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You stay strong! No matter what we are all here with you!

Hi Billie, So sorry to hear that your going through what throughly sounds like a terrible cycle If it makes any difference it really does sound like CH to me. Anyhow I wanted to mention that you could always start the D3 reg in the meantime which has really worked well for many of us. The upside to the D3 reg is that all the supplements are easy to obtain and overall quite good for you and your immune system. I have attached the latest info on getting started for you. I hope you get some definitive information from your upcoming appointment. Hang in there!!! Quick Start Guide - Sept 2023 (1).pdf

Thank you so much!! I definitely want to try the D3 regimen, I have read so many positive things here. It has been really terrible, and I hope I’m right that it is ending. I had a mild but long episode today, after 2 days of nothing so I’m a bit afraid it’s coming back. But at least it was mild, and just one!!

This is so common, I had a maxillofacial surgeon tell me I had clusters after a root canal did nothing to help me. You never know what type of doc your gonna get until you meet them for the first time. My doc not only knows clusters but also looks at and supports this site. You may luck out and get a clear diagnoses and find out its not clusters (that would be ideal) or you may end up having clusters(not so much fun) but at least you will know what path you will need to take. Your above description sounds like clusters to me for sure, you also seem to have a somewhat upbeat attitude about this knowing the type of pain your having. Keep your head up and just take it one step at a time and we are all here to help answer any questions you may have.

Well at least you've braced for that in case it happens, but hey you never know, you might get a good diagnosis out of the deal. Especially if this neurologist is a headache specialist. It's unfortunately true that regular old garden variety neurologists are thought of us as often being ill informed regarding CH. I bet you've seen that this is indeed some straight up classic CH behavior. I've known some diagnosed CH'ers that mainly get hit in the temple (upper trigeminal), as opposed to the behind the eyeball routine I got used to thinking of as the CH standard. It sure sounds like how a cluster cycle often ends - CONGRATS ON MAKING IT THROUGH, and now hopefully you'll gain a nice long remission. Yep - all they can really go by is a description from the patient, and your descriptions seem fine. Best of luck and results with the upcoming appointment. I'd say don't make too big of a deal out of it - if the doctor isn't right, just set this as another appointment/doctor to ignore, and seek out a headache specialist while you're in remission. They can have long waiting times, but you don't have to be in an active cycle to go in and get a diagnosis.