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Am on my 80th day of CH's. Last year was 49. Last year was able to get oxygen from local provider

which shortened cycle and reduced length of attack. This year can't get any of three local providers

to provide even with script and paying out of pocket. Anyone know of any other providers in northern ca

zip 95486 or ideas on how to oxygen elswhere?

best,

g

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 Hi Greg...can you tell us why they are denying service even with a script...is it ignorance of CH needs by insurance or O2 shop?

Edited by jon019

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Providers are aware of CH. Must be ignorance of insurance co's since providers all say

unless patient has a pulmonary such as COPD, insurance won't allow them to distribute.

They won't give any other explanation.

best,

g

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...sorry...not quite following...who is saying you have to be a COPD type  patient...that is ANCIENT ignorance I haven't seen recently? I used Lincare both ins and self pay with no problem once I educated them on CH (some mgrs, other already knew)...even used their travel service where I had E tanks delivered to a hotel room (no extra charge!...it was awesome)…..one office located in Lakeport...dunno how close that is to you...others farther away

….for problems with insurance company I got my HEADACHE SPECIALIST (critical component of your CH battle plan) to write a letter of necessity for O2 and triptans at various times...makes it tough for insurance to deny as then they are practicing medicine w/o a license and w/o having seen you....at other times got the HR Mgr of my company AND the insurance broker who sold the health insurance to my company  to intervene...that last one worked wonderfully as you aren't the customer, they are and get an ear....

...you GOTTA get O2...it will change your life....if this all gets too complicated go the welding O2 route...cheaper and easier...folks here can help with the details...

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When I called around trying to find O2 here in Atlanta for my wife, had 4 straight providers deny her service even when we had the prescription and I offered to pay out of pocket, pick it up, etc. Multiple providers said verbatim “we don’t service people with CH, prescription or not”. On the 5th try I finally had a manager agree to provide on the basis that I paid out of pocket and I picked up from their location.

The prescription stated CH so I couldn’t really hide what it was for.

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WOW...I'm flabbergasted...been an O2 user since 1985 when I USED to hear this....what has happened!!??

...I'd go welding O2 if I was you folks.....

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jon, the three local providers are Apria, flat out said no without any reason.

Pulmonary solutions which said get a script for a pulmonary problem and Rotech that also said they couldn't without reason.

Believe your provider Lincare might not service west sonoma county but will call anyway. Insurance is Medicare and Humana supplemental.

Should I start calling and try to get them to persuade providers and or get my neurologist to call? Lastly heard welding 02 might have purity concerns.

thanks all

G

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flabbergasted, too, and agree with jon' about welding O2.  Pertinent info here: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/

it is generally argued that purity issues re O2 from welding suppliers are not real.  many folks with CH use O2 from welding suppliers.

medicare doesn't cover O2 for CH, so i suppose supplementals won't either.  but why they won't fill a script with out-of-pocket payment, i don't know.

 

Edited by CHfather

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I live in NJ and use Apria, that is definitely not their normal practice. My Dr filled out a form faxed it in and wala I got O2 no problem. The delivery guys are great. I have many tanks besides the 3 M tanks they know I have. I recommend calling Apria and get some one on the line from CS and just keep escalating up the food chain to some one that can help. Apria has been great for me. 

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...ok, making a little more sense now (the supplier denial part...NOT the horrendous ridiculousness of Medicare not covering)...but the flat out "NO" from supplier is still puzzling if you are willing to self pay...sounds like they just hear 'Medicare" and don't want to mess with that in any way...because any competent national supplier would certainly know about O2 use for CH...it's in the medical lit as THE first line abortive...

...re welding O2...as related many times over the years on this and the ch.com site....contaminated O2 makes for shitty welds...welders and their customers DON'T put up with that...no way, no how....bad welds are  dangerous and legally actionable.  don't let the banged up, dull paint  tank fool ya...it's the same O2 from the same "spigot"....just don't tell 'em you're gonna breath it...makes 'em all squiggly...……..

Edited by jon019

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Hey Greg,

Having studied this topic in detail with several experts since 2006, I'm well aware of your problem obtaining home oxygen therapy as an abortive for your CH. 

I suspect your Rx for oxygen therapy wasn't written properly.  The Rx must clearly state oxygen at a flow rate of 15 to 25 liters/minute with a non-rebreathing mask for cluster headache.  Otherwise, home oxygen providers are spring-loaded to assume the Rx is needed to treat COPD and ask for blood oxygen saturation test results, as you've already discovered.    The Rx should also state Administer STAT for at least 15 minutes up to 12 times/day with Refills for six (6) months for episodic CH or refills for one (1) year for chronic CH.

In addition, your doctor can also get very specific by using the appropriate Dianostic Treatment and Healthcare Common Procedure Coding System (HCPCS) codes:

Diagnostic and Treatment Codes:
ICD-9-CM Diagnosis Codes:
Episodic Cluster Headaches – 339.01
Chronic Cluster Headaches – 339.02

 

ICHD-II Codes:
Episodic Cluster Headaches – 3.1.1
Chronic Cluster Headaches – 3.1.2

 

ICD-10 NA Codes:
Episodic Cluster Headaches – G44.01
Chronic Cluster Headaches – G44.02

 

Healthcare Common Procedure Coding System (HCPCS) Codes for Home Oxygen Therapy:
Equipment:

 

E0424-E0425 Stationary compressed gaseous oxygen system (M-Size cylinders at home)
E0430-E0431 Portable gaseous oxygen system (E-Size cylinders when not at home)
Contents:
E0441 Oxygen contents, gaseous, 1 month’s supply = 1 unit
Modifiers:
QG - Prescribed amount of oxygen is greater than four liters per minute (LPM)

Accordingly, for an episodic CHer needing home oxygen therapy as a CH abortive, the Rx should read: 

Oxygen therapy at flow rate of 15 to 25 lpm with non-rebreathing mask as abortive for episodic cluster headache. Administer STAT for 15 minutes up to 12 X per day - ICDM-9 339.01/ICDH-II 3.1.2/ICD-10 G44.02/HCPCS - E0424-E0425,  E0430-E0431, E0441 - 12, QG.

For a chronic CHer, the Rx should read:

Oxygen therapy at flow rate of 15 to 25 lpm with non-rebreathing mask as abortive for chronic cluster headache. Administer STAT for 15 minutes up to 12 X per day  - ICDM-9 339.02/ICDH-II 3.1.1/ICD-10 G44.01/HCPCS - E0424-E0425,  E0430-E0431, E0441 - 6, QG.

If the Rx is written this way, you beat the dirty rotten bastards at their own game using their own rules.  Moreover, there's no way the home oxygen provider can confuse this Rx for COPD.  Give your neurologist a copy of this post.

If the home oxygen provider makes any changes to this Rx, be bold, remind them "it's against the law to change an Rx without consulting with the physician who wrote the Rx.  Then ask for the name of the Physician who has attempted to change the Rx so you can report that physician to the State Medical Board legal department.  Rationale, A strong offense is the best defense and telling them this usually puts them back on their heels.

What's the name of your medical insurance provider and state?  In many cases you can go over the Internet and look up the policy regarding "coverage" (they pay) for oxygen therapy.   Most medical insurance companies do cover home oxygen therapy for cluster headache.  That said, if you're on MEDICARE and do not have supplemental medical insurance that covers home oxygen therapy for cluster headache, don't waste your time, you'll need to take up Oxy-Acetylene welding and buy your own welder's O2 cylinder.  (Just don't tell the welding supply people how you intend to use it.) 

Oxygen therapy for a CHer on MEDICARE is not covered because the unelected idiot weasel bureaucrats at the Centers for Medicare & Medicaid (CMS/OCQ) have made a most egregious non-coverage determination in 2010 (a no coverage rule so they don't have to pay for the oxygen) for home oxygen therapy for cluster headache sufferers on MEDICARE.  This is another example of Big Government run amuck. They had a lot of help. 

If you follow the money, you'll find that Big Pharma does not want you to use oxygen therapy as a CH abortive and instead buy one or more of their patented pharmaceuticals costing upwards of $100 a pop, so they paid Lobbyists on K-street to write legislation for idiot members of Congress, who couldn't write a coherent sentence if they tried, that makes it more difficult for a physician to prescribe home oxygen therapy than write an Rx for opiates.  Moreover, in order to get this legislation passed, Big Pharma pays its K-street lobbyists to make donations to the applicable Political Action Committee (PAC) for corrupt members of Congress so they will vote in favor of this terrible legislation.

If you've any questions, just let me know.  There are no rules in a knife fight... and I'm a cranky old Navy fighter pilot... who loves a fight like this.

Take care and happy hunting.

V/R, Batch

Edited by Batch

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Batch,

Thanks for all the detail.

After hours on phone informing Medicare of my 108 attacks to date,

Today had Medicare on the phone with me and provider

stating that Medicare would pay for oxygen and he finally

gave  the reason they wouldn’t supply it was Cluster headache

customers use too many tanks.

Afterward, Medicare said later they can’t force providers to sell.

That being said have a couple more left to try here in Sonoma county, ca.

If no luck will go the industrial route yet am concerned about purity.

Any info on that?

And yes my Neuro will provide full bckg. letter with proper codes.

Will look at your next vitamin d message, thanks again

 

Best,

g

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yes, they said that if they get letter from doctor stating I've had more than 5

ch headaches in a month and ones that range up to 180 minutes, they will cover oxygen.

I know, thought i had it wrapped. We also talked with Apria customer service who said

they would update my previous account and add that Medicare would pay, then [you'll love this]

said I need to call the local distributor. I said can't you call them and tell them to ok the request.

they said no I had to do that myself, which will try tomorrow but know will net out the same!

best,

g

 

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...now I'm flabbergasted for a completely different reason...mayhaps a new strategy for us "older" folks?.....

...for those unable to get med O2…..and there be many clusterheads using welding O2....well,  sometimes a fella/gal has got to do what a fella/gal has got to do....and I'm reminded of what most any clusterhead has said at one time or another: "I'd do ANYTHING to stop these hits"...the tiny chance of impurities in welding O2 pales in comparison to the sometimes life altering meds that get thrown at us.......worth it if it stops ONE hit, let alone years' worth..............

Edited by jon019

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Greg,

Although the trajectory appears favorable in obtaining home oxygen therapy, the process in obtaining it is getting curiouser and curiouser.  Was the Medicare rep you spoke with local or back at CMS HQ in Maryland?

Take care,

V/R, Batch

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I am not aware medicare will cover O2 for cluster headaches.  This has been a bone of contention for some time.  The CMS ruling ignorantly stated there was too great a risk of respiratory depression giving oxygen if someone retained CO2.  The other concern was for eye damage which is only applicable to preterm infants.  Such concerns are ridiculous but exist.  If you have strait medicaid or medicare there is little change of getting O2 for clusters unless someone is manipulating the diagnostic codes or you have a supplemental policy that is savvy enough to recognize O2 is cheaper than even rationed imitrex.  It is a horrible situation that governmental agencies should be ashamed.

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It amazes me that conversations with providers can go from no, to yes in the subject of “coverage” when most of the time, actually just getting ANYONE to fill the script, cash, insurance, trading first born children or not, is impossible. 

Taking into account, said provider, gets paid at about 40%, their “cash/retail” billing rate when accepting an insurance payment; I’m wondering if they will still actually fill it?  When researching O2 in the recent years, almost everything I have read about medical O2 has to do with certification, more than actual filtering.  A friend of mine has actually seen commercial welding tanks filled At the same exact filling station as medical O2. It’s just invoiced differently.  Do some reading. There are a lot of articles online about medical O2 vs welding O2 etc. Why and What the cost difference is; and the farce involved. 

Being an EMT for over 10 years and having access to O2 I have been VERY fortunate to volunteer or work at places to bring my tanks in over the years and get them topped off when In cycle.  Medicare isn’t denying it out of ignorance.  I used to use a LOT of O2 in cycle.  Nonrebreather masks are unfortunately , Terribly inefficient at delivering high flow and conserving unwasted O2. I was going through a D bottle every other night.  

Getting your hands on a Demand valve or FROP valve is HUGE in getting seriously high low O2 and conserving your O2.  Unfortunately , they are still expensive, and only work off of the higher priced regulators that have a high pressure, threaded valve. For a demand valve or CPAP.  They won’t work on the Christmas tree plug.   

The bonus is... MOST EMS departments cant/don’t use demand valve/FROP devices at all anymore in EMS.  Which is how I acquired mine a few years ago.  Almost all EMS agencies use a bag valve mask with an O2 supply line.  The FROP push button was found to be delivering too much pressure, too much volume, with the provider not being able to feel any resistance.  So most agencies retired them years ago.  Many are sitting in a back closet collecting dust.  Useless to them, but almost like finding treasure to us.   I have yet, to meet a fellow CH suffer in person.  In acquaintance or passing. Which leads me to believe we are a rare crowd.  It might be worth anyone who wants to try and get a demand /FROP valve to find a friend at their local EMS squad , or peak in , introduce your self, bring some literature, and just ask?  If there is any chance of old ones just laying around.  It might take a month of red tape, a monthly meeting, whatever.  But I assure you.  Having one is very much worth it once you get your O2.

Sorry if I went a little sideways.....  I hope the info helps someone, as always.

Paul

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To all, thanks tons for all the input. Today will hear from Apria and will not be surprised

if they say no. Today will research where to get local industrial O2 and with the input from

all of you try to get the proper masks/valves etc. Give me a week and I'll get back to you.

Also in aweek it will be a three month cycle. Worst yet.

Best,

g

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He Greg,

See your PCP/GP for a lab test of your serum 25(OH)D concentration.  It's a safe bet your 25(OH)D serum concentration is < 40 ng/mL.  Once they've completed the blood draw for this lab test, start the anti-inflammatory regimen treatment protocol and the pending CH cycle will be a non-event.  See the following VitaminDWiki link to download a copy of the treatment protocol.

http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

Take care and please keep us posted.  This O2 saga has legs.

V/R, Batch

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Freud,

Thanks, sure send me the number,

yet am on the other side of the country. Did follow your earlier suggestion and called

the 1800 number customer service and like I posted they, with Medicare on the line

said they would update my account to state that Medicare would cover it. Yet

would not call the local office here to tell them to fill the order. Called local office

and am waiting to hear back.

Best,

g

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Greg,

25 year sufferer of CH here...  O2 is the only cure I've ever had. Thanks to a willing general practitioner I met 10 years ago who wrote me a prescription  and worked with my insurance company,  I was able to discover how wonderful it was. She has since moved away and my CH have gone away and come back, and it is a bit of a hassle to try to find understanding and knowledgeable doctors willing to help.  The first thing they want to do is prescribe migraine drugs that do nothing and sometimes make CHs worse. 

CHs came back last week and rather than bothering with the prescription/insurance/rental route,  I went on craigslist and found several affordable resale oxygen concentrators for sale.  I'm one of the fortunate ones that have found success with O2 concentrators.  10-15ml is ideal,  but they are expensive.  I purchased a 5ml concentrator today and have already used it with success.   I have a technique that I use that cures my CH even with lower ml rates.   My advice is if you can afford it ($250-500),  try CRAIGSLIST.

hope you find CH peace. 

Dave 

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13 minutes ago, Dave D said:

I have a technique that I use that cures my CH even with lower ml rates.

Well, don't keep it a secret, Dave. What is it?  (I think you mean lower lpm rates (flow rates), right?)  

For most people, spending $250-500 for a concentrator is definitely not the right way to go, when a pretty glorious setup using welding O2 would be possible at the lower end of that range, but if it works for you, that's what matters.

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Sorry for the delay to all. Update. Purchased new industrial tanks arriving 6/10.

Got 6 of those plus correct regulator/mask. Airgas will fill them up 6/11. Then, Batch,

got my D level checked and yes it is low, so started otc regimen according to link rec's.

Note: Have been taking sumatriptan since late Feb. It still works. But as you all know

getting refills is difficult.

Over the last three months started with Sumatriptan, then had nerve block injection,

then 10 days of Prednisone, then Verapamil at night, to NSAIDS twice a day to no avail.

Then since diagnosed with ADHD, have tried 10mg Ritalin three times a day [doc's thinking it could help both] which worked for awhile but now am on day 112 and still getting two attacks pretty much every 12 hours. My neuro, just emailed saying I've been on Sumatriptan too long

Gist is, hoping the O2 will take care it and not need Sumatriptan. Problem is I have to fly

out of town mid June for two weeks and won't have O2 and now might not even get

Sumatriptan. Ok so much for in a nutshell. Best, to all.

 

 

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