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Rose

O2 prescription

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Hi everyone...seeing my doctor tomorrow, and I need to know how to ask for a O2 prescription in the correct terms and amount.  Not sure if she will understand how to write script.

Thanks for any advice!?

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Supplemental O2 for CH must include diagnosis code

15-20LPM (liters/min) via non rebreather mask. 

 

I think that that covers it wait for one of the senior folks to respond. Just didn’t want to leave you hanging. 

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What Freud said.  The example we always give is "Oxygen therapy for cluster headache. Up to 25 min at 15 L/min with non-rebreather mask."  I suppose this was taken from someone's prescription, and there are probably other ways of saying it.  Where it says 15 L/min; if you get the doc to write 25 L/min, all the better!

In case it's helpful to show the doctor, the randomized, double-blind, placebo-controlled study of O2 for CH is here: https://jamanetwork.com/journals/jama/fullarticle/185035

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Rose,

Here's the exact same article on pubmed.  National Institute of Health (NIH.Gov).

https://www.ncbi.nlm.nih.gov/pubmed/19996400

You should print it and TELL the doctor you want a script for Oxygen.  There are a lot of doctors that are ignorant of how effective Oxygen is and try to pass it off that we don't know what we're talking about.  The truth is WE know a lot more than the majority of doctors out there about CH and what works (and doesn't work).  

Keep us posted how it goes!

J

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I just dealt with this issue.  My neurologist would not prescribe oxygen.  I went to my PCP with the information others have  presented above. 

I would add, however, that some docs will push back because insurance doesn't always cover oxygen therapy for cluster headaches.

Also, once you get the script, there are other hurdles, like the oxygen supply company.  They will try to set you up with a nasal canula.  Don't let them.  You must have a non-rebreather mask.  It would also be a good idea to have your doc prescribe the size of tanks you will need.  You will need a larger tank (M size, or H size) for home, and a smaller tank (E size) for away from home.

I thought I would toss that in because I have encountered these issues with my oxygen suppliers. 

Good luck to you.  Oxygen has dramatically improved my quality of life.

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Another thing to suggest to your doctor is that s/he look in any standard medical reference guide (the doctor should have some online one), where oxygen is the #1 recommended abortive.

5 minutes ago, CHChris said:

I would add, however, that some docs will push back because insurance doesn't always cover oxygen therapy for cluster headaches.

Also, once you get the script, there are other hurdles, like the oxygen supply company.  They will try to set you up with a nasal canula.  Don't let them.  You must have a non-rebreather mask.  It would also be a good idea to have your doc prescribe the size of tanks you will need.  You will need a larger tank (M size, or H size) for home, and a smaller tank (E size) for away from home.

This is all oh so true.  In my opinion, O2 is not prescribed for reasons that have nothing to do with its efficacy (which is unquestionable), or even the insurance issues (though they definitely state this as a reason, as CHChris says). It's because most docs have no experience with patients using high-flow oxygen, and there are unsure about how to prescribe it and what to do with a patient who is using it. So you have to persist. Even that is not always sufficient.  Government insurance programs (Medicare, Medicaid, VA) are not allowed to prescribe O2 for CH.  This is an irresponsible abomination. I think any private insurance has to cover it (could be wrong!) but it can take a lot of work to get them to do so.  Maybe you want to call your insurance co in advance to get an idea.  If your doc gives you the insurance "excuse," you might say you want to get the prescription anyway and you'll pay out of pocket if you have to.

Regarding suppliers -- as CHC' suggests, you should call them after you get your prescription and make it clear what CHC' says: a large tank and a small one, with regulators for each (they use different regulators) that go up to at least 15 lpm, and non-rebreather mask. You do not want a "concentrator," which makes O2 out of room air.  I haven't heard of docs prescribing tank sizes, but maybe it happens, and that would be good. The supplier is going to make a lot of runs to your dwelling to replace tanks if they give you only a small one or a couple of small ones.  There is also a ,mask very strongly recommended for people with CH, which you will have to buy yourself: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit  And you might want to get higher-flow regulators.  We can discuss that when the time comes.

Fingers crossed that it will be as easy as it should be, and not as hard as we have come to expect it to be.

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ALL the above ^^^^^^^^^^B)…..and I'm not sure that private insurance "has" to cover it... but they WILL.... provided ya play the game!

Of the 8 insurance companies over my career, 7 of them refused initial request for O2 as CH treatment. Totally bizarre when the alternative triptans are so damn expensive (tho ALSO limited  by them). Just one more entity that doesn't understand CH and doesn't seem to care either. Sermon over...

OXYGEN saved my sanity, if not my life....I seethe when I see refusals and the completely inexplicable federal veto. I got it EVERY one of those 7 times...because I HAD to...……..

If they won't:

Appeal immediately by writing and phone...keep copies of ALL communication and persons talked to. Do not accept the bullshit line that "we don't accept oxygen as treatment for CH."  It's in the lit as the referenced by CHF and THMH....and that would mean they are practicing medicine without a license (i.e. the droid in the basement with the green eye shade and the mission to deny everything).  Call 'em on that one...anything in writing or verbally from an identified rep is golden. Be sure you have a prescription...and send 'em copies of either or both of the lit above. 

I REALLY hope you have an advocate Doctor....who cares and is willing to fight the insurance company....and hopefully pissed at incompetence. You'll need a "letter of necessity" describing his/her diagnosis and treatment plan (O2 of course)....and woe be the UNLICENSED insurance jockey who disputes that. (one of my fav memories is the blistering letter my neuro sent...it really worked).

If you are working.... seek help from the HR person to go to bat for you. Better yet...besides that person, find out who is the broker that sold your company the policy. Request HR put you in contact....THAT person is really considered the insurance company customer...they'd prefer you go away...but they WILL listen to this person. Meet and greet and give 'em all the above.....

Game on...don't get mad...get busy. It got to be sorta fun after a while...and a great distraction...stress being a prevent for me...hoping this will save you a little....

Best

Jon

Edited by jon019

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Good morning everyone, had a good visit with GP yesterday.  (Never had luck with neurologists).  I have prescription for O2 in hand!  She says if it isn't everything they need to fill the scrip, we'll keep working til we get it right.  Can't ask for anymore than that!  Not in a cluster cycle at the moment, but could be at anytime.  Trying to stay ahead of the pain! I have swore off prednisone, and am looking for something to add to my ammo.  

Cannot tell each of you how very much I appreciate your help...this site is truly a life saver! 

Thanks for your quick responses!  BTW...I will be purchasing the ClusterO2 Kit from this site as soon as I have that lovely tank in hand! ;)

Have a great day...Rose

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Way to go Rose!!!

Have you looked into the D3 Regimen? It consists of OTC vitamins. It has been a huge help for a lot of us. It is advisable to get your D3 levels checked by your doctor first. She sounds like she would be ammenable to doing that now for you. Then, start taking the vitamins. At the least they will slow ramp up time down for you and reduce the intensity of the hits you get. I take them year round as do many here. Healthy, ya know?

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Spiny, read about it on this site, and am following the regimen.  Had blood work yesterday to determine Vitamin D levels.  You just answered another question of mine, and that is whether to take high dose Vitamin D only during cycle or every day...thanks!  

You guys are awesome!

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….soma the same folks as here, plus a bunch more "cracked heads"...started by a man (DJ) over 20 yrs ago cuz he found out he had CH and NOWHERE to find info!!! …... saved some lives and everything that boy....B) !

….just watch out for the occasional axe murderer...and read a few of the threads...you won't be sorrrrrrrrrry

Edited by jon019

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