porcupine - have you been tested for cluster headaches?
What you describe sounds like what happens to my husband. At the moment, he is taking 1.5 mg of melatonin very night before bed, and this seems to help stave off the cycle (which can last 40 days.) IF he starts a cycle, his doctor puts him on a ridiculously large dose of prednisone to start, and then tapers the dose down over a period of several weeks. I would never recommend medication to someone else, but I would urge you to talk to a neurologist and mention these things to him/her. There’s also a website for cluster information - http://www.clusterheadaches.com
I am a migraine sufferer, my husband is a cluster headache sufferer. While they have similar characteristics, they are very different types of problems, and should not be treated as the same thing. I am quoting info from memory, but I can get some cites if needed - I’d just have to dig them all out of my old computer.
MOST migraine sufferers (something like 75%) are female, and of those a good proportion are linked to hormones - mine, for instance, almost always come with my periods. Migraines are also often linked to caffeine withdrawal… hence the addition of caffeine to aspirin in many OTC migraine meds.
Something like 90% of cluster victims are male. There is no known single cause, although they have been linked to allergic reactions and, believe it or not, the sleep cycle. Clusters are known informally, and unfortunately fairly accurately, as “suicide headaches.”
There are significant differences in the two kinds of headache. Migraine sufferers often need to sleep to beat the headache, whereas cluster sufferers are frequently WOKEN by their headaches. Auras are common with both kids, as are auditory hallucinations. Clusters, however, are often accompanied by olfactory hallucinations as well.
IIRC, Imitrex INJECTIONS are shown to be more effective in controlling clusters, while the same medication in pill form seems to be more effective for migraines.
More as I think of it, in the meantime, my sympathy to all of us headcases.