Bejeeber

What Pete said! Personally I like that one as is, no rhyming required or desired. 8-)

P-Elf / Mysti, We've missed you too and been thinking about you - A LOT. It seems like it's been forever since your last post, so it is fantastic to see your thoroughly riveting storytelling talents in full force here again, but *stunning* and disturbing to hear about all you (and especially your mom) have been through. :'( So glad and relieved that at least your noggin is doing better though!Â

High flow O2 is so much better of a route to go for an abortive than imitrex, on so many levels. BUT, Warning: I'm about to blurt out a controversial (?) statement.... From what I've seen, the word *O2* can practically be interchanged with the word *Sumatriptan* in the study on increased frequency of attacks, because it can happen with O2 too. Here's something I've experienced and compared notes with others who have experienced the same: In high cycle? Being awakened every hour with a re-attack after aborting with O2? If you abort it with imitrex you'll get 3 hours sleep before the next attack instead of just one. So could I personally recommend imitrex over O2? NO. Quite the opposite. But I think when comparing the two (which is something I realize I'm the only one interjecting into the conversation here so far), the potential serious heart risks from imitrex use I've been hearing more about lately, the toxicity, the expense and the availability are what make O2 the vastly superior choice, not necessarily the rebound issues. Thank gawsh busting preventatives are working for so many of us, and O2 is safe and non-toxic if needed for an abortive. Of course everyone's mileage may vary, and as an example of that, Nightcrawler, I hate hearing about your 51 attacks in 7 days when on imitrex, what a nightmare, and extremely bad mileage.Â

1) Um...sometimes...from what I remember that info can seem like a huge load of legal fine print boilerplate warnings to comply with laws here in the US, or just a case of lawsuit averse lawyers going hog wild trying to cover every base and create work for themselves, but whatever the case, I'm a bit out of the pharmaceutical loop....thank gawsh....since adopting busting instead of toxic pharma for CH. 2) Yes, sometimes to the nth degree 3) Back when on pharma, I looked at the risks, weighed them against the specter of unrelieved CH attacks, and if the risks were particularly ominous/dangerous.....I would say screw it and still go ahead and risk it anyway. Examples: At high cycle I was injecting five 6mg imitrex shots a day (back before I knew 3mg was a plenty strong dose), right when media reports about coma and death from imitrex were peaking (mid/late 90's). I was charging up a helluva credit card bill at the Tijuana farmacias I would cross the border to visit for imitrex, available there without prescription. Or taking sustained high doses of prednisone despite reading it could cause me to need to be on dialysis for the rest of my life (I don't know if I had even read that right, but now I know too many CH'ers who've needed hip replacements courtesy prednisone, and it sure walloped my immune system after tapering off of it, a known side effect that still treats me to repercussions 26 years later). So my drug risks offered mixed results. I don't know if I'll get off scott free without any imitrex heart issues catching up to me many years after my imitrex abuse. I do have to say imitrex saved my arse for a couple cycles back when busting and 100% high flow O2 weren't known options. Yes I did experience more attacks per day - just as I do if aborting with O2. Here's the thing about that though: I still made it through an entire approx. 11 week cycle without a single attack ever going full blown. And I was never aware of a single side effect from imitrex, which makes me lucky, as that sure isn't the case with everyone. I'm mainly critical of imitrex because of what I've seen others experience, especially the spate of recent reports of SERIOUS heart issues, but not from my own experience. I think the fact that we can be so desperate to quell the beast that we'll take scarily risky amounts of prescription dugs is a good reason for all CH'ers to be well informed about the busting alternative.

Agreed with CHfather. Again.

Sorry I don't know anything about Botox injections in the Sphenopalantine ganglion. It does sound hopeful to me though that the topical anesthetic at the SPG had some good effect. The most closely related discussion I've seen here that I can recall at the moment is on the subject of the occipital facet Botox injections Dan/Hipshot received from a pain doc with some success: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1380388743/0 Best of luck to ya tomorrow robertr.

I'll admit to having zoomed to 42 mins for my initial listening. Good stuff, thank you Shocked.

That is awesome to hear about the Ting. Super vigorous exercise at the onset of an attack is a known abortive for some of us (for me it can work, but not in high cycle). For others exercise is a CH trigger, which is just the sort of added insult to injury only a beast could stoop to. >

And may I add that when I talk about busting I'm specifically referring to using Rivea Corymbosa seeds, psilocybin, or other substances in that realm in the effort to stop the cycle. That appears to me to be how it is "officially" used here in stickies like *BUSTING INSTRUCTIONS* and info for Newcomers, but sheesh have I been using the term incorrectly all these years, not realizing it actually should include prescription meds and the like? Doh. If we get more responses here I will be interested in how others have been thinking of it.

I've finally watched it in it's entirety. Agreed with everyone about it being fascinating, awesome, powerful.

Now THAT is some serious pain tolerance! Sheesh if you go into the espionage biz and find your fingernails being pulled by enemy agents, I guess you can do the fake pain thing where you're saying "ow! ouch! stop it, you're being mean!", while you're thinking "ho hum, oh well, maybe I can also get a pedicure outa the deal while they're at it".Â

Whoa Spiny - Kung Fu, AWESOME. Not having ever pursued any such training is a major regret for me. I've learned my Tai Chi from an instructional DVD. Not the same as learning from a real live good teacher for sure. It could certainly even be considered an inherently LAME approach, but it has it's own advantages, such as being able to go at your own pace, unlimited rewinds for memorizing the moves, and consistent demonstration to practice along with daily.

Ugh that deadly combo of ignorance plus arrogance seems to be way too pervasive in the medical field worldwide when it comes to CH. Thank gosh for the occasional good doctor here and there, drixhen's first doc being a prime example of the goodness.Â

Yeah that is just so way out of touch with the real world for a specialist to have never even heard of busting???!!! I think it would only take more like half a minute of googling for someone to know more about what's really going on out here than this "top neurologist".

A couple things come to mind that provide some perspective: First a quote from our forum member Sierra: "I am a former Marine that has been shot, stabbed, severely burned, and had several bouts with kidney stones....none of that comes close to the pain caused by a cluster attack." Second, when I was at the last CB conference a question was asked "how many CH'ers here have given childbirth?" Lots of women's hands went up. Then "how many found childbirth to be as painful as CH"? I saw one hand go up.

Wow you really did strike a wall chord there MG. Yeah Tai Chi sounds like some good plan B thinkin' - the Tai Chi I'm familiar with doesn't involve any holding of the head upside down anyway. And how cool would it look (and feel) to be doing Tai Chi on the deck of your boat? 8-)

The bit of it I've watched so far is fascinating indeedy. [smiley=thumbup.gif]

Wow that's good news Whooligun. Glad your doctor knows his stuff but sad that he makes patients with critical conditions wait 2 years. Uh oh I feel a rant coming on...here I go, watch out: The long waiting list for headache specialists can happen sometimes in the US too. Maybe it's different when someone is head of all things headache in Canada, but certain docs just can't think for a moment to put CH/HC type patients to the head of the line. Just not do-able while they treat 1000% less dire and painful headache conditions, as apparently they skipped class in med school on the day when the concept of triage was covered. And gosh they never have a single cancellation in 2 years where they can fit in someone in who is in a quite possibly suicidal state. I've personally encountered these types, and in my book they are severely negligent in this aspect of their practice and need to be called out big time. OK, back on track now, so indomethacin for HC, yep that's been discussed aplenty here lately, and it sure seems to work for HC'ers. I echo your call for those with the symptoms you mentioned to look very seriously at the possibility they could have HC as opposed to CH, while they're waiting the 2 years or whatever for their appointment. Ricardo recently mentioned guarana as something that could help mitigate the gastric upset often experienced with indo for HC BTW.

Makes me wonder whether some (or all) of the case reports of CH responding to indomethacin could be attributed to doctors who have misdiagnosed hemicrania continua sufferers as CH'ers....?

I sure hope that one hits town in more like one year than two, and ends up being as effective as hoped....

GOOD ONE! Proud o' ya, and thank you. Next time a producer will be involved who will leave stuff like O2 and busting in the report. 8-) After having had the pleasure of lunching with you and the human members of your family at the CB conference, I'm glad to see the complete picture now by also getting a gander at your Poocher McDawgDoggy at the end of the segment.Â

I'm with tangerine and would encourage you to try not to worry too much about going chronic......at one point my cycles began extending in length - from their original 4 weeks to 11 weeks at the last cycle. That process started 25 years ago and I haven't even come close to going chronic. From what I've seen, the lengthening of cycles is common, but so is the lengthening of remissions, so I sure hope you too will get that particular longer remissions side benefit as part of the deal!

What J and tangerine just said. My hope would be he, along with any other CH'ers who could benefit from info about busting, high flow O2, D3, etc, will learn of these often critical things that aren't so often discussed at the doctors office. It would be nice if he could come here, or has come here, and would be treated well just like everyone else hopefully is, while learning of some of the potentially super effective current treatments and hopes for the future we discuss. I don't think condemnations, personal attacks or demands for money will make anyone feel like hanging around, or that we should try to demand anyone become a spokesperson, so how about we continue to leave the non CH related stuff like net worth, political views, etc. out of it here regarding fellow headbangers....

No, but there was an issue with a Stonehenge stage prop that ended up being 18" instead of 18'.

No spinal tap history for me.