Since the age of 14 I have been suffering from what I now know to be "silent migraines". Nobody has ever heard of these, including me until about 2 months ago...
A silent migraine is a migraine without the headache. How does that work? Well essentially I get all the symptoms of a migraine (light-sensitivity, noise-sensitivity, fatigue, shivers, tear-fullness, hot sweats etc....) without ever experiencing that classic agonising headache we all think of when we hear the word.
This lack of headache meant my condition went undiagnosed for 11 years, with doctors guessing at type 2 diabetes, epilepsy, and "my age" as the cause in the meantime. I have felt terrified and alone many nights sat on a laptop - the symptoms flag up brain tumours and schizophrenia as possible causes when Googled. Lesson 1: never believe everything you read on Google.
In the past 11 years symptoms have come and gone. Stress is always an aggravater, as is hunger and lack of sleep. The trouble is that these tend to bring out the worst in everybody, and therefore much of the time this fell on deaf ears. However, I knew this couldn't be normal. My friends were managing to go out, party, drink, sit their exams and still function. I dragged myself through parties and was unable to move the next day, I would feel nauseated most of the time, I would vomit after eating at restaurants, I was unable to complete any serious exercise without passing out or seeing stars, my nails wouldn't grow, my periods didn't start and my hair had a tendency to fall out. Every sign was telling me that something was very wrong, but nobody seemed able to tell me what. Lesson 2: trust your instincts.
Over time I have learnt to cope with my symptoms and manage them through adapting the way I live. I can't go without sleep, I can't miss a meal and I definitely can't drink alcohol. Living like this means I have been able to study, travel and live a semi-normal life. With the obvious exceptions. One of the lowest points for me came when I saw a consultant in December last year. His answer was simple "you will grow out of this". I laughed, and then quickly realised he wasn't joking. He was walking me towards his door, ushering me out, moving me on - I stopped in the doorway and looked him in the eyes. "People have been telling me that for years, I haven't grown out of it yet, so when? When exactly do you think I will grow out of this? How can you know I will, if you don't even know what is wrong?" He opened the door and all but pushed me out "Give it 10 years". Lesson 3: never give up.
Thankfully, I have since seen a consultant who listened to me and took the time to understand every aspect of what had been going on. For the first time I was given an explanation for every single symptom I had had since this began all those years ago. Every "funny turn", every "episode" now made perfect sense. What's more, knowing what I had been experiencing he did not dismiss my fatigue as "tiredness" or my inability to exercise as "laziness". He congratulated me on having even got out of bed (almost) every day since it began. I cried. A lot.
The below video is an attempt to show what these symptoms feel like. The majority of it is unable to be visualised - it is a feeling and a mood that as far as I am aware most people don't experience. But there are some things that can be shown. The overwhelming brightness of everything, the intense noise that comes from turning on the TV or dropping a spoon, the slight and unnerving switch in perspective as you move, the still floor falling like quicksand into the black-hole in the middle of your vision. So happy viewing! Lesson 4: Everyone is fighting a battle you know nothing about, be kind, always.