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...i feel like me and my boy Sherman have entered the "wayback machine"....since i thought this has been general knowledge for decades!? nothing new but a short read. liking the part where they say will spur additional research (ANY research into ch is good research)....but more specifically, if lesser dosages are of sufficient efficacy so as to minimize the well known negative and severe potential side effects of over and/or extended use.... mr. peabody 'Clear Evidence' Oral Steroid Effective for 'Suicide Headache' (medscape.com)

Yep. While it's been known to most. I'm sure the medical community (Doctors...) are light years behind in getting the memo. Right along with writing O2 scripts. Cheers, J

hi...welcome... ...not necessarily to defend "old man doctors", but i am part of that phrase and i feel like pointing out that MIS-diagnosing young/female clusterheads is just a quick and easy out for them on a LONG list of reasons for missed diagnoses ....all ages, genders and types of docs. few are trained/ know/learn squat about CH. i present as a classic case of CH...both symptom and stereotype.... and still went undiagnosed for years...most of us, sadly, have the same story (i think it's an avg of 3-5 yrs)..... ...be your own best advocate, if you can't find the right ha doc, at least find a doc who is open to learning ...if need be, from you! .....we can help.. best jonathan .

A very dedicated fellow from somewhere in Europe (Belgium???) persisted with creating and testing a data-collection app, getting people to use it, and tracking the data. It's here: https://nobism.com/remind-collect-data/ In addition, some very large studies, such as the one carried out by Dr. Larry Schor and others, have surveyed people with CH and created detailed profiles of treatments and perceived efficacy. You can imagine the immense difficulty of getting reliable information from these gigantic efforts, given the many, many variables that need to be taken into account. But many blessings to those who are making the effort. Batch (xxx) has also tracked the impact of the D3 regimen with a fairly large group of people with CH.

...we understand frustration.....

@jon019 Thank you! Yes, obviously my frustration is seeping through here. I would obviously love if this was a misdiagnosis! But I hope I'll learn enough here to be a better advocate for myself, and I appreciate everyone's help.

Pulling this old topic out of the closet. It's a good topic for discussion. There is plenty of research showing how histamine can play a role in cluster headaches. The Diamond Headache Clinic has for decades used a histamine desensitivevation (sp) program in their in-patient unit. It's a long process but many people have had good results in breaking cycles this way. (as well as plenty of failures along the way) Many of us prior to getting a proper diagnosis rely upon OTC antihistamines that do provide some relief. You end up needing more and more. In todays world, I'd probably be investigated for having a meth lab with all the OTC antihistamines I used for my clusters. ( the first 4 years i had a "sinus infection") Anyway, I was sent this recent article about histamines that I thought someone may find helpful. (Ignore the ads for wine ;-) https://drinkpurewine.com/blogs/histamine-intolerance-side-effects/histamine-intolerance I hope everyone is having a great fall, at least weather-wise if not other areas of life. Hang in there people, Bob