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Still haven’t been able to get more than 1.5 hours of sleep at a time but I’m loving the back and forth on this thread between everyone!

...yur stirring a semantics pot Jeebs....3 kinds of lies, ea progressively worse: lies, damn lies, and statistics. for me i was 1 out of 3 with a methylprednisolone iv/taper...so 33%. but the first time, it stopped a cycle MID FREAKING cycle. it was a miracle!!!!....and 100%. i'm guessing.... with COMPLETE confidence.... that the actual number is somewhere between 0 and 100%.....

This is what one of the world's leading CH experts recommends regarding steroids: "Corticosteroids in the form of prednisone. 1 mg/Kg up to 60 mg for four days tapering the dose over three weeks is a well accepted short-term preventive approach. It often stops the cluster period, and should be used no more than once a year to avoid aseptic necrosis." (google [goadsby management of cluster headache] to see the whole document)

...spiny is entirely right that O2 suppliers must follow the script, BUT, it's important to note that YOU don't have to. get the script (hardest part) then crank that regulator (you bought your own on amazon to save on leasing, right?) to whatever works....key being reservoir bag full enough for full breath each time. for many that's 15-25+ lpm...some even higher. no one knows or cares what that is, find the flow that works for you. some find that starting high then lowering as the hit subsides an effective strategy and saves O2..... ...one of the saddest phrases in clusterville is "oxygen doesn't work for me"...when, in fact, it doesn't work at that pathetic flow....turn that baby up!! and experiment with various breathing techniques too. hyperventilation most frequently reported successful, but also slow breathe and breathe and hold...or a combo of all, can be the bliss.....

LOL I'm good Jeebs. I love you guys but I know when I'm out ranked Poor Titan was just looking for 4/hrs. of sleep and look at all this info he got! (I mean that admiringly) because even with a little bicker & banter the info is good!

Oh come on @BoscoPiko, you'll be missing all the fun and exhilaration.

Parsing further, however, "stops the cluster period" doesn't necessarily mean ends the cluster period. It could just mean stops it temporarily, which is not uncommon though maybe even that doesn't happen "often" based on the definition provided. It just so happens that the very "world's leading CH expert" that I mentioned, Dr. Goadsby, did a double-blind etc. etc. study of the effectiveness of the recommended prednisone taper. You can read about it here. https://www.jwatch.org/na52979/2021/01/05/prednisone-transitional-treatment-episodic-cluster Having read that, you can explain to me what the heck it means. It mentions some people "achieving attack freedom by 7 days," but not how many, and not whether anyone's cluster period was completely ended. Overall it seems (to me) that maybe most people got significant reductions in attacks but not complete freedom from attacks. Being able to read the whole thing and not just a synopsis would probably help. And then there's this one, with a few hundred authors, that also says (I think) that pred reduced attacks but says nothing about eliminating them in the short run or fully ending the cycle. https://pubmed.ncbi.nlm.nih.gov/33245858/ Although I see here again, in this discussion of this study (https://www.reliasmedia.com/articles/147514-prednisone-vs-placebo-in-short-term-prevention-of-episodic-cluster-headaches), the unclear statement "After seven days, cluster attacks had ceased in 35% of the prednisone group." -- which of course still fails to meet the provided description of "often," and still doesn't tell us whether that cessation was temporary or cycle-ending. But I do remember, as others might, a crabby woman who wanted to take pred while she was pregnant and asked whether it would end her cycle. She was told "might stop it temporarily but probably not end it," which was very irritating to her. She mustered the energy just a few days later to tell us we were idiots because it did end her cycle, long before she could possibly have known whether her cycle had ended or not. But I am nonetheless adding her to jon''s instance and declaring that to be often.

Far be it for me to mince words with one of the world's leading CH experts, but I feel like "It occasionally stops the cluster period" might offer a more accurate idea of what the chances really are. If one of the world's leading CH experts has convincing hard statistics to back up that "often" claim though, I might have to back down.

I don't know much about steroids other than you most likely don't want to continue them often. As far as breaking your cycle you might want to check out the blue ribbon at the top of each forum page "new users please read here first" sometimes we have to go outside of the typical treatments provided to us by Doctors/health care providers. As for your second question regarding the D3 regimen, I see no reason to discontinue it even when out of cycle, nothing wrong with a well boosted immune system! Lastly being declined health services even when willing to pay out of pocket does seem discriminatory. Maybe try and find a headache specialist center as they would be more likely to help you than even a high ranked neuro... On a final note I wonder what would happen if you just told them that you don't have insurance?

...all our eyes over your shoulder mate....

Talking a lot like that seems like it would have to be a really good sign! I would imagine the heavy pain killers etc. she must be receiving could be partly responsible for the lapses into the "Spain" thinking. And wow, possibly removing feeding tube and moving her off critical ward soon? One hurdle after another constantly being overcome. She does sound so strong indeed!