Are Genetics to Blame for Headache Disease?

There has been a lot of research and discussion regarding migraine disease being genetic. The general statistics are: If you have 1 parent with migraine, you have a 50 percent chance of developing migraine. If both parents have migraine, your chances become 75 percent. However, what have you heard about other headache diseases and genetics?¹

History of headache in my family

Growing up, I didn’t realize how unusual it was that I had a mom and maternal grandma with migraine, and a paternal grandpa with cluster headache. Not only was cluster headache rarely diagnosed, it was often misdiagnosed as migraine. I grew up knowing they were 2 very different diagnoses. It seemed “normal” to me that I developed migraine since my mom had them. What I didn’t know then, was when I was in my 30s, I would develop cluster headache. In talking with my dad, I found out my grandpa didn’t get cluster attacks until he was around 50. At the time, treatment options were pretty scarce for migraine, and completely scarce for cluster. My grandpa would pace the floors with an ice pack on the back of his head.

Which came first?

For me, migraine presented first. In early childhood, I most likely had abdominal migraine which turned to migraine with head pain when I was 10. I did not develop cluster headache until my 30s. I then developed trigeminal neuralgia (TN) at 42 and Short-lasting Unilateral Neuralgiform headache attacks with Conjunctival injection and Tearing (SUNCT) at 45. While I was on the path to better management, I wasn’t quite there. Thankfully, when I was 46 I finally got on the path to managing it much better.

In connecting with others, I have found that the phenomenon of cluster headache sometimes skips a generation. There are several people that I have come across that also have a grandparent with clusters. So far, I’m the only one in my family who developed cluster headache outside of my grandpa. I began researching to figure out, if migraine is genetic, is cluster headache also genetic?

Is cluster headache also genetic?

What I found was fascinating! Honestly, the research is still figuring out which genes are involved and what a person’s chances are. The answer on the percentage varies from 0 to 22 percent, which is a wide range, but notably less than the general statistics of migraine. During my research, I ran into a study by Dr. Mark Burish and signed up immediately. When I share my story, I share the genetic link with my grandpa as well.²

My perspective on genetics

Genetics are complicated. When I developed celiac disease, I found out I have both genes, but had no problems until “one day” 1 or both of the genes turned “on.” I don’t know when or why and honestly it doesn’t matter. What matters now, is I have to manage it. I view cluster headache the same. I have 2 daughters, and both developed migraine. I hope they don’t develop cluster headache, but at the same time, if they do, I’m prepared. There is a chance they have a gene, but hopefully it doesn’t turn “on.”

My other diagnoses

I also have trigeminal neuralgia and SUNCT. I am the only person in my family with either of these diagnoses. However, I was also untreated and not well managed for a long time. The genes could be there, but also, this is where things are tricky. Maybe it’s a laundry list of things that got me to all these diagnoses. I do not discount the trauma link in my case, nor the genetic links. I feel as humans we are complicated and so there isn’t an easy answer for any of us. I hope there continues to be research to find genes responsible. Especially hoping these insights will help us find more targeted treatments for all headache diseases.

Do you have other family members who have the same headache diagnosis as you?