Migraine is a big part of my life: I’m an Advanced Nurse Practitioner and I also live with hemiplegic migraine myself.

My experience of migraine began at university when I was doing my nursing degree. Like many people, I assumed that it was stress related.

When I initially experienced the symptoms of hemiplegic migraine, it was so scary, I thought it was a stroke and I went to A&E. I have been lucky to have had a reasonably positive healthcare experience, from having a supportive GP through to a referral to the consultant who diagnosed me with hemiplegic migraine. I’ve tried many different treatments over the years, some which worked well and others which didn’t. Thankfully, my current treatment with beta blockers has allowed me to manage the condition and has really reduced the number of migraine attacks I get.

“It feels like you’re going to die and you’re almost glad.”

Now when a migraine attack is coming on, I get some aura symptoms, including a tightening in one side of my neck, and I feel nauseous – it’s an odd sensation. I get a very severe feeling of needing to vomit, if I try to stop it, it builds and I can’t do anything, and often am sick. When the sickness comes, it’s usually accompanied by pins and needles on one side of my body, all the way down. This then morphs into a burning sensation – like coming in from cold to somewhere really hot, almost a scalding feeling. This all happens in less than an hour usually. My limbs then go numb and I get a heavy feeling. It’s not a complete paralysis but my limbs are so heavy, it takes such effort to move.

By that point the pain has come, and it is so severe. There are times I will be almost hitting the side of my head to try to distract from it. I can see why some people consider suicide, the pain really can be that severe. To even move to go to the bathroom, it’s like I have to drag myself along. It feels like you’re going to die and you’re almost glad. It lasts 6-10 hours and then moves into the ‘migraine hangover’ phase.

Once the attack passes, it’s like it never happened! Unlike a lot of other conditions where you might see a gradual improvement over time, with migraine it’s like it resolves so quickly and fully that it makes you question was it really that bad.

“For healthcare workers, the consequences of missing work with migraine are huge, and they impact a lot of people.”

I do a lot of work around migraine in my role, talking about adjustments that can be made for people with migraine in the workplace, things like improvements to lighting, options for different duties in job roles.

Quite often the adjustments that are spoken about are the ones that tend to suit certain types of jobs, primarily office jobs. I often hear ‘the work will be there tomorrow’ and that’s true for most jobs. In some areas of healthcare though, it is simply not the case. For us, the consequences of missing work with migraine are huge, and they impact a lot of people.

I work on the medical team, and it truly is just so stretched as it is. If I then need to take time away from work to recover from a migraine attack, that impacts not just my other healthcare colleagues, but reception colleagues who then have to try to reschedule appointments, as well as of course patients themselves who are unwell and have often waited a number of weeks for their appointment. Some of them will then need to be seen by other services such as urgent care, which are also incredibly strained.

There have been times when I have still driven to work when I feel a migraine attack coming on, and have tried to take medication and push through, only to realise there is just no way that I can. One of the times I tried to carry on at work, during Covid, we had minimal staff and no one else could see these patients so I felt I had to try. I got to 11.30am then I left, and had to pull over on the hard shoulder and be sick. It was awful. On a few occasions that I’ve tried to struggle through, I’ve not even been able to drive myself home.

“Migraine can affect anyone in any career, including healthcare.”

It’s such a difficult situation for healthcare workers to be in. I spoke to a surgeon who lives with migraine a few years ago, and he said he would dread the onset of a migraine attack, as surgery can be up to nine hours at a time, and he would be faced with the situation of having to reschedule. In that situation, it could be someone’s cancer surgery that they have waited months for. At the same time, healthcare professionals are human too, we can sometimes become sick, and migraine can affect anyone in any career, including healthcare.

Ideally, employers should be aware of staff’s migraine triggers and negating those. It could be things like dehydration on wards, not enough time for breaks. Employers can then put things in place such as water fountains in different work areas, working with staff to allow them to take breaks at different times. For me, stress, tension, poor sleep and dehydration are some of my triggers, so I work three days a week, and that’s made a big difference – I do three longer days rather than four or five and that works well for me. There are so many small, simple things employers can do such as reviewing lighting and screen usage, that can actually make a huge difference for staff with migraine.

“I would encourage people to speak to their employer – often this is the first step in getting the help you need.”

I understand when people say they are worried to bring up migraine with their employer, they might worry that they could lose their job. I would encourage people to speak to their employer though, and get an occupational health assessment if needed as well, as often this is the first step in getting the help you need.

Raising awareness of migraine is something I’m passionate about, and I often direct people to The Migraine Trust’s website as there is so much information on migraine and different treatments on there.

I would like to see better understanding of migraine, particularly among employers and including within healthcare settings. I’ve been lucky to have understanding colleagues in healthcare but there is a lot more to be done.