Hiya!  I've suffered from CH for maybe 7 or 8 years - always thought they were allergy headaches, since I get occasional migraines as well.  I was just recently diagnosed, but I've got a couple questions that the GP couldn't answer...

I've never kept a day planner or anything, but I know I get them to the point of clenched fist, nails into palms, want to hit things, walk around bad once or twice a year for a couple weeks a go.  That sounds typical.  But I also seem to get them several other times but... milder?  Does this happen to anyone?  They're still always on the right side of my head, still wake me up at 1:30 on the button if I can even sleep, but just not nearly as bad.  I've seen people say something about shadows, is that what they're talking about?
Also, does anyone else ever get inner ear pain?

Anyhoo, thanks for having this site and any responses.  I've already learned so much, such as how crappy it is to hear a doctor use the word "manageable".  They need a new word, I'm not writing a work schedule.

Thank you all in advance,
Bert.

Hi Bert, and welcome.
I have experienced everything you mention. Definate cycles for a set number of weeks, but even when "out" of cycle I can still have random "one offs" that come out of no where.

My pain focuses around my temple which is where it's the most unbearable, My jaw and teeth come a close second. Sometimes it hurts behind my ear and once or twice I've had a really sharp stab of pain in my ear drum, but only when having a really bad attack. If you are having pains in the ear at other times it may be a good idea to raise it with your doctor in case it's unrelated to the CH.

Come back and tell us what meds you have been given. Sadly most doctors don't have a clue, but the good news is - we do.  All the help I've ever had was generated from this site.

As Mike said, you should really see a specialist, and also ask for an MRI scan, just to be sure it's nothing more sinister (as if anything could be more sinister than CH).

Yes, what you describe is what we call shadows.  Exactly the same feeling as a full blown attack, but without the crippling pain, if that makes sense. There is no mistaking that feeling. I use it as a marker- the minute I feel it I'm off to the 02 tank just in case it's the beginning of a big one.

Hi again Bert
Just to add to my previous post your doctor is right when he says the condition is maneagble. I've had CH for 9 years now. The first five years were undiagnosed and the closest I've ever come to hell. But the last 4 years have been very manageble, because I have the correct meds.

Yes, you will feel tired from the interupted sleep - but even that can be helped, and of course the attacks will always come when it's least convenient. But the correct meds can be used discreetly and are almost instantly effective. Tell us what meds you have.

The word that needs to be changed is "headache". Calling CH a headache is like calling the sun a glimmer of light.