Jackiemagic - I know this is coming in late here but I am a caretaker of a cluster head and you need to make sure this is what she has. I say this because if your neuro doesn't know about these headaches you will continue to take her to the er and spend an arm and a leg trying to get her relief. I don't want this to deter you but most of your cluster heads are men and it will take a long time to diagose in a woman. My cousin had terrible migraines until they removed her adnoids and knock on wood, she hasn't had one in two years now.

I see you haven't posted in a while, how has she been?

Hi Jackiemagic! I'm sorry this is a late post from your original. I'm new to the forum. The good thing I see is that she is able to kinda function with the headache! (Not that it's good at all that she's having them but at least it's a plus!) When I get them, I'm completely incapacitated. I even recently lost my job because of them. When looking up any info on them the best thing to remember is the typical...isn't typical. Only twice have I ever been woken up from them. Mine usually seem to be around 11 AM and 3 PM. Sometimes more. What I found is the BEST "remedy" is the very first day I get one, and they're definitely unmistakable, I call my doctor and he prescribes 20MG of Predinsone three times a day. I continue them until I've gone a couple of days without one at all. I know that a lot of doctors don't like giving that high of a dose of steroid for someone so young. I'm 26. But it really seems to shorten the length of the cycle and also the duration of each episode. I don't know exactly what she does when she gets one but what seems to kind of soothe mine or whatever you want to call it is going into my bathroom with the door closed and the lights off and I sit and rock back and forth. Sometimes if I can stand it I'll put on the sound of rain on a tin roof on my phone. I don't know what it is about it but it seems to sort of distract me or something. Something new I've been trying is water therapy. Basically when I get one I just continuously drink cool water. Unfortunately I can't say for sure that it helps but this cycle since I've tried it, it seems to lessen the duration. Again it might be the slight distraction from what is actually happening that helps. Oxygen seems to work. My mom got me not only an oxygen tank but also this thing called an oxygen booster that gives kind of a blast of oxygen to inhale. Seemed to help with the intensity but be sure if she gets an oxygen tank that dispenses through the nose to get her some Ayer! It's just a cream/gel to put in the nostril. Without it my nose became really raw and hurt! Other than that, and this is something to look really deep in to, there's an experimental surgery that I've been considering where part of the trigeminal nerve is actually removed. Honestly I don't know a whole awful lot about it because there's really not a lot of info out there. I just know I'm really looking into it because my dad suffered with them for 40 years and I truly don't know if I can deal with them that long. I can't imagine what my mom goes through knowing there's nothing she can do when I get them. She's a saint for sticking around and being there for me through all of it because I know that even though I'm going through the physical pain...the emotional pain she feels has to be just as bad if not worse. I know that it says no scripture so the only thing I'll say is this: God doesn't give us more than we can handle. I'm praying for you and your daughter. I wouldn't wish them on my worst enemy. Keep a headache diary. What time she gets them, the date, how long they last, what she does while she has them. Even the smallest detail may help in the long run. I hope maybe y'all can find some sort of a pattern so at least maybe you can somehow tell if a cycle might be coming on. Just don't give up! If one doctor says no or won't listen, go to another. And another. And another. Keep going until someone listens. And try the steroids for sure. They've seemed to work for me and they helped my dad too at least to shorten the cycle. As far as coping as a caregiver, and God bless you for what you're going through, my mom found a great site: http://www.clusterheadaches.com There's a lot of tips for not only the sufferer but also the caregiver and it gives support and a place to connect. Keep strong and don't give up the fight!