I am sadly one of those that has cluster headache/migraines as well. I'm currently having a headache that has lasted three weeks.
I am so glad to know there is somewhere to find support for this. Some people just do not understand unless you have it. :-/

We have a couple of your brothers/sisters in pain on this board who have the dual diagnosis of CH and Migrains. I thank my lucky stars I'm not one of them as either is a big enough millstone around a persons neck!

When you get a chance, give us a rundown of what you use for your CH. Maybe we can throw an idea or two your way. Do you have oxygen yet? A real life saver for a rapidly growing number of us.
Glad you found us! :)

Joe

What Joe said.  :)

I tried to explain these Cluster Headaches to friends and they all looked on my like I was not even on this planet...It's hard, there is a letter I believe I found it on this board, that explained it to where my friends could understand....instead of them saying oh booohooo she has a headache, they said HOLY CRAP....how can we help! 

Can someone point tidnee to the letter?? I will look for it too, when I found it was in the middle of a cycle so I am not completely sure where it saw it... :)  All I can say to you Tidnee, is the advice I received when I first joined here was absolutely life saving!  The information given to me from these kind people is priceless....and easy to understand.... so don't be afraid to ask, someone here can point you in the right direction....I can't be a lot of help, as I haven't been here for only a few weeks, but I come every day! Just to see the information again, so that it's firmly planted in my brain!   8-)   

Here ya go Erin:

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:)

Welcome from another clusterhead.

Coach Bill

Hey there, Tidnee, and welcome.  You are right-most people absolutely do not understand CHs. And sometimes we make matters worse when we are unable to articulate why we want them to understand. Do we want pity or sympathy? Yes and no. I don't mind a little pity and sympathy from time to time, but ultimately, no. What I want is support. Support from colleagues, bosses, family and friends. No more chicken soup remedies, PLEASE! So I've come up with a list of things I do want from those closest to me:

1.  Take a little time and read this website; I am neither crazy nor suffering from a hangnail.
2.  Assist me with abortives when the pain is too great for me to be able to think straight.
3.  Shield me from "unwanted" outside contacts who may not like my "dance with the beast."
4.  Remind and encourage me to continuously evaluate the preventatives I am taking, and to seek out other, better ways to deal with this.
5.  Talk to me; don't let me sink into a black hole pity party which so easily comes.

Curious if others have something similar to this list?  To be quite honest, our loved ones really do want to help. Being helpful, however, can be very frustrating if it isn't immediately helpful.

Had never done one but damn....I like that. [smiley=thumbup.gif]

Joe