I hobbled in to the er yesterday morning @ 6 am, after a sleepless nite. 2 hits/ but pf for the moment. In my pocket was the printed copy of all the CH meds by category.
"Are you pretty familiar w Ch" I asked? "No"... he said, "there not life threatening or really dangerous! So why would I see CH patients in an ER?" He said dismissively... I'm  a salesman and NEVER at a loss for words, so I didn't say..."Pretty dismissive comment Doc, especially since you've just admitted not knowing about Ch?" But for once in my life I thought before speaking, after all, I would probably be having a hit shortly... I needed him...
"Happy woman" had talked to me about Cafergote, and not being insured now, the cheap price sounded good.
He pulled out a little yellow book and looked it up?
"Yeah, makes sense I guess" (he said) and wrote rx..
I really had to get off the pred taper (I wasn't tapering but taking them until no more hits, and am beginning to look like ... was going to say Jerry Lewis, but not very nice?!)Also sleeping only one out of 3 or 4 nites!!! The pred abuse had me dealing with only 1 or 2 or 0 hits per day and although completely nuts, able to make it  work!!.
So... I'm doing very small pred mgs now (as prescribed and really tapering)
LAST NITE,   0 pred/ 2, 3mg melatonin/ and 1 caffergote, taken as the first shadow arrived,
RESULTS!!!
GREAT NITES SLEEP!!!! NO HITS!!!!
NOW,   I'm home, no need for a caffergote so far!! I'm feeling much more hopeful, and VERY GRATEFUL, to all of you!!  I am someone who has been spared hours of CH torture, My new management position  is safe and secure because I didn't have to call in sick day after day!!
This site has saved me again, in such very real ways!!
I love you all God bless you!!.

Congrats on the recent success there saxman!

Glad you're off the prednisone. You can take it from me (and a few others I've seen pipe in around here) that sustained higher doses of pred are very dangerous. Its a major risk that carries a good chance of screwing up your health in various ways permanently, and we tend to end up regretting we ever did that.  :o

Yeah, I hear all of you re the nastiness of prednisone. Personally I have dealt with 3 cycles prior to this one where Pred was a big part of helping me get through. I guess I've been fortunate that I haven't noticed any too serious side effects. I'm pretty sure that the ezcema (sp?) that followed the last episode came as a result and that sucks. Every year/cycle I seem to require more and more and this time I was definately feeling that I was going in the wrong direction.
You know it's funny, I guess really lucky for me... It seems that every new medication I try, works!! At least at first. It is so nice to be able to treat these bastards at all, to gain some control. I suffered for years in the 80s with Drs prescribing pain pills, which of course did nothing and I was left just in terrible pain, missing work etc.
Again, what a Godsend to have this site for not only reccomendations, but actual first hand experience and results.

Quote:

so I didn't say..."Pretty dismissive comment Doc, especially since you've just admitted not knowing about Ch?"  But for once in my life I thought before speaking, after all, ... I needed him

Reminds me of a first meeting with a urologist.  He went over the forms I filled out about other scripts being taken and ailments.  I checked off headaches, denoted clusters, and listed verapamil and oxygen, maybe trex too at the time. 

Looking it over he read aloud, "Cluster headaches".  I nodded.  He paused slightly and then jovially exclaimed with a chuckle, "Migraines, clusters, what's the difference, right?

An immediate urging reply was kept disciplined to thought instead of pointing to his diploma and remarking, that's why it says urologist M.D. and not a neurologist, so casually just drew out an interjecting and halting, "Wellllll...". Not a concern needing explanation with him.  While having a disturbing tendency, we moved quickly on to this different visiting purpose.  As you mentioned, I needed him.  ;)




Quote:

LAST NITE,   0 pred/ 2, 3mg melatonin/ and 1 caffergote, taken as the first shadow arrived, RESULTS!!! GREAT NITES SLEEP!!!! I'm feeling much more hopeful

And also hopeful.     :)

Cafergot has been a mainstay for me for many years. I take one when I start the 02, 02 beats it down, the cafergot will buy me up to 12 hours pain free time. I had posted this and several people suggested I try the same thing only chugging a redbull when I start the oxygen. I've done the 2x this cycle and so far it's worked as well as the cafergot.

I'm not throwing the cafregot out yet...but it'd be nice not to have the cafergot jitters and metal mouth taste anymore! I was actually somewhat suprised it worked as I had tried chugging red bulls in the past as an abortive and it didn't work for me.

Any luck on the 02??? Still second to none for me!

joe

re:02  Waiting for payday the 10th to buy the mouthpiece deal, then will go get the industrial stuff I guess.
I'm also looking forward to no meds or few... I'm really excited about getting better and better with dealing with my yearly or sometimes twice yearly 6-8 week cycles. learning more and more, (all from you guys). 
For the first time ever, after years and years, I'm not feeling so cursed.
Side note: I just read Svvenns (sp?) post re his opiate addiction. Wow!! What a privilege to be admitted membership in this group of heroes. I want to be a part of this,
humbly

Joe, what do you mean 2x this cycle?

Sorry...shorthand!!! With 2 of my attacks this cycle, instead of taking the cafergot when I start an attck and start the oxygen, I chugged a Red Bull, then started the oxygen. 02 beat it down, red bull kept it from returning. I tend to get re attacks within 20 minutes of shutting off the 02 if I don't back it up with anything. Several on the board had suggested I try using the red bull instead of the cafergot.

Joe

Guiseppi wrote on Dec 29^th, 2009 at 11:43am:

....... I chugged a Red Bull, then started the oxygen. 02 beat it down, red bull kept it from returning. ................... Joe

My wife brought home some 500mg Taurine tabs from GNC - 50 for about $5.00. I've chewing chewing up three of them and chasing them with a cup of strong coffee - seems to work about as good as Red Bull did for me.

Marc

I'll have to try that...I'd never bought Red Bull and had sticker shock!!! They certainly don't give it away!

Joe