CHfather

Glad for the press! I wonder if we'll see any additional traffic here. You'd think so, but in the past it hasn't really turned out that way. Thanks for participating, Denny!! I think I'd give the article about a C (C minus, for not quoting the interesting and useful stuff you undoubtedly said), but you gotta give the effort and the awareness-building an A. (If only it really worked like that -- one shroom dose (while out drinking!!) and PF after just one more attack.)

We're all about using psilocybin to treat CH here. Read over in the ClusterBuster Files section, #s 1, 2, 3, 4, 6, (https://clusterbusters.org/forums/forum/6-clusterbuster-files/) then ask whatever questions you have. You'll have to stop the triptan, though, and since your cycles are typically so short (can't really count on that continuing), it might or might not be worth it to you. You definitely want to get OXYGEN, as soon as possible. Read about it here. This is crucial for managing your CH. Also, consider the vitamin D3 regimen: https://clusterbusters.org/forums/topic/1308-d3-regimen/ And many people find that quickly drinking an energy shot or energy drink at the first sign of an attack can lessen or even abort an attck.

How close are you to the Airgas store/how convenient will it be for you to get refills? Unless you're a big strong giant like Jeebs or Denny, as spiny says, that 125cf tank is a lot to lug around. It might be more manageable, though probably more expensive (how much more, I don't know) to get two 60s. (At an average 20 lpm flow rate, 125 cu ft will give you just about 3 hours of O2, or about 9 20-minute sessions.)

Many thanks, Bob, for all the ways in which you have helped everyone here and in the worldwide CH community. Your patience and determination are creating benefits for years to come. Jerry

From here, too -- all the best to all the great folks at this site, long-timers and newer members.

Thanks, Tony. Love the pic. Hope you're doing well.

I mentioned this in another post here, but figured it was worth putting here, since it seems like maybe another new thing we might have learned. In the abstract I have pasted below, it says that triptan use is a characteristic of some people for whom oxygen is ineffective. I can't tell how effective the oxygen system used in the study was (flow rate, mask, etc.). What I think is interesting is that we often tell people that oxygen seems to work more effectively during busting. I think we have attributed that to the busting, but it seems possible that maybe (so many ifs and maybes, but you all understand that) it's the detox, being off triptans, that makes the O2 more effective. Or not. Cluster headache and oxygen: is it possible to predict which patients will be relieved? A prospective cross-sectional correlation study. Haane DY1, de Ceuster LM, Geerlings RP, Dirkx TH, Koehler PJ. Author information AbstractResponse to 100 % oxygen as acute treatment for cluster headache is relative low considering certain subgroups or predictors. The primary purpose of the present study was to find prospectively which factors differ between responders and non-responders to oxygen therapy. The second goal was to find whether any of these differences would clarify the mechanism of pain reduction by oxygen and cluster headache pathophysiology. Patients diagnosed with cluster headache according to the ICHD-II criteria, who started on oxygen therapy (n = 193), were recruited from 51 outpatient clinics and via patient websites in The Netherlands. Patients had to return two questionnaires around the start of oxygen therapy (n = 120). Eventually, 94 patients were included. Clear non- plus moderate responders had ever used pizotifen more often (p = 0.03). Clear non-responders more often had photophobia or phonophobia during cluster headache attacks (p = 0.047) and more often had used triptans in the same active phase as the phase in which they had used oxygen for the first time (p = 0.02). Using correction for multiple testing, we could only confirm a statistically significant difference in triptan use. We were unable to locate the level of action of oxygen in the thalamus and cortex or confirm the sites of its action presently known, solely based on current knowledge of photophobia circuits. However, we conclude that particularly the higher frequency of photophobia or phonophobia in clear non-responders deserves further study to understand the mechanism of pain reduction by oxygen and cluster headache pathophysiology.

If you really wanted O2, you could either (a) try to persuade a doc with the substantive medical research; ( find a doc who is not an idiot and who will prescribe it; or © set up an O2 system using welding O2, as many many people have done when (a) and ( failed. If you want information/assistance with any of those possibilities, let us know.

I can't say anything except how very, very sad it makes me to read this. Hoping those meds will mean a manageable cycle that ends quickly. Really sorry.

lbh, If you click on one of the forums -- "General Board," "ClusterBuster Files," etc. -- and then, on the right side of the page, click on "Start A New Topic," you'll see below the new message space a thing to click to upload a file. I guess "Theory and Implementation" would be the most appropriate place to post it, but anywhere will do. Thanks! How's the O2 working for you?

We -- my daughter is the person with CH in my family -- get the whole O2 system home late at night -- and we didn't have the wrench! Luckily, she didn't really believe that O2 was going to help her anyway (as we have discussed), so she wasn't too upset about it. Her joy the next day when it did work was one of the happiest moments of my life.

Thanks. lbh -- and thanks for the citation to that O2 article. If you have access to the full text, I'd love to see it. I confess I had never heard of a "tusk mask." Three notes: (1) All welding O2 tanks take the same type regulator (CGA 540). Medical tanks take different sizes, but the size you have fits on larger medical tanks. (2) At Airgas, you can buy a wheeled cart for moving around your tank, or a stationary stand for it. (3) Great reminder about that wrench! I always forget to tell people that. Unless I'm doing my math wrong, I think you should have almost two hours of O2 at 20 lpm in that 80 cu ft tank.

Yes, it has the nipple (I called it a nipple before -- probably more accurately described as the barbed connector, or something like that. In any event, it comes with the regulator). At some Harbor Freight stores, they also sell O2 tanks. I've never seen anything bigger than a 20 cu ft tank there, and they were sold empty, but you might check.

At www.harborfreight.com, type 94846 into the search bar at the top of the page. Or type oxygen regulator there; they only sell one kind. Check the Store Locator -- they have stores all over the place, and there might be one near you.

Diamondmaker! Great to see your handle here again. Been thinking of you.

All welding tanks take the same type of regulator, a CGA-540. That's the kind that's also used on larger medical tanks, such as M tanks, but not on the smaller medical tanks, such as an E tank. The smaller medical tanks use a CGA 870 regulator. You can of course buy a regulator at the welding place, but (a) they're expensive, and ( they don't have a nipple for attaching the hose for your mask, so you have to buy an adapter. The regulator I linked you to is relatively inexpensive and comes with the adapter. (Welding regulators do not have clickable lpm settings, or even lpm indicators. You have to fool with it a little to get the flow you want, but that's a simple thing to get used to. And the flow will go as high as you want it.)

People use 'em all the time. Be aware that when you go to a welding supply place, you can't ask for tanks according to medical tank sizes ("E" or "M," for example). I believe they're typically sold in 20 cu ft increments. An experienced person once told me that the welding tank equivalent of an M tank is a "Q" tank, and that that is a standard industry designation. I can't vouch for that, but the source is a reliable person.

Tanks purchased from welding supply companies (there has been some talk about getting them at eBay or even amazon, but eBay makes me nervous, and amazon seems to sell only small tanks, expensively). Prices seem to vary very widely. Regulator: http://www.harborfreight.com/oxygen-regulator.html Mask: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit Of course, you still have to get them in, out, and refilled.

Moxie, I was very happy to see your head poking in, but then very sorry to see the condition it's in. So many here hoping it gets better soon. Love to you.

In another thread, shya reports that her husband had some success with clomiphene, which is a fertility drug for women Here's a link to the abstract of a recent report, from Dr. Todd Rozen, of a long-term remission: http://onlinelibrary.wiley.com/doi/10.1111/head.12491/abstract And here's what you'll see at the link: Objective To describe a second case of treatment refractory chronic cluster headache responsive to clomiphene citrate and with long-term follow-up. MethodsCase report with 7-year evaluation. CaseA 63-year-old man with a 17-year history of chronic cluster headache preceded to have significant adverse events or was nonresponsive to multiple cluster headache preventive medications including verapamil, lithium, valproic acid, topiramate, baclofen as well as greater occipital nerve blocks and inpatient hospitalization. The patient experienced 3-5 headaches per day. On clomiphene citrate 100 mg/day he became 100% pain-free and remained so for 3.5 years with only mild fatigue as a side effect. He then had cluster headache recurrence and did well on gabapentin for another 3 years with repeat headache recurrence. Clomiphene was restarted, and he became pain-free once again. DiscussionThis is the second reported case of the effective use of clomiphene citrate for the preventive treatment of medicinal refractory chronic cluster headache. This is the first case to report long-term follow-up of this neurohormonal treatment. Clomiphene citrate appears to be safe for extended use in chronic cluster headache even in an elderly sufferer and has a minimal side effect profile. The mechanism of action of how clomiphene prevents cluster headache may involve both its ability to enhance testosterone production and its ability to bind to hypothalamic estrogen receptors. Clomiphene citrate should join the list of alternative cluster headache prophylactic treatments to be considered by headache specialists when conventional cluster headache preventives are ineffective.

Mit', maybe this has been asked somewhere else, but do you also have oxygen?

Charlotte, have you checked at any of the Facebook cluster headache groups? A lot of folks there from around the world. They might not recognize Oliver's CB handle -- but some might, as there are quite a few ex CBers there, and maybe some others will recognize his real name.

D3 comes in units of more than 1000IU. I think most places will sell at least 5000IU, and probably 10,000IU, and you can buy larger units online.

There's a lot in this book, including the canards about leonine features, hazel eyes, and rarity in women, as well as some other even crazier previous assertions. I think if you click on this it will take you to the general area of the book: https://books.google.com/books?id=aJRV199FZcoC&pg=PA306&lpg=PA306&dq=natural+history+of+cluster+headaches&source=bl&ots=fyJk6GA3h7&sig=4b9Sr072xVPYxzucg8arOZIX-fA&hl=en&sa=X&ved=0CEgQ6AEwBmoVChMIvbuq563kyAIVRRo-Ch2bIw6P#v=onepage&q&f=false If not, the book is Wolff's Headache (2001), beginning on p 283. This article also looks interesting -- http://www.ncbi.nlm.nih.gov/pubmed/15745624 and on the right side of the page is some other stuff. There's this: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2117620/ The wikipedia entry has some info, including this: >>CH has alternately been called erythroprosopalgia of Bing, ciliary neuralgia, erythromelalgia of the head, Horton's headache, histaminic cephalalgia, petrosal neuralgia, sphenopalatine neuralgia, vidian neuralgia, Sluder's neuralgia, Sluder's syndrome, and hemicrania angioparalyticia.<<

There's a list here of recommended doctors: https://clusterbusters.org/cluster-resources/ I see there are three of them, and none in the Twin Cities, but maybe one is close.