Bejeeber

Hi @AchyBreakyHead - sorry you have the need to be here, but welcome. You've tried a bunch of stuff I see. Good news is there is more to try, and it's better stuff. One thing to get out of the way first, is whether your attempts with oxygen were optimized or not? High liter flow (like 15 lpm or higher) with a non-rebreather mask is widely considered a minimum requirement by those in the know, so if you were prescribed and tried lower flow (like 8 to 10 lpm) with a rebreather mask it's not surprising it was ineffective. You'll find more about this and plenty of other very pertinent info in the Basic non-busting information linked to below. Meantime busting, which is a much more effective preventive than any prescription, is described at the blue New Users Please Read Here First bar at top of the page here ^^. My suggestion would be to check this info out, then post any further questions you might have! https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/?do=findComment&comment=61401

This was the kind we had during my relatively low rent upbringing. Yeah they kind of sucked and there was no real fun associated with them in my recollection.

"Hobbyhorse"? That's a good one! Nobody should be surprised to see me also start adopting use of it trotting that one out.

Jimmy, you sure received an exhaustive bunch of replies from a best-possible source in the person of @jon019 - I would say these are worthy of enshrinement, continual referencing, and revisiting-until-ingrained.

Just a couple off the cuff thoughts (please pardon how they lean towards devil's advocacy): I'm not under the impression yet that AI generated music, convincing as it can be, has exactly been universally embraced by music fans (take me, for instance ). If AI generated music is 'created' and prominently promoted by Clusterbusters, could it become a distraction, with some CH'ers being put off by it, or am I just caught here clinging to the horse and buggy of the music-made-my-actual-humans concept? Certainly music has become tremendously devalued monetarily with the advent of streaming services, where anyone can listen to any music they want on demand, whenever they want it, so a welcome gift or prize of music may not be perceived as particularly valuable (especially since CDs or downloads appear to have become passé)?

Ahhhh, the return of Spiny!

Not that I'm aware of - especially since busting doesn't require constant dosing or particularly high dosing, and there is apparently evidence that psychedelics can actually be mind expanding. People with a genetic predisposition to schizophrenia are warned to stay away from busting though, since there is said to be a real risk of triggering such a latent condition. I think the people who are closest to having mastered it know it can be a fool's game to assume the CH monster can never get 'em again. I'm now in a several years long remission, successfully busting when the shadows start intensifying in a way that signals an an episode wanting to rear up, but also probably benefitting from the not uncommon phenomenon of aging out of it at least somewhat - where the remissions can become longer and longer, whether busting or not. One dirty little secret there though that I hate to mention is that along with extended remissions, extended bouts/episodes can be concurrent, and the frequency, intensity and length of the attacks can increase. I REALLY hate to mention that part, and should add that this increased severity when in cycle should not be expected to automatically accompany extended remissions. I don't know about 100 years ago, but 1,000 years ago some indigenous peoples used psilocybin, rivea corymbosa seeds, etc. for severe head pain. The O2 aborted attack reappearing an hour after falling back asleep is also unfortunately pretty common. Hang in there man, you'll get through this one and will be positioned to potentially prevent the next cycle completely.

Well your doctor wasn’t necessarily completely off with the advice to take a triptan pill an hour before a pretty much otherwise guaranteed sleep-induced attack. It seems it’s the TYPE of triptan pill that is at issue there. Some CHers have reported success preventing attacks with this approach, but with sumatriptan pills. Not surprised that the especially slow acting naratriptan didn’t work. Of course any triptan is not typically recommend by us busting folk around here though. for those with the buck$, there are independent labs now proliferating that do whatever bloodwork you want without need for a doctor’s order, cutting out the middle man. I would imagine there are some of those pretty close to you in LA for the initial blood draw, and that they could be searchable and findable online.

There have been reports of CHers staying on medium-ish level dosages of verapamil and still successfully busting. [EDIT]: I just saw this pertinent bit about verapamil from my exceptionally trusted source, @CHfather, in another thread:

Not knowing whether it would be a viable option in your case, many CH'ers have opted for welding O2 (no prescription needed, and of course hopefully no wait).

Apria takes a WEEK to fill the order and deliver it if at all?! That comes across as genuinely negligent , sorry to hear of this.

The time keeps flinging by in more and more of a jiffy with each passing year dangit! As much stuff as you've seen @Dallas Denny, it's about time to honk out a tell-all memoir is it not? Or maybe a highly edited one, but still a memoir! I'm just glad you have some long livin' genes on your dad's side. Me, I've worn out innumerable pairs of genes and they all have holes in the knees now.

Hey I resemble that remark.

Congrats on this success - pretty impressive.

Hi @Nikola, I've probably made mental note of this especially since it corresponds to my own experience, but I've seen many report extending remissions as their decades with CH hurl by. In fact for nearly a couple decades, remissions between my bouts with episodic CH (which started around 1980) were ever-increasing in length, something I imagined that if I'd kept track, those extensions might have correlated to some sort of Fibonacci number series. The bouts themselves extended also though, increasing in length from a couple weeks to 2.5 months, and at some point the attacks increased in severity, with the individual attacks going on as long as 3 hours, compared to maybe 20 minutes or so with my very first inaugural attacks. This increased-severity deal could have been spurred by one truly honking drug cocktail I was prescribed at a point, though imitrex, the most oft-accused drug for causing such issues, wasn't even available then. I still find myself with nice longgg remissions, but not predictably ever lengthening - I've had shorter ones following longer ones, so no pattern anymore. The blue 'New Users Read Here First' banner up top of the page here ^^^^^ provides introduction to the manner in which many of us have successfully thwarted the Cluster Bunny when it comes a 'knockin, and the Basic non-busting information is good too:

"Completely CH free" isn't what everyone on the D3 regimen achieves, but glad you've arrived there!

Whoa, Blonde BEAUTIES , and so good for them to have been able to remain together like this!! At least one of them is clearly snuggly as hell, they're both ultra squeezable, and judging by paw sizes they'll both be a couple of HONKERS. If there is anything guaranteed to lift everyone's spirits, this is it. Hey the bad times have rolled enough, now let the good times rage! CONGRATS!!!!!!!

Re: the caffeine - as long as you’re continuing to experience nice quick O2 aborts, no need to go there with it IMO, but when additional help is needed, here’s a decidedly strange and inexplicable thing: Those of us who have braved caffeine with our O2 for wake up attacks have pretty much universally found that somehow we can still unexpectedly go right back to sleep afterwards!!!!?? 5 hour energy type shots are popular, as they also contain plenty of taurine (which is thought by some to also be beneficial), and of course they contain just a fraction of the sweetener you'd get from an energy drink. I would hope they would also contain only a fraction of the other junk.

I've had a similar rebounding experience with O2 aborts of wake up attacks, and have noted others also reporting it enough that it appears commonplace to me. The rebounds can occur as frequently as every hour or so, something I'm personally familiar with. Your 3 hours between rebounds is relatively luxurious, and actually worth savoring from the perspective of some. It could be a good idea to have contingency planning for going with higher O2 flow, and having awareness of advanced breathing techniques and the incorporation of caffeine, just in case your success so far with aborting attacks at 8 liters doesn't hold (I don't wanna go all negative and alarm anyone, but sometimes the 8-10 liters doesn't hold, and beefing things up is required). Staying on the O2 longer after the attack is fully aborted might help extend the time between the wake up rebounds.

I see the kitty in your profile pic now @Craigo

I think something went wackadoodle with the above link - let's see if this one will work (the site itself seems like a nice one): https://clusterfree.org/

Wow, that's terrible, sorry to hear it! If your neuro wasn't a headache specialist, well those are the ideal ones you want to see - it can be quite the long wait to get an appointment with one though, and that seems pretty universal, no matter what country you reside in. Last I checked, verapamil is known for lowering blood pressure, and is even prescribed for treating high blood pressure, so I wouldn't imagine your high blood pressure to be a verapamil side effect. I'll leave the T syndrome (or did they test for "T series"?) abnormality for others who may know about it. Sumatriptan injections have historically been prescribed in too high of a dose, specifically 6 mg, whereas doses of 3 mg (or even 2 mg for those such as myself), are plenty effective at aborting cluster attacks if caught at onset. It could be worthwhile to let us know what kinda sumatriptan and verapamil doses you have been prescribed - if you've been issued the big dose 6mg Sumatriptan (which I would have to think would increase risk of side effects), there are ways to split those injections:

Hi @philiph, Magic mushrooms Busting dosage: typically in the .5g to 1.5g (dry) range. Reactions: Tripping, during the bust, then often relief from CH following, but also brace for possible 'slapbacks' (increased CH activity for a day or two). How long it takes varies, with 3 busting doses spaced 5 days apart an often successful protocol (for episodics anyway). It works for an impressively high percentage of us, but not 100% of us. DBS anecdote: One chronic member here had the DBS with no success, then eventually tried the mushrooms and got some very significant, sustained relief. The Blue 'NEW USERS - PLEASE READ HERE FIRST' banner at the top of the page links to more busting info.

This link for it that I received in an email functions for me: https://thethirdwave.co/webinar-cluster-headaches-and-neurological-disorders/ If it's still not working for you, maybe trying it in a different browser or something might be worth a shot?

Yes, pretty normal. Lesser intensity pain between attacks? Also normal, commonly referred to as "shadows" This sucks @susie1984 - I'm no diagnostician, but "ridiculously painful, start behind my left eye and radiate down my face into my jaw and teeth and nothing is relieving them" sounds like classic cluster headache symptoms. Sorry you appear to have become a member of this club. If only there was some medical approach like botox that worked for CH like it does for migraines. BUT there are effective treatments!! The blue banner "New Users - Read Here First" at top of page here ^^^ links to some good starter busting info. That, along with the Basic Non-Busting Information could help you hit the ground running, and hopefully you'll be on the way to relief ASAP.