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 and welcome Bert

Was it your GP who diagnosed you? With CH we have found that you need to work with a headache specialist to confirm your diagnosis and get you started on a good treatment plan. Normally most GPs, even most neurologists just do not have the skills or experience to properly diagnose and treat CH. This can result in misdiagnosis or incorrect treatments.

Not all CHs have the same severity, they can range from minor (which we call shadows) right the way up to the full blown ones which are akin to a torture session.

Inner ear pain isn't something that I've seen people mention, but common pain sites are around the eye, temple and teeth (just look at where the trigemenial nerve has branches and that is where most people get the pain.

As to doctors saying they are manageable, that is actually right, but it needs the right treatment, hence the strong recommendation to work with a headache specialist.

Keep reading and ask all the questions you have.

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.

+1 Mike NZ
+1 maz

Both of them gave you advice that could not be stated any better.

Don't hesitate to come here 24/7 and ask questions and/or vent as needed. We understand your pain and frustrations and are here to be supportive ;)

-Gregg in Las Vegas

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. ;D

hi Bert just to let you know i do get inner ear pain like something stabbing me when my ch starts, then it goes more around my eye. The inner ear pain made me doubt my ch diagnosis because i have tmj on that side and i used to tell my doc the problem is tmj not ch ,then i noticed that it came back on the same months so i now i believe my  doc. And i get relief from imitrex injections and the vit D3 regimen. Good luck!!