Bejeeber

If I may pipe in for a moment J, I think that is a super helpful account, and a much needed reminder of the major advantages of preventative busting. Thanks. 8-)

Just a lil' bug in the ear reminder here that when busting is considered, it tends to be a less drawn out process when embarked upon at the start of a cycle than it is in a cycle that's in full swing.

The term "roller coaster ride" comes to mind when viewing this thread. Dammit, sorry to hear the nice CH remission wasn't permanent. :'(

Personally I had to take it above 25 LPM (more like 45 LPM ) after a couple decades into my episodic CH experience. It was at the point where in high cycle I probably wouldn't have even bothered with 25 LPM. Some others have gotten to this point too, and that, of course, is where I got the idea. A demand valve system would come in so handy at these times, but if keeping initial outlay expenses down is a top priority, just a higher flow regulator could be something to consider. Also, Dan/Hipshot has found that when regular old occipital nerve blocks weren't working, a "facet" version of them would.

The kind headbanger folk who have replied here have said everything I woulda or shoulda. 8-) I'll just emphasize the importance of tapering off the pred as prescribed, and the optimization of your O2 rig and strategies. You sound like one well researched CH'er who won't be deterred from blowing this beast away, so apologies if these details are the sort of which you've already been well aware.

What they said. There are a tremendous number of CH'ers for whom low flow/rebreather O2 ceases to work, but after we upgrade to high flow 100% O2 it works again (!), and allows us to get off the blocking prescriptions so we can bust.

Hi Victor, Others more informed than I could more reliably answer some of those questions, but I do know this: 1) Many US insurance plans don't offer much coverage for O2 for CH. 2) A lot of CH'ers in the US have found their best and most affordable option is to use welding O2, which is purported to be the exact same stuff as medical O2, but cheaper, and widely available without prescription or any other middle man interference. So as you can see, there's still a bit of the Wild West left in the USA CH medical scene.

That's some downright tuff love there J, and I feel compelled to endorse it.Â

Agreed with the other commentators, and concerning CHf's constant assistance getting critical info to CH'ers who are in a bad place, well if his name isn't already in the dictionary under "godsend", I move that we petition to rectify that omission. Personally I for the most part wrote doctors off long ago, but I haven't had the pleasure of an appointment with Boston Headache Doc. While we can theoretically/technically change doctors on a whim here in the US, last time I checked, it's commonplace to have to wait 2 months for a first time appointment with a local headache specialist (the only kind of CH doctor I'd ever trust at all), and for a CH'er in high cycle that long of a wait is just extremely wrong IMO. For an episodic suddenly and unexpectedly hit with a cycle, it can render the medical system practically useless. When, prior to my busting success, if I encountered this scenario I would tend to make an appointment with a run of the mill neurologist, knowing they'd be uninformed regarding CH, but with the intent of getting them to prescribe meds I had in mind and knew were the most likely to have some effectiveness. And O2. I did a LOT of research on the subject back then, since I knew I wouldn't have access to a doctor who had done any.

Ugh. Hate it when that happens. It's not uncommon either. I hope you are also seeing the positive side of the way episodic CH can morph over the decades, where your remissions between cycles last longer too....?

It does sound to me like you may have been experiencing the slapbacks and pipe cleaner - glad the above guys chimed in with valuable info about that. Here's hoping you'll be in the fading away phase with no more slapbacks toot sweet. 8-)

I can just relate my own RC experience which typically has involved about one minute of marked nausea, before drifting off to a better than usual night's sleep (I ingest 'em on an empty stomach right before bed). There was one time when I was lying there in bed, having forgotten I'd even taken a good 65-75 or so RC, and I noticed with eyes closed I was seeing some colorful things on the inside of the 'ol eyelids. Took awhile before I realized "oh, it must be the from the RC". Then I conked out. I guess I must've been in possession of a pretty potent batch that time.

If it was me, I'd up the dose next time, 1g is commonly thought of as about as low as you can go for an effective dose, whereas 1.5g to 2g seems to be a more common dose these days. Hopefully you were off of steroids or any other busting blockers for 5 days before that first bust, so they can't be blamed for the fact that you barely felt it?

J-dad, you've come to the right place, lotsa folks have turned their conditions around courtesy of info gleaned here. I agree with MG about the importance of getting the diagnosis, and would like to add that it is absolutely critical that you go to a genuine headache SPECIALIST neurologist, as chances are any other type of doctor or neurologist won't be informed and will do you wrong. Then if you are diagnosed with CH, maybe don't just automatically go on any pharmaceuticals prescribed, but first carefully consider the non-toxic, more effective solutions often discussed here such as busting, high flow 100% O2, etc. You could find yourself thinking "cursed, shmursed, I've turned the corner on this krap!"Â 8-) OK you might not use those exact words, but I would.Â

That is *stunning* to hear he could make such a turnaround with his CH, thank you for posting this huge blast of hope Tony Only, as disturbing as it also is to hear of the severity of his phatmaceuticial side effects, with prednisone looking like a primary culprit there to me.

My take on this after viewing numerous discussions on it over the years is that yes, you can. A couple other chronics have reported partial success while on the verap, enough to get them off the verap, then full busting success once off of it completely, so it appears to me as if verap could be just a partial busting inhibiter, but not a deal killer. Oh s**t!! Pardon my american, but WTF?! I know what one 3 hr attack in a day is like, but 5 such attacks.....that's just an unimaginable horror to me that is not put-able into words, so I guess I'll stop trying, because they''re all coming out profane. :'( I think this is actually very true - whether it's as simple as a D3 regimen, a truffle growing right there at your feet , occipital facet nerve blocks, etc., something will work.

Echo, really sorry to hear of this terrible escalation. Morphing and worsening of symptoms is unfortunately common enough with CH. Reading the above replies to your post restores for a moment at least my admiration for the potential of the human race , all good stuff. My impression of the CH experience in The Netherlands, from those of you have reported on it here, is purely anecdotal, but it goes like this: 1) FANTASTIC that psilocybin, a long term, preventive much more effective than any prescription drug, is actually available legally in the form of truffles (!). 2) Good support system for chronics unable to work. 3) HORRIBLY ARROGANT AND IGNORANT DOCTORS So anyhoo, regarding busting and fear of bad trips, lots of CH'ers here have reported a tranquilizer taken while dosing - either valium or xanax - is a wonderfully effective bad trip preventive. It's exactly what is given to bad trip sufferers in emergency rooms. That's something I would do if I were you, along with J's set and setting ideas (I'd also be seriously considering CHf's thoughts on looking into the alternate diagnosis of hemicrania continua, and Ajax's mention of ketamine). Can a chronic still be helped by busting? Yes, but it will likely take more doses than it would for an episodic, and full busting success can be more challenging for those in high cycle.

Hi Newfie, I just wanna say you've been receiving spot on advice here, and I strongly agree with all of it including switching to a qualified headache specialist yesterday, as your doctor has made the same old classic prescription mistakes we see countless uninformed doctors making over and over again. For instance, no well CH informed doctor would ever prescribe the oral form of imitrex for CH, it has been widely known forever now by CH'ers and headache specialists to be too slow acting.

Booj, I'm just throwing out ideas here - while you're considering procedures, I'm wondering if you've considered the orders of magnitude less drastic and less risky occipital Facet (emphasis on the FACET) injections that Hipshot/Dan has gained some long lasting relief from? Here's a thread he had started on the subject (it looks like he gained some temporary relief at that time of his first reports. More recently we've heard of his sustained success with it): https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1380388743/0

I think ThatHurts is asking good questions there, and I also agree with CHf that if it were me, I'd try the mamjuana. Well I'd try the mamajuana that is if I was in a place in a cycle where I didn't fear the alcohol content too much, or if I was able to conjure a non alcoholic version, or if had enough confidence that the alocihol in this context wouldn't be a trigger, which happily has been the case with at least one chronic CH'er for whom alcohol normally is a trigger.

Interesting stuff there TryTo, thanks. 8-)

You struck me as an extreme case indeed back in yesteryear Tingeling, so to hear now how well you continue to do is about as inspiring as it can get!! [smiley=thumbup.gif] [smiley=thumbsup.gif] [smiley=vrolijk_1.gif] Are you still taking the world by storm in the Crossfit competitions?Â

"WTF" is right. That's thoroughly horrifying to hear of - as common as it is for CH behavior to suddenly and unexpectedly change after many years or decades of predictability, this 5 hour thing is way off the charts. You definitely wouldn’t be the first one who, after 20 + years with CH, finds it necessary to bump up the O2 lpm considerably, and otherwise optimize the delivery with hyperventilation, etc. in order to get it working again, in your case for when those severe whopper attacks hit town. There’s also the thing where some CH’ers find an energy shot/drink right at onset helps the O2 work better. I was thinking if it was me, I’d be going straight back to the busting ASAP (I personally have found vitamin M to be more effective than RC so far, but everyone’s mileage does vary with this and seemingly all things CH related), but re-reading your post, I see you could possibly be near the end of your cycle. So there is a bit of a gamble with busting at this point I suppose, since it's possible your cycle could be ending soon without any busting intervention, and there is the risk of slapbacks from busting, especially when in high cycle. In any event I would be prepared to bust and bust big for prevention before the next cycle, or right at the very first sign of the next one, that being a time where there's high likelihood of busting success, and no real slapback risk as far as I know. It's also common enough for episodics to find their remissions lasting longer after a couple decades with CH, but also for the cycles to become longer, and attacks more severe, if that sounds like a familiar pattern to you. Since you've mosty experienced night time hits, and the afternoon blasters are a newer development, I'll remind this coming weekend please DO NOT RELAX too much. Stay real engaged in something at all times when awake, since the beast loves to hit hardest when we relax. Don't even think for a second of taking an afternoon nap.

Hey there ProjFluff, I wouldnÂ’t be quailfied to guess yay or nay about a CH diagnosis for you, but a genuine headache specialist neurologist (NOT an ordinary garden variety neurologist!) definitely would, and IÂ’d recommend making an appointment with one if possible. Make an appointment to get a diagnosis that is, but proceed with caution when deciding whether to go on any toxic pharmaceutical drugging plan. [Edit: after reading CHf's post I'm remembering to say that if a given attack isn't occurring on just one side of the head, I feel pretty confident it is unlikely to be CH] High flow 100% oxygen can work wonders for aborting CH attacks (see info here: https://clusterbusters.org/?page_id=77). And busting can potentially prevent cluster cycles altogether, with a better success rate than any prescription (see Nat Geo video on busting here: https://www.youtube.com/watch?v=qFuL7pcShDk)

Yeah thanks CHf!! So "Alcohol percutaneous neurolysis" is a nerve block using alcohol?....basically you're taking your CH out on a date and getting it drunk?