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  1. Hi all, I registered because it might eventually benefit someone else to know what caused my CH to go into indefinite remission - at least, it's been over 25 years now since the last episode *knock on wood*. I'm a Dutch woman, and I started having these dreadful headaches when I was 22. Of course I went to see the doctor, but he apparently never heard of this, but sent me to the hospital for an x-ray and some other tests to exclude some possible causes for the pain. When nothing showed up, he concluded that it was some kind of stress-related headache. That was, of course, entirely unhelpful, as were the other visits to the doctor related to finding some relief. The first two seasonal clusters did not last very long, but after that they took off seriously, settling on a pattern of two three-month clusters, each separated by three pain-free months every year. Some clusters I had one attack per day (usually after dinner), sometimes there were two (one of which woke me around 5 am, the other around 8 pm). It's strange that I now hardly remember any individual attacks, apart from two that stood out for lasting much longer than usual - the worst of those raged on for maybe six hours, and took me 14 hours of sleep to recover from. I suppose it was more or less the usual CH pattern. Because my mother was prescribed DES when she was pregnant of me, I was tested for possible effects of that when I was 31. One of the results of that was that I was rather low on estrogen, so I was prescribed "the pill" (a regular anti conception one), had my blood tested again after that, and eventually it seemed to be OK. This happend just when a new cluster was about to take off, but - I hardly dared to believe it at first - the estrogens also seemed to have an effect on the CH. It was as if the attacks became somehow "half-hearted": they lasted shorter, and were not as bad as they used to; and after a week or two they ceased altogether. Even now, 25 years later, it still feels as if I'm tempting fate by mentioning it - but they have not returned since; apart from one "shadow" attack when I tried out a different formulation of the hormones (and quickly switched back). Some years ago it was considered better to switch to using a low-dosage estrogen patch instead of the oral medication, gently tapering off - and so far, I'm still pain free. I did a search on this forum for the keyword estrogen and found that someone reported that using estrogens had actually triggered CH - and some people reporting that testosterone helped them. It seems that hormones are complex; but it seems obvious that there is in any case some relation to CH, somewhere. I actually found out that it was CH that I had in my twenties after it stopped. I certainly hope that by now doctors can better diagnose this because there are more options available to sufferers. Wishing you all the very best and may you tame the beast! Lúthien
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