as long as she could remember. Come to think of it, a sister, her aunt, and some of her second cousins all talked about varying degrees of head pain, nausea, and sensitivity to light and sound.
Armed with her own diagnosis and lots of information, Rachel encouraged her dad to see a neurologist where he discovered that he, too, had migraine disease. Even now in his 70s, Rachel’s father still has migraine attacks.
This prompted members of the extended family to see a neurologist to receive a proper diagnosis. In the end, generations of Rachel’s family had migraine disease that had never been diagnosed or treated. Through Rachel’s perseverance and advocating for herself, she was able to help her loved ones get the treatment they needed and deserved.
As Rachel began her own family, her health quickly deteriorated. By the time her oldest son turned eight, she had been hospitalized 60 times. Long gone were the ideas of having dinner together at the table and attending the boys’ sporting events.
Once an IT professional who led complex projects, she became unable to keep up at work and balance family life. Due to the constant pain, she left her lucrative job and focused on independent consulting so that she had more flexibility with her schedule.
Eventually, Rachel had to accept that her new normal was a life that was extremely limited.
For adults who transform from episodic to chronic migraine, this is a typical pattern of slowly leaving the workplace and dealing with all the emotions it entails.
Rachel is now applying for Social Security Disability benefits, a feat that can be extremely difficult to achieve since chronic migraine is not recognized in the “Blue Book.” (This lists the criteria and conditions that are acceptable to the Social Security Administration as valid factors when evaluating a disability claim.)
The next generation
When her son Truman was 10 years old, Rachel got a phone call from the school nurse. He was having excruciating head pain, nausea, and light sensitivity. She knew in that moment that the familial migraine lineage had just expanded to another generation.
Rachel immediately took Truman to the emergency room to receive the same cocktail of medications she herself had needed more times than she could count to get relief. Truman was the first in Rachel’s family to be treated and diagnosed during his first attack.
The next day, Rachel called her headache specialist, who squeezed them in. (The typical wait time for a new patient to see a headache specialist is six to 12 months.) Knowing Rachel’s family history, the doctor prescribed a preventive medication. However, the family discussed making lifestyle changes first, which included participation from ALL family members, not just Truman.
“After sticking to a solid sleep routine, regular exercise, hydration, regular healthy snacking, and reducing caffeine, I found that I did not need to take the preventive,” says Truman, now 15. He’s only had two significant migraine attacks since then. Both attacks were manageable with triptans.
After Truman’s migraine attacks, Rachel noticed a positive change in his attitude toward her. She felt that he and his younger brother, Bailey (age 11), had only seen her limitations.
The unrelenting head pain, nausea, and cognitive impairment left her unable to be the parent she had wanted to be.
“When I was younger, I got mad that my mom wasn’t always around to help me when I needed her,” says Truman. “From about age six to 10, I saw her hospitalized a lot and when she was home, she was in bed. I saw my Dad very stressed and it upset me. I now understand my mom’s pain and suffering better.”
“Migraine is not a headache for any of us, it’s a full-body assault,” says Truman, who recounts his worst symptoms as not only head pain, but also nausea, fatigue, soreness, and irritability. Migraine is “a disability for chronic patients like my mom.”
Advocating for others
Rachel has turned her focus toward patient advocacy. She is on the board of directors for the American Migraine Foundation (AMF).
In 2017, AMF started a campaign called “Move Against Migraine” which included a new Facebook group. It’s a place where patients can connect with others, ask questions in a judgment free space, participate in weekly Facebook Live events, and have dialogue with several devoted headache specialists who also help monitor discussions.
Rachel is an active moderator, offering sympathy and providing resources to those who come seeking help and guidance. She feels those with migraine are stigmatized as being weak, when “we are really stronger than the outside will ever understand.”
Moving against migraine
“Rachel has been an invaluable member of the AMF board,” says Meghan Buzby, executive director of the American Migraine Foundation. “Her business acumen and personal experience living with migraine has brought a keen perspective to everything the Foundation acts on. She and the other moderators of AMF’s Move Against Migraine online support group have helped us grow and maintain our community in a professional yet compassionate way. Rachel is an absolute pleasure to work with and I simply cannot say enough great things about her.”
American Migraine Foundation: americanmigrainefoundation.org/living-with-migraines
Move Against Migraine: americanmigrainefoundation.org/move-against-migraine
Headache on the Hill: allianceforheadacheadvocacy.org/headache-on-the-hill