My migraine healthcare experience

By: Antoinette, who has lived with migraine since she was a child

28th September 2023

The first migraine I remember was when I was around eight. Although my Dad remembers me clutching my head saying it hurt when I was two or three. My youngest daughter lives with migraine and when she was that age she had the same, holding her head and screaming.

It took lots of convincing the doctor that I had migraine. I was accused of just making excuses to skip school and no one at school believed it. It got worse when I started my period and hormones hit. At first it was every two weeks, then it became weekly. It really impacted my school performance.

I’ve tried so many medications over the years. Some things work for a while then my body seems to get used to them. I tried avoiding things to work out my triggers. Now I know it’s plain chocolate, red cheese, certain drinks, disrupted sleep routine, stress, but it took a while to get there.

When I was 17 I became pregnant and they stopped for a while. That was the only time I’ve had respite. I’ve had three children and my third pregnancy was incredibly hard, my migraines were all over the place. At their worst I’ve had one or two a week each lasting three to four days, sometimes they can last 11 days though.

When I have a migraine I can hardly walk or keep my eyes open. I lose my speech, jumble my words, I’m vomiting. I’m usually in bed, in the dark for several days in crippling pain.

My migraine healthcare experience

Over the years it’s been hard to find medical professionals who listen and understand just how debilitating a migraine is. I had a fantastic GP at one point who would turn the lights down, close the blinds, talk in a calm way. I’d sit there with frozen peas on my head and my sick bowl next to me. He knew just what I needed. Others seem to say ‘we don’t know how to handle it’.

Everything just takes so long. Waiting lists are huge and there aren’t enough doctors or hospitals with appointments or even clinics. I’ve been referred from hospital to hospital and seen so much different people. With migraine you have to try so many different things to try and find something that works, it means you just end up waiting and waiting.

I have a fantastic neurologist at the moment. He referred me for Botox. He really listened and it’s so hard to find that. I read a lot of scare stories about Botox, don’t go to Google! It’s so simple and feels like a scratch. You’re in and out in no time. The first two rounds were good but unfortunately the third coincided with a constant migraine for nine weeks. I felt so ill I don’t know how I got through that period.

Although again there aren’t enough nurses which means if the one person running the service is off or ill everything gets backed up.

I’ve also been approved for Ajovy and put on the waiting list but have no idea how long that could be, I’ve been told a while.

People don’t understand the mental health impact of living with chronic migraine. It’s contributed to depression and anxiety in my life. I never know when it will strike, what it will do. It’s affected so much. I’ve given up so much.

The impact on my career

My career is one thing. I had a job I loved working in retail but my migraines got so bad I was taking off more time than I was there so I had to stop work.

I’ve had some really mixed experiences at work. I’ve had some really supportive colleagues and managers who would let me have breaks, make sure there were dark rooms I could go to, would cover for me especially when loud noises things were potential triggers.

I’ve had other experiences which have been awful with managers who don’t understand. One tried to force me to complete my hours during a migraine. I was being sick and my vision was going. When he finally let me go, I wasn’t able to drive home as it wouldn’t be safe so I had to be picked up. I didn’t leave my bed for 24 hours and the next morning messaged explaining that I was still ill and would be in touch as soon as I was better and would make up the hours. My manager was furious. He kept telling me it wasn’t good enough, that I needed to sort it out. He kept suggesting my migraines were fault and something I was doing, he even mentioned my weight.

I couldn’t deal with that. I was really ill, feeling horrendous and being blamed for it. I even told him that don’t go out, I have a minimal social life, I don’t drink, don’t eat what I want. I do everything I can to try and manage my migraine. Even that he wouldn’t accept. I’m 40 but I still rang my mum in floods of tears.

Of course everyone can’t be expected to know everything about migraine, but it’s so common that there should be far more understanding about what it means. Especially in the workplace. Even just talking to employees about what they need during an attack would take a lot of pressure off, and pressure and stress can be such a big trigger.

It’s just such a misunderstood condition. People with migraine deserve better.