I'm chronic since diagnosed in 2015....was probably episodic for a few years before that (always had headaches due to high stress job). I have all the usual tell-tale symptoms always left. I was pretty much in denial for the last couple years and sure it had to be secondary "cluster like" HA to another primary cause. Burned through a couple neuros and PCP's all diagnosing primary chronic cluster through MRIs and process of elimination. I know now after reading a lot of testimonials from others how lucky i was to be pretty quickly diagnosed. i was in denial due to the seeming weird additional symptoms and the conditions unwillingness to adhere to any schedule, frequency, or intensity.

Until last week, when i found this site, i was averaging 6 KP6-10 daily, with no periods completely PF. Always had a shadow in between, and through the nights. Nearly all the big hits were during the day/evening My life and work schedule revolved around dosing suma 100mg tabs, which effectively allowed me to push the big hits around my work schedule mon-thurs..and fri-sun spent detoxing the suma in a feeble attempt to sustain half-life without over-dosing daily. Was on verap for nearly two years, with no relief before my old neuro finally agreed to throw in the towel after i fat blank told him i wasn't taking int anymore. tried topa a few times, with no benefit and huge impact to consciousness, motor, and metal sharpness, which i need to do my job.

Anyway to respond to this post, i always have pressure in my sinus area and never feel just good. My hits always start with a slight burning sensation on my left upper lip, then moves up to the left bridge in nose and parks there as it starts quickly ramping. the focal point of the main hit always stays there, but seems more radiated to behind my eye, socket and brow. I know i'm on the down stroke when the pain starts to radiate beyond my eye to my temple, my sinus starts popping, and it continues to radiate down the trigeminal to my ear and finally a sharp pain in ear like a pick was just shoved in there for about 5 seconds. after that the main pain starts to flow away everywhere at the same time taking @ 15-60 mins to get back to pre-hit feeling or follow on hit.

I am blown away by the amount of positive information on this site, and don't know why it took so long to find it. It has helped me a lot, not just with the hits, but mentally accepting that i need to learn/can live with this CCHA condition, and its probably not going to stop after just one more suma drop!!!. That i need to take control of managing my treatment, and there are options beyond what sanctioned treatments prescribe.

I did start Emgality a few weeks ago. Even though it basically had zero effectiveness in CCH trial, my neuro and i agreed what could it hurt, and they have a program that seriously offsets the cost to nearly zero as it gets off the ground. It could take up to 3 months to see any effectiveness (same ole caveat). Was two weeks in to the loading dose with seemingly more hits when i found this site and Batches D3. that was last sunday. I had all the mix because i tried it before i think off of ouch or CB but it had no effect. I have had the best week i have had in nearly two years, since my first and only pred taper that worked until it got to the taper part...lol. The missing co-factor leading to failure the last time i tried D3? Antihistamine!...Thanks Batch. i had my first PF day the very next day! it didn't last PF, but it has so far allowed me to experience KP1-3 mostly and only one day of a few 6s and only one 10 all week. So...Thankyou very much. i now have some optimism and feel i can inch back control of my life!

Hi Brian
As you may remember, I don't get any warning.  I have loads of shadows - almost every day, which rarely amount to anything, but I know the beast is there.  When I do get a big hit, it's 0 - 60 in 10 seconds. But no aftermath - 5 minutes after it ends it's like it never hapened.

jon019 wrote on Nov 17^th, 2018 at 5:38pm:


tried O2 more than a few times in PCP and neuro offices. never helped...but after reading here, wasn't administered ideally for cluster aborts. Putting together a rig to give it another try. never drank energy drinks, or thought about it for aborts until reading it here..going to give it a try.