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talitha
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O2 Procurement
« on: Dec 26th, 2002, 5:48pm » |
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Doncha love the military sound of that subject line?
Don't know if O2 will help until I try it during an attack-attacks always come at night-doctor won't just let me take some O2 home to try-have to go to the ER-this really sucks y'all. being blasted every night now for 95 days 4 rounds of prednisone- all the cafergot the law allows and finally drove myself to the ER (when the beast backed down to a 7) told them i had a cluster headache and my doctor insisted that i come to the er to try O2 and since the cluster only last @1 hour could we go ahead and hook me up. FOUR Friggin HOURS LATER (and no other emergencies that I could see)-I see the er doctor who asks how long I have had MIGRAINES (i'm sorry for shouting but this is bs)\
i asked him how the hell he thought i could try O2 for cluster headaches if I couldn't get seen in less than FOUR HOURS he gave me a script for migranol offered me some opiates.
Ok y'all who have O2, did they trigger a headaches in order to see if the O2 works, do you have headaches at a reasonable time when places like doctors and neurologists offices are open...how exactly, did you go about finding out if O2 works.
Can i just get a diving tank????
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eyes_afire
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Re: O2 Procurement
« Reply #1 on: Dec 26th, 2002, 6:07pm » |
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Hi Talitha. It seems to me that you are missing an important ingredient in your treatment of CH: a neurologist who understands cluster headaches. A neurologist who claims to treat and understand cluster headaches but yet refuses to write you a prescription for O2 is deceiving you. All you need in order to get O2 is simply a written prescription from your doc, then you take the prescription to a medical supply company and get it filled. Make sure you get a non-rebreather mask and proper regulator setup. Then you go home and wait for the O2 truck to deliver (O2 trucks are beautiful  ). Let me make sure I understand what you're saying: The doc would rather you go to the ER everytime for O2 rather than write a prescription? ??? ??? ??? ??? ???
Is he/she a neurologist?
Get a new doctor.
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Not4Hire
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Re: O2 Procurement
« Reply #2 on: Dec 26th, 2002, 6:34pm » |
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Quote: Ok y'all who have O2, did they trigger a headaches in order to see if the O2 works, do you have headaches at a reasonable time when places like doctors and neurologists offices are open...how exactly, did you go about finding out if O2 works.
Can i just get a diving tank? |
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...altho some here may have gone this route (Dr. triggered CH)... I doubt that many have.... a neuro who *KNOWS* will prescribe it without a hassle...... I found out about 02 at the ER....God Bless that doctor!....
a diving tank WILL NOT WORK!!!!!! SCUBA tanks are fulla compressed air like "every breath you take"... got nitrogen mixed in..... Get a NEW doc...like Eyes sez....... one who will give you a 'script for pure o2......use it correctly and I betcha feel better....Good Luck!
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Mantra: This will NOT kill me...This will not KILL me... This will not kill ME...
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Mr. Happy
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Re: O2 Procurement
« Reply #3 on: Dec 26th, 2002, 11:59pm » |
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Talitha,
What those guys said.
O2 is a fast acting, non-invasive, relatively inexpensive, minimal side effect repast. Get some now. It MUST be used at proper levels, proper masks, properly. You don't need a neurologist for O2. Any yutz that has the medical ability to legally sign a prescription pad will do. Tell `em what you need. The only way to find out if O2 works for you is to get a big old tankful delivered to your house, hook up the old snort mask, and suck ho. If it doesn't work, you can always come back and call us a dickweeds.........but get a number.
Make sure you try it ........it's just possible you might _REALLY_ like it. Neato.
Snortin Finortin,
RJ
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talitha
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Re: O2 Procurement
« Reply #4 on: Dec 27th, 2002, 9:22am » |
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Thanks you guys. Health care delivery horror story #3,987,024...headaches service connected (started when I was in Air Force), must use VA-or pay big bucks that I don't have, VA appointment with "doctor" jan 8-made it on 1 nov, then referral to neuro...probably 2 months down the road..
i'm feeling pretty hopeless right now-pain and sleep deprivation are getting to me
would someone please stop this ride, I'm ready to get off now.
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catlind
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Re: O2 Procurement
« Reply #5 on: Dec 27th, 2002, 4:34pm » |
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Talitha,
If you can, find an O2 or welding supply shop, and rent a tank of O2. It's the exact same stuff as med O2. In fact mine (prescribed by a doctor and delivered from a home care company) comes in a welding tank.
Jonny would be able to tel you more about what to get and how much it might cost. Key note though:
you MUST use a non rebreather mask and have a min. of 8-12lpm of O2 available.
Cat
Funny how it's harder to get O2 than narcotics 
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PETEH
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Re: O2 Procurement
« Reply #6 on: Dec 28th, 2002, 3:33pm » |
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GO TO SEARCH ON CH WEB SITE. TYPE IN "AN OXYGEN PRIMER". THIS WILL BRING UP SOME GOOD INFO ON OXYGEN AND HOW TO USE IT.
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talitha
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Re: O2 Procurement
« Reply #7 on: Dec 30th, 2002, 1:41pm » |
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Thanks to all for the answers. Who woulda thunk that I'd be trying to find O2? Mushrooms would be easier to get!
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justin
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Re: O2 Procurement
« Reply #8 on: Jan 2nd, 2003, 3:45pm » |
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yeah find a new doc. O2 is a recognized treatment for clusters. i got a script and called my insurance company to find a list of places they would cover. then i called the place and faxed he script. no problem. they give me 4 N tanks at a time and a couple non-rebreather masks. it doesn't work for the tens. i use imitrex for that. but anything below that that i can get to early enough. i will take O2 instead. so much better than imitrex for you i guess. it's really good. get a new doc!
jd
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if any clusterheads in NYC want to get together shoot me an email justinott@mac.com
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Hank
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I'm new to the site and noticed your story of VA woes. I work for the VA and know that the system sometimes needs to be kick started.
The key is that you are SC for this condition. That gives you priority over every NSC veteran who walks through the door looking for a neuro eval (except for life and death emergencies). If your January 8th appointment did not give you satisfaction, see the Patient Rep. If they can't get you into Neuro sooner, demand that they Fee Base you to the community. If that doesn't get you what you need, have your congressional staffer call the Director's office to help work it out. The VA is a good system that has experienced a massive influx of new veterans the past few years without a consequent increase in funding. We're trying, but we don't always get it right the first time. Good luck.
Hope this works out.
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Ted
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Re: O2 Procurement
« Reply #10 on: Feb 5th, 2003, 11:20am » |
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Talitha, since you have your dr. appt soon and a possible neuro appt way down the road, I'd suggest searching here, OUCH and Medscape's websites to find medical articles showing the effectiveness of O2 AND how it's the first line of defense against attacks. Or, try this link. I initially wrote it to help others get through the insurance co.s bullshit. BUt it'll also work to educate ignorant doctors.
http://www.clusterheadaches.com/wwwboard/messages/81233.html
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Roxy
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Re: O2 Procurement
« Reply #11 on: Feb 5th, 2003, 12:24pm » |
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Go get the welding 02....as quick as you can. Works just the same. I couldn't even get a mask in this town, but Woobie and Cerebus were kind enough to send one to me. Before that, I was using a hazardous chemical mask that my husband had rigged up.
You can get the small welding tanks to travel with too.
Cat...you're right. They'll give you all kinds of narcotics and opiates...but, 02.....no way. 
Tracey
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kissmyglass
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Re: O2 Procurement
« Reply #12 on: Feb 8th, 2003, 2:01am » |
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Ok, I'm in the same boat....Doc yesterday wouldn't give me O2 until she is sure it works. My attacks are at night & the office is open in the daytime. She did give me imitrex pills...30 pills (no insurance)...$619.00!!! Neuro appt. isn't until end of March so I need some O2 now! Can I just go into a welding shop & order up a can? What about a "regulator" where does one get one of those? I can get non rebreather masks on ebay ...or can you just walk int a med. supply store & buy some? Getting desperate. Kip 8-10s every night....Thanks for any help...
Kev C
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Roxy
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Re: O2 Procurement
« Reply #13 on: Feb 8th, 2003, 6:07pm » |
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Talitha,
Just tell them you're a welder. We live on a ranch, so we already had the tanks. You can buy a regulator right there in the welding store, just make sure it's a good brass one. I started out at 5psi, and adjusted the flow until my bag on the mask stayed good and full, so I have no idea what that comes out to from a medical point of view....I just know it works for me. The only thing I don't have is a bubbler....but, I'm working on it!
PFDAN,
Tracey 
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Only two things are infinite, the universe and human stupidity, and I'm not sure about the former. (Einstein)
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dizzyd
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Re: O2 Procurement
« Reply #14 on: Feb 9th, 2003, 7:03pm » |
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Hi,
I have just read all the postings in this thread and I am absolutely amazed that in this day and age doctors are so ignorant to cluster headaches that they do not know that oxygen is the first line of defense for aborting clusters.
I am 22 veteran of this crap and 20 years ago I was prescribed oxygen. Believe me it was difficult to get the insurance company to pay back then but I worked out a payment plan with an oxygen delivery company. I COULD NOT LIVE WITHOUT OXYGEN.............
Nothing else works for me and sometimes when the clusters are a 10 the oxygen doesn't work but that is rare. My doc will NOT PRESCRIBE for me any other abortive meds as I am taking Sansert and she says the combo is too dangerous, true or not I do not know as I have not been able to get any feedback from Sansert users.
I know that around here (massachusetts) you can get oxygen from the local firestations................it might help to check with them, maybe you could get a small tank until you can get a script.
I could not get through a day without oxygen so I really really feel for you. I am having a real bad spell myself so I understand how bad it can get ....................my battle is finding Sansert, which US stopped manufacturing................
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talitha
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Re: O2 Procurement
« Reply #15 on: Feb 11th, 2003, 9:03pm » |
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thanks for all of your input. did finally get O2-small tanks delivered to my house. unfortunately the doctor didn't specify a non-rebreather mask so i got a nasal canula. still seems to work okay-also started on covera hcl (newer fancier verapamil (the little puple pill with two holes in it ask your doctor for some
am starting to feel like a walking advertisement for the pharmaceutical companies 
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AKH
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i've never tried oxygen before, because i've only just recently heard that it actually works. But we've got an oxy-acetylene welding kit out in the shed. I might try hooking up a mask to the O2 and see how that goes. Cheaper than imitrex.
just go to a welding/large hardware store and ask for an oxygen tank for oxy-acetylene welding.
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neilr
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Re: O2 Procurement
« Reply #17 on: Feb 12th, 2003, 11:49am » |
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Guys, I just got my doc (finally) to prescribe me O2, never tried it before (had CH for 15yrs) so i'm hoping it does the job as im i the middle of a particularly bad cluster (started mid Dec).
One thing though, what is a non rebreather mask? How do i tell?
Thanks!
Neil
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cbolony
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Re: O2 Procurement
« Reply #18 on: Feb 12th, 2003, 3:54pm » |
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Here's a pic of the mask:
 [/quote]
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