Sadly I've gone beyond that and tried to bite the hand that was handing me the 02. Lucky for me after 28 years of these things she still loves me!!! And the diagnosis is good news, now you know exactly how to attack it!

The prednisone will block the headaches for me but won't break the cycle. When I stop the pred, the headaches come back with a vengeance. Please consider having something ready for when you stop the prenisone. It seems the pred either breaks the cycle, or just lets all the CH build up behind it and when you stop the pred, the dam breaks!

I hope it's the cycle breaker for you. If not, get the 02. The critical points, start it at the first hint of an attack, using a NON RE BREATHER  mask, at a high flow rate, at least 15 LPM. Your lungs must get pure 02 and nothing else. I can abort in 6-8 minutes most times.

Wishing you all the best!!

Guiseppi

casey...............it is @ a time such as this you find out who your true friends are..........people have different reactions, for many different reasons.......being the "tell it like it is "person i am, if they "choose' not to be positive in my life, especially during a Ch cycle, i just move on, take it as another learning experience in life................i can honestly say my best support group has been this board................had i never found this site a few months ago, i do not know how i would have gotten through......keep the faith..........................
deb

Good morning, Casey.  On the positive side, receiving a diagnosis of CH means that at least you know what you're dealing with.  Better the devil you know than the devil you don't.  There are worse things than CH.  At least CH doesn't kill you outright.

Unfortunately, as you've discovered (and probably expected all the way along) there is no "magic pill" to make things better.  Only imperfect treatments that are hand-me-downs from other conditions.  Maybe that will not always be so...but so it goes. 

Sounds as if your doctor is a good one.  The prednisone taper should have an almost immediate effect.  Whether or not it will actually break your cycle is another question.  If it does not, it sounds to me as if he's open to the follow-up positions that have proven to be the more effective palliative treatments for CH.  Good on him, and good on you for persistence and grit.  Being a clusterhead ain't easy,  no matter how romantic it sounds.   

Your wife sounds like the very best kind of supporter.  The understanding and help of the people closest to us are what really matter. 

You're always going to run into those who are dismissive of something that's "just a headache".  They simply don't understand.  Some because they are ignorant, some because they are dense, some because they are self-absorbed--and the world is just a little stage where their own tiny performance is played out. 

Whatcha gonna do?  Sometimes it's worth educating them--sometimes it's just too tiresome. 

All the best to you, Casey...  Sounds as if you're on the right road.

George

Welcome home, Casey.   I'm sorry its CH that brings you here, but there isn't a better place on the globe for support, information and caring.

RE: the pred taper-sometimes it kills a cycle but not always.  Many of us have used the pred taper while our preventative kicked in-preventatives like verapamil or lithium.  Has your neuro talked about those?

O2 is a God-send for many and is a front line abortive. 

Best wished for PFDAN
kathy

well, do to all the great advice i have got here i do believe i have got a hold of my temper but as i am sure you all know with the pain and lack of sleep it can be hard. i printed up a few of the co-worker letters to keep with me (thanks kevmd) and i figure that if that wont do it they are not worth the effort.

i have a few questions about the prednisone. i looked up the side effects and i cant find it with them but have any of you had nose bleeds with it? i have been taking it for 4 days now and all it has done is mess up my cycle, it has not stopped them from happening just moved there timing and length around. is that normal? should i be more patient or do i need to call the doc so we can try something different? i am thinking of calling anyway just to try for the o2. the only reason he did not give it to me before was he was worried about the cost to me. my wife's keeps telling me over and over to be more patient but, that doesnt always work for me i am a results now kind of guy and as i already said with pain and lack of sleep this is not easy.

thanks
casey