I am a mother of a 14 year old girl that was just recently diagnosed with CH.  But she does not have the classic symptoms of CH.  I am not sure if this is what she has. 
She gets her headaches around 8-9pm every night and they last until about noon the next day.  She is able to fall asleep. She cries her self to sleep and she moans while sleeping and then when she wakes she is still crying.  Her cycle seem to be for two months every day and then off for a month.  They are located in the back of the head and not the front.  She does not have the eye, head or should pain.  I do not think they are as intense as a classic CH.  But I have search all over to try to find someone with similar symptoms.  Please reply and let me know what you think.  I am a concerned mother and I do not know what to do.  I am working with the Mayo Doctor now and they are convinced it is CH.  But they themselves has not heard of these symptoms.  Thanks. 

How can they diagnosed CH if she does not display symptoms of CH ?

Time to get a second opinion. Has she had an MRI ?

yes she has had a MRI and that came back normal.  They only thing that I can find that are similar to a CH is that she has them in clusters and they happen around the same time every night. 

Sad to say, I don't think an MRI will show the presence of clusters.

One thing about a cluster attack is that the idea of laying down or sleeping isn't an option. Pacing, crying and looking for a cool place to be is more like it. CH is this kind of horror.

It sounds like something else to me but maybe you'll find some help from others here.

Charlie.

thanks everyone.  I did get some really helpful articles from people.  I did fine that she most likely does have CH.  I found that in some cases when starting out young you don't always present with the typical symptoms and as you get older they tend to be more typical.  Also found that in some suffers they do not always have them in the front of the head.  In a way it is relieving and then again it is heart breaking knowing that my daughter is going to have to suffer with this.  I would still appreciate your comments. As I stated earlier she is just recently diagnosed and I am just learning.  Any information can help.  Thanks again. 

Charlie wrote on Apr 10^th, 2013 at 7:09pm:

[size=12]Sad to say, I don't think an MRI will show the presence of clusters.

I think that was suggested more along the lines of ruling out anything more nefarious, Charlie.

I started mine at about that age also, and mine were not typical CH attacks in the beginning.  I'm sorry, but it's been so many years I don't remember the details, and mine weren't even diagnosed until I was 23.  About all I can tell you is to read, read, and read some more on here.  Use the search box at the top left of the page to search the archives for different subjects to see what has been discussed in the past.  Ask questions!  Don't feel like they are dumb questions!  It is best if you read beforehand as you may find the answer on your own, but please don't hesitate to ask.  I guarantee you won't ask anything dumber than I did in the beginning.   :D 

Give your daughter a big hug for us, and let her know that there is hope!  One can live with CH, and have a happy, productive life.  It all comes down to attitude.  If she decides to be a victim and suffer, suffer she shall, but if she decides she has a syndrome that is inconvenient to life and decides to live life to the fullest in between attacks, she will have a good life.  I'm convinced attitude is 90% of the battle with CH.  In the 35+ yrs since diagnosis mine has not always been the best, and during those times life was miserable, but in the times I've had my attitude right, life has been great.  It didn't change the hits any.  It just changed how I handled them.

Jerry

Edit to add:  I think sometimes it is much harder on the family and the supporters of those of us who deal with this beast.  That being the case, be sure to get involved in the supporters corner and let other supporters teach you how to deal with this for yourself.  You have a heavy burden as a parent watching your daughter suffer, and if you aren't careful you will put a load of guilt on yourself that does not belong there.  Also, the feeling of incompetence in that you cannot take the pain away from her will weigh you down.  You cannot allow any of that to happen for your own sake as well as your daughter and the rest of your family.   [smiley=hug.gif] to you as well.

My CH started around that age too and did not display the "classic" symptoms until much later which is possibly what took so long to get a diagnosis.  In my teens, frequency, duration of attacks and cycles and severity was all very random.  It wasn't until my early 20's that a pattern really started with the cycles etc....

This probably doesn't help, but just goes to show that the beast will do what he wants to do, when he wants to and how he wants to.