Bejeeber

An abortive that works once or twice, then nuthin'? Unfortunately that is a familiar scenario to me. Example: Back in olden times I tried the newly reported-as-effective jamming of hot pepper capsaicin cream up the nose on the affected side and it aborted a hit! That one time. Following that it was just all nose pepper fire, no relief. I'm also the type who has found during the first days of a cycle, all kinds of stuff like lower flow O2, breathing freezing cold air, vigorous exercise can abort an attack, but as the cycle ramps up, forget it.

Oh I had specifically quoted this claim of hers as being entirely false: "ALL Cluster Busters is interested in is funding for & promotion of psilocybin “magic mushrooms” as a treatment which is all the group advocates for as the only hope to help us cluster sufferers." Not taking the bait. I suspect others could also be tiring of the feeding of the troll exercise this appears to have become.

I don't feel that Dallas Denny's frustration is misplaced. The claim in the above quote from Deborah Zale can immediately be identified as entirely false, but @Douglas Ward I don't think you'd necessarily realize that at this point in your membership here, since you appear to have jumped in with immediate single minded intent to spread your message. Seriously consider scaling back your frequency of posts (you've hit the ground running here with a lot of posts right off the bat), and be aware that posting of false claims including the one from Deborah "would love to slap all of us in the face" Zale that Bob Wold relentlessly attacked her (??!!) is offensive.

Here's an especially pertinent quote from Bob Wold on the the topic: " We have had the medical records of a couple actual patients that went through this treatment, with the permission of the patients, reviewed by one of the top headache specialists in the USA. He reported that the procedures used are unnecessary, ineffective and dangerous. This includes both the surgeries often involved (numerous) and the types of medications often used in large doses." "There are many people that report either a trigger to start a cluster cycle or an unexpected end of a cycle following all sorts of surgeries. From giving birth to minor surgeries to major surgery. No one knows why surgery can have this effect but in my experience it appears to probably be related to the different types of anesthesia used. Local or general. This could be a connection to why some people get relief with Ketamine. I would never recommend someone in cycle to schedule open heart surgery as a treatment for cluster headaches, even though you might wake up from surgery out of cycle." To be clear, the treatments offered at this SA clinic do not include open heart surgery, but the number of stitches I've seen on patients is probably close to the same number." "This is just one theory of why some people may report even temporary relief from these treatments but most experts that have looked at these treatments deem them as dangerous." Bob Wold

Wow, nice instinct there @Katie.b. I too now await someone else's report upon trying it (would try it myself, but not experiencing attacks at this time).

Like a lot of us, I found out the hard way about beer being a nuclear level trigger. As far as beer vs other alcoholic beverages are concerned, I've seen a couple CH'ers remark that beer is their guaranteed trigger, while something like vodka is not. I would not assume this get out of jail free card with vodka is universal for us though - clusterheads have definitely been triggered with hard liquor, so I haven't been inclined to risk testing the vodka theory!

Huh? Snippy, SHMIPPY, you've never appeared to have a snippy bone in your body, and I'll take this occasion to nominate you for the "Least likely To Ever Get All Snippy" award to be ceremoniously dished out at the next CB conference.

Yes I am, but since I haven't seen any docs for CH or used O2 since I've relocated here, I'm afraid I must be considered clueless regarding those aspects of the local scene.

Yes, THAT'S what I was trying to remember.

All I can report is I haven't had a tuff time convincing the PCP to order the vit D test as part of annual blood work. I had even gotten buy in for including testosterone, since that was a suspected issue with CH back in the day. Was as surprised as anyone to see the report come back showing a fully macho testosterone level at that time?!? I think for my upcoming annual bloodwork I'll also request the calcium and the other D3 regimen related thingy (the name of which escapes me at this moment) - I have requested those before, but in the end they didn't make it onto the panel.

Yes, very happy to know you have such a fantastic PCP!

Ditto - let's keep that cluster bunny fluffed down in 2024!

What Shaun saidagain. Wishing that Santa has brought everyone either a new bicycle or a cluster-free day rest of lifetime. Preferably the latter! We watched the movie "Elf" last night. Hadn't seen it since it originally came out. I wasn't busting at the time, but it has now occurred to me it could be another good candidate for anyone finding themself needing to do a Holiday bust.

Man what a captivating report - well done @doctornugz With all your reading, I bet you've well noted that the busting can potentially help with the PTSD-like stuff too, so it sounds to me like you're preparing for a good shot at some double whammy busting benefits. All appendages quadruply crossed for best outcomes. I've now taken appendage crossing to another level @BoscoPiko , try to beat that!

What. @CHfather. Said! @M-Philly you're another now-lucky soul to have received this analysis with suggestions from @CHfather, who I have considered a preeminent expert on the most effective ways to combat CH for many many years now. I would treat his response as gospel, and as a side note, after just one false start (failing to catch the attack at onset), I have personally found the splitting of 6 mg imitrex injections down to 2mg doses to still be very effective for aborting attacks.

I feel that I (and others who have completed this) deserve some manner of bonus points, not because the survey was at all arduous or annoying, more just because I'm always scrounging for them bonus points. It seems like a good, worthwhile survey, so it's time to throw the competitive gauntlet down: Are YOU cool enough (you get to talk about mushrooms and stuff) to take this one on??!!!

What @CHfather said!

Something that can make it difficult to definitively pin down whether a drug like verap is for sure the culprit for worsening and prolonging your experience is that this sort of thing can, and does, happen out of nowhere after 20+ years, even without pharmaceutical involvement. I sure wouldn't blame you for blaming the verap though. And yep, the phenomenon includes getting hit at times of day you never, or seldom have before. For a couple decades I'd never had an attack in the evening prior to bed, I had become entirely confident it would never happen, then boom, welcome to evening attacks city (this during a prolonged and worsened bout). Episodics like you'n me worrying that we're going chronic, even after only 8+ weeks or so in, is so commonplace, it is practically THE LAW, but not only is it unlikely, it sounds like it is way too early for you to have such concerns. Just trying to ease your mind there. What you have going on there SUCKS indeed - the sleep deprivation and everything. Sorry to hear it, and I hope some of the non-pharmaceutical interventions we yammer on incessantly about here may work for you (I know you were talking about adopting the D3 regimen previously).

Maybe @Racer1_NC would have some input on this?

Hi Rich, I'm interested in some history detail - were you a daily chronic CH'er for 10 years straight? Or if you were episodic, what was your cluster pattern there?

And busting (or continued busting, if enough has already been undertaken to quell attacks), has been known to knock out the shadows for some of the luckier headbangers among us.

Yep, I think for a lot of us it's both.

I see it is available for pre-order: https://www.amazon.com/Psychedelic-Outlaws-Movement-Revolutionizing-Medicine/dp/0306828944

WOW.

I've been in the Austin area for 7 years now, so you'd think I might know, right??!! But sorry, I haven't used O2 since arriving, so I'm of no help. You may already be aware that many do switch to using welding O2 when medical O2 availability or cost isn't working out for them. I don't want to threadjack here, but as an aside, many forum members have been needing a whole lot less O2 since pursuing the non-pharmaceutical preventives such as are discussed in the blue New Users - Please Read Here First banner link at the top of the page, in case you haven't already been looking into such already.