Claire's story

Photo of Claire

I was 9 years old when first visited by the black and white zig zag in the top corner of my right eye. A short time later the headache started over one area of my head. Even at that young age I needed complete silence and a dark room to get through it. I was diagnosed with migraine with aura. I suffered fairly frequently during the next year or two before it disappeared from my life as abruptly as it had entered.

Fast forward 26 years and I started to experience visual disturbances. Swirling bright colours would take over all but the very centre of my vision in one eye. It was like looking into a kaleidoscope. I couldn’t detect any warning, there was no pain and my vision returned to normal after about an hour. I was able to have a private referral and received a diagnosis of ocular migraine within a week. One day I was reading when I suddenly became aware that I couldn’t see the start and ending of words, just the middle. Then colours appeared at the edge of my vision and I realised it was the eye migraine. I think intense physical activity brings these on. On all occasions apart from one, when reading, I had done some very intense activity 30-60 minutes beforehand.

My vision has altered, whether as a result of this I don’t know. Looking at certain types of surfaces, a wall painted in a matt colour for instance, I see what I can only describe as the pixel colours moving. A shiny surface like a fridge, doesn’t result in this. Sometimes patterns in carpets jump out at me with a pulsating 3D effect. I see lots of eye debris, flashes of light and black spots. It can be difficult for me to look at patterns, it’s like my brain can’t interpret the image and I have to look away quickly before it hurts. I’m now very sensitive to light. I’m sure I must look like I’m trying to be an A-list celebrity wearing sunglasses when the sun isn’t out. Computer screens, which I spend most of my time looking at and various applications mainly have white backgrounds which sends my ‘moving pixels’ into overdrive.

It seemed as the eye migraine attacks ceased, the headache migraine returned. This time without aura. The symptoms were different from my childhood migraine and I was concerned something was very wrong. I would wake up in the early hours with the most excruciating pain in my head, all over. I would also feel an intense pressure, so bad that it felt like my skull needs to split in half to ease it. I cannot bear light or noise. I once had water dripping through a filter and every droplet felt like a sledge hammer inside my head.

I experience nausea, thirst and confusion. The confusion is new to me and prompted a visit to the doctor. One time, I was standing on my landing and out of nowhere became confused about which room to enter. I was rooted to the spot, looking at the rooms feeling very unsure. Another time I had got myself to the sofa ready to spend the next 12 hours trying to see off the migraine (I have to sit it out, I can’t bear to lay down with a migraine) when I wanted some water. I knew I had to go to the kitchen and I knew where the kitchen was, but I didn’t know how to get there, I just couldn’t work it out. There seems to be no obvious warning, I will suddenly become aware that I want to do something but it’s the ‘how’ that stumps me. I am aware that I am confused, it’s like a tiny part of my brain is normal and is trying to break through to me. When the confusion leaves, it really does physically feel like something has lifted inside my head and I have clarity once again. As the confusion lifts, the head pain lessens a little. It’s usually at this point that I will test myself on who is the prime minister, recite the alphabet and list the order of who is in line to the throne! Once gone I feel completely and utterly exhausted.

I am hesitant to make plans with anyone outside of my family in case I have to let people down. I recently went on a business trip to the US, an 11 hour flight and 8 hour time difference to adjust to. I was petrified in case this caused a migraine. I feel unable to truly look forward to some future event as I am scared of getting a migraine.

I would like to see migraine taken more seriously. I remember seeing my GP and started with “I’ve been getting headaches…” but before I could finish he eye-rolled and snapped “You’re about the sixth person today to complain about headaches”. As I was getting about three attacks per month he prescribed me a daily pill to take, propranolol. I think stress definitely played a part in these migraines. I removed the stress and the attacks stopped so I no longer take the daily pill. I’ve yet to find a strong enough pain killer.

I have the feeling that migraines are not finished with me. If I have to seek help in the future I’d like to think I will be taken seriously and not written off as another patient with “just a headache”.

The views and opinions expressed in this ‘Migraine story’ are those of the author and do not necessarily reflect the official policy or position of The Migraine Trust.