Growing up with chronic migraine

I started getting migraines shortly before my tenth birthday. In fact, looking back, I think I had abdominal migraines before this, as I had investigations in hospital for weight loss and episodes of stomach pain and vomiting, just before the head pain started.

Getting diagnosed was a nightmare and I was accused by doctors of faking it and one told my mother that I should be an actor when I got older! The first year was a horrible time with even a teacher believing I was faking it. I guess this was partly because my symptoms were very unusual but also because the teachers knew so little about migraines.

Hard to explain

I had terrible head pain but couldn’t always articulate it and was very agitated and confused. Sometimes I would cry for hours and I would bang my head against the wall! My migraines are of the confusional type and as well as getting disorientated I also had terrible hallucinations (we now know this is caused by Alice in Wonderland Syndrome). After almost a year of getting nowhere, my mother fought hard to get me a second opinion with a very nice experienced children’s migraine specialist.

Once the migraines started they became chronic and although the consultant tried three different drugs to prevent them, Triptans to relieve them and nerve blocks and other strategies, nothing was effective. On average I have about 16 days of migraines a month. They always last at least 72 hours and some have gone on for several weeks but now my consultant organises hospital treatment with a drug to break the migraine if they go on for more than a week.

Impact on my life growing up

It’s fair to say that I’ve lost a lot of my childhood. I was a keen basketball player and had to give this up as I could rarely make the practices and matches. I also gave up learning the violin, almost all of my social activities and most of all I have missed so much school. In primary school my attendance one year was only 30% and in secondary school last year it was only 50%. I feel very sad about this but my family are very supportive and always encourage me and I try to stay positive.

As I suffer from chronic migraines, I guess I have, to some extent, adapted to coping with a lot of pain so I probably do more than people might imagine! But when the pain is at its worst I just lie in a dark room all day and listen to audio books or music. I’ve read a lot of books this way!

When I have a migraine I can get confused and my memory is really bad so I cannot do anything that requires thinking a lot! I don’t like to be with friends or family and prefer to be left on my own and do not like any stimulation like chat, noise, loud music etc. I hate being touched or hugged. I tend to feel a bit better late in the day so the best distraction for me is doing creative activities.

I like to doodle and paint and also sculpt with clay . I also enjoy baking or making sushi! At the moment I’m making a Halloween costume on my bad days. My mum puts everything out on the kitchen table for me but doesn’t much appreciate having to clear up all the scraps of material and glue etc afterwards!

What I would recommend to other children and young people with migraine

It’s difficult to know what advice or ideas I can pass on to other kids and teenagers that get migraines.

I guess I would tell other kids to try to make the best they can of their migraine free days. Being chronically unwell has definitely made me appreciate life more. Also you should not blame yourself. When I was younger I used to worry that somehow the migraines were my fault, or convince myself that I was imagining them!

If you suffer from aura or feel really odd when your migraine is coming on, this is nothing to worry about. My consultant says that the whole brain is malfunctioning, so it’s not just pain that you experience as the migraines can affect your ability to think and to process information, and also impact on your emotions and your personality. My family comment that I am a totally different person when I have a migraine…irritable, angry, clumsy, vague, forgetful and antisocial!

Because of my confusion and foggy brain, for a long while I thought that I had “lost my intelligence” or was becoming mentally ill. But recently I went a whole month without a migraine – that’s a first for me in over four years- I could not believe how mentally sharp I was and how quick my reflexes were! I have now realised that the migraines continue to affect my memory and make my brain foggy and tired for several days after the pain ends. This was something I had not realised before although my family observed it!

Let people know

I think it helps if you explain things to your closest friends so they can support you. In my case it also means my friends can keep me safe, as if they see I’m becoming unwell they will make sure I get home alright. Also they can then understand it if you are a bit irritable or feeling low. I have found other students very unsympathetic so I talk very little about my migraines.

People don’t really understand how there are so many different types of migraines and so many varying symptoms and often accuse me of faking it when I miss a lot of school. This was really upsetting when I was at primary school but now I’m used to it!

I have never been keen on talking about my migraine experiences but I’ve done this, as, now I’m older, I realise that it might be helpful for others to know what I went through, so maybe they don’t feel so alone. I know my mother got lots of support and advice from other parents on a Facebook support group and hopefully there will be something like this for teens and kids soon!

Or maybe there already is!