The following is an article written for Migraine Action for the July edition of their official magazine "Challenging Migraine". Migraine Action are a national advisory and support charity for people affected by migraine.
Standing in the middle of Times Square, New York I thought I was going insane. I am the only thing that is real here, and everything else is draped in an eerie haze, I smell burning, I can hear myself speaking but I am entirely detached from whoever is forming those words, I feel sick and I feel scared – I do not know it yet, nor will I know it for nearly 10 years, but I am having a silent migraine.
I can’t really pinpoint when I began experiencing silent migraines, I have a sneaking suspicion I have always suffered. I had crippling colic as a baby which I now know to be a warning sign, as well as a temperamental digestive system entire life. My grandma also suffers from classic migraines (with headache and aura). I can only really remember noticing them as they got steadily worse: By 14 I became acutely aware that large portions of my day were consumed by an unnerving sensation of being about to faint. Only after a cross-country race did it ever come close to happening, but it remained in the background for large parts of my day, everyday. There was a distinct link to hunger and hormones and because of this it was dismissed as “teenage problems” by a variety of GPs and specialists.
I remained undiagnosed for 10 years. Attacks became more and more frequent until they never really went away, only fluctuating between stronger and weaker. I had blood test after blood test, ECGs, EEGs, OGTTs, my hair started falling out, my skin was bad, my periods were irregular, my appetite was either absent or insatiable. On top of all these symptoms I could often smell burning. I couldn’t bear to listen to the dishwasher being unloaded, I couldn’t cope without sleep, I couldn’t drink alcohol, and I could barely keep my eyes open. However, without the classic head pain to knit the symptoms together, doctors were at a loss as to what was going on.
I spent years searching for answers to explain what was going on. Over time I got diagnoses for many of the symptoms – the agonising pain and severe abdominal distension are due to gastroparesis (a paralysis of the stomach), this in turn causes a reactive hypoglycaemia (low blood sugar thanks to no food reaching my intestines), as well as high cortisol levels, anaemia, the list goes on. It was only last year, however, that all of these symptoms were finally put under the umbrella of silent migraine. Standing outside of the hospital, newly diagnosed, I cried with relief for so long I didn’t think I was ever going to stop. The irony that it caused a migraine wasn’t lost on me.
That decade of my life I went undiagnosed was an important one, where I did all of my growing up, and it definitely changed the person I grew up into. I had to learn to stand apart from early on, “no, I don’t want another Barcardi Breezer”, “yes, I am going home now”. Constant bailing on events and opting for a slow-paced social life quickly began to weed out fair-weather friends.
Before a migraine, I also have overwhelming cravings for sweet, carbohydrate foods. This is not me having a sweet tooth (which I do), it’s a compulsion to consume anything that offers quick-release energy, and something that has genuinely led to me eating honey out of the jar. People often mistake this as an excuse to eat delicious food - I can assure that tablespoon after tablespoon of syrup on a spoon is not at all delicious, especially when you also feel nauseated and have a feeling you might fall over at any moment. It is an urgent and insistent craving that grips your entire body. It is not fancying a doughnut. It is the thought of any savoury food making you feel that you might physically wretch. It is eating sugar over the sink.
Next comes the fatigue. Freezing cold from head to toe and yawning constantly is a sure sign that an attack is imminent. People who tell me they are “also tired” at this point need to be quiet. Fatigue is the type of tired that doesn’t go away no matter how much you sleep, it is not the same as the tired you get from going out on a Saturday night, fatigue is not cured with a coffee. If possible I need to lie down in a hot room and, ideally, fall asleep.
A recent development is the addition of gastroparesis – a paralysed stomach. Although awful, in some ways I like gastroparesis because you can see it. I swell up like a blimp (my record for abdominal distension is 10 inches) and I am in crippling pain, both a dull background ache and some violent stabbing pains every now and then. Pain is also useful because other people understand pain. “You are swollen up and giant that must not be fun”, “You are in pain, I too have felt pain, you must be very upset”. People know what to do with symptoms like gastroparesis. People do not say idiotic things such as “I have that too”, and “have you tried just not thinking about it?” when they are faced with your distorted figure and see your face has turned ashen.
When I am experiencing a silent migraine it can be hard to articulate just how I feel. The symptom that has bothered me most over the years is the hardest one to explain – derealisation. This is the overwhelming feeling that my surroundings are not real, and is apparently usually experienced during trauma or chronic stress. This can happen at any or all of the “phases” of the migraine and is, even after years of experiencing it, terrifying. Luckily, these days it rarely happens, and I can only remember one episode this year so far.
Now I manage my migraine with a variety of medications, and I am working with my consultant to identify dietary triggers. I also try and minimise stress, including leaving a ridiculous amount of time to get anywhere – even the slightest jog for a bus can be enough to trigger an attack on a bad day. I also try to keep my sleep and eating patterns as regular as I can. This isn’t always possible, and recently with my final exams at university and dissertation deadline I have let things slide. However, one thing that is non-negotiable is that I don’t drink alcohol or caffeine. For me, these are two things that clearly trigger a migraine and always have done. The other thing I try to do is avoid situations where I know the lighting is known to be a trigger (sorry Marks and Spencer, I am looking at you).
It has only been a year since I finally received my diagnosis, and so I am still living with migraines more than I would like. Clinical placements and university timetabling have meant that increasing my medication has had to be a slower process than I would like, but I am already better than I was. I am now looking forward to experiencing life with more control over my symptoms and hopefully working towards a life with fewer migraines and far more fun!