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  New CH.com Forum › Cluster Headache Help and Support › Medications,  Treatments,  Therapies › Help in getting OXYGEN prescribed
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Help in getting OXYGEN prescribed (Read 43212 times)
Guiseppi
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Re: Help in getting OXYGEN prescribed
Reply #50 - Dec 21st, 2011 at 7:33pm  
Not really cold, when you release the pressure of compressed air, it does result in a cooling effect, that's the theory behind air conditioning compressors! So while it'll be slightly cooler then room temperature, I wouldn't call it cold air.

joe
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Mike NZ
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Re: Help in getting OXYGEN prescribed
Reply #51 - Dec 22nd, 2011 at 3:06am  
Any gas which is compressed in a cylinder and is released will cool as it expands, be it oxygen from a cylinder or hair spray from a can. The energy used for the expansion of the gas results in the average kinetic energy of the gas falling, which results in the lower temperature. This is the basis of how things like fridges work.

Touch the oxygen cylinder after you've been using it for a few minutes and you'll notice it is cold, similarly the regulator and the oxygen tubing.
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Re: Help in getting OXYGEN prescribed
Reply #52 - Dec 22nd, 2011 at 5:42pm  
Is that Physics or Chemistry  Cheesy
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Re: Help in getting OXYGEN prescribed
Reply #53 - Dec 22nd, 2011 at 5:54pm  
domino wrote on Dec 22nd, 2011 at 5:42pm:
Is that Physics or Chemistry  Cheesy



yes!!! Grin
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Mike NZ
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Re: Help in getting OXYGEN prescribed
Reply #54 - Dec 23rd, 2011 at 10:33pm  
domino wrote on Dec 22nd, 2011 at 5:42pm:
Is that Physics or Chemistry  Cheesy


It's simple stuff, so it must be physics.

It's pretty much based on Charles' law, although that is for a constant pressure change, but for the example it'll be close enough:

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Re: Help in getting OXYGEN prescribed
Reply #55 - Jan 3rd, 2012 at 3:58pm  
Hi, I'm new on here & at the end of my wit! I've been suffering with CH since oct 2010 diagnosed in march 2011 had a fantastic neurologist!! Sadly the drugs are not working anymore (verapamil) my gp won't give me Sumatriptan or oxygen as these are too expensive... Have tried most over the counter drugs but nothing works... Don't know how to get my gp to prescribe something ANYTHING that will work! Any ideas???! PLEASE HELP!! I really dont want another night of waking up being stabbed in the eye & waiting to die!!
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Mike NZ
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Re: Help in getting OXYGEN prescribed
Reply #56 - Jan 3rd, 2012 at 6:38pm  
Hi Sobia

For verapamil it's possible that you may need to increase the dose you are on. Whilst most people get relief with between 360 and 480mg a day some people have to go as high as 960mg a day. But only change your dose in consultation with your doctor.

There are other preventives, like lithium and topomax. Lithium is sometimes taken with verapamil as a combination when either by itself does not work.

There is a UK based user group, Ouch UK - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register - contract them (they have a helpline) and they will be able to give you some UK based advice.

Oxygen is NOT expensive! The GP is probably looking at costs associated with people who use oxygen 24x7, which does add up, but when you consider that you can abort a CH in 10 minutes or less, it works out to be inexpensive. The Ouch UK people should be able to help you get your GP to prescribe it. If all else fails, you can obtain it from BOC or one of the other companies in the UK that provide oxygen. For medical oxygen in the UK they work on an area basis. The ability for oxygen to kill off CHs in minutes is priceless. Lots of people here fund their own around the world.

Similarly for sumatriptan, you'll be meaning imigran (imitrex) injections. These work well but are expensive, with the cost of just one or two being more than the cost of oxygen for a month. However these are available on the NHS. Again ask the Ouch people.

I suspect that your GP is uninformed about the true cost of oxygen and is just trying to not spend his drug budget, which after all is intended to be spent to benefit their patients.

Whilst you're here, read posts in this forum and you'll soon learn a lot more than most doctors know.

And ask questions, we'll try to answer them.
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Re: Help in getting OXYGEN prescribed
Reply #57 - May 3rd, 2012 at 11:22am  
I have just started O2 therapy (yesterday my tank was delivered)....thank goodness.  I am so thankful that I have a neurologist who has seen me through all of my episodes over the the past 10 years and when I mentioned oxygen he said that was going to be his next suggestion.  I didn't know about the O2 until I found this website (thank you).  I am crossing my fingers and hoping this bandage will help.
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Re: Help in getting OXYGEN prescribed
Reply #58 - May 3rd, 2012 at 11:38am  
That's great news! I suspect you've already read it, but never hurts to review again to make sure you get the maximum benefit from the 02.

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Hope it proves the life saver for you that it's been for me.

Joe
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Re: Help in getting OXYGEN prescribed
Reply #59 - Feb 4th, 2013 at 4:43pm  
I've been a sufferer for more years than I'd care to admit. I would say I'm more of a chronic sufferer. Anyway, the drug of choice for me has been 20mg sumatriptan nasal spray. Recently, when trying to refill my prescription Kaiser here in N. California has been having trouble with the manufacturer in getting the drug. So, I've tried 100mg sumatriptan tablets which typically is not as effective for me.  Anyway, to my point, a couple of weeks ago I had a very bad spell peaking with a trip to ER to get O2 and a stronger pain injection to stem the beast.  After about 20min after the shot and being on the O2 the pain had gone away.  It had been about 5 or 6 years since the headache required a visit to ER and again O2 was given and appeared to work. Typically, after this it has a tendency to break the cycle of headaches. Being that I go through the nasal spray pretty rapidly when I get into a cycle and the trouble Kaiser is having getting the spray I would like to try O2 therapy. I have an appt. on Wed. with my long time PCP doctor at Kaiser and would like to propose my getting a prescription for O2.  Has anyone had any luck getting Kaiser to approve a prescription for O2?

Thanks to everyone for this great resource.
Mark
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Re: Help in getting OXYGEN prescribed
Reply #60 - Feb 4th, 2013 at 4:46pm  
I'm in Southern Cal and got Kaiser to prescribe 02 and eventually pay for it! Once my GP explained to member services the difference in cost per abort between Imitrex Injectables and 02, they couldn't wait to get me set up. They used APRIA down here for my oxygen and I have zero complaints regarding speed and quality of service.

JOe
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Re: Help in getting OXYGEN prescribed
Reply #61 - Feb 5th, 2013 at 5:21pm  
Great. Thanks. I have my appt. tomorrow with my Kaiser dr. I told him already what I want to discuss with him regarding O2 as an abortive measure because I'm having a heck of a time getting the sumatriptan nasal spray. I also what to discuss with him the D3 treatment.  We'll see what happens.
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Re: Help in getting OXYGEN prescribed
Reply #62 - Apr 26th, 2013 at 1:06pm  
I'm new here but I've suffered from Cluster Headaches for years.  The last 2 times I went to the Dr he gave me oxygen which was like a miracle for me.  He said he would have no problem writing me a prescription but my insurance will only cover oxygen for respitory problems.  I would possibly be ok paying for it out of pocket and I've been searching for how much the whole set up would cost but haven't been able to figure out exactly what I need and some actual hard numbers for the cost.  Can anyone answer the following?

What is the approximate cost to buy the set up (tank, oxygen, mask, etc....)?

Where do you actually buy the oxygen?  How often are you allowed to refill the tank?

Thank you in advance.  I'm so excited to have found this site and hope to find lots of good ideas to do battle with this.  I've been pain free for a mere 2 weeks (since my dr gave me oxygen therapy) and I am starting to get the pain behind my eye so I know another one is coming on.  The last time it lasted for months.  I am out of sick time and I just can't face another round of these headaches.  I swear nobody but a fellow sufferer can ever understand the devastation these cause to ones life.
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Mike NZ
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Re: Help in getting OXYGEN prescribed
Reply #63 - Apr 26th, 2013 at 5:05pm  
Hi and welcome

The answers to most of your questions are very dependant upon where you are in the world as it can vary between countries and between states. So please tell us and someone is likely to be somewhere near you and be able to give local advice.

However in general people get medical oxygen if they have a prescription or they will often use welding oxygen if they don't. There are normally multiple different suppliers but this is very much a case of seeing what applies to where you are in the world.

As for refilling the tank, well most people get multiple tanks and refill them as needed so they always have enough to last them a few days, especially around holiday times like xmas and Easter. So the how often will vary as to how many tanks you have and how quickly you get through them.

Once you've got oxygen to hand you'll just love being able to kill them off quickly and just get back to living life. As you say, only someone with CH or who supports them can really get an idea of just what this is like.
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Re: Help in getting OXYGEN prescribed
Reply #64 - Apr 26th, 2013 at 11:32pm  
Hey JujuBeee,

Nothing... and I mean nothing...  gets my jaw tighter and my tail in a big ol' knot faster than hearing a cluster headache sufferer say their medical insurance won't cover oxygen therapy for cluster headache.  Better than 90% of the time that's pure BS!

What medical insurance company?  Go to their web site and search on oxygen therapy for cluster headache and cross check with your policy. 

Nearly all medical insurance companies will cover oxygen therapy for cluster headaches...  you just need to get past the idiot insurance representative who is told to deny any coverage for oxygen therapy unless all the lab tests are completed in triplicate indicating your blood oxygen content is well below normal... 

Blue Cross - Blue Shield, Humana, and Kaiser all cover oxygen therapy for cluster headaches... 

You need to be firm and be prepared to pester the living crap out of them...

If you've got an Rx for oxygen therapy, make sure it reads like the following...  If it doesn't, the idiot insurance agent has you with a "Gotcha" so send the following example to your doctor and have him/her make the changes so it reads like the following:

Rx:

"Oxygen therapy with a non-rebreathing mask as an abortive for cluster headache pain.  Administer at onset of attacks at a flow rate 15-25 liters per minute for up to 20 minutes per hour, up to 12 times per day.  Patient requires Stationary Compressed Oxygen Cylinders for Home Use – M-size (Minimum Qty 3 X 141 Cu Ft each) per month, and at least one E-size or M60 portable compressed oxygen cylinder for local travel and work per month.

Pick the appropriate diagnostic codes for episodic or chronic cluster headache and include them in the Rx for oxygen therapy:

ICD-9-CM Diagnosis Code:      

339.01 - Episodic Cluster Headaches
339.02 - Chronic Cluster Headaches

ICHD-II Code:                  

3.1.1 - Episodic Cluster Headaches
3.1.2 - Chronic Cluster Headaches

ICD-10-CM Codes:

G44.019 - Episodic cluster headache, not intractable

G44.029 - Chronic cluster headache, not intractable

Be sure to include the HCPCS:

Healthcare Common Procedure Coding System (HCPCS) Codes for Cluster Headache:

Equipment:
           E0424-E0425 Stationary compressed gaseous oxygen system

           E0430-E0431 Portable gaseous oxygen system

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)"

Using the above Rx sample with the appropriate diagnostic, treatment and HCPCS codes also helps preclude confusing the Rx as being written for a COPD sufferer...

Remember, most of these bureaucrats and medical insurance company droids have a built-in bias to deny oxygen therapy...

I've found it also helps to go on the offense if you run into an oxygen provider, an Insurance company, or one of the DME  (Durable Medical Equipment) contractors who wants to change the Rx and deliver a concentrator, a LOX system or a regulator incapable of delivering a flow rate of 20 to 25 liters/minute...

All you need to do is state the following:

"Are you a licensed physician?"

"Changing a prescription without consent of the physician who wrote it, is against the law"

"There is no generic substitution for a prescription written for gaseous oxygen at a flow rate of 20 to 25 liters/minute."

And if you run into the same BS... say "Then I intend to report your failure to cover oxygen therapy for cluster headache to the State Medical Insurance Commissioner."

If all this fails, find another home oxygen provider...   or buy the needed equipment and your oxygen from a local welder's supply company...  Just don't tell them how you intend to use it... unless its for making stained glass windows or aquatics...

Now... there is one big exception... If you're on MEDICARE...  the big government social progressive bureaucratic idiots at CMS (Centers for Medicare and Medicaid Services) have ruled... Oxygen therapy for Cluster Headache is NOT COVERED unless you are participating in an oxygen therapy study...

If that's the case...  and you are on Medicare....  don't vote for any liberal progressive (communist) democrat Representatives, Senators, or Presidential candidates...  They support obamacare and just want you to die... or take a pill... then die.

Then plan to take up Oxy-Acetylene welding as a new hobby...  I have one such kit...  and I actually use it for welding since I've been on the anti-inflammatory regimen with 10,000 IU/day vitamin D3 for the last two and a half years...

Take care,

V/R, Batch
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« Last Edit: Apr 27th, 2013 at 1:02am by Batch »  
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Re: Help in getting OXYGEN prescribed
Reply #65 - Apr 27th, 2013 at 9:45am  
Welding O2 is so simple.

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« Last Edit: Apr 27th, 2013 at 10:05am by Marc »  
 
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Re: Help in getting OXYGEN prescribed
Reply #66 - May 8th, 2013 at 7:38pm  
Thanks for the great information.  I'm located in southern California and my insurance is Health Net.

I just received a phone call from a medical supply company that they are delivering my oxygen tank later today.  I hadn't heard anything for a couple of weeks and was preparing for my fight and to get a phone call like this was such a relief.  I'm sure you all know what it's like to live in dread of these headaches.  The slightest pain in my eye sends into such despair. 

Has anyone experienced oxygen no longer working for them?  You know, how sometimes certain medications lose their effectiveness after awhile....
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Re: Help in getting OXYGEN prescribed
Reply #67 - Sep 10th, 2013 at 12:11am  
How does CPAP compare to straight O2 tanks? I've used the latter with success, but recently inherited a CPAP machine. Comments please! Thanks
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Re: Help in getting OXYGEN prescribed
Reply #68 - Sep 10th, 2013 at 12:53am  
CPAP machines are worthless for aborting CH's.  We need 100% o2.

CPAP masks could kill you.  We use NON-rebreather masks with NO headstrap and we do not sleep while mask is on.

Unsolicited advice....use a high flow regulator with the ability to provide at least 15 lpm, preferably 25 lpm to hyperventilate.

Sell the machine on craigslist or donate it to a smoker.

-Gregg in Las Vegas
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Re: Help in getting OXYGEN prescribed
Reply #69 - Sep 10th, 2013 at 3:41am  
LasVegas wrote on Sep 10th, 2013 at 12:53am:
Sell the machine on craigslist or donate it to a smoker.


Or find a friend / relative who needs one. They will love you for it and so will their partner as it lets both of them get a good nights sleep.
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Re: Help in getting OXYGEN prescribed
Reply #70 - Jun 21st, 2014 at 1:03pm  
Hi all!

I've started thinking about travelling to the USA for a long period of time to study a degree but the first thing I need to check off my list is the possibility of having oxigen there. I'm from spain and here I can get it from the public health care for free. What would be the best and cheapest option for me? I think I'll have to get an insurance that has that cover. Is that right?
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Re: Help in getting OXYGEN prescribed
Reply #71 - Oct 7th, 2014 at 10:49am  
What do i do once i get a doctor to prescribe me oxygen? They said it would take a week or likely more for me to get 100% pure oxygen, if they can even get it. They also said they would call me yesterday and they didn't, so i called them, and they still haven't called me back. I bet if i meet with the Dr. again i can get a written prescription (last time she said she would take care of it), if i did that which company's could i contact to get the oxygen (i assume you cant just get it from a pharmacy?)? If i could get a list that would be great, so i could see if any of them are on the covered medical equipment list for my insurance.
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Re: Help in getting OXYGEN prescribed
Reply #72 - Oct 7th, 2014 at 2:06pm  
Where do you live?  Most of us get oxygen from a "home oxygen therapy provider."   If you Google "oxygen therapy + (your zip code)" you should get a list of home oxygen therapy providers in your area.

Most physicians know how to order home oxygen therapy and will do this for you.  It's also a good idea to get a written copy of the Rx in case you need to travel out of your area and want oxygen at your destination.

Be sure to order one of the ClusterO2 kits from the CH.com store at the left.  They work so much better than the disposable POS most providers bring with your oxygen therapy equipment.

Click on the following link and scroll down to post #5 and post #14.  These are two posts that should help explain what to do when your oxygen therapy equipment arrives...

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Take care and please keep us posted.

V/R, Batch
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Re: Help in getting OXYGEN prescribed
Reply #73 - Oct 10th, 2014 at 1:10pm  
hi...I wanted to tell you all that I just aborted attack with some O2 therapy...literally just now.  This is amazing.  I am only able to do this because I am at work (I'm an MRI tech) and I have the O2 available.  I will be speaking with my dr. to obtain a rx for oxygen. 
Thank you SOOOO much for all the advice. 
I feel like a million bucks
til the next hit....
Grin
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Re: Help in getting OXYGEN prescribed
Reply #74 - Oct 10th, 2014 at 9:13pm  
Xthisbrain,

Great news...  Having oxygen therapy handy and knowing it can work effectively and rapidly to abort a CH... takes away a lot of the angst associated with our disorder.

Don't delay in getting an Rx for home oxygen therapy... Make sure the Rx states "Oxygen therapy as an abortive for cluster headache.  Administer at a flow rate of 15 to 25 liters/minute with non-rebreathing mask." 

Order one of the ClusterO2 kits from the CH.com store tab at the left side of this screen.  They're great!

Also, be sure to ask for a lab test of your serum 25(OH)D.  This is the metabolite of vitamin D3 that's used to measure its status...

Check your PM Inbox at the upper left corner of this window...  Click on "
you have 1 new message
"  I've sent you some additional information.

Take care and please keep us posted.

V/R, Batch
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