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I went from peak health to chronic illness and a hidden disability. This is my migraine story
July 9th 2021 / 0 comment
Image: Leni Syndica-Drummond for Liz Earle Wellbeing and @amaryllis.earle
Lily Earle, daughter of Liz Earle, never thought she'd spend her 20s in hospitals and doctors' offices. Now a campaigner and a wellness entrepreneur herself, she shares her remarkable journey
This is me three years ago. I was 27, working as the Head of Digital at wellness platform Liz Earle Wellbeing, enjoying London life, maybe burning the candle at both ends. I could run a sub-seven-minute mile, do 50 jumping squats and 20 push-ups on the parallel bars. I had a trainer twice a week and often went running on my own. I was feeling my absolute best.
This is me now. I’m 30, chronically ill – disabled, in fact. This person is so different from the woman who could plank on those parallel bars. Not only does my body look and feel very different, but my outlook on life, purpose and success has had a huge overhaul.
Although I might look ‘normal’ from the outside, my illness is invisible. I’m in constant pain and my life completely revolves around my migraine disease condition my treatments and trying to keep myself as well as possible. I raise awareness for invisible disabilities on my Instagram and in a rather wonderful series of unimaginable events I now run a company importing a Near Infrared Light (NIR) mask device that helped me manage the pain and as a happy side effect dramatically improved my skin. Let me tell you how I got here.
I experienced my first migraine attack at 19 at university, where I was training to be a teacher. I was working on a lesson plan in the staffroom of one of my school placements and I was suddenly hit with waves of nausea, a pounding above my left eye and my vision went blurry. It only lasted a few hours and I was able to make it through the rest of the day. I had several more over the next few months. The GP told me they were tension headaches and gave me painkillers. Most of the time I’d just ride it out, even if I was in the middle of teaching a lesson.
I threw myself into the world of low-histamine diets, which meant cutting out so many of the healthy foods that my mum always talks aboutAfter a few months, they stopped and I didn’t think much of it until I was 24, married and working in London and they started again. They grew so bad that I often had to crawl up the stairs to my flat. My husband would come home to find me on the floor unable to move, slurring my words, and completely confused. A migraine attack can affect the whole body. We spent a lot of time in A&E where I’d be given IV pain killers because the pain was so bad or when I’d had a seizure-like symptom or lost consciousness. Sometimes they would often give me a CT scan to make sure nothing more sinister was going on. But they never found anything.
Over the next three years, a neurologist helped me control the migraine attacks with various medications and I was still able to live a relatively ‘normal’ life, traveling, working out, even being promoted at work.
However, at the age of 27, my migraines switched from being fortnightly to endless attacks. Chronic migraine is defined as having 15 or more headache days per month, but migraine attacks are so much more than the headache. I couldn’t trust any of my senses because I didn’t know what was real and was being caused by the endless migraines. My sense of touch and taste became affected as did my depth perception, which is known as Alice in Wonderland Syndrome and said to the inspiration behind the ‘Eat Me’ and ‘Drink Me’ items that make Alice change shape and size. Author Lewis Carroll was a migraine sufferer himself.
It was a struggle to find medication to help the attacks and no one knew what was triggering them. I cut out different foods, I kept a rigid sleep schedule, started doing Pilates instead of intense workouts, saw naturopaths, physios, had acupuncture, started canceling plans so I could rest. I prayed, I went to different doctors, I felt like I’d tried everything, I felt like a complete failure who was letting everyone down.
Finally, in December 2018 I collapsed home alone. Thankfully I was on the phone to my husband at the time and he alerted a neighbour who was able to get into our house and call an ambulance.
It was a turning point and my personal breaking point. I realised that this couldn’t go on. I felt so guilty taking time off work but my GP signed me off for four weeks. Four weeks became eight, became three months, became indefinitely. Eventually, I resigned. Life as I knew it fell off a cliff. I rotated between my bed and doctors’ offices for most of 2019 and 2020.
I tried more than 20 preventative medications, saw nine specialists, had five MRI scans and two neck surgeries (which sadly didn’t help). Every three months, I’d have around 70 botulinum toxin injections across my head, neck and shoulders. For some people, this prevents migraine attacks as it stops the muscles around the nerves from twitching, leading to less nerve irritation. For me, it helps lower the amount of pain I’m in during each attack so I rely less on oral pain killers.
I also tried a long list of complementary therapies: reflexology, mindfulness, cold water swimming… Nothing helped long-term and no one could find the underlying cause. Migraine is such a multifaceted disease and everyone’s triggers are different. Treatments are often trial and error.
The support I’ve received from family and friends has been life-saving. They are full of compassion, they understand when I have to cancel plans at the last minute, come and sit in the dark with me, help me get to appointments, send me care packages and being a listening ear and a much-needed hug. They understand that there isn’t always an update or that I don’t always want to talk about my health. Just for an hour with them, I don’t have to be ‘the sick one’.
However, it is difficult when I get ‘helpful’ suggestions or people asking if I’ve tried X treatment or being told Y really helped someone they know with migraine disease. I know they mean well, but it can make me feel like I’m not trying hard enough to get better or that being ill is my fault and it can lead to feelings of shame for something that is outside of my control. My husband, Harry, has been incredible, caring for me when I’ve been unable to care for myself, and this has changed his life a lot as well.
During the first Covid lockdown in March 2020, Harry and I lived with my family – my mum Liz Earle, my stepdad and three out of my four siblings. They saw, week after week, just how bad my condition had become. This was particularly hard for my mum to see. As a wellbeing expert, she had so much knowledge about how to stay well, she had always been able to fix any and every ailment in the family, and if she couldn’t, she knew someone who could.
In the end, it was wellbeing knowledge that, albeit unwittingly, helped me find a turning point. I was a guest on my mum’s podcast, The Liz Earle Wellbeing Show because she had seen how migraine disease can impact people’s lives. I happened to mention that I’m allergic to avocados (it was daily peril when I worked in the wellbeing industry!) and a listener emailed in to ask if I had considered histamine intolerance. It turns out that avocados have huge amounts of histamine [chemicals produced in the body as part of the immune response]. Her friend was a doctor who had a special interest in histamine intolerance and a related autoimmune condition called Mast Cell Activation Syndrome (MCAS) and she passed on her details.
As it tuned out I did have MCAS, a condition which not only causes the body to release too much histamine and leaves you unable to break it down and get rid of it. If left untreated, high levels of histamine in the body can become toxic, making you incredibly ill. Although it wasn’t the magic bullet, starting treatment for MCAS was the first thing that made a lasting difference to my migraine condition and helps me manage its attacks. I finally felt like the pieces of the puzzle of my ill health were starting to come into view.
My mum, husband and I threw ourselves into the world of low-histamine diets, which meant cutting out so many of the healthy foods that my mum always talks about - including all of the fermented foods that she harps on for gut health - but she was very understanding!
Then, towards the end of the first lockdown, I have my first ever cluster headache. A rarer, meaner cousin of migraine, cluster headaches tend to be a very intense sharp pain behind one eye. It was the most painful thing I have ever experienced. At first, I thought it was a terrible migraine attack, but the symptoms weren’t right. They also come in ‘clusters’ or groups of attacks and over the next three days I was in agony and very restless. The pain was so bad I would scream and hit my own head and face to try and get some distraction from the pain, this is something that cluster headache sufferers often report. I spoke to the neurologist about these new symptoms and he diagnosed me with cluster headaches on top of my migraine condition.
On the plus side, around this time I heard about a therapy for chronic pain and inflammation called near infrared (NIR) therapy. I happened to be chatting with a friend about trying NIR products to help with my pain and she told me about mask that she had seen on the South Korean hit Netflix show The King: Eternal Monarch. I looked it up and found that it worked using NASA-derived NIR technology that penetrated the skin 12 times deeper than other mask devices that use LED alone. It combines calming red wavelength (RWL) and anti-bacterial blue wavelength (BWL) light with NIR and had the highest number of NIR light bulbs on the market, so I decided to order it. It was like receiving something from the future or a space helmet!
Using Google Translate to read the instructions, I felt very sceptical. It felt comfortable to use, the lights weren’t too bright, which was something I was worried about as my migraines have left me very sensitive to light. Afterwards, I actually felt a slight reduction in pain and was blown away by how the NIR could be used in the mix to help me manage my pain as well as the anti-inflammatory, wound-healing properties. It was calming for the whole body but I particularly noticed my skin. My illness had seriously taken its toll, leaving me with a grey, hollow complexion. The mask soon got me looking healthier and left my skin glowing. The calming red LED light made me sleep so well and I could finally sleep through the night for the first time in three years (disrupted sleep is also a key trigger for migraine attacks).
I came to the conclusion that so many other people could benefit from this technology and decided to bring these amazing South Korean devices to the UK market. I launched them in September 2020 and suddenly was at the helm of a very unexpected business venture! It felt like the right thing to do, bringing together my own personal experience with such amazing devices and growing up in the world of skincare and wellbeing it felt like a good step back into the workplace for me, especially as I have help with the day to day management of the company and work on it myself part-time as I build up my stamina again.
Image: Leni Syndica-Drummond for CELLRETURN UK
How am I feeling now? Well, I take each day at a time and try to live in the present, because tomorrow my health is not guaranteed. I have good days and bad days (or weeks!) where I’m back in my bed and I have to be so careful with managing my energy and stress levels. Finally, being able to sleep has helped break the cycle of migraine attacks. I also work with a brilliant Pilates instructor who really understands my incredibly temperamental body and is helping me strengthen it again. I also have cranial therapy, which I adore, and see a fab physio. I stick to a very strict low histamine diet - this includes no chocolate - which I’m sure my mum is very pleased about! My neurologist has also put me on two preventative medications, which are finally helping, along with some serious anti-histamines and mast cell stabilisers from my GP. All of the different facets of managing migraine disease are finally coming together for me.
I have learned so much over the last few years. Even in agony, I have so much to be grateful for, especially the community around me and the support I have for my mental health has been vital. I feel hugely lucky that, as part of my treatment, I was referred to a psychologist to help me adjust to my very different life, as mental health can be seriously impacted by chronic illness and pain.
I have also learned so much about myself. Often, we go around life presenting different versions of ourselves to the world, whether we are in work mode, family mode, in the pub or just putting on a brave face when really we aren’t OK. When I’m ill or in pain I can only be myself, I have no capacity to put on a brave face or the energy to be the work version of myself. I always thought that I needed some big worldwide adventure to ‘find myself’ but I found myself in my bed in a dark room. On top of this, my new business is flourishing as more people are seeing the benefits to their skin, sleep and pain levels that are possible when you use LED and NIR technology.
One thing that recently struck me was what my husband Harry and I said in our wedding vows when I was only 22 years old: “For better for worse, for richer, for poorer, in sickness and in health.” I very naively thought that the ‘in sickness and in health’ bit wouldn’t come into effect until we were at least 60! Recently we really have been through better and worse and I believe that by choosing to stay by each other’s side, and going through it together, we are all the stronger for it.
To find out more about Cellreturn UK go to cellreturn.co.uk
Follow Lily on Instagram @amaryllis.earle