Hi all. Just joined the site.

I've had cluster headaches for about 30 years — classic one-side-only symptoms, and mostly during the fall/winter time of year. A typical cycle lasts about three months, with the usual nocturnal (or just quiescent) episodes, anywhere from three to six times per night. I've been under the care of a neurologist in the past, but the Prednisone/Ergot combination he prescribed didn't work nearly as well as the oxygen I rely on now. I tried Imitrex once, which only made the pain worse. Painkillers, of course, don't work at all.

No cycle at all during the previous fall/winter timeframe. I've sometimes gone two or three years with no headaches, but on the other hand, the last cycle was really two back-to-back cycles, which was hard to handle. As I approached 50, I began to experience headaches involving the left side of my head, where before they had been the exclusive province of the right. These left-handed beasts aren't quite as painful as the right-hand kind, but are somehow more disturbing because I have the sensation that my head is coming apart in chunks. Hard to describe.

So here I am, on the wrong side of 50 with no health insurance of any kind, and it's becoming increasingly difficult to figure out (1) what sort of job will allow for three-month leaves of absence, and (2) who's willing to employ a guy with cluster headaches in the first place.

What in the world are you people doing for work? Telecommuting? Panhandling? I doubt everyone here is on disability.

Anyway, that's what's on my mind. What's left of it.

Hey D-Orb,

Another 30 year CH'er here.

I think there's real hope that you could beat this beast back so mercilessly and effectively that it wouldn't interfere with work so much. And without getting the often useless doctor$ involved.

2 things occur to me right off:

1) High doses of vitamin D3. Skeptical? Yeah well I really was too, even to the point of ignoring the current thread on the the subject. Well until I got wind that numerous CH'ers here are reporting gaining significant prevention this way. And hey it's pretty cheap/harmless to try. Here's the topic: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

2) Clusterbusters. Plenty of folks for whom meds have failed are now reporting shutting down entire cycles over at the clusterbusters.com message board. Hate to admit it, but I didn't pay too much attention to this either at first. For starters, here's a good Newsweek article aboust clusterbusters: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

I'm hoping you'll be able to move from wondering how to work while the beast is pounding, to just kicking the beast's arse!  :)

Hey Delerious, good to meetcha.  It's always so difficult when we hear from our brothers and sisters that they are without insurance, job or proper interventions.  You are not alone but that by itself is not much of a comfort. Some, but not much. Still, bejeeber is on target. There are OTC possibilities out there as well as alternatives. The prednisone and ergot you mention only worked for me in the very beginning. As the CHs settled in, neither were helpful. As difficult as it may seem, I think you do need to see a neuro after you have gleaned as much from this site as possible concerning effective treatments. I know from first hand experience that not all the drugs are the same. Verapamil, a front line preventative, is actually relatively cheap. Not sure about lithium, another Rx drug that has had good success. You do mention O2 and that's great. I'm assuming you have kept up with the current thinking on flow rates and equipment and breathing techniques. If not, check out the link to the left.  As for work, since you are episodic, why not job hunt based on your off cycles. No need to explain to an employer (while you are off cycle anyway) that you have these attacks. Ensconce yourself into the job first and become a valued employee for whom an O2 break when needed will not be a reason for termination. Just some thoughts. Hang in there, and keep in touch. Blessings. lance

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Thanks for the info, bejeeber, wimsey1 and Bob.

I didn't know about D3, so that's something new to explore. I read about the psychedelic research a while back, and continue to marvel at such an unexpected connection. Dr. Leary would be thrilled.

I did some reading on current wisdom concerning O2, unfortunately after the last cycle had already come and gone. The flow rate I'd been using all these years was definitely too low.

I'll try to put together a medical history of some sort in the near future. I've added Denver as my location.

The whole employment scenario is a can of worms. I haven't been through a cycle in 1.5 years now, but had to walk away from my job at that time courtesy of the Beast, which didn't do my work record a bit of good. I'm not sure what sort of job allows three-month furloughs due to exhaustion, hence my interest in the work-from-home scenario. Recently, cancer (not my own) has made it difficult to impossible for me to be away from home during the day, so that's a factor, too.