Hi both
New here as my 'migraines' have also mutated. I've been having them since I was about 20 (now 49) the first time after general anaesthetic for wisdom tooth extraction. Thereafter once again after tooth extraction then a few times after alcohol. They really took off when I was pregnant with my middle child 16 years ago. from then on it was nearly once a fortnight or more and the typical pattern was waking up with it over one eye, violent vomiting and wetting myself with the force.
They were however quite predictable and would last about 12-24 hours.
Over the years they have become subtly worse but in the last 18 months or so they have entered an entirely new phase and I've been to hospital twice (I had oxygen which, did absolutely nothing). I've never looked into 'cluster headaches' until it was suggested to me after a call to the Migraine Trust UK. Every symptom ticks all the boxes.
I am almost never sick any more (the first thing I noticed) and the headache lasts longer having crept up from 3 days to 8.
The latest episiode saw them coming on like clockwork every evening as soon as I sat on the sofa to watch telly. The pain crept up over my neck on both sides of the back of my head, making my face and ears (inside and out) red hot and finally settling into the familiar right-eye position. Morning it was all on the right side of my head, a pain which is hard to describe. I couldn't stay in bed. For a few minutes I wandered around the room contemplating suicide and moaning with the pain. My husband gave me a sumatriptan injection and I went back to bed.
That happened two more times and in between the really awful attack I have had a migraine.
Honestly, I can hardly keep track of the passing of time now that these episodes last so long.
The migraines were bad enough and have been interfering with my life for a long time but this is something else. I'm not encouraged by the lack of interest from my GP although I have finally been referred to a migraine clinic which I found through the Migraine Trust (they had never heard of it) or other people's stories as it seems that this condition is almost untreatable.
I have been using Imigran Subject for a few years as I was never able to keep any oral medication down but they stopped working a couple of years ago. However, since this mutation into CH they are working like magic again, although once it has worn off I'm back to square one. 8 days. 8 DAYS!
So you're not alone.