This is very interesting to me as my brother has been plagued with clusters now for over 10 years. Like you probably, he's been to specialists all over the country, including a few stints at Mayo clinics. His quality of life, if you want to call it that!, has been absolutely destroyed. I.E. school, work, social life, etc. all take a back seat.
He too has tried all sorts of experimental drugs none of which have any real lasting effect.
So where do you stand right now and what are you taking? I assume like you said, that this post above is your hypothesis? Have you begun similar treatment?
I'm very interested in any and all info.
I think I saw above that you too use O2. If so drop me a msg sometime, we created a relatively inexpensive system to provide demand based O2 feed vs. constant feed(which doesn't work effectively.) I'm not looking to sell you anything don't worry! Just a few tips that may dramatically improve treatment.
Anyhow thanks for the interesting read, good luck!