Bejeeber

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.

Due to a notoriously short attention span it took more than one sitting for me to finish the article, but I think it is excellent and important indeed, and I'd highly recommend it to everyone. Especially eye opening for me is how high a dose they appear to be using so effectively in the therapeutic setting.

We need tireless, super informed and knowledgeable, good people to be advocates, and thank gosh for BB, because that is him in a nutshell. I'd endorse him 1,003 times for a WEGO award if I could, but I just did once, and it was quick'n easy. Thanks for bringing this to attention CHf.

It would be C for me too, but I've been in remission for a good long time, so I don't know that my vote should count right now....

Hi got-h, I'm hoping that after corresponding with Batch you'll be comfy with restoring the D3 intake back to the effective level you had it at, at which point I won't be surprised if the O2 effectiveness issues will be resolved too. Batch certainly knows WAY more about D3 than 99.99999999999999999% (or more) of PCPs.

Well if anyone is going to find what explains things by hook or by crook, it's going to be Didg. 8-) This is most likely entirely unrelated, but your first post and its mention of a bark smell reminded me about how I smelled a strong "diesel fumes" type odor coming from somewhere in the neighborhood once, only to find that it was actually a bunch of decorative bark that had been laid down, and for some dumb reason, I mistook its natural smell for toxic fuel fumes (!?).

Cn, from your description my feeling is that you should have no concern about that twinge being related to a tendency towards CH. So it is appearing more and more likely to me that you will get off Scott free in the CH dept. 8-)

Hi cn, I have zero scientific data on this, sorry, I'll just give you my impression from having seen probably over a thousand accounts from CH'ers (and talked to many in person) over the years: LOW. In fact at the moment I'm not recalling an instance of CH inherited by a daughter from her mother. And even in the unlikely worst case scenario of you inheriting CH, newer treatments (such as busting, high flow 100% O2, D3 regimen) are improving the lot of CH'ers dramatically and IMO we're just getting started in that dept., so you could pretty much count on suffering WAY LESS than your mom has. Now maybe someone with some harder statistics or what not can supply a less anecdotal reply.Â

As far as injections go, last time I checked, 6 mg is pretty much the max dose, as high as they go. Lotsa headbangers do find 2 mg to be effective. When I was still injecting (back before I became a buster), I settled at 3 mg. I might've been able to go for 2mg, but the one time I tried it I didn't catch the attack as close to onset as usual, and it got away from me, the one and only super pent up, angry, full blown 3 hour attack of that entire cycle Afterward I figured "um yeah, maybe I'll stick with 3 mg just to be safe - and always catch them right at onset!"Â

Regarding the injections, I don't personally experience any perceptible side effects from them, but I hope that if you're not already deploying reduced dosage injections, it might be an approach that would help you experience less side effects....?

I don't believe a yay could be uttered (or in my case uddered) loudly enough, but I shall try: [move]YAY. YAY. YAY. YAY. YAY. YAY. YAY. YAY.[/move]