What do you wish the public understood about migraine and head pain?
Nancy (Grand Mom Badri): “People need to get rid of negative stereotypes. I wish doctors spent more time learning more about migraine so better treatment will become available.”
Shirley: “This is a disease that is riddled with stigma and silence. I would say that people with this disease will do a great service to the public when they begin to make others aware of their struggle.”
Julia: “You cannot just ‘pop an NSAID or Tylenol’ to feel better when you have migraine!”
Sydney: “It’s a blind illness and pain does not discriminate. Pain is subjective, so you can’t tell someone how to deal with theirs since everyone experiences it differently.”
Seventy percent of migraine sufferers have family history of migraine. The four women quoted above represent three generations of migraine disease in one family.
While each person is affected differently and has experienced varying degrees of disability, these women work hard to manage their lives with migraine. More importantly, they are all devoted to raising awareness.
Nancy: The Matriarch of Resiliency
Nancy, also known as Grand Mom Badri, is the matriarch of the family at a young 82 years old. She remembers her mother having migraine attacks. Her own started at the age of 21 and seemed to be related to her menstrual cycle, lasting four days or more. She lived in fear of leaving the house, not knowing when an attack would hit.
At the height of her attacks, most doctors didn’t take her seriously. She was told that exercise would cure her attacks, but for her it only made symptoms worse. Preventive medications were not available. The most effective medications she received were Demerol, a potentially addictive narcotic; compazine, used to treat nausea; and dihydroergotamine (DHE), which works on serotonin receptors. Many of these medications are still used today, among a variety of other options.
“I would say childbirth is much less painful and easier than having migraine!” says Grand Mom Badri. She eventually accepted her disease, but often felt guilty about not always being present for her husband and three children. Grand Mom Badri’s advice to those newly diagnosed is to join support groups. She is also concerned with ending the stigma and educating the public.
When Grand Mom Badri went through menopause, her migraine attacks stopped. It’s been over 20 years since she experienced one. However, this disease afflicted future generations of women in her family.
Shirley: The Spiritual, Easygoing Mom
When you meet Shirley Kessel, you can feel her calming presence. Her sheer kindness draws you in. She practices meditation, mindfulness, and yoga, and attends silent meditation retreats. Her hugs transfer her positive energy onto you, no matter how you are feeling.
Even more remarkable than the calm she brings into every room is her intense love for her family. She and her husband have three daughters, ages 20, 25, and 27. They are the center of her universe.
One study reported there is a 50 percent greater risk of having migraine if an immediate family member suffers from the disease. Since Shirley’s mom and grandmother both did, the odds were not favorable. At age 18, she began experiencing migraine attacks. Today her condition is considered chronic (having 15 or more migraine days a month). She credits Botox, nerve blocks, meditation, yoga, and massage as the combination that helps her manage headache. Triptans also make a difference, but she is very sensitive and easily prone to medication overuse headache—a potential side effect of that class of drug.
“Pain is inevitable; suffering is optional.” This quote pushes Shirley to live her life to the fullest extent. “Living in fear and worry is a choice, so I can radically accept my pain and still have a full life if I chose to live with what is real, rather than try to fight it, wish it away, or wonder what my life would be like without pain,” she explains. Through her yoga and meditation practice, she found herself in a better position to deal with the emotional pain that accompanies chronic diseases. She recognizes her limitations, but doesn’t let them define her.
Julia: The Generous, Loving, and Compassionate Middle Child
Julia experienced her first migraine attack at age 10, almost a decade sooner than when her mom and grandmother began to have attacks. On average, she has a migraine attack once a week, lasting eight to 10 hours. Now 25, she has had difficulty maintaining relationships, keeping up with her friends, and completing chores around the house. Migraine is “a series of attacks which come unexpectedly, and can be seriously debilitating,” says Julia.
She feels that her condition has allowed her to become sympathetic to others, recognizing that everyone faces their own obstacles. “I learned that migraine doesn’t define who I am. I am capable of a lot, despite my disorder… it just might take me longer to accomplish tasks,” she explains.
Julia has found exercising five to six times a week helps her to better manage her pain, something that can be incredibly difficult for those with migraine. Like her grandmother, Julia encourages others to find support groups online or in person to understand they are not alone. Find an outlet, however big or small, to help you feel human, she says.
Sydney: The Persistent, Stubborn, and Compassionate Youngest Child
Sydney’s daily routine includes a healthy diet, exercise, and a consistent sleep schedule that help manage her migraine attacks. Pain has “made me more conscious about my body. I don’t take my healthy body for granted,” she says. Like her sister, Sydney feels that she is more aware of other people’s needs: “Pain does not discriminate.”
When Sydney was 16 she began complaining of headache. Over a three-month period, it quickly progressed to a daily headache. Then she had to miss school because the migraine attacks became so frequent. By the end of 10th grade, she had homebound tutoring instruction. The private tutoring sessions were not enough for Sydney to keep up with her 11th grade studies because she had become chronic. She was eventually able to return to school for her senior year.
Still a mystery, her migraine attacks decreased to episodic status. Sydney thinks that a combination of exercise and being in a calcitonin gene-related peptide (CGRP) study (a promising preventative drug in Phase III trials) could have contributed to the reduction.
Currently, Sydney has an average of eight attacks a month, which can make balancing her schoolwork at George Washington University difficult. But she’s learned to be patient, she says, because life is not always perfect.
Miles for Migraine
Even while battling her own chronic illness and watching her daughters’ lives be affected by severe migraine attacks, Shirley didn’t sit back—she got involved in migraine awareness and fundraising. Eileen Jones, a registered nurse with migraine, self-funded the first Miles for Migraine race in 2008 in San Francisco. Once Shirley heard about the race, she reached out about expanding it into more cities.
Shirley is now the President of Miles for Migraine. In 2017, races will be held in Phoenix, Chicago, San Francisco, Philadelphia, and Washington, D.C. There will also be a “virtual race” for those who cannot physically participate in the 2-mile walk, 5K, or 10K. Miles for Migraine has also held its first patient education day and one-day youth camp.
Shirley has a specific vision for all Miles for Migraine races: “Our mission is to create a community where people with migraine and headache disease can come together and be in relationship with one another. We want to create the conditions so that people will feel supported enough to self-advocate for migraine, since it’s such an isolating and stigmatized disease.”
Every member of the Kessel Family, whether or not they have migraine disease, is supportive of the cause and plays a part in helping Shirley with the Miles for Migraine races. Migraine has united the family to raise money and educate others to reduce the stigma.
Miles for Migraine: milesformigraine.org
Runnin’ for Research: runnin4research.org
Headache on the Hill: allianceforheadacheadvocacy.org/headache-on-the-hill
American Headache and Migraine Association: ahma.memberclicks.net