I’ve lived with migraine for about 30 years and only relatively recently was finally referred to a neurologist, which transformed my migraine care.
People often assume it’s “just stress,” but unless you’ve experienced it, you can’t truly understand. Other family members are also affected, so they have that understanding. Over the years, it’s only gotten worse.
About 13 years ago, I had a particularly horrific attack – I was vomiting, and even water on my skin felt like acid. I told my husband, “I actually think I’m going to die.” From that point, the severity of my attacks really increased. My GP prescribed a muscle relaxant, which at last gave me some relief and I could finally sleep.
I had been working as a community nurse. It was incredibly difficult to manage.
My team leader was very supportive, kind and caring, but higher management were less so.
Eventually, I was diagnosed with Functional Neurological Disorder (FND), which I now understand as an umbrella condition and very much interlinked with my migraine. FND affects my word-finding ability, communication, and even swallowing. It’s a constant battle.
In 2019, I had been redeployed because of my health. My migraine attacks were ramping up and I was having a lot of testing done, which led to the FND diagnosis. I moved from community nursing into a different role – home visits and lifting equipment had become too much. Occupational Health and my union argued I should be supported, not continually redeployed, but things didn’t improve, especially during COVID. After trying to redeploy me for a fifth time, I said “enough is enough.”
As migraine worsened, I had to give up my permanent nursing contract, and eventually my bank contract too. I’d nursed for 34 years, but there was no recognition when I had to stop – just a quiet end to my career.
Thankfully, I had been training in the evenings as a doula, and that work took off. I now support people virtually – on WhatsApp and video calls, which is much more manageable. I’ve continued with that ever since.
Still, navigating life with migraine is complicated. I’ve applied for ill health retirement, but the process has been long and stressful. It’s frustrating trying to get people to understand that migraine absolutely can be a disability – when you’re vomiting, can’t stand, can’t make decisions, and can’t even speak clearly, it’s far more than “just a headache.”
People say, “But you were fine yesterday!” They don’t see how symptoms can appear suddenly, sometimes within 30 minutes. I often don’t even try to explain anymore. One attack is never quite like the last. I’ve had to keep a headache diary for Botox treatment, which has made the biggest difference. I used to have migraine attacks five days a week – now it’s closer to five per month. They’re more severe, but far less frequent.
I’ve also learned to recognise and avoid certain triggers: some foods, hair dye, even strong smells. Occasionally I smell cigarettes or burnt toast before a migraine, which initially scared me due to its association with epilepsy. My neurologist reassured me it’s part of my migraine aura. Of course, anytime I do experience those smells, there’s a sense of panic and dread. Recently, I could smell cigarettes whilst on holiday and I thought “oh no, here we go, an attack is coming on”, only to find there was actually a man smoking nearby – I’ve never been so delighted to spot a stranger smoking!
My husband and daughter have learned to spot the signs, sometimes before I can. My husband will notice changes in my behaviour, decision-making, or awareness and recognise that it means a migraine attack is starting. It’s been a learning curve, and I have been trying to encourage my husband to let me know if he notices these changes as often, in the moment, I don’t.
I’m now under a specialist neurologist with expertise in both FND and migraine – finally. For years, my GP treated me but wouldn’t refer me, even though I’d lived with chronic migraine for 25 years. It wasn’t until MS was suspected that I got a referral.
One of my nurse friends actually came with me when I couldn’t advocate for myself and push for a referral to secondary care. Even though I was a healthcare professional myself, it was still a massive struggle to be taken seriously. It makes me realise that there will be so many others struggling with migraine who are less familiar with the healthcare system and may not be in a position to push for better care.
There are some positives to what I’ve been through – I recently was working with a client in my role as a doula, and she mentioned her experience of migraine. I was able to talk her through some of the options that are available to her and support her to advocate for herself.
The main thing I’ve learnt is – don’t wait. Push for care. Get a second opinion if needed.
For me, migraine meant giving up a career I loved, but it has also ignited a passion in me to advocate for migraine and other invisible disabilities too.
