after finding this forum. After reading all the first hand information this site has to offer (which is alot) I may be doubting my ENT's premature diagnosis of CH. I'm waiting for my appt. with the neurologist to delve into this and get to the bottom of it, but wanted to inform myself in the meantime since I trust doctors these days as much as I trust mechanics. I've been picking up bits and pieces of the description of an "attack" and believe I understand that they are different than mine. I myself can't explain pain in a graphic way, especially when the pain is above any comparisons I can think of that someone would be realistically familiar with. I am still persuing this with a neuro. but just had to mention how in awe I am of the community you have.
Last thing. My attacks reach a level of pain that I can't describe and I have a very high tolerance for pain.
If this isn't CH and this pain fails in comparison to CH attacks, I am floored by all of yours stamina to endure this.
My hat's off to you all.
May the new year bring better days....
Andy

  Have you read the kip scale to the left.

Yes I have. I have been to what I would call kip10 (I have no way of comparing definite intensities) on several occasions and the scale is in tune with what I feel but so many things vary.
 It starts in the left eyebrow, takes over the eye, down to the jaw like CH, but it will also migrate to the right side and give me the full frontal assault. Epicenter is the eye sockets. These "headaches" do not stop for one day. They do not by law get me up all the time. I have only had an attack bring me out of sleep a handful of times, but not a majority. I may get up in the morning tip toing trying to sneak out of the house without it, but it lets me know it's there by the time I get to work. Usually around 11am it will start wrecking the place and It will tame anywhere from 1 to 3 hours later. I then drink water for all I'm worth trying to keep the commute home crasher from coming. Mostly it hit's around 4pm. All other times it is a dull to heavy headache. Luckily my work makes it easy for me to suffer these attacks out of sight, but I've had them hit on the drive home and I can only imagine what people are thinking as they see me in what looks like a fit of rage in the car on the side of the road. And once while fighting the drive home. This lasts for about 6 weeks. beginning and end of the period don't have the skull crushing cycles.
Whenever I get up in the morning and don't feel it. All I have to do is scrunch my eyebrows together and it will feel like a tingly feeling along my forehead that lets me feel every crease in my forehead. Almost like the skin is stretched like a trampoline. Then I know it's there.

One thing you have to remember is that CH comes in many shapes, colors and flavors...there's even debate in the medical community of whether it should be cut down into subcategories.  And the fact that it's rare means there's not as much data on it as, say, migraines or other common neurological problems.

As much as I hope it isn't CH, don't let anyone tell you it can't be CH just because your attacks don't match "the norm", capiche?  There's plenty of stories on here of folks getting misdiagnosed for that reason; especially if the doc isn't up on the latest research.

There ARE folks here who have 3-4 hour attacks.  There ARE people who usually don't wake up from hits at night.  And the same meds don't work for everybody,either; or, maybe something won't work for this hit, but it will work on the next one...so keep plugging away.  ;)

And don't forget, you can have more than one headache at a time, unfortunately.  :D  I have a nearly continuous dull, sickening migraine the whole time on top of the hits; that made it harder to diagnose me.  And some people get rebound headaches from medications.  So having a continuous level of pain doesn't necessarily discount a CH diagnosis.  :P

Sometimes we have to educate our doctors on this stuff; just remember that a good doctor will be willing to listen to this information and try the things that have worked for so many sufferers here.  good luck!!  :)

Hey Andy,

Don't rule out CH yet.  I don't get hit in the middle of the night often either.  It's best to let a Headache Specialist figure it out.

Your "dull to heavy headache" sounds like what are called shadows.  I have weeks where the shadows don't leave at all.

Either way, welcome to the site.  I hope you get a good diagnosis and find some relief soon.

-Dennis-