Bejeeber

Hi Vike, Yes, this sort of phenomenon has been reported before by others who thankfully did not go full on chronic! I know whatcha mean. O2, the way it was prescribed 34 years ago failed lots of us. But that's because it was (and unfortuntately too often still is) prescribed in a weak and ineffective manner. Fast forward to the new millenium and CH'ers start finding out that high liter flow, 100% O2 has a WAY WAY better chance of working - super high success rate! Here's some O2 info: https://clusterbusters.org/oxygen-information/ So the O2 could become a nice safe substitute for your imitrex after all. I think most everyone (definitely including me) will agree that your doc is right for banishing imitrex, but if you get desperate and decide to risk it, this imitrex tip details how to reduce your injection dose by 66% or so while retaining the same effectiveness, and I would hope (but I'm not a doctor) it would reduce side effect risk correspondingly: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1361807077 OK I know I already gave one answer to this, but I think you should also know how legions of CH'ers, including some chronics, have knocked out their CH cycles by embracing cluster "busting". A National Geographic segment on the subject featuring our forum member Dan/Hipshot makes for a good introduction: https://www.youtube.com/watch?v=qFuL7pcShDk

Man that's great to hear Sergical. You still busting with RC seeds? I seem to recall you were having good success with them. What I don't recall is whether you ever tried the mm - asking because it's the busting substance I know of at the moment that has shown real effectiveness at knocking out PTSD.

Ugh. It would've been such a breakthrough if it would've helped. Really sorry to hear of the seriously disappointing letdown.Â

Interesting report there Lallangoti, thanks. Also interested to know what level and frequency of attacks you were experiencing before the 3 days of taking the CBD at night?

Ugh, that's disturbing to hear she's back in cycle - seriously, with all of CHf's tremendous and constant help for CH'ers, shouldn't she be a CH'er who is allowed to "pass cycle and collect 200 dollars"??!!  I guess I kinda already knew there is no justice in beast-ville, but this is rank. > All digits now crossed that the acetium experiment will bring some positive results ASAP for CHf'sDaughter and anyone else trying it.

I think you're getting all kinds of good input in the replies so far Siouz, including how busting can be more effective at the beginning of a cycle (and before pharma) than in mid stream, the new interest in acetium, etc. And thanks for reminding me about the facet nerve block idea, CHf - I'm copying and pasting now from stuff I was blabbing on about in a recent PM conversation after seeing Dan get such dramatic (and with the RF burning of the nerves, pretty long term) relief: --------------- Dan/Hipshot has reported on this type of nerve block and here's the initial discussion from when regular old occipital nerve blocks weren't working so well for him, but these were providing temporary relief: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?action=print;num=134430... Then this from 2013: "He burned the facet nerves last month which seems to really do the trick for a longer period." And now up to date with this most recent statement I've seen from him: "I get facet nerve blocks with 100% relief. I have gone 5 months PF this time" ------------------------

hi Lalla, The CBD subject has actually come up a ill' bit so far - here's some previous discussion on it: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?action=print;num=1391219173

Not at all IMO. Headbangers 'round here may be getting awfully sick of me pointing out what I see as a pattern, but the whole "extended remissions, but increased severity of cycles" thing as the years/decades go by is something I and a whole lot of other long time CH'ers have reported, leading me to believe it is indeed common. I'm 100% with Alleyoop - I believe your odds are still good if you bust it right now - every minute could count for heading this thing off. And I'd keep busting every 5 days until this cycle feels as if it's final coffin nail is firmly in place.

Thanks MG, interesting stuff, even if I do have to wonder whether it is realistic to think that non-psychoactive low doses of psilocybin could treat PTSD

And might I add they were experiencing some walloping chronic CH, which is that much more difficult to treat, but they're now enjoying very long remissions (just how long only time will tell). So IMO at least they are now solidly in the category of former chronics.

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.