One of my earliest memories is of being in the back of the car as my parents went for a night out to relatives and the smell of mum’s perfume. Romantic – for some maybe. For me the memory is actually of feeling ill – nausea and head pains that got worse and worse as the smell of Rive Gauche perfume intensified. Just typing the words makes me feel sick even now.
Today I know that I was experiencing my first migraines. Funny thing is that mum has always suffered too and also found that certain smells would affect her – in fact she hardly ever wore perfume, and like me, never wears it now. One of our worst nightmares is walking through a department store perfumery. Some of us have definite triggers, some none; some experience aura, others none. Migraine does tend to run in families and does have a genetic background. Hence mum, me and now my son…..and of course for us there is also the familial Ehlers Danlos Syndrome which is known to go hand in hand with migraine.
Through my late teens and early twenties I tried special diets, neck physiotherapy, acupuncture, hormone treatment – anything to try to escape the crippling pains, the nausea and vomiting, looking like I had a stroke and feeling like I was falling off the edge of the world. Things became worse again when I was working night shifts – 2 different nights every week, 3 young children, no regular sleep pattern nor life pattern. Something had to give and the migraines became more regular with more debilitating symptoms. My GP had told me that I had to stop working nights and prior to my back problems resurfacing, I had requested a transfer to day shifts and was also applying for new jobs.
These days it is my son who experiences regular debilitating migraines. Believe me, they are so much more than just “bad headaches” as so many seem to believe. Visual disturbance, nausea, vomiting, unable to tolerate light and sounds, feeling not quite here…the list is different for everyone and goes on and on. He is laid up for several days, in bed for hours despite prescription drugs and “hung over” after.
This is why I want to share with you this short BBC Radio 4 programme that was on earlier this week presented by writer and performer, A L Kennedy. She says “I find migraines fascinating. As a sufferer, they’re hard to explain to non migraineurs. They aren’t ‘just a headache’ and can even present as partial blindness. My first migraine was just that – a patch of total blindness in my left field of vision, which I was too shy to mention. Having compared notes, I find I’m not the only one to have had such an experience in adolescence.
“Then came the auras, the pain, the disorientation, tingling, the trouble finding the right words for things, the misdiagnosis as a stroke. Some migraineurs are rushed to hospital with doctors suspecting serious strokes or brain tumours.”
This recording will be so familiar to you sufferers and I hope insightful to everyone else – link can be found here:
A L Kennedy’s Migraine on BBCiplayer Radio 4.
I was much the same as a teen, but I think that mine reached a peak at about the age of 20, when I found myself referred to both a neurologist and gynaecologist. Of course something that I now know that my mum didn’t, is that migraine is particularly prevalent in the Ehlers Danlos community – actually we had never even heard of EDS. But mum has always experienced migraines, and we all have painful necks and what mum has often described as a lollypop head. You know, when your head is too heavy for your neck. I have memories going back to childhood of needing to roll my head and crack my neck, starting when sitting on a schoolroom floor looking up at the blackboard – yes, I am that old!
It was only when I recently purchased finger splints that I realised that I too have always felt pain in my hand, struggled with pressure in my fingers and found myself much slower at writing than my contemporaries. For all of us aches and pains are just normal everyday.
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