Honoring Fathers with Migraine and Headache Disorders
People often view fathers as stoic, strong male figures whom their kids think are superheroes. We don't like to picture dads in pain. Something about seeing the man you think is "unbreakable" in agony hurts more than most. Migraine disease, cluster headaches, and other headache disorders affect men nearly as much (or more so in some conditions) as women. For Father's Day, let's celebrate those dads in our lives who are incredible parents while also battling chronic head pain.
Tom was 17 when he was hit with his first migraine attack, but it wasn’t until his 40s when episodic migraine disease severely impacted his family and work life. His proper diagnosis and treatment journey was long and arduous because he doesn’t respond to typical migraine medications. One neurologist suggested he simply work with the ongoing attacks after he failed to respond to two interventions. He promptly found another neurologist who diagnosed him with migraine disease and new daily persistent headache (NDPH). Thankfully, CGRP drugs have saved him from the worst migraine attacks.
Raising four daughters with migraine and NDPH
Living with NDPH and migraine disease makes growing and raising four daughters a challenge. Tom’s kids are now 15, 20, 27, and 29. “It was tough when they were younger,” Tom says. “I dreaded hearing them ask, ‘Do you have a headache today?’ It just broke my heart. They never gave me any grief about having an attack. They continued their lives without me being there.”
Missing events because of head pain
Missing events such as family get-togethers and dances are all too common for those living with one or more headache disorders. For Tom, NDPH is a constant mild headache beneath the more severe “maelstrom” of migraine disease. As their children grew up, Tom’s wife was his stand-in, filling in the gap, watching over and advocating for their daughters on the days his head pain stopped him from being there. Missing out on those special times was the hardest aspect of fatherhood and migraine disease.
What do his daughters think?
“As a kid, it was extremely difficult to understand completely how the pain was,” says Sydney, Tom’s middle daughter. “I didn’t understand why he couldn’t help me improve in softball some days or why he couldn’t play a board game or even watch a movie. All I saw was the man I looked up to the most be in the worst pain of his life, and I couldn’t help, not even a little… these migraine attacks, they don’t only attack the people you love, but they attack the people around you.”
While migraine disease and NDPH have taken a toll on his career and home life, Tom’s children have only love and respect for the man they call “Dad.”
“What I love most about my dad is his integrity, loyalty, and his willingness to never give up no matter how hard the fight is,” says Sydney.
Bob has lived with cluster headaches for more than 4 decades. He spent his 20s, 30s, 40s, 50s, and 60s in pain. Cluster headache attacks come on quickly and peak within 5-10 minutes, and can re-occur 8 or more times a day, especially at night. Bob’s neurological condition permeated every aspect of his life, from his earning power and career to the time spent with his 4 children and 10 grandchildren.
Battling cluster headaches while raising four kids
“Sometimes you can be present but not necessarily as ‘present’ as you’d have liked,” says Bob. “When you’re up all night in pain, you can’t take time to recover in the morning. You have to go to work. Then come home and be as present as possible while preparing for the next full night of pain.”
Cluster headaches and difficulty finding good medical care — let alone treatment — led Bob to create a nonprofit organization in the early 2000s called Clusterbusters. His commitment to helping others and advancing research has been immensely beneficial to the patient community. But, living with a headache disorder steals from every area of your life. Bob missed many precious moments with his kids while battling attacks.
Hiding the pain and grief
“I tried to keep as much of the painful portion of the time away from my kid’s sight,” says Bob. “I know they heard more than I’d ever wanted them to hear. My kids were aware of the suffering involved and were always supportive. I don’t recall any of them ever complaining about the costs of time, missed events, or any loss. That didn’t stop me from grieving over the lost time or missed events. I’m proud that they all seem to have an increased sense of compassion and empathy for others.”
What do his children think?
The Wold children are in their late 30s and 40s and continue to adore their father and admire his strength:
“What I love most about my dad is his dedication and love for his family and others, including strangers that he doesn’t even know,” says Bob’s youngest daughter, Alicia. “His kind soul and willingness to listen to anyone in need is what I love best… The fact that he does ‘survive’ each attack just shows how much love he has for his family and friends because he’s not only fighting for himself but us as well.”
“What I love most about my dad is his laugh. And his mustache, of course! I love that he puts his heart and soul into helping others with cluster headaches,” says his middle daughter, Tracy. “The way I feel when he gets a headache is a huge hole in my heart full of sadness where there’s nothing I can do to help… When I used to be living at home and present during his attacks, I would count down the seconds until it would be over for him, praying to God that his pain would stop… We truly love our dad endlessly.”
“His ability to deal with bull**** and keep trucking is what I love most,” says Bob’s son, Phillip.
“What I love most about my father is his compassionate heart for others and empathy,” says his eldest daughter, Debbie. “He is kind and just a cool guy! He is supportive also. I feel helpless and angry and heartbroken when I see or know my dad is having a cluster headache.”
Andrew developed chronic cluster headaches at the shy age of 12. There were injections, IV infusions, nasal sprays, and other options that worked here and there, but Andrew has largely been treatment-resistant from the first attack. Unlike Tom and Bob, he is at the start of the journey of fatherhood. His daughter, Lucy, was born just six months ago and is the light of his world, which is often tainted by head pain 8 or more times a day.
Life as a new father with chronic cluster headaches
“I do my best to not show my pain to Lucy because I don’t want her to be scared or worried or sad about daddy hurting,” says Andrew. “She seems to get agitated and fussy when I’m trying to care for her while hurting…I never want her to remember her daddy as someone who was always in pain. I do my best to be silly, happy, and make her smile always so that when she sees me hurting, she knows it’s only for the moment.”
While Lucy isn’t quite old enough for an interview, the light in her eyes when she sees her dad walk into the room and the wide grin she flashes as he picks her up speaks volumes.
Fatherhood takes many forms
Dads tend to carry the world on their shoulders. They want the best for their children and never want them to feel pain. Migraine, cluster headaches, NDPH, and many other chronic pain conditions rob some men of the day-to-day joy of being a father, but one thing’s for certain: Your children love you just the same, and you will always be a superhero in your child’s eyes.
Have you shared your migraine story with us yet?