‘Finding the key’, as depicted in the Migraine Association of Ireland’s logo, is as individual as a thumbprint. My personal journey reflects the despair and subsequent empowerment of one severely affected by migraine. I hope it will encourage those who suffer in silence and isolation to seek the information and support they require to get their lives back. Remember: migraine is common, disabling and treatable. Dr Marie Murray, said “I am not my migraine” when she addressed a public migraine information seminar years ago.
This is so true and her message inspired many of us to lead full lives and do what we can to reduce the burden.
As a child, I suffered from what I now know to be abdominal migraine. This gradually progressed to severe one-sided headaches, vomiting and diarrhoea from my twenties onwards. Migraine attacks lasting two to three days occurred five or six times a year, deterio-rating to three or four times a month in my 30s. My three young children tiptoed around the house because I couldn’t bear noise or light. I was fortunate to have a supportive family as I struggled to function. There is no doubt that the burden is determined by your ability to function during an attack – mine is like a power cut and “not just another headache”!
Many doctors mistakenly believe that patients have unrealistic expectations of a magic bullet or miraculous cure when they seek treatment. In fact, all they require is a clear explanation and an empa-thetic approach to the management of this complex condition. Var-ious studies have demonstrated that the typical ‘severe headache patient’ usually explores numerous avenues in search of treatment. Google the word ‘migraine’ on the Internet and thousands of reme-dies are offered to the enquirer.
Many are from quacks and charlatans ready to exploit those who are so desperate that they will consider unlikely and unorthodox remedies in their quest for relief.
I sought medical help, and also tried numerous quacks in search of a cure. I have vivid memories of ingesting a foul herbal decoction, formulated by a traditional healer, every day for three months – with no beneficial effect whatsoever!
In reality, what patients require most is reliable information and support on their journey to ‘finding the individual key’ to better self-management. This enforces the ‘Accept and Act’ theory which many now recommend as an important step on the journey from despair to personal empowerment.
Unfortunately, I was hospitalised frequently due to dehydration for what seemed to most people to be ‘just a headache’. There was little or no information available in pre-Internet Ireland. I made a vow to the good Lord that if I ever got some form of self–management, I’d do something to improve the quality of life for others. Migraine did not ruin my life, but it certainly ruled it!
I read an article written by a world-leading migraine expert in London and made an appointment in 1990. He diagnosed basilar migraine and told me, if it was any comfort, that I was one of the worst cases he’d ever seen! The development of Triptan medications has changed our lives and the subcutaneous version (because it is so rapidly absorbed) certainly changed mine.
I joined the then British Migraine Association and found their quarterly newsletter to be a lifeline. At last someone truly understood. I followed their advice to keep a migraine diary, identify triggers, look at maintaining a healthy lifestyle, and slowly reclaimed my life. This involved regular eating, sleeping, and drinking fluids – in other words living life defensively. It seems the migraineur’s brain likes regularity.
Everyone gets headaches; so when a friend suggested that the next time I got one I should go for a walk, I realised she had no understand-ing of how disabling a migraine attack can be. The fact that I needed to be in a darkened room, close to the bathroom, had not occurred to her despite our friendship of many years. She also had no idea that the risk of such frequent attacks was ever-present in my mind. This fear arising from the unpredictability of attacks – better known as the interictal (time between attacks) effect – can lead to anxiety and depression.
With the lack of understanding among the general public, it’s no wonder that the pan-European study ‘EUROLIGHT’ on quality of life issues found that 47% of respondents avoid telling other people about their migraine. In the same study however, 88% of people surveyed felt that close friends and family understood the burden of coping with an invisible illness.
Many migraineurs don’t want to talk about their attack once it is over, with most not consulting their GP, mistakenly believing there is nothing to be done, so it remains a hidden disorder. They may have witnessed a family member (as there is 60% genetic predispo-sition) suffer in silence and isolation, so they do too. Those who do consult may not be treated appropriately, as most doctors receive training in ruling out a ‘sinister’ headache only and very little training on migraine and other primary headache disorders.
However, finding an interested GP is a very important step towards better management and improved quality of life. There is no ‘test’ for migraine, as the diagnosis is based on good case history taking. Keeping a headache diary (available from MAI) can help ensure a person gets the best from a medical consultation and a more accu-rate diagnosis.
The societal and economic impact of migraine and other head-ache disorders is possibly unquantifiable. The reality of everyday life for sufferers is that normal function is interrupted by migraine epi-sodes at irregular and unpredictable intervals. This can impose severe limitations on their daily lives, whether at school, at work or during leisure time. How do you measure the loss of treasured family and social occasions? The EUROLIGHT study results reflect the impact on family life, with 62% of people with children saying they were pre-vented from minding them and 22% of partners saying they missed social events.
Equally important are the lost days in the workplace, as well as lost opportunities by not applying for promotion for instance, and the resultant economic consequences. Again, the EUROLIGHT results demonstrated the impact on career decisions, with 28% of respond-ents saying they did less well or took an easier job as a result of living with migraine.
Despite increasing recognition of migraine as a complex neuro-logical disorder, it is apparent that many patients still feel that it is not being sufficiently recognised as a debilitating condition, resulting in stigmatisation and the erroneous perception of a ‘neurotic malin-gerer’! This is especially evident in the case of workplace prejudice, where migraineurs have a fear of being seen as work-shy, unreliable or lacking commitment if they take time off during migraine episodes.
In order to give yourself the best opportunity of managing migraine in your workplace I would recommend carrying your medication on your person at all times and, if possible, try to rest in a quiet, darkened room when migraine hits. Most people will be able to return to work and be productive members of staff if this is facilitated. Try to give deadlines a few days to spare, for instance Wednesday instead of Friday. Also build a ‘favour bank’ at work – in other words, develop a relation-ship of mutual support and educate your colleagues at work who can potentially cover for you when you need time out and vice versa.
By 1994, I was able to manage sufficiently to call a public meeting; hence the Migraine Association of Ireland (MAI) was born. Those early vol-unteers who worked tirelessly had a vision of a world where the condi-tion would be recognised, taken seriously and managed appropriately.
One of the most valuable roles for patient organisations lies in sift-ing and filtering indiscriminate tranches of information, particularly on the Internet, by working in tandem with the scientific community and other partners to ensure that information on conventional and complementary therapies is reliable, readily available and up to date.
A patient organisation can provide practical help, support and information on how to deal with migraine at work or at school. It can provide promotional material for employers and school authorities and so forth to raise their levels of awareness, leading to better under-standing and mutually beneficial strategies for dealing with problems or avoiding them entirely.
The importance of ‘peer-to-peer’ support cannot be overempha-sised as studies demonstrate that peer-to-peer led education and self-management support courses have better outcomes. Reports indicate that patients ‘know’ more when information is received from health professionals, but actually ‘do’ more when information is shared by trusted peers.
My personal journey of reaching out in a time of despair was a pro-cess of empowerment. It is hard to keep in mind that migraine is common, disabling and treatable when caught in the vortex of numerous attacks. Feelings of guilt prevail as we try to think what we have done or not done to pro-voke this attack. Knowing that I was not alone on this journey is what motivated me to continue this advocacy work. Accepting that we have a brain disorder is a major part of learning to cope and self-manage.
Achieving a work/life balance is an ongoing battle, but being kinder to ourselves certainly goes a long way to achieving it.