Suicide Headaches: 5 Realities Of The Worst Thing Ever
They say that childbirth is the worst pain you'll ever feel, but those people probably don't understand what it's like to lose a Tamagotchi. Or have a cluster headache, for that matter. How bad can a headache be, even in cluster form? We'll get into that more in a moment, but for now, just know that cluster headaches are also referred to as "suicide headaches," and for exactly the terrifying reason you suspect. We spoke to five people who live every day with the fear of these headaches. They told us ...
You Can't Describe the Sheer Amount of Pain Accurately
We were not being dramatic in the intro (okay, we were being dramatic about our dead Tamagotchi, but not about the headache thing). Tons of people who have super-impressive initials next to their names insist that cluster headaches are the worst possible pain a human can experience. According to Brown University, it feels like having a tiny demon poke you in the eye. That's not a weirdo throwaway description we made up. There are illustrations.
You know your disease sucks when its descriptive drawings look like death metal album covers.
Everyone we spoke to vividly remembers their worst cluster headache. Ten-year-old Jeff's sleepover became overrun with nightmares the first time he experienced this level of pain. "It was really embarrassing, but also terrifying, because I immediately thought I had a tumor or something," he says. John recalls a pain so intense that he thought it would kill him then and there. "I remember one attack that was so brutally severe that I kept seeing the word 'ANEURYSM' flashing in bright red letters in my mind. I honestly thought something in my brain was going to break and kill me."
This can't be said enough: Despite what the name suggests, these are not "headaches" as you think of them. Everyone has had headaches, and around a quarter of you have suffered from a migraine. We don't want to downplay those -- we refer to migraines as "prom headaches" because all we can do when they hit is sit at home and cry. But just as a migraine is not the same as a headache, clusters are not the same as migraines. "I've had migraines," Jeff says. "Those are very painful, but nothing like this."
It's basically Excedrin Headache #666.
Clusters rarely last more than an hour, which you might think is a mercy -- at least they're relatively short. But that also means there's no effective legal medication for them; by the time that stuff hits your bloodstream, it's already useless. The upside is that clusters come at about the same time, for the same length of time, every time, so you'll at least know in advance when your hour in Hell is coming up. Maybe you should have asked for more than a Go-Gurt and some chili fries when you made that deal with the devil.
The Pain Is So Overwhelming That Nothing Else Really Hurts Anymore
Thanks to their cluster attacks, our sources have developed a superpower of sorts: They barely register other types of pain. Sheena says that stubbing their toes and getting hot oil splattered in their eye barely even registers on the pain scale anymore. Nickolus says, "I'm typing this with a broken knuckle and finger bone on my right hand that I've been able to completely ignore, due to the fact that I'm so used to pain being the norm. I didn't even get my hand looked at for days after it happened. The only, only thing that's been able to put me down pain-wise has been severe migraines and cluster migraines. No other pain seems ... important."
"Compared to that fucking eye demon, this is downright relaxing."
Tyler shares Nickolus' nonchalant attitude toward shattered body parts, having taken a moving vehicle to the face and walked it off like a goddamn Terminator. "I didn't have insurance at the time and I didn't want to be stuck with a bill, so I stuck it out on the couch. I had some broken ribs and a concussion. I'll take getting hit by the drunk driver any day than the cluster headaches."
It's like being a superhero with only one weakness: your own head.
The Treatments Are Bizarre (And Often Illegal)
Doctors try everything from steroids to high blood pressure medication to combat cluster headaches, but there aren't many effective legal options. That's the second time we've emphasized that fact, and here's why: "I use psychedelics to kill the episode," Tyler says. Yes, the same kind you'd take to communicate with the Earth Mother, or maybe make you think you're a Gummi Bear for an afternoon.
"Take two tabs and come down in the morning."
Of course, you can't simply pop a tab of acid whenever the need arises and trip balls through the pain circus, because that would make it difficult to function (and psychedelics take a while to kick in anyway). It's more of a prevention strategy. "I just use them when they start, and I'm good for nine months to a year. Unfortunately, you can't get a prescription for mushrooms or LSD."
So there's only one trip, and you choose the time and place, then you've got a whole season free of the devil ineptly trying to take your contacts out. On the slightly more functional end of the scale, John believes that marijuana not only helps to alleviate the pain of a cluster attack, but also eases the anxiety of the impending head-stab as well. Nickolus agrees: "There's too large a list of medicines that have been shown to work to ignore just because the government wouldn't like it if I decided to use them instead of the insane painkiller regimen they stick me with."
"This one is for the pain, and this one is for the side effects to the one for the pain,
and this one's for the side effects caused by the side effects to the one for the pain. That'll be $6,000."
Nearly everyone we spoke to sang the praises of one medication, though: oxygen tanks. Well hell, that seems easy enough, right? Why is this even a problem anymore if we've got such an accessible and simple form of treatment? Because, unfortunately, "it's really hard to get a prescription for that," Tyler says. "It's one of the most successful methods out there, but it isn't understood as useful for this treatment, so not a lot of people get to use it."
Word gets around about where to find illicit air, though. The solution: welding supply shops. But that means you can't use health insurance to pay for it, and since the oxygen tank and regulator can cost upwards of $400, some thrifty cluster sufferers have resorted to building their own makeshift rigs that involve huffing oxygen out of plastic bags, like the shameful air fiends they are.
"Just say 'No' to atmosphere."
If you'd rather stay away from the side effects of medication, you can always become a cyborg. Seriously, becoming the title of a Van Damme masterpiece is a medically viable solution. Cluster headache patients can volunteer to have implants installed to stimulate the nerves which will block pain with the touch of a handy remote control. It looks like a Bluetooth for the wrong side of your face.
Don't worry; there's only a slight chance this is Phase One of Skynet's plan.
Suicide Is A Huge Risk
"Suicide headache" isn't merely a badass nickname. Death is a very real side effect of this condition. Most doctors who specialize in the field have have lost at least one patient to suicide.
Sheena knows this feeling all too well. "I'm pretty damn stable, but by my second or third headache, before I knew what was going on, if someone had offered me a bullet, I would have taken it."
It's not that they can't handle an hour of pain every now and then -- if the witch you angered (you know what you did) happens to curse you with chronic clusters, they can occur multiple times a day and last over a year. Then there's the anxiety of knowing that it's coming. Sheena compares it to an abusive relationship: "You have the fear of the next cluster, and then the attack comes, and then you have a period where nothing happens. But you can't break up with your brain."
And the MRI machine makes for a shitty marriage counselor.
In one particularly extreme case, one young man approached Tyler while he was filming a documentary about cluster headaches and offered to let Tyler film his suicide. "He'd been averaging about 11 a day. He said the plans were made for that Saturday night. He said he'd film it for me if I wanted him to. I had to alert other people within our group. I couldn't be a part of that discussion, and I wanted to get him help."
Thankfully, he received the help he so badly needed and did not go through with his plans, but that's how this condition gets you. You have to nearly make a snuff film before anyone will take your "headaches" seriously.
"Ignore Frank. He's achy."
Tyler explains, "It's a very shameful disease. There's a stigma with headaches that it's a feminine disease, and there's a social stigma that people who have them are weak. So people hide this from their friends and go into this spiral of shame."
The condition comes with so much ridicule that it causes patients to isolate themselves, and leaving someone alone to stew in their suicidal thoughts doesn't make for a particularly delicious soup.
Medical Science Doesn't Know Much About Them, Because Nobody Cares
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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