Lake Atitlan, Guatemala

To be messed up in the head

I was a two hour hike away from civilization, up in a mountain in Thailand, when suddenly bright flashes started showing in my right eye. I had just set up camp and planned to stay the night, so this was the worst possible timing to have a migraine. 

I started to panic, because I knew what was about to happen to me. It's like Bruce Banner's transformation to become the Hulk, except I don't gain any superpowers, instead my brain gets disconnected from reality. 

It became a run against the clock, just hoping I could manage to get back home before the avalanche of pain began, and before I lost the ability to find my way and take care of myself.

I quickly packed up, and started walking downhill, with the flashes still incapacitating my right eye. I wanted to run, but tried to calm down and forced myself to walk at a moderate pace. Migraine and stress are tightly related, so getting worked up won't help. Perhaps I should have stayed at the camp? Then at least I would have had my hammock to sleep in. Now I was facing the risk of getting lost in the jungle and the danger of sleeping on cold dirt.

Migraine is a profoundly disturbing experience. For me it starts with bright flashes and dead spots in my vision, and then gives a very uneasy feeling for about half an hour. Then the real migraine sets in. First the left half of my face gets numb, and it then continues with the left arm, left foot and eventually most of my left side is all gone. This is followed by a massive headache and I gradually lose contact with reality. At first I get generally confused about things; known places and faces seem unfamiliar. Eventually I can't understand speech or even speak myself, and I lose the ability to recollect memories. Numbness and pain is unpleasant, but getting disconnected from reality is an extremely unsettling and frightening experience. It usually lasts for 12 hours, with about a week to recover from the attack.

As I was heading down this familiar trail, everything suddenly looked completely unknown to me. I stopped for a second and asked myself where the hell I were, and decided to continue down and stay on the track. I reached the main road as the massive headache set in. I had a vague idea of where I was going, but felt very confused and tired. My left side got numb as I headed back to the house. 15 minutes later I was safe.

Imagine, for a second, what it feels like to have your thinking faculties, your person, disconnected from your body and the rest of the world. You can't make sense of what you see or hear, you have no way of making yourself understood, you don't have access to prior memories of places or words, you are in an utter state of confusion because nothing makes any sense anymore, except an ever pounding vicious pain in your head. I would describe this as going insane. But at some level you remember that you have been in this state before, and that it will end at some point. So you just endure it somehow.

On the way back from the hike, I tried to come up with something to say to people I met, but I kept drawing blanks in my head. It is difficult to ask for help when you can't even explain what your problem is, or where you are trying to go. I heard some of them speaking to me. It kind of sounded familiar, but none of it made any sense.

During a few attacks I've ended up in the ER, over the fear to die or lose my mind. Unfortunately the doctors won't help. There isn't a single medicine they are allowed to administrate that will make any difference. The strongest painkillers won't make a bump in this hell-ride. This form of migraine has identical symptoms with brain hemorrhage, which makes me understand what those poor sufferers go through. Such a patient would never get a morphine shot, because a bleeding brain could die from it. So when I show up, the doctors suspect that I might have some hemorrhage too, and refuse the morphine.

I probably have a more general nerve problem, because I have also suffered workplace burnouts. I guess these are fairly common in the computer industry. You sit and focus all day, using your brain to the max with abstract problem solving. It is like forcing yourself to do as many Sudoku puzzles you can per day. And usually a lot is at stake in these software development projects, adding to the tension.

My problem is that I like computer programming too much, so I have no problem pushing myself really hard. Combine this with a high sense of responsibility and an underlying nerve problem, and you won't last long in the business. Like a deer in headlights, you will have frequent head-on collisions with migraine. But that is somewhat manageable. What kills you in the end is the slow erosion of your faculties, which leaves you permanently damaged from burnout. Except for the headaches, the symptoms are similar. The last day of work at my former company, I could not put letters together to form words and sentences anymore, and I had to spend months in rehabilitation to get somewhat functional. I was basically done in the business after that, and never really recovered.

From the migraines and burnouts, I suffered long and short term memory problems, and an extreme sensitivity to stress. It also numbed my emotions in some sense, and made social interactions harder, making me even more of a recluse than I already was. It kind of drained the life force out of me, making me unable to think clearly. And it took away the thing I love the most: my capacity for software development.

On the positive side, as I get older my migraine attacks get less intense. The last one at the hiking was fairly manageable. I used to be a Guinea pig for all the migraine medicines, none of which worked, but now suddenly the drug Cafergot seem to take some of the edge off of the attacks. And I finally managed to have a doctor prescribe morphine, which I keep with me at all times. Living in a non-stressful environment in South-East Asia also helps.

This text isn't a cry for sympathy. I still manage to have good life. But I think it is important to tell my story, because many others also suffer like this. Like me they get treated with suspicion, or even get accused of not being "team players". It is so foreign to the average person what it really means to be messed up in the head like this. So most people probably think it is all made up, or is just a matter of "getting your act together". Believe me, it is not.

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