Well, I',m 24 hrs's deamon free. Thats a first in a few weeks. That prednisone works. Just hope it lasts cause I only got twelve of em. Is that a normal dosage? ANyway...I called that Doctors office back this morn to see if they might reconsider the oxygen I asked for. What are they afraid of? I'm gonna go stand on the street cornor and try to sell it or something. :D geez

Well, if they give you a tank, I've  got $2.00 for a 5 minute whiff. What street corner?

Skull Buster wrote on Jun 2^nd, 2010 at 1:06pm:

Well, I',m 24 hrs's deamon free. Thats a first in a few weeks. That prednisone works. Just hope it lasts cause I only got twelve of em. Is that a normal dosage? ANyway...I called that Doctors office back this morn to see if they might reconsider the oxygen I asked for. What are they afraid of? I'm gonna go stand on the street cornor and try to sell it or something. :D geez

as jonny once said "you don't need no stinking doctor!!!"

any welding supplier will rent you a bottle and refill it for you. tractors supply is a good place to get o2. you cant get your regulator on ebay.

no reason to sit thro a  couple screamers while your doc says " uh.....ummm.....i uh......hmmmm......i dunno if you need o2. mmmmmmmmm lemme think about it."

i don't know why doctors want to jerk you off on the o2. it easier to just bypass the doc and get your own o2 and regulator.

eliminate the waiting and the middle man.  it's your head.

Let's hope you are talking to your doctor about more than Oxygen. Pred is good for a temporary CH blocker, but you should be ramping up with a preventative in the process. Suggest you read up in the medications and treatment section for more info.

scull buster another thing to consider is this.
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i'm not against to the doctor but CH is such a rare condition that you have to educate your doctor on what works and what doesn't. where all different. i live so far out of town that a trip to the doctor for this particular ailment is a 6 hour event. it just seems like a big pain in the ass. however you must be sure that have been diagnosed with CH. anything we may suggest won't work for migraines or sinus headaches.   

-johnny- wrote on Jun 2^nd, 2010 at 3:43pm:

scull buster another thing to consider is this. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE i'm not against to the doctor but CH is such a rare condition that you have to educate your doctor on what works and what doesn't. where all different. i live so far out of town that a trip to the doctor for this particular ailment is a 6 hour event. it just seems like a big pain in the ass. however you must be sure that have been diagnosed with CH. anything we may suggest won't work for migraines or sinus headaches.

Not true, my friend. The triptan class of drugs was developed specifically for migraines, and many migraine sufferers have benefited from the use of psychedelics.

And some migrainers have responded to Oxygen therapy (unfortunately, I'm not one of them).

I'm just going to reiterate what Christy has said.

The Pred.  is a stop-gap.  Your Dr. should have given you a script for some form of preventative to be takne along with it.  Verapamil, Lithium, Topomax...something to start to get inbto your system whil giving you some PF time.  Pred. alone isn't the answer because as soon as you stop they WILL come back.

Prednisone didn't help me or the Neurontin. So far, the Verapamil is working. Last time, neurologist said he'd give me oxygen if they started back up but called in verapamil. waiting for appt. in July, maybe he'll give it to me then. Are they stingy with it or what? Last time I went to see him, they had ended, the appt. took so long. I'm hoping they'll be gone by July. Hey, there's a cure for me-make appt. and they'll be gone before you get there! LOL

Your Neuro must not have the knowledge, experience, or confidence about O2 for CH. I suggest you print out the following article, to help educate the Dr.
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Also I would demand the O2 not ask for it. You obviously already know more about it than the Doc. If not you should learn all you can and relate that to your Doc.

Good luck,  Don

well, I finally got some o2.Like I said b-4. My father has been cronic with CH for about 30 years. His started in his 20's as did mine. He drove out on the 6/02 and brought me a couple of his tanks. ;) Says he doesn't use em much anymore. he's getting older, and his seem to be getting less severe, and he's hoping to go into permanent remission soon. (As older men do sometimes)  Today I did some horse trading and got  my own bottle w/ regulator ;) Got my eyes on a 25 LPM regulator on e-bay. And to the person that said the deamon might come back after the pred. wears off, It's possib;le, but maybe not cause I've already been in cycle for about 8 weeks, and thats about the longest mine last. :-?  this morn at 3:00 am was 64 hrs CH free. Dumbass me tested the waters at 11:00 pm last night with my worst trigger...........beer. Drank three, went to sleep, and BAM. 3o'clock it woke me. I ran to the living room, busted out the regular, blasted it wide open to 15, and sucked the bag empty with my mouth. as quick as it was full again, repeat. It didn't take long, before I was laying there in the bed with a shit eating grin :)  I LOVE O2 8-)

you totally got it dude.  8-) see your not helpless if your doctor doesnt give you need. CH is an interesting game of wits my friend. come hell or high water you gotta do something about the pain.

the 25 lpm reg is perfect.

sorry you didn't pass the beer test bro. the stress CH puts you under makes you crave a beer or 2 for some reason.
i'll drink a few tonite for ya bud ;)

yeah. When I'm not in a ch cycle, My brain works as normal as Homer Simpson's 8-) Actually lead a normal life. Drink beer without even thinking about it.  But yeah man, I'm on an o2 mission. I've been puttin the word out. Just a matter of time before I have me a nice set up. Between that, and the clusterbusters, a po-boy like me don't need no stinkin doctor.
Can I get a hell yeah!!!??

Skull Buster wrote on Jun 5^th, 2010 at 3:04am:

yeah. When I'm not in a ch cycle, My brain works as normal as Homer Simpson's 8-) Actually lead a normal life. Drink beer without even thinking about it.  But yeah man, I'm on an o2 mission. I've been puttin the word out. Just a matter of time before I have me a nice set up. Between that, and the clusterbusters, a po-boy like me don't need no stinkin doctor. Can I get a hell yeah!!!??

yeah yeah! thats how i did it