Living With... Chronic Migraine - The M Word

Living With… Chronic Migraine

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What is a Migraine? An extra sore headache is what most people will think, some people will even understand that these ‘extra sore headaches’ can affect your day. What most people will not realise is how debilitating a Migraine can be.

Firstly let me say that each person will experience Migraine in different ways and with different symptoms and I am only going to talk about my experiences. I don’t speak for anyone but myself.

Think of it a bit like labour, lots of people experience but you can’t really know how it felt for someone else.

My first experience of a migraine was when I was 12 years old. I was staying with my aunty and I remember looking at a taxi in the street and being really confused to how it only had four digits in the phone number on the side of the car. What I didn’t know was this is an Aura. A visual disturbance that happens to some people before the onset of a migraine. Mine presents as a blindspot in the middle of my vision. About half an hour after that the mother of all headaches hit and I could barely walk with the pain. My aunt took me home put me to bed in a dark room where I cried in pain, eventually vomited and then slept of the rest of the experience.

I got these types of Migraines about three times a year for many years. I learnt to recognise the symptoms early and found the tablets that worked best for me. I still had to go through the visual aura, pain and sickness, not to mention the headache hangover that follows for a few days but I understood what was happening and I knew there was an end in sight.

While I was pregnant with my second baby, I found I was having more and more headaches, eventually by about five months into my pregnancy I was not having any break from the headache. They were happening every day.

These weren’t migraines as I understood them just really bad headaches. When I went to the GP I was told it was hormones, three months after the birth I went back to the GP as the headaches hadn’t stopped and I was told, ‘it’s your hormones settling.’

Eventually I was referred to a migraine clinic where I was diagnosed as having chronic migraine. Basically I was having more than 15 migraine headaches in a month up to 27 some months. This has continued to be my life for the past five years. I’ve been on a range of medications from anti-depressants to epilepsy medications.

Day to day, unless you know me very well you would never know this about me, why? Because I am a bit embarrassed about it.

People don’t understand it and even those who do rarely have much sympathy. The response I most often get is ‘oh you get headaches? Paracetamol is good for me when I get a headache’ I nod and say thanks for the advice. But inside I want to scream that I could eat paracetamol by the handful and it would make no difference!!

Close friends will know my head pain is bad because I wear sunglasses more often or I’ll struggle to find the word I want to say (ephasisa) or I will be quieter than usual because to be honest focusing on what’s been said in the meeting/over lunch is almost impossible.

The first time some people actually took my illness seriously was when I was hospitalised for a suspected mini stroke. I couldn’t speak, went numb down one side and scared myself and my husband half to death. This turned out to be another type of migraine. Three days in hospital, MRI, CT scans, heart ultrasound and many more tests to discover i had a relatively rare type of migraine attack. (Yay, just what I wanted!)

So why am I writing this? I just wanted people to know that sometimes you don’t know what is going on for someone. They put a brave face on things but inside they are falling apart. I get up every day, I put on my make up and my big girl pants and go to work. I organise my kids school and after school activities. I try my best to make sure my family aren’t affected by my illness.

However, some days I find it so difficult to get through that meeting at work, I can’t think straight with pain but what can I do. I fear if I give into it everything will fall apart. I’m living on a delicately balanced stack of cards and one wrong move will bring the whole thing down.

I have tried to be more open with people but to be really honest the dismissive attitudes I have received have put me off talking to people about it. I don’t want to ever be a burden to my family, my colleagues or my friends. Sometimes all I need is a hug but I’m not brave enough to ask. So I’ll continue to put my smiley face on for the world and play down the pain.

So when someone seems a bit off or opens up a little please be thoughtful and kind. They may be assessing whether or not you will be that person they can open up too. They may be in a world of pain, emotionally or physically.

Be the person who supports not judges.