I've been looking for answer for my headaches for over a decade now, and I think I finally have it. Cluster headaches, the category, is new to me, but the symptoms are pretty exact.

When I was a kid, I had migraines - typical. Headache came on, I avoided light, people, sound. Laid still - got sick, slept for 15 minutes, and then it would be done. When I was 18, interestingly enough, they went away. For 5 years I had no headaches at all.

Then, in 2003 I started having a different kind of headache. One side of my head, the left side, around my eye (top and bottom) would erupt in pain like I had never felt before. Ripping my hair, kicking my legs, screaming at the top of my lungs, begging someone to shoot me. To my surprise, however, I never felt ill, only the unbelievable pain. My right nostril would clog up, completely and my right eye would tear up (opposite of the side where the pain was) and so I thought it was a sinus thing.

This would happen every once in a while - maybe every month or so. Then they would just vanish... over the last ten years, it has established this pattern, where, during the winter, I would have a mild headache, on that same side, every day for the entire season. The occasional Demon headache would jump in there too.

I went to Neurologists, ENT's, allergists, dentists, and eye doctors and and NONE of them said I had any problems. Well except, of course, the neurologist, who prescribed Imitrex and sent me home. The two times I tried that, It actually escalated the pain to new levels I didn't know existed.

Finally, just yesterday, after the second ENT told me my sinuses were fine, I stumbled across a list of Trigemenal (spelling?) pains disorders, and found Clusters... and it fit. The sleep disorder (I'm a massive insomniac), the tearing eye, the stuffy nose, the consistency of timing (always afternoon - evening time. NEVER in the morning. Always far worse in the winter). I'm a bit different in that they do not wake me up - usually occur an hour or so before bed.

I've only had painkillers to treat the big demons with - we're talking the big boys, loritabs, not advil. They can take the demon down, but not until I've wrestled with it for a good hour or so. I've also discovered that hyperventilating, usually caused by accident, actually helps for a minute or two. This makes me wonder if O2 might work for me.

On the side note, I am a natural bodybuilder who exercises 2-3 hours a day, 6 days a week without fail (until the demon visits). I have an impeccable diet and try to stay away from any meds except for my supplements. That being said, I'm looking into research for CH based around the hormones Melatonin and Testosterone. I've not had my levels tested, but some case studies report success in men with low test/melatonin and CH.

In any case, I wanted to find others who have this, so I can learn all I can, and well, find a/be a support system.

Thanks
D

Hi and Thank you Maz

When it comes to painkillers, I know they work. Every neurologist I have been to has told me "Painkillers don't work on <insert headache here>" and that is mostly because while they WILL work, they are easily addicting, and lose efficacy after small amounts of time.

My GP suffers from CH has well, and has focused her research career on CH, and is the leading expert in my area on Trigeminal pain disorders. It was her that prescribed them with an understanding that I don't have an addictive personality, and that I know better than to take them all the time (not for shadows, just for the beast). Neurologists also tell me things like "LSD doesn't do anything for headaches, don't listen to the research" blah blah, and well, we all know that isn't true.

I am a non-responder to a LOT of meds (including all anesthesia... I wonder how many other ClusterHeads are as well). For instance:

1. Verapamil (taken in highest doses possible with an EKG) - non-responder
2. Topamax (taken in 500mg) non-responder
3. Prednisone (took 1 time) non-responder and I won't ever take it again, seeing as its a catabolic steriod.
4. Lithium - I won't take this as its counteractive to my training
5. I drink 1-1.5 gallons of water a day, so water doesn't help me
6. I take tons of vitamins and supplements daily (including D3) but I am not sure of the dosage of the D3. I will check into that.

I think O2 is my last real answer for rescue, but not prevention. Several studies that I have read focus on low test in men and CH. Given other symptoms, that MAY be the case with me - I am going to have my levels tested. Others have spoken of some psycho-active drugs (antidepressants, etc) that worked for them, but I really hesitate to go down that road until every other path for prevention has been attempted.

I'm glad I have found this board, so much information, and so many kind souls who are willing to be here to listen.

My neuro told me that pain meds dont work with clusters because they block the nerves from receiving pain signals,with clusters it is the nerve itself that is in pain so there are no signals to block,or something along those lines. It has been my experience that Pez work just as well or better than Vicoden when Im trying to get the monster back in his cage.

Not every one paces all the time. Sometimes in the middle of the night I try to stay in bed so as not to wake the rest of my family, and sometimes I try to force myself to stay still - something to concentrate on while I wait for it to pass. Besides, it's not easy to pace while you are hooked up to an 02 tank.. But all the other actions you mention - the thrashing, kicking, begging and crying I think are pretty common to all of us.

I take each headache as it comes and just keep telling myself I've survived it before and I'll survive this one too. It will go away eventually. It always does.