UK - How/where can I find help that takes migraines seriously?
Chronic sufferer from around age 10 (now 30), attacks usually come in bunches ie. If I'm lucky enough to have 10 days free, I'll probably average one a day/every other day for the following week or two. As you'll all know, it's beyond depressing. Has also cost me my last two jobs despite doctors notes etc. as I'll typically have to leave work a few times a month which has essentially made me unemployable despite my best efforts.
While varied, my attacks seem predominantly ocular, and in the last 1/2 years my photosensitivity has become so bad I wear FL shades almost around the clock, otherwise phone screens, the sun, any direct light can be an instant trigger - it's become essentially disabling. I pretty much don't watch movies, game, use digital screens minimally, people really don't understand how painful I find light to be and how much I have to avoid it.
I'm writing this in tears after barely knocking my head today out the shower, and guess what... potential migraine incoming. Sleep, sugar, caffeine, light and movement seem to be my main triggers, though most things seem to affect it.
I'm in the UK and every doctor I've seen has just tried to reinstate the same daily preventative meds, with next to no actual concern or interest for my individual circumstances. No preventative I've been given has worked and I'm loathe to take medications thrown at me by people who barely listen to my symptoms. I wish I could have a true discussion with a doctor who would listen and not just try and shuffle another pharmaceutical down my throat in their alloted 2 minutes of giving a damn. I have asked to be referred to specialists many times and as per my last NHS conversation, they apparently dont exist.
I'm not sure if my pain threshold is abnormally low, though my strongest attacks have lasted up to 4 days at which point I am essentially suicidal - I have never even been allowed pain relief by a doctor, not that I want to rely on it though migraines have almost taken my will to go on. I just don't understand where in the UK I can find help with this, I already hate doctors and feel completely failed by them. Have wanted to write a message like this for a long time but I'm an insular person and find this all very uncomfortable, but fuck it. I'm sick of suffering within my own shitty body.
Also, I had a CT scan which confirmed no obvious anomalies. Any advice etc is truly appreciated
Posted Jan 3, 2026, 12:32 PM UTC