I have just had my first migraine, around 2 years after a bleed around my Pontine cavernoma and it has, quite frankly, left me terrified 😯. It was a full on migraine - loss of vision- numbness in face/ body that switched sides- speech difficulty and the pain was indescribable, which resulted in an ambulance, morphene injections and 3 days in hospital. The whole process is terrifying for people around me 🙁. The hospital scanned me and told me there was definitely another bleed, however the neuro surgeons disagreed and decided on lumbar puncture. 17 attempts and test came back negative. This migraine, definitely was worse than I'd previously experienced, and I have no idea how I'm going to cope with either the pain of further migraines like this, or the constant fear of another bleed. This time morphene was the only way to control the pain and I needed this for 48 hours. I've now returned to having a dreadful memory and difficulty word finding, that I'd had after my bleed. Any tiny words of encouragement would be so appreciated, it all feels a little dark and scarey at the moment.
Sarah
Cavernoma and headaches
