I have lived with a headache disorder for 29 years. Since 2018 I have been disabled by cluster headache. Have you heard of cluster headache? These are severe, sudden attacks on one side of your head; I describe it as multiple fire pokers through my eye and it spreads through my cheek, jaw, and neck. It feels like something is clawing at my face and ripping out the back of my head. If it sounds like a horror movie then you’re imagining the right thing. These sudden attacks can occur several times a day - at my worst they occur 6-8 times every day with each attack lasting 15 minutes to 2 hours. The oddest thing is that they occur about the exact same times every day - I can expect them at 2am, 9:30am, 7:30pm etc. daily. I haven’t had a pain free day since 2018.

It took me 6 years to get a correct diagnosis of cluster headaches. Why? Well, historically it’s been thought that men were more likely to have cluster headache and women with cluster headache are often misdiagnosed with chronic migraine, and that is what happened to me as well. One reason for this is that the symptoms present differently in women. In fact, when I first first described my symptoms to a neurologist I was told that what I was experiencing was impossible and it was all made up in my head. This misdiagnosis led to years of medication, treatments, and even two surgeries that were targeting the wrong things. The misdiagnosis also stole days away from my family and caused me to lose my job in education which I invested in a master’s and doctorate to obtain. It also contributed to two challenging pregnancies where I spent much of the time in bed struggling with very little access to acute and preventative therapies to help me cope. Life over these past several years would have been much less debilitating had my chronic pain been evaluated thoroughly and my condition identified earlier, and if there had been more awareness around headache disorders and their impact. Luckily I have access to treatments that are giving me some hope. 

I support The Headache Alliance's mission to raise awareness and demand action for the over 40 million Americans living with migraine and other headache disorders. Please support me in this historic effort!