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@Daveengland from what I've observed in the Facebook clusterhead communities, dbs seems to be something that ya'lls health system considers much more often than here in the states......I've seen a few UK clusterheads in those groups who've had or are being considered for dbs....I've seen no one report success I'm sorry to say! I've seen several OG posts and comments (Facebook not here) on other threads by Tom in just the past couple of months and that's the first I've seen of him in many years now!! I was under the impression based on his comments that he had some kind of blog or YouTube channel going???

I believe Tom's handle here was actually ClusterHeadSurvivor. I tried to reach his blog, but it doesn't seem to be up anymore. The last post I see at his YouTube channel was nine months ago. talking about the success of his stem cell therapy for CH. It is kind of surprising how few DBSs there have been among people here, considering that articles about DBS sometimes describe it as "widely used," and there are still journal articles being written about it. This isn't really helpful, but I do remember one other person, from way way back, who said he had been "electrocuted" on a job site and eventually had DBS. (I think I remember him because he wrote "electricuted," which seemed like a better way to spell it.) On another side note, I was just looking at a 2017 journal article about DBS, and a letter a doctor wrote saying "Surgical intervention should not be considered for CH unless indomethacin was tried in adequate doses (225-300 mg) for adequate periods of time. [4] Very large doses may be necessary for treating patients with CH who tolerate medications much better than patients without CH. [4, 5] One patient with chronic CH showed complete response to indomethacin 150 mg three times a day." I'm not saying this prescription (Indo before DBS) is correct -- it's just that I think this is the first time I've read about high-dose Indomethacin as a possible treatment for CH.

I think you're right, it's been 2018 since Tom contributed to discussions. I suppose you could always try direct messaging him via the site here, as that should deliver a notification to his email. I do remember how much success, and pretty much a new lease on life, he'd found with busting following his DBS, and I would hope the same could work for you if you develop a renewed interest in busting and the D3 regimen.

“I have patients in our cohort and our clinic who say they go to neurologists with all the symptoms of cluster headache, and the neurologists say that ‘you can’t have cluster headache because you’re a woman,’ “Dr Belin said. The fact that this could still be occurring to this day is just so mind bogglingly far beyond negligent.