Experiences with nhs
I’ve had cluster headaches since around age 14 but doctors had put them down to being regular migraines. It wasn’t until about 2016 (age 20) when I first discovered what CH were. At the time my cycle started in July and would last around a month by the 3rd year of the same pattern I bought this up to my GP as I was now 100% sure.
Because my cycles were on the shorter end even with a rushed referral they had stopped by the time I saw a specialist. They agreed it was likely cluster headaches and approved sumatriptan nasal spray for future attacks. This was in 2019 and I have been lucky not to have any attacks until now again started in July but are mostly shorter this time and not happening everyday or at a set time (probably due to my lack of sleep for other reasons).
This time after having some kind of diagnosis I’ve tried to proactively get help during one of my first few attacks I contacted 111 who advised going to a&e for oxygen but as they were so short I wouldn’t get there in time.
I did eventually get the prescription but the spray hasn’t always helped. During a much longer much more painful attack the other day I took the advice offered by the 111 doctor and other doctors I’d seen about going to a&e the problem was it was a 5+ hour with to see anyone and the attack had ended.
I was told my gp can write a letter for oxygen therapy that I can get at a clinic attached to this a&e much quicker but my gp refused and is making me wait to see a neurologist. He asked for them to see me as soon as possible but I face running into the same problem of no longer being in a cycle when this appointment does happen.
My question I guess is what has been the experience/outcomes when seeing a neurologist either during a cycle or when it’s ended?