I was diagnosed with basilar migraines [now known as migraine with brainstem aura] about eight years ago, aged 37.
I was driving to work and my tongue felt like it was huge. I even checked it in the mirror. My head seemed to have pressure inside so I opened the window. After this my vision was hindered and it was like someone had put a dark voile panel over my face. I was in the fast lane of the motorway and it all happened so quickly. My hands started to gets pins and needles and I was scared.
I don’t know how but I managed to pull over to the hard shoulder. When I got out of the car I collapsed as my legs had gone numb also. I rang an ambulance and was taken to hospital. After about half an hour my whole left side went numb. There was like a line down the middle of my face and the left side of my face was numb and I couldn’t move my arm or leg. They thought I’d had a stroke and was taken for a CT scan. This came back clear and I was simply sent home and told I would be OK in a few days! I wasn’t.
I was worried so saw a neurologist privately. As soon as I explained my symptoms he diagnosed basilar migraine. He said it was rare and that I probably would only have a few episodes. This one lasted a month. No headache, just numbness and I struggled to walk.
Four months later it happened again. Oddly enough, I was driving the same stretch of motorway. I recognised the symptoms so remained calm and pulled in. I had to be collected but this time the symptoms only lasted a week – no headache, just numbness and struggling to walk. Four months later it happened again, however, I had three weeks of numbness and severe headaches lasting around an hour, going away, then coming back. I saw my neurologist again who said I would probably live with this for the rest of my life. I was devastated.
Over the years I have tried various medications. I am currently on topiramate and have just also been put on candesartan. I have also been having Botox injections but I don’t find much relief with this. I also take various pain relief daily. I have a headache every single day at varying severities. Most of the time I can manage my day to day life OK but sometimes I have to just go to bed as the pain and sickness is too much to bear.
I hope that, one day, something will be found to help. I had only ever had one migraine at age 19 prior to this.
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.