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Topic: Oxygen?? (Read 1753 times) |
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Lissa
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I have an appointment with my doctor tomorrow to get some oxygen but the nurse told me that oxygen is only prescribed for certain diagnoses and that clusters wasn't one of them. Is this true? How do I get oxygen then? 
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Episodic cluster survivor since 1995 at age 16.
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Ghost
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Re: Oxygen??
« Reply #1 on: Jan 5th, 2006, 10:38am » |
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The drug company doesnt care what it is for normally but like you I had that problem and a friend of mine gave me a welding tank and gets it refilled for me at cost.
Its the doc wont write it is the problem. there is some links here with info someone help her here please that might help convince doc it didnt for me but you may have better luck.
Sorry not much help but I know someone here will be more helpful.
Mike
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Illigitimus Non Tatum Carborundum
If all men are endowed by their creator, why was mine so short sighted?
***WARNING*** Oxygen will rust your pipes!
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Bob_Johnson
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Re: Oxygen??
« Reply #2 on: Jan 5th, 2006, 10:47am » |
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The nurse is wrong. Print out this article and take to the doc. It's written by one of the best headache docs in the U.S.
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. (2002)
http://www.brightok.net/~mnjday/chtherapy.pdf
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Bob Johnson
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marlinsfan
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Re: Oxygen??
« Reply #3 on: Jan 5th, 2006, 10:57am » |
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Dumb nurse! If your doc is also dumb, get another one.
Bring the document in Bob's link.
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seasonalboomer
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Re: Oxygen??
« Reply #4 on: Jan 5th, 2006, 11:12am » |
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on Jan 5th, 2006, 10:57am, marlinsfan wrote:Dumb nurse! If your doc is also dumb, get another one.
Bring the document in Bob's link. |
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Ditto this!
Take the link in. And then, if the doc is stubborn or stupid enough to not prescribe, with the right flow rates specified in the article with a non-rebreather mask, then pitch a fit. I did with my doc when he told me he felt it was not the right answer for me and he relented (finally). Put your game face on before you go in to the appointment and tell yourself, "I'm not going to leave the doctor's office without the prescription for O2" and repeat. He'll say that those flow rates are not appropriate, show him the article. He'll say a non-rebreather is not a good idea, show him the article. He'll give all kinds of deflection if he's an idiot. Show him the article and relent.
you go!!!!!! Get the O2, it rules! For me it's like damn magic.
Scott
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Lissa
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Re: Oxygen??
« Reply #5 on: Jan 5th, 2006, 11:14am » |
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I'll print off that link and give it to her tomorrow when I go in. Thank you everybody.
I got hit very hard last night and this morning. I almost threw up. 
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Episodic cluster survivor since 1995 at age 16.
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E-Double
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Re: Oxygen??
« Reply #6 on: Jan 5th, 2006, 12:04pm » |
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on Jan 5th, 2006, 10:28am, Lissa wrote:| I have an appointment with my doctor tomorrow to get some oxygen but the nurse told me that oxygen is only prescribed for certain diagnoses and that clusters wasn't one of them. Is this true? How do I get oxygen then? |
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NO!!!!!!!!!!
Present this to them from Dr. Rozen @ MHNI
http://www.chhelp.org/mhni.html
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I can't believe that I have to bang my
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Lissa
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Re: Oxygen??
« Reply #7 on: Jan 5th, 2006, 12:08pm » |
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Thank you. I'll print both articles off for her.
Does anyone experience pain in the teeth during an attack? My teeth hurt so bad this morning.
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Ghost
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Re: Oxygen??
« Reply #8 on: Jan 5th, 2006, 12:15pm » |
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Oh yes because of that I have had several pulled even 6 done myself, the CH hurt worse. Getting sinuses scrapped not good either unless actually clogged. been there too. No matter what you do to get the beast out it always seem to get back and more pi55ed than ever. Good Luck and prayn for positive results with doc.
Mike
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Illigitimus Non Tatum Carborundum
If all men are endowed by their creator, why was mine so short sighted?
***WARNING*** Oxygen will rust your pipes!
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Lissa
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Re: Oxygen??
« Reply #9 on: Jan 5th, 2006, 12:23pm » |
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You pulled out your own teeth!?! 
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Ghost
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Re: Oxygen??
« Reply #10 on: Jan 5th, 2006, 12:38pm » |
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Yep anything to make the pain stop. was before I knew it was CH though.
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Illigitimus Non Tatum Carborundum
If all men are endowed by their creator, why was mine so short sighted?
***WARNING*** Oxygen will rust your pipes!
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Lissa
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Re: Oxygen??
« Reply #11 on: Jan 5th, 2006, 12:57pm » |
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Holy Jesus.
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Lissa
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Re: Oxygen??
« Reply #12 on: Jan 6th, 2006, 9:48am » |
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I got an oxygen tank!!  Does insurance usually cover the rental?
I also started Kudzu this morning.
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seasonalboomer
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Re: Oxygen??
« Reply #13 on: Jan 6th, 2006, 9:55am » |
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on Jan 6th, 2006, 9:48am, Lissa wrote:I got an oxygen tank!! Does insurance usually cover the rental?
I also started Kudzu this morning. |
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Congratulations! Way to go girl!
Take the time to keep a headache diary on the Kudzu so you can contribute whatever results you get to the thread. You will hopefully, as many have, see some effects from the Kudzu within the first day or two. It might not knock'm right out but you will notice something different going on.
Good luck and keep on keepin on.
Scott
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marlinsfan
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Re: Oxygen??
« Reply #14 on: Jan 6th, 2006, 9:57am » |
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Way to go, Lissa! I have AETNA insurance, and they pay the monthly rental for my 3 E-tanks. I only pay $5 copay anytime I need refills.
DId you get the high-flow regulator? And the non-rebreather mask?
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Lissa
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Re: Oxygen??
« Reply #15 on: Jan 6th, 2006, 9:57am » |
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I'm crossing my fingers. I also hope the insurance covers the oxygen.
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vig
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Re: Oxygen??
« Reply #16 on: Jan 6th, 2006, 10:09am » |
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good luck Lissa
I hope you find some relief
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Lissa
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Re: Oxygen??
« Reply #17 on: Jan 7th, 2006, 1:00pm » |
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Okay. I have another question. I have the tanks...two of them. I have one at work at one at home. Does everybody with oxygen carry the tank around every where they go? It's HUGE. I think I'm just going to carry around the regulator from place to place, but what about when I go far away?
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Guiseppi
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Re: Oxygen??
« Reply #18 on: Jan 7th, 2006, 6:45pm » |
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I keep an e tank at work and an e tank at home, then I have the teeny one I keep in my car. The regulator stays with me! I'm a Kaiser patient so they don't pay any of it. After 25 years they still fight me on the oxygen! I hope it works as well for you as it has for me. Over half of the time it stops the beast in it's tracks. The rest of em it ratchets down to a level you don't cry at. (You do get funny looks from people hauling the tanks around!!!!) Good luck, welcome to the roller coaster!
Guiseppi
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Wingcat
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Re: Oxygen??
« Reply #19 on: Jan 7th, 2006, 11:47pm » |
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Once you find a good Dr. to give you an O2 prescription it seems to be good for life. My O2 supplier, Lincare has it on file and hasn't said anything about seeing it again in over 8 yrs.
I had clusters for many years that the docs kept treating with migrain drugs, lotta help they were (not)
When I finally got the correct diagnoses the doc was addiment that prednizone was the preferred treatment.
It worked, but I finally got a new doc to prescribe O2.
It's been a full blown miracle for me. Pun intended.
Dave
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Lissa
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Re: Oxygen??
« Reply #20 on: Jan 9th, 2006, 8:34am » |
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I'd like to get a smaller tank to carry along with me. The only problem is I smoke. Oh well. I have one at home and one at work, but hopefully I won't have to use them at all.
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marlinsfan
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Re: Oxygen??
« Reply #21 on: Jan 9th, 2006, 10:35am » |
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Lissa, I travel a lot for work. Both domestic and international. When I travel domestic, I find ahead of time a medical supply place that has oxygen. I call them in advance and make arrangments to have O2 delivered to my hotel. Most of the times they bill my insurance directly. Only once did I have to pay out of pocket, but it was only $30. International is more complicated.
My O2 supplier honors my prescription only for 1 yr, so I need a new script every May.
I'm lucky in that i mostly get night-time hits, so I don't need to carry my tank around. I have E-tanks, which are pretty small, so I could carry them with me if I took a road-trip somewhere.
My office does not allow me to bring O2, but the infirmary does have O2 and they do have a copy of my script, so they give it to me when I need it.
PF wishes.
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Lissa
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Re: Oxygen??
« Reply #22 on: Jan 9th, 2006, 10:50am » |
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Your office won't let you have oxygen?  That's ridiculous.
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John_Townsend
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Re: Oxygen??
« Reply #23 on: Jan 9th, 2006, 10:54am » |
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Lisa,
I'm new to this board although had CH for 30 years.
Just started on Oxygen 3 days ago and I tell ya mate its great best thing ever.
I have 1 at home and I use 1 thats at work but I use my own non-rebreathing at work as they dont have 1 so I got to carry that with me.
CYA and Good Luck
John
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| « Last Edit: Jan 9th, 2006, 10:58am by John_Townsend » |
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marlinsfan
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Re: Oxygen??
« Reply #24 on: Jan 9th, 2006, 2:02pm » |
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on Jan 9th, 2006, 10:50am, Lissa wrote:| Your office won't let you have oxygen? That's ridiculous. |
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It's not, really. It is a highly flammable substance, and I work in a building that houses 5000 employees and is open 24/7. It is pretty unsafe to have these things around, plus the infirmary has Oxygen for employees to use.
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