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Showing content with the highest reputation on 11/04/2025 in Posts

  1. In the spirit of "the Lord helps those who help themselves", citizen science and understanding the transitional turmoil society is wrestling with these days its hard to do anything "unconventional" with traditional medical support as many who hold licenses are reluctant or not open minded enough to paint outside the lines. When treating individuals who come to a medical provider there is an obligation to follow the rules, protocols and standard of care. While this behavior is most common much latitude exists when addressing uncommon or unclear issues. The problem remains there is no real strong "proof" or data to support many treatment pathways. Experience, individual response and "because that was how I was taught" often color health care delivery. Point being, when addressing difficult to treat, poorly understood problems with unsatisfactory treatments like CH I submit there is plenty of room to explore options on an individual basis while ascribing to the overriding tenant "first do no harm". This philosophy allows exploration of things like psychedelics, vitamin supplementations, diet, nerve stimulation, o2 etc.. Most of these (and other) interventions started from individual case reports, speculation, dream states, desperation, deduction and reasoning. Proof of course proves elusive as the standard of acknowledging an effective intervention requires a control group or some fancy statistical manipulations. This is important info to have to make widespread recommendations but for individual choice the bar is much lower. The point of the blabbering is to suggest gut microbiome issues, diet and physiologic state and even other peculiar interventions are worth exploring when help remains elusive. Proposing ideas, reporting outcomes and supporting each other becomes critical. The horrors of CH are only know to those who suffer them. There is no way to express the pain, destruction of life goals, isolation and despair CH brings. One way to combat this is to feel free to evaluate treatment option no matter how far fetched. And then discuss.
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  2. ...wow, that is an awesome summary @Craigo...much appreciated! ...personal experience with multiple autoimmune ailments, forum discussions, and an awakening in medicine growing over the years has advised my bias towards some connection with gut biome. one particular experience (chemo), which i'm speculating dramatically altered mine and "possibly" contributed to a significant reduction in my active CH. ...i must say, as a "grampa" clusterhead, another bias is the hypothalamus as mediator of CH....lightheartedly as much as a cluster patient can be, some called "a wonky hypothalamus". partially as an "easy" demon to point a finger at since we really had nothing better...but supported by the symptoms of CH being nearly all systems and particulars controlled by the hypothalamus. not to say the inflammation you discuss would not have an effect on the hypo...but it would seem outsized to this layman. ...i look forward to more of this wonderful reporting...
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  3. Appreciation to you for a well presented position regarding the relationship between CH. CNS and gut microbiome. Bringing together your thoughts about Vit D and psilocybin as regards gut microbiome was well done. Your position is very useful because it helps understand why everyone does not respond to certain regimens (busting, D3). By inference it also amplifies the unfortunate limited intervention we do have as basically band aids. Oxygen, while life preserving. relieves symptoms without treating anything. Same for the triptans which are a deal with the devil in my opinion. The relative effectiveness of episodic steroids in high doses also supports your treatise. It will be interesting to see if CH turns out to be largely a gut microbiome issue. This is not far fetched given a few decades ago no one thought stomach ulcers would be a microbial problem. I encourage the CB membership to try and digest what you have shared. Thee is a lot to consider and a couple of neat rabbit hole to explore. My basic attitude becomes what can be tried without harm? To that end I would appreciate your thoughts on a pathway to test ideas. 1) Get some stool testing and profiling. This is becoming more and more available (without a lot of date) from functional medicine folks in the post covid, ivermectin ins a miracle era. Probable not mandatory but dT never bad 2) identify an appropriate probiotic to employ 3) consider D3 protocol or contiue 4) start ketogenic diet as strictly as possible 5) judicious use of psychedelics for their Anti-inflammatory properties (and maybe serotonergic influences) It will be interesting to see if micro dosing turns out to be more of an antiinflammation treatment rather than CNS Well done Thank you
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  4. I haven't gotten through all of this yet @Craigo but great write up so far!
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