ok so i don't know if i was the only one that went to the Nero and hoped to here, ch no you have [blank]and here is a magic pill that will make it all better. well it didn't happen, it is official i have it- the good news is my Nero seemed to know his stuff. he did not give me o2 but, he did give me predisone which he said helped most of ch suffers that he treats to break the cycle. his next step is o2 if that doesn't work. the funny thing is my wife (very supportive wife) asked more questions than i did and ask for the 02 before i did i.

just wanted to thank everyone who has worked on this site and all of you who were answering my questions. your help and support has meant a lot to me

just a quick side question am i the only one how has lost there temper to people who don't understand and act like you are just a wuss


thank you
casey

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,

I'm sorry that's officially ch, but now when you know what you're dealing with, you can get the ready to fight it complitely.

I'm glad that your wife is your supporter. Supporters are important part of the battle.

And yes, I've lost my temper in the past when I've met people who just don't get ch or call it "just a headache". ::) That includes my mother and aunt. These days I resist that temptation and concentrade on getting rid of the beast. ;)

PF wishes,
Sanna

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

Hi Casey,

I'm glad you have a diagnosis but I'm sorry it is CH.  Wouldn't we all just love to be handed a magic pill to make it all go away  ::)

Listen to Guiseppi!  If you don't have your abortives lined up when you come off the pred, it may get very interesting.  If it were me I'd be back on the phone insisting on O2 + Imitrex injections as backup in case the Pred doesn't break the cycle.

Good to hear you have a solid supporter there.  Give her a hug for me will ya?

It is natural to get angry with people that don't understand.  But think about it.  Before you knew what CH was, could you have understood it?  Just move on from those that don't or can't help.  It's not worth your energy.

-Dennis-

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  

Wow Casey... sorry to hear that you've been diagnosed with CH. You're obviously already aware of exactly what that means. Although during an attack it's very difficult to think of any pleasant thoughts.. Please keep in mind that you certainly are not alone. We know what you're going through and many here will offer you friendship, and sound advice.

You are extremely fortunate to have a good (sainted) supporter, that in itself is some of the BEST medicine... too often we get meds thrown at us while our hearts are neglected. So give your wife my thanks for helping to make this world a better place.

You're also in a terrific spot having a neurologist who is no stranger to CH. I pray that as your relationship with him continues... the two of you will find the combination of therapies that work for you.

Now that you are here in your new home and among friends and family... read as much as you can and also visit the OUCH site for great information... you'll find a link to the left.

Oh... I know exactly what you mean about those who regard your pain as an over-dramatization or something insignificant. If you have the patience, time and sense of humor you may use them as an opportunity to educate. If you are not so inclined... try not to waste any energy fretting about them... you've got far better things to do... empower yourself with knowledge and battle the beast with dignity.

I'm Glad that you are now a member of our family and look forward to getting to know you...

with warm regards,
Tony

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

Fortunatley most of the people in my life, family, friends, an co-workers have all seen me in the middle of an attack so I have not had anyone question the intensity of this demon.  One person was jokingly busting my stones.  So I made him read the link with the letter for co-workers and colleagues posted on this site.  

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

Hi Casey

Welcome!  Your question about experiences with Preds-  i've never had nosebleeds from preds or any other meds for that matter so i can't help there but ....  my first two cycles preds stopped my cycles cold.  The last cycle i had ( just ended early june)  i did two pred tapers and only got 2 days of pain free time - when i went on a preventative ( verapamil for me)  that's when my HA stopped this cycle.  

Guiseppe and others posted some great advice earlier about looking into other meds - preventatives and abortives that you may want to talk to your doctor about ( lithium, verap etc ) and O2.  

So if Preds continue to fail you sounds like a great time to head to the doc and see what he can do to help you more!   Good luck to you and hoping you have some pain free time coming -

kelly