Migraine – the dark jailer (BBC Radio 4 programme)

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.

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Migraine, Anxiety, Ehlers Danlos and Guilt

Our household has been plagued by migraine this week.  Whilst the actual physical condition only affected one member of the family, the anxiety it caused affected us all. The A level student is all but an adult, a tall, lanky young man not so different from every other adolescent on the edge of adulthood.  But he is afflicted with migraine headaches and anxiety which are becoming more and more regular.

da4c13fb137e5947d72059d0e43cdd2eI 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!

But now the anxiety comes from concern for the next generation in our household.  We are constantly being told that the mental health of our youngsters is on the decline, and the school have told us that there is enough work to keep the counsellor in full time employment for the sixth form alone.  I suppose we could say that whilst my  three have not been formerly diagnosed, I can recognise enough EDS traits in them and they all share high anxiety levels.  This, coupled with migraine and the stresses of coursework and public examinations for the second, have pushed me to become that mother who seems to be constantly emailing the head of year at school.  I have gone from merely attending parents’ evenings to contacting the school on a weekly basis and I even sent in an information sheet about EDS.e1d71b3efb257e52d557e74dca09aa6d

Being aware that your children, no matter how old they are, have inherited certain traits from you and believing that your own health issues have impacted upon them, is very different when actually seen written down in black and white!  An assessment that we received this week, in an attempt to help gain some control for my son over the migraines ahead of his exams, listed out issues for all of us.  In fact the only one not covered is the dog and he probably is the most stressed of the lot!!  He was a rescue who was diagnosed as special needs and autistic when we took him to training…..now aged 14, he is pretty happy so long as he is at home with no other dogs in sight.

Whilst the rational part of me knows that I shouldn’t blame myself, the irrational psyche is guilt ridden.  I know that many other chronic illness bloggers have written  how nothing can adequately describe the guilt that we can feel about the impact that our health has upon our loved ones. For me it has weighed more heavily  than ever this week as I read that assessment – maybe it is self indulgent to feel that I shoulder the blame for my husband’s stress related health problems, the university student’s peaks and troughs of angst with the world, the migraines of the A level student and the the now increasing subluxations of the lovely girl.  The kids all have pain in their hands and wrists upon writing, and my daughter has never been able to hold a pen “normally” to write.SONY DSC  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.

 

Although we currently await an appointment for the younger two to be seen at University College Hospital, London where I was diagnosed, and the right medication needs to be found to stabilise the migraines, at least I have learnt enough to find the A level student qualifies for rest breaks during his exams – politics, history and English literature.  All essays…all heavy on bendy fingers, thumbs and wrists.   Thanks to all those who have offered support and advice when I have asked for help this week – you know who you are!