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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Oxygen??
        
(Message started by: Lissa on Jan 5^th, 2006, 10:28am)

Title: Oxygen??
Post by Lissa on Jan 5^th, 2006, 10:28am

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? :-/

Title: Re: Oxygen??
Post by Ghost on Jan 5^th, 2006, 10:38am

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

Title: Re: Oxygen??
Post by Bob_Johnson on Jan 5^th, 2006, 10:47am

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

Title: Re: Oxygen??
Post by marlinsfan on Jan 5^th, 2006, 10:57am

Dumb nurse! If your doc is also dumb, get another one.

Bring the document in Bob's link.

Title: Re: Oxygen??
Post by seasonalboomer on Jan 5^th, 2006, 11:12am

on 01/05/06 at 10:57:59, marlinsfan wrote:

Dumb nurse! If your doc is also dumb, get another one.

Bring the document in Bob's link.

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

Title: Re: Oxygen??
Post by Lissa on Jan 5^th, 2006, 11:14am

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. :'(

Title: Re: Oxygen??
Post by E-Double on Jan 5^th, 2006, 12:04pm

on 01/05/06 at 10:28:42, Lissa wrote:

NO!!!!!!!!!!

Present this to them from Dr. Rozen @ MHNI

http://www.chhelp.org/mhni.html

Title: Re: Oxygen??
Post by Lissa on Jan 5^th, 2006, 12:08pm

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.

Title: Re: Oxygen??
Post by Ghost on Jan 5^th, 2006, 12:15pm

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

Title: Re: Oxygen??
Post by Lissa on Jan 5^th, 2006, 12:23pm

You pulled out your own teeth!?! :o

Title: Re: Oxygen??
Post by Ghost on Jan 5^th, 2006, 12:38pm

Yep anything to make the pain stop. was before I knew it was CH though.

Title: Re: Oxygen??
Post by Lissa on Jan 5^th, 2006, 12:57pm

Holy Jesus. :o

Title: Re: Oxygen??
Post by Lissa on Jan 6^th, 2006, 9:48am

I got an oxygen tank!! ;;D Does insurance usually cover the rental?

I also started Kudzu this morning.

Title: Re: Oxygen??
Post by seasonalboomer on Jan 6^th, 2006, 9:55am

on 01/06/06 at 09:48:23, Lissa wrote:

I got an oxygen tank!! ;;D Does insurance usually cover the rental?

I also started Kudzu this morning.

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

Title: Re: Oxygen??
Post by marlinsfan on Jan 6^th, 2006, 9:57am

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?

Title: Re: Oxygen??
Post by Lissa on Jan 6^th, 2006, 9:57am

I'm crossing my fingers. I also hope the insurance covers the oxygen. :-/

Title: Re: Oxygen??
Post by vig on Jan 6^th, 2006, 10:09am

good luck Lissa
I hope you find some relief

Title: Re: Oxygen??
Post by Lissa on Jan 7^th, 2006, 1:00pm

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?

Title: Re: Oxygen??
Post by Guiseppi on Jan 7^th, 2006, 6:45pm

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

Title: Re: Oxygen??
Post by Wingcat on Jan 7^th, 2006, 11:47pm

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

Title: Re: Oxygen??
Post by Lissa on Jan 9^th, 2006, 8:34am

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.

Title: Re: Oxygen??
Post by marlinsfan on Jan 9^th, 2006, 10:35am

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.

Title: Re: Oxygen??
Post by Lissa on Jan 9^th, 2006, 10:50am

Your office won't let you have oxygen? [smiley=huh.gif] That's ridiculous.

Title: Re: Oxygen??
Post by John_Townsend on Jan 9^th, 2006, 10:54am

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

Title: Re: Oxygen??
Post by marlinsfan on Jan 9^th, 2006, 2:02pm

on 01/09/06 at 10:50:45, Lissa wrote:

Your office won't let you have oxygen? [smiley=huh.gif] That's ridiculous.

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.

Title: Re: Oxygen??
Post by Lissa on Jan 9^th, 2006, 2:05pm

I have my tank under my desk. My employers haven't said anything about it.

Title: Re: Oxygen??
Post by marlinsfan on Jan 9^th, 2006, 2:31pm

I go through 2 security checkpoints with badge swipe access before I get to my area. The 2nd one does random searches of bags, etc. as people come in. I would never be able to sneak one in :-/

Title: Re: Oxygen??
Post by Ghost on Jan 9^th, 2006, 2:44pm

I had same trouble with bringing to work and was told I could if I could provide a MSD sheet/ and safety regulations for it. so needless to say it still aint here.

Title: Re: Oxygen??
Post by Guiseppi on Jan 9^th, 2006, 4:38pm

I've always gone by the creed it's easier to beg forgiveness then to ask permission! I smuggle my tanks into work in a long gym bag! I'm in California and we have to re-up our RX every 12 months. So if you're absent minded like me, and a Kaiser patient like me, you can find yourself high and dry after a 2 year break! Someone here tipped me off about welding oxygen being okay in a pinch! My neighbors oxy acetelyne rig has bailed me out more then once!

Guiseppi

Title: Re: Oxygen??
Post by Roxy on Jan 9^th, 2006, 4:53pm

on 01/09/06 at 16:38:26, Guiseppi wrote:

Someone here tipped me off about welding oxygen being okay in a pinch!

I have to beg to differ on this. Welding 02 is much better than "in a pinch". It is tremendously less expensive and much easier to fill than medical 02. At least in my experience....and I go through a hell of a lot of 02. I do have 10 E tanks, that I own.....I fill them from my large welding tanks.

I can fill my large H (i think that's it) tank for $23.00. As often as I am on the 02, this size tank will last me from 7-10 days, even with the 25lpm regulator on it.

The E tanks are great for mobility.....but you cannot beat the amount and the price of welding 02. Most of our welding shops will also fill your medical 02 if you show them your prescription....cheaper than going through the middle man.

Roxy