I still try to live every moment to the fullest and experience everything I can
It was that moment when the neurologist looked in my eyes and simply said ‘you have chronic migraine’ almost with a shrug of his shoulders. It was a simple conclusion; there was nothing greater wrong with me, just lots of migraines. He gave me some sources of information which may help but I didn’t read it. That was that. It was a life sentence and my battle would be to maintain it at a level that meant I could work without losing a job or be well enough to maintain a relationship.
I’ve cursed the Lord’s name wondering what I did to deserve this. Was I really a bad person to deserve this pain. You hear the phrase ‘I want to bang my head against a wall’. A strange thought to an outsider but it’s true. I have done it a number of times and you can’t feel it. Something in you brain is wired wrong that the pain from nothing is greater that hitting your head against a wall. How unbelievable is that?
The headaches began when I was 14, I guess triggered by puberty. It was easy for my mother to see what was going on as she was a sufferer herself. My GP suggested eliminating potential triggers (cheese, chocolate – the usual) but we did not discover a trigger. I went through university, got my first jobs, first real relationships -suffering as I went. About 6 years ago a GP put me on Propanolol and the effect was positive but not complete. I was happy but bad spells continued to occur where I would have a headache continually for 2 weeks.
Visual disturbances give me some warning of the onset but these are so regular that it’s difficult to judge whether a migraine or ‘just’ a headache is on its way. I have used Sumatriptan in reaction to an attack but they were not quick enough and in time the drug was not as effective. I am currently on Rizatriptan wafers which are quick and still effective but I don’t know for how long. This is my continual worry; how long will the next drug last before my body becomes used to it and renders it ineffective?
The impact of migraine
The continual worry has molded my behaviour in a number of ways. There must always be a back up plan in case of an attack. I think ‘where can I sleep?’, ‘where in the vicinity is a cold, dark room with a place to sleep?’. My wallet always contains my Rizatriptan as well as other painkillers. I usually carry a sugary drink. My behaviour itself changes and puts pressure on my relationships as I become spiky when ill. My girlfriend is wonderful and accepts there is nothing she can do during an attack but supports me none the less. I feel guilty for not wanting to go out to drink (as I don’t) or dancing anywhere loud but it’s not worth the pain that follows. I have to avoid stress and unfortunately these things make me unsocial.
My greatest comfort is a few friends in my own home as if an attack occurs the solution is simple – take a pill and go to bed. I have recently got a desk-based job which brings up its own difficulties. Visual disturbances come fast and ready when you stare at a computer all day. I take frequent breaks just to rest my eyes as the consequences of not are terrible but I am concerned about what people think when I stand up and walk away from my desk so frequently. I hope they do not think I’m slacking as this is certainly not the reason. I have always found it hard to explain what its like to my managers when most companies have strict policies on sick leave and I force myself to work when I probably shouldn’t. Massages, chiropractor and opticians appointments aren’t for fun either!
In the event of an attack I do a number of things; put food and a sugary drink beside my bed. Close curtains and turn everything off eliminating all noise and light. Take a pill immediately and grab my gel freezer pack which gives some relief during the pain. If I catch it quick enough I can do these things and prepare myself for the migraine hangover that follows. If I’m not fast enough it’s a wafer then sleep under whatever conditions I find myself in.
My worst moment to date was not due to a particularly bad migraine but because of the consequences. I missed one of my best friend’s wedding due to illness. I woke up knowing it was bad and tried one wafer which failed, took a second and spent all day in bed hoping I would make the evening do but instead spent 36 hours in bed. I still hate the thought of this and it does cross my mind whether there is a chance I could miss my own wedding in the future.
The trip of a lifetime
My greatest achievement recently was going to Peru. The dream trip included Machu Pichu, the Incas and the Amazon. To most there would be trepidation in going to a strange country six and a half thousand miles away but to me it’s different. Stress built up before the holiday with a dull ache for two days before I left. Then the cabin pressure affected me immediately as I failed to settle and my body was confused by going back in time as I flew there.
Darkness and the bright lights of the Lima traffic greeted me off of the plane as I begged for my bed. Seven days in Cusco at high altitude resulted in seven days of headaches, most were blinding and whilst the group were out drinking and celebrating each days achievement, I was in pitch blackness begging for the traffic noise outside to stop. I took 13 rizatriptan in the 13 day trip just to keep me going. This is the sacrifice I had to make to go on my dream trip. It was worth it but it was not easy and it will be years before I urge myself on a plane again and beg the question ‘why me?’ and ‘how different is it for the other passengers who do not suffer crushing pain?’.
But I have to get on. Although it feels like a curse sometimes, it is my life. I have never broken a bone, I have been in love, and I have a wonderful family. I still try to live every moment to the fullest and experience everything I can. Life is worth it, it just hurts sometimes. And who knows, there might be a cure in my lifetime.
The views and opinions expressed in this ‘Migraine story’ are those of the author and do not necessarily reflect the official policy or position of The Migraine Trust.