I have had a headache for six years
The Guardian
Jane Hooper
June 20, 2014
Every morning I'm woken not by the alarm clock, but by the jackhammer in my brain. When I sit up, the pounding spreads to my temples, and by lunchtime it has extended to my face until the whole of my head feels like it's going to explode. The pressure feels so immense, I like to imagine popping it like a balloon. By the afternoon, it's accompanied by flashing lights and vomiting. On a level of 1-10 for pain, I'm at an 8, often a 10.
I wish I could reach for the painkillers and find some relief, but nothing touches it. For six years, this has been my daily experience, from the moment I wake to the moment I fall into a (fitful) sleep. I have no idea why it appeared one morning. Nothing out of the ordinary had happened the day before. The only thing I suspect is whether a horse-riding accident I had 20 years ago, when I landed on my head, has finally caught up with me.
At first, I hoped it would go away by itself. I kept taking ineffectual painkillers and tried to be stoical – I hate going to the doctors. But when my husband Robin finally pointed out that I had had a headache every day for two years, I relented. At first the GP suspected that I had a "medication-overuse" headache, caused by taking painkillers for too long. But after three months of going without any form of pain relief, the headache was still there and I was referred to hospital. An MRI scan ruled out anything sinister, but it wasn't much of a relief. To be told there's nothing wrong when your head feels like it's splitting open is infuriating.
Over the last four years, I have been on nine different medications, with increasingly unpleasant side-effects, each one ever more powerful, and all useless. One drug, propofol, that actually slows down the brain, did nothing except obliterate my short-term memory: I was like a goldfish, forgetting a question I'd been asked moments before, or where I left the car.
My doctor seemed frustrated when I reported that all his efforts were for naught. So am I. I can't believe you can be in this much pain for so long and no one can pinpoint the problem. Two months ago, I had eight injections of steroids directly into my head and neck, with the possibility of paralysis or death if it went wrong. It hasn't worked. As the procedures become more and more elaborate, the doctors become more hesitant. They want reassurance from me, saying, "If you think it will help" and, "If you want me to do it". Of course I do – I'd have a head transplant if it stopped the pain. I am so desperate that I am willing to try anything. I've tried acupuncture, chiropractic, head massage, changing my diet and having my eyes tested, but the cause still evades me.
The impact on my life is huge. My relationship with Robin has suffered: six years of saying, "Sorry, darling, I've got a headache", doesn't bother me, but it does him. And I'm snappy and moody. My daughter Bethany said recently that I never play with her any more, but the idea of playing shops is intolerable when all I want to do is lie down. I've stopped mentioning how I'm feeling. People don't believe me, and tell me just to snap out of it.
I am certain the cause is physical, not psychological, but my condition has definitely changed my personality. At the pain-management clinic, you have to fill out a mood diary before treatment, and mine has become more negative. Previously, I was upbeat and enthusiastic – I never left the house without doing my hair and makeup; I loved shopping and socialising – but now I can manage only the minimum effort. Friends, too, have said I've changed. It's hard to focus on a conversation when you're in agony.
It would be easy to go off sick, but I'm determined not to leave my job as a supermarket supervisor. What would be the point? I much prefer pasting on a smile and getting on with it. As ill as I feel, at least I'm out. I'm not going to give up. I've heard about surgery where they drill into your head and block the pain pathways. It doesn't scare me. What does scare me, though, is never getting better. I can't remember what it was like not to have a headache, but I want to be able to forget I ever had one. I want the old me back.
• As told to Emily Cunningham
