Bejeeber

Although what you describe is pretty much exactly what I've experienced with the wake up hits at the peak of a non-busted cycle, despite using high flow 100% O2, I hope your soon to arrive mask, and possibly a higher flow than 15 LPM, can still help you achieve longer lasting aborts. Yeah who the hell would wanna do caffeine at 2 AM??!! Well maybe a super desperate headbanger might try it. I've seen several others report that for some ultra counter-intuitive reason, slamming an energy drink/shot before the O2 for a wake up hit will not only make the abort last longer, but somehow doesn't prevent them from going back to sleep (!). These are some of the same folks who have switched to using welding O2, due to the expense of medical O2.....

Hi wifey - I echo Fabac's sentiments, so sorry to hear of the loss of your husband, and we admire YOU. Regarding the neurostimulators, since I saw that they'll be covered at the conference, I've been waiting until then to get informed, so I'm sorry, I must plead ignorance at this time. :-? I have the feeling there'll be plenty of people able to offer input on that subject here after the conference.

Fabac, just in case you haven't run across this info tidbit, CH dosage of melatonin before bed is higher than ordinary dosage just for sleep. A common approach is to start at 9 mg, and work all the way up to 18 or even 21 mg if necessary. On the triptan injections end, I hope you'll be deploying lower (but still highly effective) doses a la the "extending your imitrex" tip: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1361807077

Thanks for reporting about this here par - looking forward to your next update(s). Glad to hear the mm has significantly lessened the severity and frequency of your CH - here's hoping you'll be able to extinguish the CH cycle entirely now!

Hi Brett, I have the feeling others may be along with some better ideas regarding how to proceed, but I can tell you that as hard as it is for me to personally imagine, switching sides is not an uncommon phenomenon. I know some CH'ers have been able to up the effectiveness of their busting if it starts flagging by switching to another busting substance - such as switching from vitamin M to Vit L, not that the L is exactly easy for everyone to get. Then there's the D3 regimen, and other miscellaneous ideas such as when Dan's M stopped working for him, he found occipital FACET nerve blocks would....

Dammit Ajax, will miss ya this year, but understood that the 20th anniversary duty calls. I think 20th is considered kind of a big deal? If 25th is the silver anniversary, then 20 is um, maybe zinc or something?Â

Jeez that's one stubborn case of CH you have brs82. :'( Reminds me a bit of the experiences of our forum member Heyupal, who incidentally has had his best luck recently with combo M&L busts. Here's that thread if it holds any interest for you: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1406929393 Looking forward to meeting ya at the conference, and ya might even want to compare notes when you're there with yet another stubborn chronic, Dan/Hipshot, who will be there (he's the Texan chap who has found success with the facet nerve blocks when nothing else was working). One more thing: I really appreciate seeing BostonHeadacheDoc's detailed reply to this topic!

Whoa. Don't ever get stuck in a phone booth with that stinkity dude.

Thank you everyone for piping in where I left off regarding symptoms. Whoa! 48%?! Well that tells (or, ahem, reminds me of) a thing or 2, thanks CHf, and MG, your account of 3 or 4 attacks on both sides informs (or, ahem, reminds me ) that it is possible.

Hi Grace, so this Mayo neurologist diagnosed you with clusters but has never mentioned injectible sumatriptan? I'm baffled by that one, it sounds like what you might expect from a non headache specialist neuro (they often know next to nothing), but this Mayo neuro is a headache specialist, right? And if that neuro is the one who prescribed the pathetically useless joke of measly 5 lpm O2, well just color me flabbergasted. So the good news is that there's a lot of very effective stuff you can consider now that you're getting on the necessary patient self education bus, including: Pain in both temples simultaneously as opposed to just one, light sensitivity, etc. aren't hallmark symptoms of CH - maybe some others here will want to talk more about that.

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.