Living with chronic migraine at 17

I’m 17 and I’ve had migraine since I was about 11. My migraine has become chronic in the last year.

I find my migraine symptoms vary a lot and I can experience dramatic changes over even just a single month. I often get the more common one-sided head pain and then it sometimes changes sides. I also get horrible aura symptoms, my nose burns, my face swells up and my glands swell up. I get visual disturbances too, I see lines and get really dizzy and nauseous. I sometimes vomit but not always.

As my symptoms can be different with each attack, I never know what’s coming. This can make me really anxious, especially when I’m out. I don’t drive yet and when I get a migraine attack out in public it can be scary knowing what to do about getting home. I was out the other day and had an attack and my train home was cancelled. I think when you have migraine you have to constantly think about it and think 10 steps ahead of what a normal person would do.

The impact of migraine on my education

My education has been really affected. I recently got told that my attendance is only 33 percent. It’s all been a bit of a whirlwind – my school has never had a child in my position, no one really knows what to do.

I think the education experience is incredibly difficult when you have a chronic illness like migraine. It’s hard having to explain the position you’re in and how you feel, and no one knows what to do or how to help you.

My treatment journey

I’ve been through lots of different preventives. I’ve tried everything from amitriptyline to blood pressure tablets and even things like heart medication. Nothing preventive has worked for me. One of the best things I have found is a natural peppermint oil which has helped a lot and helped my nausea. I also have a migraine TENS machine from Lloyd’s Pharmacy which I think has made a big difference.

I take codeine occasionally but then I worry about medication overuse headache and making my migraine worse. It’s really stressful when you don’t know what you should be taking or how much. It’s a brain ache in itself.

What needs to change for young people with migraine

I think there needs to be a lot more understanding and people need to get that it’s not our fault. People say no you shouldn’t be ill or you can’t be ill again, but it’s not my fault. Migraine is not just a headache. There is so much more to the disability than it being a headache. And it is a real disability.

I also think children need to be educated in school about things to do with migraine. Teachers need to be taught about how to help children with migraine as a matter of urgency. I’ve had so many teachers who just don’t know what to do. Sometimes they’ll ask if I want to go in a dark room but it’s not the same for everyone and that doesn’t always help me. Migraine is a spectrum disorder and we need more education and understanding around that.

Living with migraine and other conditions

I’ve recently found out that I have a stomach condition called gastroparesis as well as temporomandibular joint disorder (TMJ). The gastroparesis started a few months ago and it was awful. I have to take strong anti-sickness tablets. I can’t eat without feeling very full. It was really bad for a two-week period and I was throwing up every other day. I lost a whole stone in two weeks and it was a big shock for my body. Having to deal with this alongside my migraine was so difficult. It was such a stressful period.

Working with migraine

I think people also don’t understand how hard it can be to balance migraine with everything else you have going on. It’s not spoken about enough how hard it can be to hold down even a part-time job when you have frequent migraine attacks. Thankfully, I have open communication with my manager and the CEO of the company I work for which is really good. My advice to anyone working with someone who has migraine is to have open communication with them, it’s so important.