Migraine – my 500 lost days

I can see, but something is missing. Just like when someone takes a photograph with a flash and you look away but what you see has a hole in it. It’s incomplete. This is usually my first indication an attack is underway. No warning, no build-up, just wham I’m into it. No pattern and anytime of day or night. I can wake and be too far gone to even take medication.

Panic immediately sets in because I know the horror that’s to come. Adrenaline, disappointment, confusion are all there in differing amounts. I might be miles from home, I might be at home or I might be fast asleep and miss this first sign. Quickly I take pain killers. I’m lucky now (post menopause)  because although attacks are frequent, they are less aggressive. I no longer need to navigate self-injecting, which I did for a decade, when adrenaline is pulsing through my veins panicking me even further. The number of times I’ve been in the loos at work and mis-handled the injector pen to see my only potential relief spray up the cubicle door. Then I’m really in trouble and scared. ‘How will I get home?’ ‘How long will it be until I’m in my own bed and able to suffer in the privacy of my own home?’

I’m rarely sick with attacks now (although it does happen in 1 out of 5 attacks) which gives me the opportunity to take a whack of over-the-counter pain killers that can now find their way into my stomach. At least I have a sporting chance of limiting the effects now I no longer am vomiting within 10 minutes of the onset of sight disturbances.

The distress of vomiting migraines is the pits. Not once, then relax and feel better – several times an hour, hour upon hour to the point I can’t kneel any longer and have to have a bucket by my bed. My body retches and there’s nothing there. Why would my body do this to me? And I’ll not even mention the chaos at my other end.

Once the gap in my vision starts to move, I brace myself for the light display. Zig-zag moving and flashing lights start. And what many people don’t know is if you close your eyes they are still there. No escape. As that fades I usually notice parts of my body are going numb. I can’t feel my hand or my leg. Sometimes my whole arm will go numb. It can travel down into my mouth and throat. Once I came running out of the sick room at school into the foyer yelling ‘I can’t breathe!’ to anyone who’d listen. I thought I was dying.

Then the headache… Oh God no – don’t do this to me again. The pain throbs and makes me immediately want to be sick. Once I drove myself home from Milton Keynes after the light show had eased. With a numb arm but able to change gear and armed with a plastic bag and tissues I got on the motorway. I drove for miles to Birmingham and seemed to be able to keep the progression of the attack on hold. That was until about a mile from home when I projectile vomited in the car, down the door and out onto the road as I brought the car to a sudden standstill. I pulled up on the drive, got into the shower and into bed to suffer one of the worst attacks ever. I couldn’t clean up my car until the next day.

Not on every occasion but sometimes I couldn’t co-ordinate my speech. It was worse than being drunk. Grim. Debilitating. I was vulnerable during an attack.

The first attack I had was when I was aged 10. Standing in a queue at school and I couldn’t see. I had no idea what was happening to me. I suffered a headache like no pain I’d ever known and it was only when I started vomiting that school sent me home.

From then on it was a quest to find out what was causing them, how I could prevent them and what to do when an attack happened. Almost 45 years later I’m still doing the same. I’m still experimenting cutting out what I eat, trying to live a de-stressed life and taking the latest preventatives on the market. Yet twice I had a reprieve of almost 4 years. The first time from the week after I took my History O-Level early until I was 19, I didn’t have an attack. During those years I ate copious amounts of chocolate, I discovered alcohol (and boys), I argued with my parents, I became a vegetarian eating lots of cheese, I took many exams, I started work and I passed my driving test. Years of change and stress. No attacks. Great – I was going to get a life after all?

Contrary to that, in my 30s after 12 attacks in a 12 month period, I made a determined effort to address my life holistically. I visited an acupuncturist and I gave up tea, coffee, alcohol and chocolate overnight. I started drinking hot water. I stopped worrying about my weight and I left my job to work freelance. 4 years I managed without an attack. I stopped carrying any drugs with me. Had I finally grown out of them?

When my relationship broke up I met someone new and reintroduced chocolate and wine. It didn’t take long for the stress from my breakup and adding chocolate and wine to my table to bring the migraine monster back home to roost. Cue another 18 years of attacks despite gallant and extended abstention from chocolate and alcohol (I never went back on tea or coffee). It’s completely ruined any idea of a professional career. I’m unreliable. As peri-menopause years arrived the frequency increased – sometimes 5 across a fortnight. Sometimes they only last a couple of hours but the kicker is that when that happens it is more likely to be a pause and a day or so later, it’ll start up again. Day after day sometimes. And a new bit of evil was introduced. Just to max out my suffering, they would visit in the middle of the night and not give me the opportunity to spot the first stages. I also started suffering more confused and disorientated states where I wasn’t always sure what was happening – if that occurred during the night I sometimes couldn’t even find my tablets.

Anything and nothing will set them off. There are contributing factors like irregular sleep patterns or lack of sleep, stress, excitement, anxiety, frustration, toxic foods, low blood-sugar levels, hunger, dehydration, weather patterns, humidity, smells and even talking about attacks brought one on once! But no pattern. And nothing that works conclusively to deal with an attack underway.

I shudder to contemplate the number of days over a life-time I’ve lost through migraine. I’d guestimate about 500-700. Often it is the day after the attack that has to be spent in bed too – absolutely exhausted from the onslaught. I’ve noticed as I’ve hit my 50s that it is taking longer to recover; if in fact I ever do as they are so frequent.

And yet these days I’m grateful. Grateful to have a husband who has got used to the nature of this beast; grateful that over the counter pills and my post-menopause body will often allow me now to completely by-pass the headache stage or reduce the pain; thankful I work part-time now and am home when most attacks occur; grateful to the Migraine research that continues – PLEASE I don’t want to eventually be an old-lady who can’t communicate what is happening to me. That is my biggest fear…


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