Been reading posts for a couple of weeks but have been afraid to post. 
Got diagnosed a couple of months ago but am not sure that it is correct.  They don't fit all of the described symptoms I have read about.  My headaches don't come in clusters, they happen all year long with at most a week in between attacks.  My headaches can last up to 8 days round the clock or just 30-60 minutes.  The ones that last the longest aren't as painful (pain level 6-8) as the shorter ones (pain level 9 or 10). 
Oxygen therapy does stop them for up to 2 days but then they come back. I haven't been able to take any of the preventative drugs.  I have been found to be either allergic to, or have very bad reactions to, all of the preventative medications (verapamil, lithium, depakote, topamax, etc). 
Don't know what step to take next, or even IF I want to take another step.
Can't continue, gotta go cry now, if this is a stupid post then just ignore it.
Laurel

Laurel, it's not at all a stupid post....but it does make me wonder whether you have more than one headache type going on.  It sounds (to me at least--and I'm not a doctor) as if you may be getting migraines as well as CH.  There are a number of people here who do.

If you haven't yet done so, check back with your doctor with your symptoms. 

Allergic to the usual medications or not, there are approaches that can be used that can work for you.  But it's going to have to be a coordinated effort between you and the doc.  It probably isn't going to help overnight, either.

All the best, and welcome.

George

Lots of good advice, glad my post wasn't stupid.  It is hard to type about my problems.  I did look at the pain scale, and I would say that most of the time the headaches are at a 6 but just after I go to bed it will ramp up to a 7 or 8 for about an hour and keep me from sleeping.
The O2 almost always aborts the attacks, I have been using them since April and they have only failed me once.  I keep the tanks on my back porch ready at all times.  My headaches are always on one side of my head, usually the right side so that is what caused my doctor to decide they were cluster headaches and not migraines.  I had also tried some migraine medications in the past and they didn't work on these headaches. 
My doctor is just my primary care physician.  I have been thinking about asking for a referral to a neurologist.  I did not know there were doctors who specialized in headaches.  I will send an email out to my doctor asap to get a referral.
I haven't been keeping a diary, but I have experimented with different types of foods that are supposed to bring on headaches and have not found any that are a trigger.  I will do the diary thing now so I can show it to the headache doctor whenever I get in to see him.
What is a "shadow" type headache?  I saw it mentioned elsewhere and wasn't sure what it meant.
One weird thing I did find to be a trigger is my son's squealing and screaming while he plays.  After hearing about 4 or 5 of those I start feeling the headache coming on.  His twin sister's screaming doesn't cause them, his have just the right pitch I guess.  They are both happy mommy now has the oxygen tanks and is no longer so cranky.
When I was a teenager and in college I used to get these headaches but they fit the cluster type of symptoms much better.  Then they just stopped and I didn't get another one for 19 years.  At least I got a nice reprieve.

Hi, Laurel. Glad you found the courage to write us. Funny how we dread stuff like that only to find there was nothing scary there at all. Anyway, dittos on all you've been told.

A shadow is our way of talking about one of two things: either a low KIP ch or the residual/rebound type pain after a regular hit. Shadows can persist for hours, or even days. They aren't supposed to be there and you should treat them with O2 just like a higher KIP hit. And the O2 works best when you get to it soonest, and stay on it for as long 10 minutes AFTER the hit goes away.

And for what it's worth, chs don't usually cause sensitivity to light or sound. That's more like migraine I think. Try pinching your leg, real hard (or just imagine it) and turn on a light, or a radio. The extra stimulation may be annoying, but it's the nerve in your leg screaming that hurts. The rest isn't really taking part. Kinda like that with chs.

Let us know how you make out with your referrals. God bless! lance

You're absolutely right, Kate. With CHs, there is no "normal." I stand corrected. Blessings. lance

Hi Laurel,

So glad you found this website. You will learn much and that knowledge will dispel much of the fear associated with your HAs. That O2 is effective is good news though you don't mention what kind of set-up you use or how you use it. There are experts here that may help you to make it even more effective. That you're unable to take any of the prevents may well be a blessing in disguise as they all have nasty side effects.

Should you be unable to find adequate relief using O2 properly along with Red Bull type energy drinks while avoiding your obvious triggers, you might check into the "cluster-busting" methods advocated at Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or . They also have a Message Board (forum) like this one. Good luck.

Ron