Bejeeber

Well now that is the bona fide zinger right there, for a chronic CH'er to get such results. WooDAWGY, man it would be cool if you could make the upcoming conference. Granted it's a bit of a hike from California, but hey you're so close to the Ontario airport there, and Nashville can be fairly nice this time of year (no guarantees though ). CONGRATS on that astounding 90% decrease.Â

Yeah, since it has some branching piece of spaghetti that looks like it goes over the top of the eyeball, that does look to me like it could be it. Good find, Didge. 8-) [side note: my CH, including shadows, has been very mid trigeminal focused - right behind the eyeball, sometimes radiating down to upper teeth. I didn't even know the temple/upper trigeminal could be so heavily involved in a CH attack until I read about the experiences of others with it here.]

I point my eyes dowward as if I'm looking down, then press at the top center of the 'ol eyeball. Well the top, but maybe not the exact center, a little off to the side towards the ear on that side of the head. For me, it's a matter of just pressing around in that region until BINGO, nerve hit. Takes about 1 second to find, it's a pretty big and easy to find target for me. See how long you can stand pressing it. Let's all try it. C'mon it's a fun and wholesome activity for the whole family to enjoy! Hey I just tried it again and I think the reason I vibrate the fingertip is that it's the only way I can keep the nerve continuously lit up, otherwise it's just a quick twinge, then gone when pressing. I call this spot a nerve, but I'm willfully ignorant about physiology and stuff, so I don't really know if that's what it is... And my next experiment just revealed that on the non CH side of my head the nerve spot is more towards the center of the head, so I suppose this could be variable from individual to individual. PLUS I've found that after a certain amount of activating this nerve the pain/creepy itching associated with doing this can go away, not to be easily re-activated, and that can be the point for me where the shadow also shuts off. This shutting off tends to be temporary, doesn't necessarily last as long as an hour. End of rant on the Jeebs Jibulator tm shadow squashing procedure. For now.Â

Hi A-Chimp! Thanks for checking in about this subject here. I don't have experience with licensed massage therapy, but I know some others here do, and hopefully they'll see this and respond. I can just tell you that I have a pressure point or something on top of the eyeball on the affected side that when I press with a fingertip (thru the eyelid) I can feel a distinct nerve pathway - I bet everyone could feel it on this spot. ANYHOO I've been known to knock down CH shadows for a short time by pressing on it (in a vibrating reflexology kinda way, not sure if that's necessary though). It feels damn creepy, kind of like an "itchy" nerve, but it works for me. I think I may have tried it with an oncoming genuine whopper of a CH attack at one point, but gave up on it and went for other abortives. Thanks to busting, etc. I haven't had the "opportunity" to test it with anything more than a shadow since. I hope I never do have that opportunity again.Â

That is good idea! I buy stuff from amazon all the time, so I just followed the link and signed up for the CB donation smiles.[smiley=vrolijk_1.gif]

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.