I actually cried because finally someone had listened to me
By: Annemarie Wren, who had to wait nine years to get a migraine diagnosis
My first migraine was when I was about 7. I remember playing rounders and my vision went blurry, that was when I first heard the word migraine. I had them on and off but about 15 years ago, they suddenly started getting progressively worse. At times I was having around a 6 a day.
Living with migraine is debilitating. Mine affect my whole body and they come on with no or little warning, sometimes I’ll start getting blind spots which is a good indicator. I get physically sick, I get tooth ache, my sinuses play up, everything hurts – even things like lying down and having my glasses on my face are too painful. Then when you’re coming out of one it can take two to three days to feel normal, it feels like pushing treacle up a hill.
It’s incredibly isolating. It stops me going out due to the fear of getting one and ending up stuck somewhere unable to drive home, in crippling pain. People just don’t understand what it’s like which makes it worse. You say migraine and they assume you’re overreacting. Migraine stops you living your best life. I feel like I’ve had to give up so much, so many things I enjoy. I could scream when people say it’s just a headache. It isn’t.
Trying to get a diagnosis
Getting a diagnosis took years. No-one seemed to understand or be able to help and I felt like I was going in circles. I spent about 7 years going to the doctor. I was told it was mental health related, I was too stressed, to drink more water, take a break from work, take paracetamol, lose weight, take more exercise. It got so bad that sometimes I went in crying, and even then it was paracetamol, rest more. Those things help to a degree, I’ve given up all alcohol and caffeine as they can be triggers, but it was far from enough and the pain was unbearable sometimes. Due to the eye, tooth and sinus pain I get, I had my eyes tested regularly and was always going to the dentist.
From my experience I don’t think doctors know enough about migraine, so they don’t recognise the symptoms. If someone is going to the doctor with head pain on a regular basis surely, they should get referred not brushed aside. At one point a doctor said, “how do you even know what the difference between a headache and a migraine is?”. If a doctor doesn’t know, what hope is there?
After many years I got referred to ENT due to my sinus problems and I had lots of tests but nothing was found. I was finally referred to a head clinic and that’s where I was finally diagnosed with chronic migraines. It was such a long process. That diagnosis took about 9 years. I actually cried because finally someone had listened to me.
Finding a treatment that works has been incredibly hard and I’ve had lots that haven’t worked and others that have had bad side effects like feeling woozy and unable to work. Everything just takes so long. It can take months to get each appointment. I spent two years waiting to try optical nerve block injections in the back of my head. After the wait, they didn’t even work for me. I waited two years for Botox. The waiting lists are ridiculous. I’m currently on amitriptyline which gives me lots of stomach problems and I’m having to experiment with the dose. Botox has made a difference; I have half the amount of migraines and the pain is much less. Now my consultant wants to keep me on Botox and add more nerve block injections between. They’re awful but when you’re suffering up to 6 migraines a day for a week you’ll do anything.
The impact on work
Work is another part of life that migraines make challenging. Stress is a big trigger for me, so I have to try and balance work and stress levels and the migraines that come with them. I take a lot of sick leave. Chronic migraines are classed as a disability, but lack of understanding means they just get treated like a headache. Migraines are just so misunderstood; we have to wait so long and fight to get answers.
People who have migraine understand. I have a colleague with migraine who is amazing and supports me and understands. I’ve had people laugh when I talk about getting a stomach migraine, they think I’m making it up. Sympathy can also wear off very quickly I’ve noticed.
The Migraine Trust has been so helpful. My neurologist mentioned them, and it’s been so useful. Especially being in a room full of people with migraine, you suddenly feel understood, and the stories people have are awful. We need to talk about what it means to live with migraine more.