By Amy Hyde
My Migraine Beginning
My first migraine experience happened when I was 14 and it was actually one of the worst attacks that I have had – what a scary place to start! It was winter and I was clothes shopping with my friends and boyfriend at our local high street. The combination of hot bright shops and cold dark streets triggered my first ever attack. The pain behind my eye built over 30 minutes, I lost the feeling in one arm and began to slur my words. I remember thinking that I needed to go home and get help but my brain just didn’t seem to be able to communicate that with my friends. Luckily, my boyfriend called my mum to come and get me.
When my mom turned up, I got in the car and immediately passed out. She quickly drove me to the hospital, whilst trying to reassure me every time I came around. My memory of this time was blurry; I was coming in and out of consciousness. One minute I was staring at a nurse’s mouth, trying to figure out what she was saying as I couldn’t hear her and the next I was throwing up. The doctors thought that I had taken drugs and unfortunately since I had spent the night before at a sleepover with my friends, my mum’s protests went largely unheard. It wasn’t until my bloods came back clean did the question of migraine get raised and my migraine journey began. I have since been diagnosed with classic migraine with aura and hemiplegic migraine.
Throughout my teen years, migraine didn’t play a huge role in my life. My attacks were limited to one every two months. Back then a swift rizatriptan and a nap would nip any attack in the bud, meaning that the duration of symptoms didn’t exceed a day. Nowadays, migraine creates up to 15 symptom days a month. My main symptoms are head pain, neck pain, nausea, tingling in my cheekbones and nose and fatigue.
Migraine: The Stigma
Throughout my life at university and into my life as a teacher, migraine has, at times, completely overshadowed everything else. I have missed endless social events, been put on attendance watch at work and relied on loved ones to look after me. I have struggled through meetings, taught through pain and even broken down in tears in front of 30 nine-year-olds. I have felt incredibly low and paranoid that people thought that I was making excuses or faking it.
The difficulty is that I am triggered by so much: bright or flickering lights, too much screen-time, hunger, hormones, foods like onions and msg, the weather, being too hot or too cold, sleeping too little or too much, intense exercise and of course, stress. All of this makes my life a careful balancing act and dictates the way that I live my life. At times I can feel trapped by the set boundaries that I live within. I still want to go out drinking with my friends, go to the cinema without fear, try lots of different foods, travel comfortably, sleep-in and be productive at work.
Migraine And Relationships
Most people who suffer with migraine would probably agree that the hardest hit area of your life are your relationships. A disease that makes you unable to perform simple daily tasks means that you rely on others to step in. This is especially true with your partner. While I was in a seven year relationship, my boyfriend learnt to spot the signs that I was symptomatic (because I didn’t always want to make a big deal of it), he learnt how to help me avoid my triggers and crucially he was there for me when I was feeling alone and in pain. He learnt to be patient with my irritability before an attack or my insecurities after an attack. He bore the brunt of the driving, he made sure that my ice-packs went back in the freezer and he stocked the house with HYH friendly foods. This isn’t easy for them and it can take a toll. Now that I am single again, I fear that I won’t find someone who will be able to cope as well with my attacks. It certainly adds another layer of worry into finding the right person for me.
From Episodic To Chronic
In late 2018 my symptom days increased to a point that I was lucky to have one pain-free day a month. It wasn’t until early 2019 that I discovered the Heal Your Headache book and realized that I was in rebound from taking too many triptans. Up to this point I was prescribed 18 doses a month with no warning about rebound headaches from my doctor. When I read the science behind rebound headaches, it was like a light bulb going off in my head and I had wished someone had told me earlier.
Working The Heal Your Headache Program
I immediately went cold-turkey on all acute medication and simultaneously started the Heal Your Headache (HYH) elimination diet. What followed was three weeks of caffeine and triptan withdrawal, all the time hoping for the light at the end of the tunnel. I spent four months following the diet and only took two triptans during that time, saving them for when I really couldn’t afford to stay home. Since then, my attacks have decreased in frequency, severity and duration, leaving me with just hormonal-related migraine days (unless I slip with my food triggers). Although I am feeling a lot better these days, I am not giving up the hope that I can improve further.
Finding What Works
I have tried three preventative medications: amitriptyline, topiramate and pizotifen. Unfortunately, pizotifen made me drowsy to the point where I didn’t feel safe to drive, let alone be in charge of 30 children all day and topiramate suppressed my appetite and I lost too much weight (Sometimes I want to take it again just for this!). Amitriptyline, however, has worked on and off for me over the years. But now, with the help of the HYH diet and a better understanding of my triggers I am not taking any medication.
The Treatment Pie has helped me to consider new treatments and is a visual reminder for areas that I don’t naturally lean towards. For example, I have always found it super easy to sleep and drink lots, but don’t always look after my mental well-being with techniques like meditation. I have successfully introduced ginger into my diet as an abortive and have built up my exercise routine to include yoga, netball and even high intensity workouts.
Online Support And Resources
Starting the HYH diet is what led me to Migraine Strong in the first place. I joined the facebook group and immediately felt like I was part of a family; a group of people who not only knew what I was going through, but wanted to help me feel better. In the beginning I asked endless questions and as I felt better myself, I began to answer other people, trying to give back to a community that gave me hope in my darkest time.
I don’t always get along with social media, with the picture perfect portrayal of people’s lives and the incessant negativity. Through joining Migraine Strong, and appreciating the kindness and positivity that emanates from the group, I have found myself leaving other groups and unfollowing people who don’t do the same. My social media platforms are now a much better place to be.
My relationship with migraine has changed over the last year. Alongside learning about migraine, I have learnt how to accept that it is a part of my life. Accepting that there will be bad days, learning to talk about it with my work, friends and family and learning self-care has improved my mental health significantly. For every bad thing that has happened, something good has come out.
When I had to cancel plans with my friends and my friends came to me, bringing me HYH friendly snacks, I learnt who my true friends were. When I have been stuck at home and my family come and cook me dinner and tidy up my house, I learnt to accept help from others. When I have felt awful in the classroom and the children turn off the lights and get me a cold-pack, I have taught the children to show compassion. When I have been isolated not just at home, but to my bed, I learnt how to enjoy my own company – which has come in very handy during the pandemic! The main thing that I have learnt is to be kind. Be kind to others – you don’t know what hidden things they are dealing with and be kind to yourself – we are all doing the best that we can.
Amy Hyde is 28 and a deputy headteacher in the UK. Teaching is her passion. She loves being active outdoors, being with her family and friends and relaxing at home with her cat Casper. You can follow her on Instagram at @amyh003.