I’ve been dealing with migraines since I was eight years old. The kind of migraines that are more intense than the regular pedestrian headaches many of us would feel from time to time. It was like being in a pressure cooker on an almost daily occurrence as I went about my life.
While average people might pop a regular Panadol to deal with their headaches, my basic dose was five Neurofens at one go. When in pain, all logic goes out the window. It has been years of self-medication and visits to the doctor.
At 16, I was on more painkillers than a wounded soldier on a battlefield. I was given a beta-blocker (Propanolol) to take everyday for six months. This is something surgeons sometimes take to steady their hands during surgery. The side effects of that was a thinning of the blood, lowered energy and dizziness – it’s just not a long-term solution, especially for a 16 year old. But I dealt with it in my own stride since migraines run in my family.
Because I was exposed to pain medication at such a young age, our family GP had to increase the dosage every year or switch me to a new medication the older I got. Ponstan, Cataflam, Codeine, Diclofenac, Zolmitriptan, Orphenadrine, Hydroxyzine – you name it, I’ve popped it. I developed gastric problems because some of the painkillers were really strong but the main concern my doc had was my increasing tolerance level and dependency.
But on an evening in May of 2012, just after my 30th birthday, I experienced a new type of headache that rarely affects women, one that other sufferers refer to colloquially as the “suicide” headache. They describe the pain as something worse than childbirth and where patients in the US experiencing the pain rushing to the A&E get mistaken for drug addicts.
I describe it as a sadistic stab to my eye with an ice pick.
That work-week evening, I went to bed with my regular migraine and popped five Neurofens. I thought nothing of it. Then, I woke up in the middle of the night feeling like somebody was stabbing my eyeball – from the inside. When I stood up, it felt like I was on a merry-go-round. I rushed to the bathroom to vomit and kept increasing my dosage of Neurofen. I kept popping, then kept vomiting some more, even when there was nothing left to vomit. This new pain made migraines a walk in the park. It lasted over the weekend before I finally went to my doctor.
The pain would make me aggressive and if anybody touched me during an episode, I would feel like decking them.
I found myself being diagnosed with “cluster headaches”, or so the doctor told me. It’s a pain that occurs around, behind, or above the eye and along the temple in cyclic patterns or clusters. These cluster headaches would last for days. I would be out of work for a few weeks because I was getting them so frequently over a period of a few days.
Painkillers are futile against this new, unbelievable pain in my head which, through my research online, was described by the few women dealing with it as something “more painful than childbirth”. The pain would make me aggressive and if anybody touched me during an episode, I would feel like decking them. The only thing that would work with dealing with cluster headaches was an all-powerful medication my doctor put me on.
And for six weeks, it was a relief. The only problem was that this medication focused on the central nervous system and the side effect was that it was also a depressant.
The medication kept the pain away but after six sullen weeks it just made me crazy. I’d burst into tears for nothing and randomly. I’d knock a glass of water over the table and I would cry.
I would cry over spilt water!
At the office, where I was working for a multi-national computer company, I wasn’t following meetings as fast. I would read the same email five times just to get focused.
After a series of mood swings and unproductive weeks, I weened myself off the medication and took a sabbatical. I had had enough and a solo backpacking trip in Laos was all I was banking on to bring me back from insanity. It was the wrong move to defeat cluster headaches.
Barely into my trip, it hit me out of nowhere with a full-on blow to the head just as I was cycling alone up to a waterfall on a rainy afternoon. The pain was so intense, it blinded me and I fell off my bike into a muddy ditch in the middle of nowhere. For three minutes, everything was black. I sat there and kept still in the ditch out of pain and fear. I’ve never felt fear like that since that morning.
When my vision returned, I abandoned the bicycle and returned to my dorm throwing up from the pain. I just wouldn’t stop vomiting, even if there was nothing left to vomit. I couldn’t even drink water to down my extra-strong painkillers. And when I finally could get them down, they did nothing. I spent the next few days in my dorm room on an excursion that was meant to relax me on my sabbatical.
There has been no cure found to cluster headaches, but I’ve since eliminated some possible causes to this nightmare of mine, smoking being one of them. And while it’s only been a couple of years, there a “seasonal” pattern to these headaches, hitting me in the months of March and September, as weird as that sounds. According to the doctor, he thinks it might be a dysfunction of my hypothalamus, the part of the brain that regulates our body clock, which could account for its seasonal visits.
Then again, who knows? We’ll figure this out.
Years of being independent and dealing with it in my own stride have meant that I’ve never bothered searching for support groups, though in America, there are associations that help people cope with it.
To help things along, I’ve sacrificed part of my social life by making sure I get enough rest and sleep. I don’t know if it helps but it’s one small solution. If it means being boring and leaving parties early, then so be it to help me manage the fear of cluster headaches ever coming back to haunt me for as long as possible.
And now that things have settled a little, I’m going to search for fellow sufferers in the hope it will bring us both some calm in our lives that are quite literally, a series of headaches.
As told to Kane Cunico by Jeannette James.
