Ms Adequate

My situation started out with CHs by themselves before, after about a year, adding migraines to the mix. I have never actually had a CH outside of having a migraine at the same time. As spiny and MattB suggested it's truly horrendous. Dropping from the incredible raw pain of a CH is less relief than you need when you're still in the grip of a solid unrelenting migraine and of course trying to deal with the pain when you can't do things because of dizziness and nausea makes things far worse. Now, very fortunately for me my CHs have dramatically eased off in the last few years, the last time I had a full on 10/10 screamer was in 2018 and I have only had a handful of them since, usually hitting maybe 7/10 and only getting maybe three or four over a couple of days before going months more without. Still by no means fun but obviously far better than my previous situation. My problem is that my migraines have become more frequent and the worst ones have become truly horrific. I was just in hospital because of one so severe and being bizarrely displaced into my neck that it felt more like meningitis or something! Anyway I just wanted to say yes you're not alone in experiencing this awful combination. Best of luck to you.

Hey thank you so much for that information Batch! Apologies for not replying sooner, I was bedridden haha! I will definitely give this a try, hopefully by the time my neurologist appointment arrives I'll already have this as a solution.

Thanks for the replies! I'm currently not in a CH cycle, just migraines, which is very unpleasant but not more than I can handle. I'm waiting on a couple of upcoming appointments with my GP and a neurologist to discuss oxygen and so on, but I'll definitely look at other things I could try! Edit: CHfather, I was given pill triptans, which I hear don't work fast enough to be that useful? I'll have to bring that up too.

Been suffering from clusters with migraines for about five years now, and though they've been diagnosed for these last three years, when I go to a doctor they still insist that it's a sinus issue. This was of course the diagnosis I got in the first few times I went, before I knew what was happening. I get that the location of the pain is similar, but believe me, I've had sinusitis before and it's nothing like this! I was in so much pain a couple of weeks ago that I was in A&E and despite informing the doctor what was going on she 'diagnosed' it as sinusitis and sent me home with amoxicillin! 24 hours later I was back in A&E being admitted because I had attempted to cut my wrists to make the pain stop. (I don't really even remember that day, it's just a haze of unfathomable agony that ended up with me in hospital.) At least the next doctor I saw put me on oxygen that calmed things down for awhile until I got onto a ward that actually took things seriously. How do you all convey to doctors that aren't familiar with your medical history that you are not, in fact, dealing with a sinus infection?

I was put on Indo after triptans failed to do anything for me, and found it was actually highly effective for awhile - as long as I popped one when I felt a cluster starting up, it cut it from my usual two weeks down to about one, and only the first two or three days were severe, rather than the whole period being pretty much the same. Sadly this seems to have stopped now because the last few weeks have been hellish. But, yes, it can be a good thing for some of us. I can't say I had any problems in the gut from it, but I'm on lansoprazole for acid reflux anyway.