Cluster headache

Although known to medical science as one of the most painful things that a human being can experience, the medical industry does not have any good options for preventing or managing the trigeminal autonomic cephalalgias - commonly known as cluster headaches - that I experience several hundred times per year.

Some cluster headache sufferers refer to their affliction as a beast that stalks and preys upon them. I can see this point of view. The manner in which a dog shakes the head off of a rabbit is not unlike what a cluster headache feels as if it is doing to your brain. But I do not experience this condition as a beast. Beasts are explicable, whereas cluster headaches are not. Beasts leave vivid evidence of their attacks, while the violence of cluster headaches often disappears entirely in their aftermath.

Imagine that a small device has been implanted deep beneath your skull without your knowledge. When a button is pushed at some unknown remote location, the implanted device sends a signal to your brain - instructing tissues deep beneath your skull to crush one half of your head from the inside out and telling your autonomic nervous system to go haywire. Sometimes, the remote control for this device is in the hands of an evil scientist, who likes to press the button every time you drift off to sleep, or everyday at - for instance - 8pm, or an hour after you wake up on days where atmospheric humidity exceeds 55%, or every six hours around the clock. Other times, the remote control falls into the hands of this scientist's small child, who just presses the button for fun - repetitively - at random intervals. Now and again, the remote control gets lost, perhaps in this terrible fellow's couch cushions or something, and weeks or months pass by where the button does not get pressed. But then the remote turns up again, eventually, and your horror of unknown origin resumes.

Imagine that this goes on for years - the first several of which are spent being misdiagnosed. Even after they finally get it right, the doctors that you go to give you drugs that cost a fortune, sometimes make you sick, and do not actually work. You learn a hundred different ways to lessen the impact of this bizarre affliction on your world - but there is only so much that can be done. Often, the entirety of your week is spent alternating between writhing in incomprehensible pain and succumbing to the sheer exhaustion that comes in the aftermath of such. And when this condition's occasional severity inevitably forces you to disclose your health status to others, you find that very few people are even aware that the condition exists - despite that it is visited upon more than one-in-a-thousand people.
Can you imagine such a life? I suspect that you would rather not. Are you the sort of person that would stigmatize another for living with this particular sort of nightmare? My experience has been that the vast majority of people are, and do not even know it.

For me, putting together a decent life in an everyday context informed by this condition has required learning to acknowledge such things openly, and with little judgment. It has taught me a great many other things as well. These have shaped my thinking in some pretty basic ways, such that it would not make sense to omit mention of this ridiculous illness when attempting to describe the world as I experience it to you.   


1 comment:

  1. Hey man, wound up on this site after following the link from Steemit. I'm sure you've explored all sorts of therapies for your brain condition at this point, but I was wondering if you have looked into Cannabidiol (CBD), a derivative from the hemp plant. It has a very similar molecular structure to THC, but with none of the psychoactive properties. It's currently being studied for its effects on various neurological conditions, but research is definitely in nascent stages. I just thought it might be worth taking a look at and seeing if it could possibly bring you some relief.

    I've been taking it as an anti-inflammatory over the past month since I tore my Achilles. I know that a lot of parents are giving it as anti-seizure medicine to their children who they don't want to give narcotics to. I get it from Green Mountain CBD in VT. Good luck to you. -@anarchrysalis (Steemit)