Hi, all. 37 year old Norwegian "newbie" clusterhead here. Apologies in advance for a wordy post.
I've been reading this board for a little while now, having registered in September last year. I was diagnosed with cluster headaches in late May 2010 after a series of attacks that started off very strong -- my first attack ever was in the middle of a crowded mall on a Saturday; I seriously thought I was having a brain aneurysm or a giant tumour had popped up or something. After a few days of increasingly regular attacks I finally managed to drag my carcass to my doctor, who promptly had me admitted to the local hospital.
I'd been having an unusually long bout of migraine before and during the first attacks, so they thought the two might be linked. However, as the migraine trickled away, the cluster attacks stayed. All sorts of painkillers, blood pressure and migraine medication were tried, to no avail. After about two weeks the attacks stopped abruptly; the doctors assumed it was because of the verapamil they'd put me on, gave me a prescription and sent me home.
Less than a week later, however, the attacks started up again, this time during the night. They've not stopped since, but only increased in frequency and length of bouts. I haven't been to the hospital except for scans and tests since, either.
My current specialist is a professor of neurology, considered one of the country's leading experts on headache conditions. Since May-June of last year, I've tried a plethora of various medication, some with serious side effects, none with any actual effect on the attacks. So far the only thing that's been proven to work for me is oxygen; it cuts down on the length of an individual attack, but does nothing for the actual pain level.
Being chronic, I have attacks every day, or rather night: starting from about 1:30 AM, each attack lasting between 15 and 30 minutes depending on how fast I manage to get the oxygen mask on and how high the flow is. Between attacks I get from 45 minutes to an hour of no pain before it starts up again -- this goes on until well into the day, sometimes even into the afternoon. When it's done for the day, all I can do is collapse into bed and sleep. This doesn't leave much in the way of a social life, it's turned me into a hermit. The family helps as much as they can, but the sheer relentlessness of the attacks is taking its toll on them too. I'm grateful, in a way, that I don't have a significant other or children; I doubt I could have managed to take care of them in any way. I am not a smoker - haven't smoked at all, ever - and touch alcohol only extremely rarely. I'm not in terrible shape, but could be better, and try to eat healthy food.
So far I've tried every painkiller under the sun, various triptans(sumatriptan, rizatriptan, zolmitriptan), naproxen, propranolol, prednisolone, verapamil, indomethacin, lithium, methysergide(Deseril), and none have affected the attacks in the slightest. I'm currently ramping up to a medicinal dose of lamotrigin... but truth be told, I'm starting to suspect it won't work either.
I'm nearing the end of my rope. The relentlessness of the nightly/daily attacks is destroying my life and my will to go on. My father, a retired policeman, is now the one trying to convince me to try other solutions, after traditional medicine(and some alternative; I've tried both acupuncture and osteopathy, with no success) has failed. He's even threatened to go picking mushrooms in the forest and making me try it, so I thought I'd better talk to the people who know about the proven effects of these alternate methods.
I have, of course, read the FAQs and instructions, and will be trying to compile a to-do list in order to be as systematic as possible in my approach... but it's still a somewhat daunting prospect.
Questions, comments, etc. are welcome, of course, and if you managed to plow through all that, thanks for being a patient reader.