Yahoo News ‘30 years of migraines have robbed me of a normal life. Finally, there’s hope’
I can’t remember what life is like without migraines, probably because I’ve been getting them for more than 30 years. This condition has affected my quality of life in so many ways and instead of wondering if I’ll get a migraine on any given day, I wake up thinking, “How bad is it going to be today?” Most days it’s bad enough to prevent me doing any more than the bare minimum. There are days when the pain is so bad, I struggle to move, even to get out of bed.
I was first diagnosed with migraines at 13, when I would feel nauseous and sensitive to light, experiencing auras (sensory disturbances, including dots, sparks or zigzags in your vision), although actually these symptoms started as young as five.
At secondary school, I started to experience more intense migraine headaches, with the constant pounding head getting worse as puberty kicked in, especially at certain times in my menstrual cycles. As I got older, to help reduce the symptoms, my doctor put me on the Pill and advised me to rest, but I was still having five or six migraines a month and nothing seemed to help. At this point the only medication I took was paracetamol and ibuprofen, which didn’t touch the sides of the pain.
In spite of the discomfort, I didn’t want to ask for stronger medication, opting to try holistic treatments through my teens. In fact, a whole host, including homeopathy, massage, reflexology and hypnotherapy, and my mum took me to a hypnotherapist to try to help reduce my stress, which is known to be a migraine trigger. My grandmother spent a lot of time searching the shelves in Holland & Barrett for vitamins and supplements that may help ease the symptoms.
It wasn’t until my 20s that my condition got really bad. By this point I was at university studying travel management and one evening, working on my dissertation, the combination of lack of sleep and stress meant the nausea and throbbing pain in my head became debilitating. I ended up in A&E.
People tend to think migraine is just a painful headache, but it’s way more than that and for me it is often disabling. Especially once I started working in the travel industry after my degree, with a health and safety manager role that increasingly involved stress and responsibility. I was having to take more and more days off sick. Since then, I’ve tried pretty much every migraine medication going, with patchy results.
I’ve had propranolol, which is a beta blocker; Botox injections; topiramate, a drug that reduces bursts of electrical activity in the brain; and amitriptyline, an antidepressant and nerve-ending painkiller. I’ve also had greater occipital nerve block (GON-block) injections and now have to self-administer monthly injections prescribed to help prevent migraine episodes. And I’ve tried six types of triptan tablets that you take at the onset of an episode – with only one proving effective.
Hearing that the first oral treatment for preventing migraines could soon be available on the NHS has finally given me hope of a better life. Atogepant is a tablet you take daily, and it would be such a relief to no longer have multiple injections alongside my medication. The new drug has been recommended for those who have not responded well to other medications, and that’s certainly the case for me, so I have already requested an appointment with my specialist to discuss this.
I’ve learnt a lot about my triggers over the years since my migraines first started. Stress, lack of sleep and dehydration are major triggers and I try to manage those where I can, using reflexology, meditation and mindfulness to try to keep stress at bay. But despite finding a combination of medication that helps, right now I feel like I’m existing rather than living – I’m just trying to get through the day.
People who suffer with migraines are not always treated sympathetically, but I have been lucky to have the same consultant for the past 14 years and she’s always taken me seriously. In my case, she believes stress and genetics are involved – and indeed, my grandmother used to suffer with migraines. There’s also a well-known link between migraines and neurodivergence, and in 2022 I was late-diagnosed with autism and ADHD, conditions that can make you hypersensitive.
Thanks to the current combination of injections and triptans, my migraines are now slightly more manageable. I’ve gone from being unable to get up or do anything, to life being a little more active. But I have to inject myself in a different site every month and have the GON-blocks into the base of my head when it all gets too much, which is not pleasant. Taking just one pill each day to prevent the migraines would be so much less invasive and so much easier – and hopefully liberating.
I long for life to be easier. I would love to have a social life and do things I used to enjoy, like dancing and going out with friends, but at present any physical exertion seems to make the migraines worse. I guess I’ve retreated somewhat from social groups and tend not to say anything about my migraines anymore.
Some friends can get sick of you being chronically ill and lose patience and sympathy. It can be hard to get them to understand that some days I can’t see straight, can’t focus or even read a book, but that however bad I feel, there’s no option but to push through as my two children, 13 and seven, have complex additional needs and I’m now their full-time carer, along with my husband. I can’t let them down. My pain threshold has got a lot higher because I have to keep going. But it shouldn’t have to be this way.
As told to Marina Gask with thanks to sedsconnective.org
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