Elizabeth's story

ElizabethI started suffering from migraines as a child. The earliest was around age 5 or 6, and by the time I was 8 or 9 I had to be occasionally picked up from school by my mum because of an attack. My migraines were much simpler then, I would vomit once or twice, sleep and wake up the next day feeling weak but much better and after a day’s rest would be back at school.

My tendency to hide my emotions from an early age meant that stress could sometimes result in an attack. I think as well that I was ashamed of my migraines, and unable to tell people when I was in pain. By secondary school I was getting a headache or migraine at least once a week and couldn’t tell anyone what was happening, so I would sit through lessons in agony and feeling increasingly nauseous, waiting for the school bell to finally ring.

My migraines became more complicated around 17 years ago when I was 21. I started waking with them and having to vomit repeatedly on an empty stomach. As the years went on the vomiting would become more and more severe, lasting for 12 hours or so and meaning days in bed before reaching full recovery. As the migraines worsened my relationship with medication also became more complicated. I started taking medication almost everyday which exacerbated the problem, causing rebound headaches. I have been treated for medication overuse a couple of times through the National Migraine Centre, but I still find my relationship with medication difficult and stressful – constantly having to make decisions about when to take medication – do I cope and put up with the pain, or take something that might ultimately make things worse for me in the long run?

The last ten years have been extremely difficult for me in terms of migraines and consequently being able to cope with everyday expectations and responsibilities. I experience mild and moderate migraine/headaches around 15 days per month, with a severe debilitating migraine around once a month, usually lasting 3-5 days, for which medication is completely ineffective. I call this ‘going under’, when my brain and body aren’t able to function and cope in the world or as they normally do and when I have to be in ‘another place’, i.e. a quiet dark room, away from everyone. It often feels like this big migraine is a necessary and inevitable pattern in my life – it’s something I need to experience and get through, to come out the other side and function again. Consequently I spend most of the month trying to predict when this attack will occur, probably building up my anxiety and stress levels in the process. I’ve been trying to get away from this mode of thinking recently and trying to imagine a life where I can be more stable and not ‘go under’.

Things have become increasingly difficult for me as I have taken on more responsibilities at work over the past 5 years. I have worked on a number of successful projects of which I am proud, but I have had to rely on fantastic colleagues that have understood my huge number of absences from work and filled in for me at short notice. I have always felt guilty and embarrassed that I am not able to fulfil my role and worried about the consequences – will my employers eventually tire of me? Will I lose my job? I also increasingly feel that I have not been able to fulfill my potential – my life is full of stops and starts because of migraine and I am not able to get engrossed in work projects or interests outside of work because of my condition. My life in general has become increasingly restricted. I always feel I am having to make constant decisions about what I can and can’t do. I’ve given up exciting travel opportunities for work, such as going to San Francisco to install an exhibition I curated, because I was worried about being too ill to travel or having a migraine when I was away from home and alone (my worst nightmare). On a more day to day level, I have to make sure my sleep patterns are regular, that I rest enough after a stressful day at work, and that I don’t fill my diary with too much – this is only likely to result in having to cancel everything. I envy colleagues and other people I know who lead fuller lives.

One of the things I am finding hardest at the moment is the level of pain I experience. My headaches last longer now, and I often spend days in bed in pain with no relief. This can be incredibly isolating and lonely. Sometimes every second feels like torture, and when you don’t know if the pain will be gone in a day or 2 days it can be nightmarish to endure. I also find that the ephemeral nature of migraine means that many people have limited understanding because once the attack is over you appear fit and healthy. I think there is also a tendency among people to belittle and patronise migraine sufferers as pathetic and weak and there are others, though well-intentioned, who try and take you on as a project as something to solve (it’s amazing how many non-sufferers think they have the answer). Luckily I have met many people over the last few years who are more understanding of the fact that I am just a migraine sufferer who simply needs to go to bed sometimes and does their best to listen and cheer you up (without advice!) when you describe how hellish an attack can be.

I moved from London to a quieter part of the country with my partner 8 months ago, and while my migraine patterns and frequency haven’t changed significantly, I have removed certain stresses from my life such as commuting, which makes them slightly easier to cope with. I have recently started taking a new preventative, and my plan for 2017 is to be more active and positive. I have recently been referred to the local community pain service, which I hope will be able to help with the psychosocial aspects of migraine, which has significantly impacted on me these last 10 years.

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.