“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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (6)
  • JP Summers
    3 years ago

    Great article Katie. I was experiencing chronic migraines for about a year when I started to feel a different type of head pain that was so torturious I seriously thought my right eye and right side of my skull was going to be the death of me. I knew there was no way this could be migraines. Even at a week straight of 10+ pain levels Migraines never caused me to fall to my knees or scream out in hopes someone would kindly take me out of my misery. I brought these new types of symptoms to my neurologist attention and she confirmed that I was experiencing cluster headaches. Thankfully I had already built a very strong connection in the cluster headache community when I joined the Clusterbusters at the 2014 Headache On The Hill and received a great amount of information that has helped make my second neurological disease a tad bit easier to deal with. I met Tyler Mann last month at the Cluster Headache conference and can see how passionate he is about making sure his documentary gets out there for others to learn more about why they call this medical condition the suicide headache.

  • winifred53
    3 years ago

    I’m a lifelong Trekkie. I often tell my children and friends that I wish I could do the Vulcan “mind meld” so that they could experience my chronic migraine symptoms. Even though they say they understand I know they still don’t “get it” I have 25 headache days a month and that’s hard for anyone to understand. This site has been a life saver for me.

  • Bertab
    3 years ago

    Yes, l have. While I try to be appreciative of “normals” with their herbal supplements or clinical trials. I will not give up my treatment. I will not be manipulated into going to the “clinic” of your business partner who administers said herbal supplements and clinical trails. I will go behind your back to my insurance company and their preferred pharmacy. I will find out that all you had to do was write a prescription. I will find out you denied me treatment. And I will leave you. I will go to a head ache specialist of my choosing. I will see her in less than a week. We will come up with a treatment plan. I will call in a week with a cluster headache. I will shed a tear when she offers me a same day appointment. I will take that appointment and show up early. The lights in the lobby will be dimmed and there will be no smells. I will be checked in and seen in 5 minutes. I will tell her my story. She will ask some questions and start writing. She will say I want to break this pain cycle. Does this medication work? Yes I will give it a try. I will wait for approval of my for my previous treatment with modification. I will take the new meds and I will feel better.

    I wrote because Yes this happened to me. This is my storie. I was literally told the day of my appointment that treatment was denied and would receive a consultation. Fast forward 1 urgent care, 1 E.R., 2 old headache specialist, 3 primary, 4 pain specialist, and 2 new headache specialist visits later…. I feel better. Oh and I forgot… I had two calls from a medical supplier with no name or number wanting to sell me the medicine that had been denied. All they needed was a credit card and they refused my health savings account so I refused them.

    All of this has happened since the 20th ofAugust, 2015.

    I just want to thank all of the contributors. No contribution is too small. I found you because a friend of friend liked an article, and she shared. I have drawn strength from all of you.

    Like and Share.

  • tiggmom1
    3 years ago

    I’m looking forward to this documentary. Maybe it will shed some light on our type of pain.

    I’ve often thought if people could experience a migraine they’d re-think their words and actions to migraineurs. You know those devices that they put on cars to simulate driving drunk so teens will understand the hazards of drunk driving? I wish there was a similar virtual reality device people could wear to simulate a migraine…the pain, nausea, wonky speech, blurred vision etc. I think that would help a lot of people “get it”.

  • wdjbaxter
    3 years ago

    I absolutely feel misunderstood! I have actually been told that migraines aren’t real or that I just have a “headache” and to go take an aspirin. HA! Migraines laugh in the face of over the counter medications, sometimes my migraines laugh at my prescription medications as well.
    I think this is a great idea. I was told for most of my teen years that my migraines would be gone by the time I turned 30. Imagine my disappoint when all they did was get worse and worse. There is so much misinformation about migraines out there and so much we still don’t know. I am finding out new stuff everyday and I have been suffering most of my life.
    I look forward to seeing this documentary.

  • Lisa Robin Benson moderator
    3 years ago

    Thanks for sharing this, Katie. It’s great that there will be more attention brought to cluster headaches which in my experience seem even less well known than migraines. I personally didn’t know about them until I entered the migraine community. Will definitely share your article.
    Lisa

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