Maria’s experience of menstrual migraine

I’ve grown in confidence with being open about how I feel

When I was around 30, I realised my migraine attacks occurred like clockwork with my menstrual cycle.

Aside from the odd one between cycles, they follow the same pattern. Starting typically 5 days before my period with a dull ache followed by intense head pain, tightness across my neck, and with sensitivity to movement and light. Then when it lifts, I feel like I have been hit by a bus, the fatigue is immense. This repeats every day for 10-12 days. A few have lasted up to 17 days, and in January, I had a migraine for a record consecutive 26 days. I feel battered the whole time.

I’ve tried everything. Medication, reflexology, reiki, massage, physio, yoga, exercise, supplements, you name it. Nothing works. For the last 12 years I have had a constant cycle of new prescriptions that provide short term relief in frequency, although not really the severity, before they wane and it’s back to the GP.

I once asked my GP to explain the cause of my migraine so I could try and tackle it holistically and at the root. He simply said, ‘you just have them’. That was hard to deal with. I wouldn’t know life without my migraine, and although I try to think positively sometimes it just feels too much and incredibly unfair.

I don’t tell everyone every time I have an attack

I often just deal with it on my own and from the outside you wouldn’t know. Not talking about it doesn’t mean it isn’t happening though or that the pain isn’t there. By and large people are supportive once they know what you are dealing with but even the most empathetic can get desensitised. Your experience of pain and the impact of migraine on your life doesn’t change, it’s always there but sympathy levels change, there’s frustrations with you being flaky or cancelling. Surround yourself with the right people, the ones who are there for you and who understand.

I’ve grown in confidence with being open about how I feel, at work in particular. Getting a recent ‘chronic migraine’ diagnosis helped. Psychologically I think having an official label and diagnosis changed something for me.

Previously I have probably played down my symptoms and not asked for the adjustments I need

Now I feel comfortable rescheduling meetings or having my camera off. I’m more comfortable to use ice packs in meetings, or to announce my slurry speech is due my medication. There was even a time when I was delivering a training presentation and had to go and be sick several times whilst my co-presenter was delivering their part. I’d come back for my part and still perform to the best of my ability, hoping nobody was noticing how ill I was. I’ll push myself but I know when to give in too.

One thing that really helped was when our EEDI policy was updated last year meaning any time off work linked to your menstrual cycle doesn’t go on record. I don’t take much time off but it’s nice to know menstrual migraine counts as part of this.

I have a great boss who is open and practical when it comes to supporting me. I saw on The Migraine Trust’s website that certain screen refresh rates can act as a trigger and she has spoken to IT to supports with this. She’s also spoken with HR on my behalf, and they have been very supportive around time off recently needed to receive the latest course of treatment prescribed.

We have several employee support groups and I’ve suggested one on long term pain, which was well received and will hopefully happen at some point. Simple adjustments and accommodations can make such a big difference, everyone deserves a workplace that understands what migraine is and how to support staff who live with it.

I sometimes wonder about my efficiency and what I would have achieved or experienced if I didn’t have migraine. I have my dream job in animal welfare, and I’ve progressed in my career, I’ve almost completed a master’s degree too, but I’ll never know what opportunities I could have had. There are so many shows, events and conversations that I’ve sat through being unable to focus on or that I have no memory of. Many more I have had to miss. At times I do feel robbed.

I’m more grateful for the day and for the health that I do have

On the flip side, living with migraine makes me live so much more on the days I’m well. I live in the present moment, and I try to enjoy every second. I would love to see a shift in understanding and perception about migraine.

Like with many illnesses, there are stigmas and misconceptions that can make life even trickier for those suffering with this condition. It’s an illness that, although incredibly debilitating, can be made more manageable with the right support. It isn’t really about sympathy, it’s about understanding.

Knowing that people understand, and as a result perhaps make reasonable adjustments for you, helps to alleviate the additional worry or stress migraine sufferers sometimes feel about how they are impacting others.

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