My migraine experience has impacted pretty much every aspect of my life, and it has also hurt my loved ones.
I began having headaches in primary school and into secondary school. At first, I went to the opticians, and thought that maybe getting glasses would be the answer. As I moved into my teenage years, everything went from 0 to 100 and I was really struggling with migraine symptoms, to the point of being suggested beta blockers at the age of just 15. Instead, I relied on over-the-counter pain medications. Of course, when I was younger, I wasn’t aware about things like frequency of using different medications, or the risk of medication overuse headache. After a number of years, my reliance on these painkillers started to really impact my stomach and I’d have a lot of pain from the side effects. When you’re crying in pain and you don’t know which is worse, the migraine pain or the side effects from medication, it’s just horrible.
“When I think back on my healthcare experiences, I realise how poor the care was.”
I came across the resources on The Migraine Trust website, and I used the headache diary alongside a period tracker app, and I realised how much of a factor hormonal changes were having on the pattern of my migraine attacks. It made sense – when I think back to migraine really ramping up for me in my early to mid-teens, it’s clear that this was likely when I was experiencing a lot of hormonal changes too.
When I think back on my healthcare experiences, I realise how poor the care was. GPs would often just encourage me to try other medications and suggest that things like diet and exercise were the underlying issues (I know that a balanced lifestyle can be good for general wellbeing but the number of times doctors suggested this was ridiculous). There was no focus on the processes that cause migraine, prevention or triggers, it was all just symptom management essentially. After doing a lot of research myself to prepare for appointments, eventually I found a triptan that works well for me, which has been great.
“I had to leave my brother’s wedding early. I can never get that time back.”
Missing many coming-of-age moments, like fresher’s week, social events when living in university halls, lectures, family events due to migraine really impacted my life. I had to leave my brother’s wedding early and watch precious memories like his first dance with his wife afterwards on social media. I can never get that time back.
Migraine also impacts work, in that I often rely on medication to get me through and to avoid having to take time off. When I’m not as productive as I feel I should have been, I’ll often work out of hours to make up for that. This can put pressure on me at home, when I should be focusing on quality family time. Generally, though, I am fortunate to work for an organisation that understand migraine and are very supportive.
“The mum guilt really is huge.”
For me, the worst aspect of migraine has been the impact it’s had on my daughter who is currently just eight years old.
Looking back at when I was pregnant with my daughter, the first two trimesters I suffered terribly with both morning sickness and migraine attacks. I was not able to enjoy pregnancy, like you expect you would, like you want to, especially with your first child.
She has then had to grow up seeing her mum in pain regularly, not able to do all the things we want to do together and that just breaks my heart. Recently I came across some of her drawings where she’d been tasked to draw something that makes her happy (she drew a picture of her and her dad, playing on the trampoline) and something that makes her sad (she drew a picture of her mummy lying down, feeling ill). The mum guilt really is huge. The constant juggling of “I’m starting to feel ill, but I need to do a food shop. If I go into the supermarket the lights will make me feel so much worse, but then if I don’t go, what will we have for tea, it will have to be something easy, but that’s not very healthy”. It can feel endless. I also have to weigh up when to take medication, and whether the side effects outweigh the benefits (I often have to ask if it is better for me to spend time with my daughter while in pain but with a clearer head, or to take medication that dulls the pain somewhat but leaves me feeling groggy).
It has been promising to see newer migraine treatments becoming available, and I’m hopeful that I might soon be eligible to be prescribed these. In terms of my daughter, while it is hard for her at the age of just eight to understand the painful condition that her mum lives with, I have also used it as a learning opportunity and she’s now very well informed about things like hormones and how they can affect people.
“Migraine can cause pain in so many different ways, and can hurt families as well as the individual.”
I am also so lucky to have such a supportive partner, and my parents are always happy to step in and help if my attack is too much for me to handle.
People don’t fully understand migraine and in many ways, they are lucky that they don’t – unless you live with migraine yourself or have had to see a loved one ill, in pain and struggling, it is difficult to understand. It’s important for me to share my story to help raise awareness, so that people realise that migraine can cause pain in so many different ways, and can hurt families as well as the individual.