"Clusterheads," a Documentary in the Making

Have you ever felt misunderstood by friends, family and even doctors? You try so hard to make them understand what you’re going through. How much effort it takes you to just get out of bed in the morning? Or you want them to really get how much pain you are in? There’s a difference between “us” and the “normals.” Most of us used to be normal, so we know exactly how they feel. But once we crossed over into the darkness that plagues our heads, it’s hard to help the normals understand.

Some normals are compassionate, some think they have the cure for you, some pull back because they don’t know how to deal with your health issues. Have you ever wished that everyone had a Migraine at least once in their life so that they could better understand you? It seems cruel to wish a Migraine on someone, but I secretly do.

Sometimes I think that if someone just shadowed me for a day, they would get it. There is an alternative, a way for people see the debilitating effects a Migraine has on you. How about a documentary that follows people fighting the same thing you are? That’s exactly what Tyler Mann has set out to do.

Tyler suffers from one type of Trigeminal Autonomic Cephalagia's (TAC), called Cluster Headaches, also known as “suicide headaches.” Even as a Chronic Migraineur, I can’t begin to understand how painful Cluster Headaches can be. Clusters are often described as a sharp pain in the eye, like a knife or hot poker. They usually happen in cyclical patterns, often around a change in the seasons. In contrast to Migraineurs who prefer lying down during an attack, most Cluster sufferers are restless and agitated, while others pass out from the pain.

Tyler’s Cluster attacks are seasonal and therefore he’s able to plan his work around that time. He is an accomplished producer and cameraman. He’s worked with Animal Planet, A&E, TLC, The History Channel, Nat Geo and CNN. He thought the best way for people to understand Cluster Headaches was to turn the camera toward his face and to film others with the same condition.

The title of the project is Clusterheads. Tyler and his producer, a dedicated advocate producer, Cindy Reynolds, teamed up to start this documentary in 2014, while they both continued their “day jobs.” Cindy also suffers from Clusters. I’ve had the pleasure of meeting a couple of the participants in this documentary at Headache on the Hill this year. I hope to bring you their stories and thoughts about this project in future updates.

The film is not ready for primetime viewing yet. According to Tyler, there is no set deadline on when the project will be complete. As with any creative venture, he wants to let it grow organically until he feels there is an appropriate ending.

However, in September (which also happens to be Pain Awareness Month), they revealed a 2 minute trailer for the movie at the annual Clusterbuster meeting in Chicago. Clusterbusters is an organization dedicated to researching and promoting the treatment of Cluster Headaches. Up until this meeting, the documentary had been funded mostly by generous sufferers who wanted to see this project launched. Clusterbusters announced at this meeting that they have signed on to sponsor Clusterheads.

As Tyler and Cindy move through the different phases of the process, I will keep you up to date. I hope this will energize the Migraine and Cluster communities. Tyler plans to submit the finished product in several film competitions, which would expose our issues and triumphs to an entirely new audience.

Watch the inspiring movie trailer here.

Learn about the Clusterheads project here.

Please share and use #clusterdoc and #clusterfeaturefilm.

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