Story of Resilience Through Generations

Inherited migraines have shaped generations of my family. I’m a fourth or fifth-generation migraineur—though it’s hard to explain what that truly means. I watched my mother lying in a dark room with cold packs and washcloths, and I remember being told to lie down with her as I watched cartoons while she slept. I didn’t understand until I became a mom how hard it is to parent through so much pain. Mom always said I was a doll compared to my kids. With autism, they live in their own bubble and don’t always understand what others are going through.

Early onset and migraine diagnosis

I don't remember ever not having headaches/migraines. I was eleven years old when they got worse, and I was officially diagnosed with migraines. It was due to puberty and the hormones affecting my brain. We (my mom and I) started a migraine journal and began trying to track triggers. We had a great family doctor, who in the early ’80s, put me on Orudis. I tolerated it just fine.

Trial and Error

When the triptans became popular, I took Imitrex in the beginning. I got to the point where I had chest pain, and my blood pressure was too high. Around the age of 20, I took Maxalt without any side effects—at first. Of course, it didn't last. Again, it was my blood pressure, and I had already been put on a beta blocker in my mid-teen years. I remember trying other medications as a teenager and into my early to mid-20s. I saw a variety of neurologists, but in the end, due to my triggers, nothing worked.

Predictable triggers and ER visits

I was open to trying different cocktails of meds, but it didn’t matter—with certain triggers, I always ended up in the ER. It was like clockwork: menstrual migraines, 24–72 hours after a stressful event, and even weather migraines, though I didn’t understand them at the time. I always had a bucket for throwing up, a dark room, a cold pack over my eyes, and one on the back over my occipital bones.

School struggles and migraine triggers

Migraines made it difficult for me to go to school. I always had a migraine after state testing, a difficult project, and finals—and that was before college! Mom had her routine, and I had mine. We both had other medical issues that influenced our migraines, too. I had PCOS, and anytime I had cyst problems, you could guarantee I was in a lot of pain.

Losing faith in treatment options

I eventually gave up on doctors and just suffered for several years, starting with my pregnancies. I gave up because it seemed like whatever med they tried, it wouldn’t work. I officially can’t take triptans, I’m allergic to codeine, and I just never found anything that helped me get through my graduate courses and short working career.

Parenting through pain

I gave birth—with the help of science—to a beautiful and very loud little girl. The migraines got worse during the early years of parenting. I once remember being in bed, miserable, with my bucket, and my daughter happily came into the bedroom and demanded that I get her a peanut butter and jelly sandwich right then. She couldn’t grasp that I couldn’t lift my head off the pillow.

Becoming the caregiver

I knew something was off with her. She wasn’t developing like her peers, and she was so hypersensitive. But they didn’t want to diagnose a young girl with autism, ADHD, or any of the other comorbid mental health issues she had. During this time, I watched my headache days increase per month. I was worried and focused on getting my daughter help. I quit taking care of myself to put her first. She did get help, and I became her therapist here at home.

Trying again for relief

As she stabilized, I became someone who had migraines every day of the month or year. I finally agreed, one last time, to see a neurologist. I was 35. She tried hard to help me. We tried the best treatments and meds available at the time—Botox, opioids, Topamax, and many more. My mother and I figured out that I eventually tried over 100 different medications and treatments.

A glimmer of improvement

My son was born while I was working with my daughter. That’s when I realized how bad I was. Most days, I couldn’t get out of bed. If I could, I would sit in my little nest in the corner of the sofa. It wasn’t ideal or my idea of parenting, but I had to accept that I had intractable migraines, trigeminal neuralgia, occipital neuralgia, and TMJ. It was devastating because I wanted to get down on the floor and play instead of living the life I had.

Hoping for more

I took one last referral to a neurologist who specialized in complex conditions like mine. Today, 17 years later, with the help of my parents and my husband, I still have migraines most days of the month—but the severity is better. I’m on a different regimen of medications. I still have my severe triggers, and I have to plan going out of the house around them. My children have grown up with me sick with these diseases, plus chronic vertigo now. But we make it work.

A different experience

Do I want all these diseases to be controlled so I could have a normal life as society would see it? Absolutely. I want to give up the wheelchair, walking cane, stability bars, and the recliner. But I’m better than I was, and I keep crossing my fingers that new treatments will come out and my family won’t have to be caregivers anymore.

Lastly, my daughter has inherited migraines, too. But at 24, hers are controlled, and she only has a few severe ones a month.