Living with Pain: My Third Cluster Headache Season

There are a few important points regarding this Op-Ed that I feel I must highlight:

1. I’m not a doctor. I’m a computer engineer and entrepreneur who was diagnosed with cluster headaches back in 2005. If I end up writing about drugs and/or treatments it is nothing more than an anecdote about how I responded to it and the relief they brought.
2. Intensity of pain: some medical journals call cluster headaches the most intense pain recorded by medicine. I do not intend to diminish the impact any other condition, chronic or terminal, has on people.
3. I’m writing this just as one episode ends, from a 7-ish in pain I’m now in a somewhat comfortable 3. The reason this matters is because I’m clearly far from happy and my tone might err too strong on the cynical side of things.

What are Cluster Headaches?

Shameless copy/paste from wikipedia:

Cluster headache (CH) is a neurological disorder characterized by recurrent, severe headaches on one side of the head, typically around the eye.[1] There are often accompanying autonomic symptoms during the headache such as eye watering, nasal congestion and swelling around the eye, typically confined to the side of the head with the pain.

Cluster headache belongs to a group of primary headache disorders, classified as the trigeminal autonomic cephalalgias or (TACs). Cluster Headache is named after the demonstrated grouping of headache attacks occurring together (cluster).[1] Individuals typically experience repeated attacks of excruciatingly severe unilateral headache pain.[2] Cluster Headache attacks often occur periodically; spontaneous remissions may interrupt active periods of pain, though about 10–15% of chronic CH never remit.[2] The cause of Cluster Headache has not been identified.

While there is no known cure, cluster headaches can sometimes be prevented and acute attacks treated. Recommended treatments for acute attacks includeoxygen or a fast acting triptan.[3] Primary recommended prevention is verapamil. Steroids may be used as a transitional treatment and may prevent attack recurrence until preventative treatments take effect. The condition affects approximately 0.2% of the general population,[4] and men are more commonly affected than women, by a ratio of about 2.5:1 to 3.5:1.[1]

How I Describe Cluster Headaches?

I’m going to assume you’ve had brain freeze at least once in your life. Now imagine it is happening for no apparent reason and it lasts anywhere from 45 minutes to 3 hours. To top that off, this will happen multiple times during a day for about 4–12 weeks.

During an episode I feel like someone is stabbing my right eye with an ice pick. This causes, what feels like, an infinite loop of pain that replicates all over the righthand side of my head concentrating on my eye, nose, and gum. My right eye gets all watery, I become photobic, my nose gets runny, and my breathing gets as asynchronous as an ill written javascript module.

Going back to 2005, when I first had one, I honestly thought I was going to die. Life has a fucked up tempo. A friend from Junior High died of an aneurism a couple of weeks before so my monkey mind was quick to assume I was next. I kept it to myself for a long time but this was the one time when I seriously thought about suicide but then concluded that such thoughts were no more than a narcissistic tautology. As I got more educated on the subject I found the disturbing reality that some of my fellow sufferers did go for the early exit because of this debilitating condition. Hence the nickname of “suicide headaches”.

The Impact on My Friends and Family

My lovely mother. I suffer the pain, she suffers my suffering. During my first 22 years nothing was more important to my mother than my college education. I was about to become only the second family member, in a couple of generations, to get a college degree. Where I come from distractions and excuses are more abundant than venture capital during the late 1990's bubble. This was the only time when her advice was about getting healthy rather than not getting a fucking B in a class I hated.

No one really knew or understood what was happening to me. People started visiting me at my mom’s in what felt like a goodbye mode in case my days were counted. It was enlightening but depressing to be honest. My friends will sneak in the occasional joint and brew to which my appreciation for camaraderie didn’t allow room for rejection. When I had my second season in 2010 my best friend, then roommate and now business partner, looked so confused when he once found me punching the floor in an attempt to feel pain somewhere else but my head. This guy spent countless hours with me in the ER explaining to a bunch of keystone cops that I was not there for the drugs but because I truly felt I needed someone with a fucking MD to validate that I was not dying.

One of the most frustrating social side effects of this demon was its impact on my dating life. Remember, I’m still in my 20's — the decade of voyages and exploration. I called it quits with two amazing ladies who I had no room to deal with at the time. I’m quite self-centered when I’m feeling good so when I’m in pain I love you is the last thing I want to hear or reply back. So it was clear to me that I didn’t want anyone this close during that time.

My coworkers at the time were assholes I didn’t care that much about so they won’t get any words past this honorific mention.

The Damn Meds

I won’t play doctor so I’ll keep this brief. In 2006 they prescribed me some pills that actually alleviated the pain. I took them twice. Main side effect: Erectile Dysfunction. At 22 I was ok with living with a headache but there was no way I was going limp so early.

Some alternative options worked out quite well but are not silver bullet as some of my hippy friends like to describe them. In fact, during a recent episode I was so frustrated that I allowed myself to use one of the most ridicule “treatments” and scientifically inept topical bullshit known as homeopathy. I’m so happy that night the pain intensified after I used it, it gave me so much material for my next homeopathy bashing session.

Why I’m Glad I Have This Condition

1. Reality: We get too comfortable in life. This is a great reminder that there are many things I won’t ever be able to control.
2. Patience: I had none. Once I get the earliest of signals that a headache is about to start I can only brace myself for the ride. There are no shortcuts and I must deal with it.
3. Strength: This is the toughest pain known to science. Period.
4. Business: I get to work with a lot of great people. But I also get to interact with a lot of pompous spreadsheet screwers bozos. When they do/say something irritating I can now tell myself “dude enjoy it, it is not a cluster headache”.
5. Mortality: Pain makes me feel alive, which is probably why enjoy tattoos this much. CH helps me appreciate life. I know it is a bit fucked up but it is true. Every time an episode is over, I feel more enamored with having a pulse.