Cluster headaches have a PR problem. They don't have a spokesman to champion their treatment, and would it even matter if they did? If Beyonce came out today and said, "I suffer from cluster headaches, donate now!" who would give a shit? "It's just a headache -- take an aspirin and deal with it!" Even a name like "suicide headache" sounds ridiculous and hyperbolic. It sounds like you're being a drama queen about your sissy little pains. They should probably take "headache" out of the name altogether. We don't call stomach cancer "cluster tummy aches." Maybe "Skullfuck Syndrome" would get people to pay attention.
Skullfuck Syndrome ladies, Skullfuck Syndrome ladies would open some wallets.
The problem is so obscure that most sufferers go undiagnosed and untreated for an average of five years. Jeff had to suffer for years before someone finally referred him to a headache specialist, who recognized the problem right away. "The second I said, 'My headaches always last 45-60 minutes, never longer or shorter' they knew it was a cluster." Before that, his doctors actually assumed that he was getting really bad allergies. Sheena's school nurse insisted they only had migraines. Tyler endured eight years of Scanners-style head explosions before he got his diagnosis.
At least Scanners guy's pain only lasted half a second.
The problem is that there isn't a lot of research out there. The illness isn't well-known even in the medical community. In 2009, cluster headaches made up just 1.8 percent of all headache-related studies. In 2014, headaches of any kind were only allocated 0.3 percent of the University of Texas Health and Science Center's $146 billion medical research fund. We'd suggest holding fundraisers, but again, who's going to donate to fight a measly headache?
Nickolus would like you to consider donating to headache treatment research in general, or reaching out to him on Reddit if you too are suffering. You can learn more about Tyler's cluster headache documentary here. John would also like other cluster headache sufferers to reach out to him on Reddit, or try www.clusterheadaches.com. Sheena is a Tumblr Rock N' Roll Superstar.
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