Paul's story

Head and shoulders graphicIt is with some trepidation that I share my story as when I read others, I realise that many have symptoms far worse than I and although I thought I would not be bothered, I find that I worry about what others think of me and fear the consequences of admitting my experiences in a public manner.

I have lost friends and placed pressures on my relationships when I have shared experiences of my migraines as people either dismiss my symptoms with: blokes don’t get migraines and accuse me of attention seeking or worse, they say “oh a mental condition” look at me with ‘that look’ and back away.

I have experienced these reactions from all manner of people, both within the medical profession and socially, when I told my current partner (a nurse), while she understands, I play down my symptoms as I would not want her to worry as in her profession, she sees chronic conditions all the time and I would not wish her to worry about the future or suffer the consequences if my condition worsens as I see from others experiences that conditions can worsen over time.

My symptoms are relatively mild and most of the disruption to my life has been from peoples reactions to my symptoms or the stigma attached to a ‘mental condition’ and my experiences of others reactions means that I hide my symptoms wherever possible and have rarely sought medical assistance.

My symptoms start in a predictable cycle that gives me time to react (hide) with attacks starting with a searing pain above my left eyebrow and deep, persistent head ache that stays throughout the following.

The pain is followed by slow tunnel vision in one eye that leads to blindness in that eye, usually in the left eye first and most of the time the left eye recovers before the right eye is affected but on some occasions, both eyes are affected at the same time and I am blind for a varying amount of time (obviously I do not try to drive when this happens).

After a variable amount of time, recovery is the reverse of onset and my vision slowly returns with head ache subsiding with a residual nausea that usually lasts until I go to sleep.

I realised these were migraines when an episode affected me at work while working as I walked across the office with only one eye working, my brain was infilling the missing details based on what one eye could see and I consequently walked into a book shelf in front of my colleagues, where my worst nightmare came true and they realised I had more of a problem than simply being clumsy and worked out that I could not see properly.

My employer’s attitude was focused on finding out what was wrong with me and whether I could continue to work reliably with something affecting my vision. I felt my employer was understanding, but did not feel confident enough to approach the ‘mental condition’ discussion as my work relies on clear mental thought and taking significant strategic decisions, occasionally under extreme stress.

I have long known that stress is a trigger for attacks, but although I have never had reason to doubt my judgement, even during an attack, the stigma of a ‘mental condition’ and general assumption by others that it affects all judgements would potentially end my career, hence my desire that my condition does not become general knowledge and need to manage how my employer understands my symptoms.

The office episode forced my hand to investigate further and for the second time in my life, I sought medical attention, where once again my GP dismissed my symptoms as simply stress.

However, through reading others experiences on The Migraine Trust’s website I realised that I do indeed suffer from migraines, but remain undiagnosed and as my symptoms are manageable, I see no reason to fight a medical system that appears to prioritise diagnosis on severity of impact on life quality and the expense of doing anything about it.

I realised that I have suffered attacks since I was a teenager, but the frequency had increased in times of high stress and have slowly escalated over the last 15 years so that attacks last longer and happen in small groups over a couple of weeks once or twice a year.

Although my attacks are mild, I have used my migraine diary to identify a number of triggers including; stress; dehydration; disturbed sleep patterns and certain foods. The most disruptive of these is sleep disruption as some attacks can in themselves affect my sleep patterns, which in turn triggers further attacks giving what feels like a never ending cycle of attacks that I am powerless to prevent.

It is this loss of control and feeling of uselessness that is most disturbing and a worrying downward trend as I read of other experiences that have worsened with time.

However, while the severity of others experiences worries me, knowing that others have learned to cope with symptoms far worse than mine gives me hope as my coping strategies have been focused on hiding my condition from others, but reading the information on The Migraine Trust’s website has helped me identify triggers, understand my symptoms and has started to give me hope in being able to cope with living with my migraines.

Through avoiding triggers and managing attacks when they do happen, the frequency of my attacks have reduced back to a manageable level and I have been able to tell my employer that I am ‘coping’ although I realise that I will never be free from these migraines, at least I know how to cope.

The point about this ‘confession’ is, in addition to overcoming my fear of discussing my condition, I am keen to point out how life can be affected by even a comparatively mild condition and the heavy stigma that is attached to mental illness in our society that can make things worse, leaving sufferers isolated, depressed and vulnerable.

However, as I found hope from others experiences, I hope that those who read mine find their own way forward and attitudes toward mental illness change.

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.