Living with chronic migraine by Scholastica Zakayo

“Normal people don’t have headaches for no reason” those were the words my neurologist used on our first meeting when I told him I had ‘normal’ constant-daily low frequency headaches and episodic migraines.

It took me by surprise as I had suffered headaches for so long, it had become normal. By the time I was visiting the neurologist, I could not remember a day in the preceding two -years that was headache free – even for a second.

I had no idea that a condition like chronic migraine existed. I happened to learn that those of us who suffer from migraines refer to ourselves as migraineurs- such an interesting term, for such a disabling condition.

What is a migraine?

A migraine is a type of headache characterized by recurrent throbbing pain which normally affects one side of the head, and last from two hours up to 3 days. Associated symptoms may include nausea, vomiting, and sensitivity to light, sound, or smell. The pain is generally made worse by physical activity. One in every 5 people (20%) of people who suffer migraines, experience an aura. For me, it is a feeling of numbness on the hands and legs and usually signals to me that a migraine headache will soon occur. Occasionally, an aura can occur with little or no headache following it.

Globally, approximately 15% of people are affected by migraines. It often starts at puberty and is worst during middle age. In some women they become less common following menopause.According to the Global Burden of Disease study, migraine was one of the most common causes of disability in 2015. One uncommon type is the chronic migraine, a disabling heavy headache which lasts for more than 15 days in a month and affects just under 8% of the population.

Migraine experiences are different from person to person – I will tell you a little about what it is like for me.

Meetings are where I experience the most problems. I get very anxious about meetings. I find it difficult to make sense of what is being discussed because of the headaches and my thinking is slowed down. It does not help that I am rather introverted and prefer to be quiet.

I was once asked to take notes during one of the meetings and was in a panic. I couldn’t imagine, taking notes, listening in and talking at the same time. I somehow managed to wing it but such situations still continue to fill me with nerves. I sometimes prepare notes beforehand to enable me make more coherent sentences to present in group meetings.

Even though I have accepted the condition and learning to manage the pain, I find that I am cautious when it comes to making any personal and professional plans. I sometimes cancel or postpone events as a result of the headaches. At times, it feels like I am a prisoner to the migraines. At the end of the day, I want to just shut my eyes and remain in a quiet place.

Chronic migraine is draining. For most chronic migraineurs, the after-migraine symptoms become entangled with the pre-migraine symptoms before the next attack hits until the entire month becomes one long haze of symptoms and pain. I have to acknowledge this energy drain to my system and find ways to energize myself.

But at least I know what I am suffering from. The vast majority of people remain undiagnosed. A diagnosis of migraine can be based on signs and symptoms.

Neuroimaging tests are not necessary to diagnose migraine but may be used to find other causes of headaches in those whose examination and history do not confirm a migraine diagnosis. I have undertaken several neuroimaging tests, ophthalmological tests among other clinical tests. Each time I went for these tests I hoped that they would reveal some treatable condition. I started with head scan in Mombasa, this revealed nothing tied to the headaches.

After several months of daily pains and insomnia, I went to see a neurosurgeon in Nairobi who recommended eye tests. I did four tests with the ophthalmologist who revealed that something at the back of my head was applying pressure on my nerves. I panicked and started researching online what that could mean. My main worry was that perhaps I had an undiagnosed brain tumor.

Four weeks after the eye tests, I was due for a brain scan which I found nerve racking. I also undertook 5 blood tests investigating hormonal problems.

None of the tests were able to pinpoint exactly what was causing these headaches. I did not have any tumours, nor glaucoma.

I am currently going through months of trying different treatments in order to work out which regimen can best control the migraine.

Initial recommended treatment is with simple pain medication such as ibuprofen and paracetamol for the headache, medication for the nausea, and the avoidance of triggers. Simple pain medications no longer work for me, and the triptans family doesn’t work either.

I have spent a lot of research time online searching for information and online support groups. All I have come across are webpages providing clinical information, two sites people writing about their experiences (which can act as support group) and few published articles about migraines (e.g. mental health and chronic migraine).

I have however come to enjoy a very resourceful webpage that was referred to me by my current neurologist. A site that offers practical information to a novel migraineur like me https://www.migrainetrust.org/.

People need to understand that a migraine is not a mere headache, but a severely disabling condition whose symptoms come and go whenever they please. The unpredictability and difficulty in explaining how the condition manifests itself is frustrating enough and someone can feel alone even amidst those who go through the same condition. Keeping off the pain can be a daunting experience especially when trying to control how much you expose yourself to the sun, to windy environment, loud music, buzzing noise, air conditioning in the office or time spent on computers among many other triggers. It always feels like we are ‘knights in a sword fight, fending off enemy after enemy who are encircling and enclosing upon us’.

Despite the daily pain struggles, I have managed to learn my migraine patterns, some of the triggers and ways of dealing with the pain. When the going gets tough, I always try to find a quiet place and close my eyes. If I cannot manage to isolate myself, I sit quietly even if in a group and wait for the pain to subside. I have also learnt to be patient with myself and undertake projects that are manageable and try not to put too much pressure on myself. Exercises like jogging, yoga and Zumba do help although one has to be careful not to overdo on any of these activities because they can trigger a migraine episode. Supportive family, friends, and bosses make it easier to bear the migraines.

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Brief Bio:
Scholastica Zakayo is a research Officer and anthropologist working within the Health Systems and Research Ethics department at the KEMRI/Wellcome Trust Research Programme, Kilifi Kenya. She has an MSc in International Health and Tropical Medicine. She hopes that by sharing her experience she can shed some light to those unfamiliar with the condition, and reach out to those going through the same experience and let them know that there many others out there.