Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Oxygen Question
        
(Message started by: scottadavis on Apr 4th, 2006, 3:16pm)
Title: Oxygen Question
Post by scottadavis on Apr 4th, 2006, 3:16pm
I would like to try this oxygen treatment. What do I need to do to get oxygen? Will the doctor prescribe you a tank? Is any of it covered on Blue Cross/Blue Shield or will I be forking out a couple hundred on equpiment? Does the Clustermasx contain oxygen or is it just the mask and hoses? I don't know very much about this, sorry.

It's kind of funny. About a month ago before this series of attacks started, I mentioned to my wife that I felt like I needed more oxygen.  Then today for the first time I have been reading that it helps after taking Imitrex. I would sure like to try this and see if it will help me.

Any help would be greatly appreciated. At this point I just need relief. Thanks Scott
Title: Re: Oxygen Question
Post by Richr8 on Apr 4th, 2006, 3:31pm
[quote author=scottadavis link=board=meds;num=1144181788;start=0#0 date=04/04/06 at 15:16:28]I would like to try this oxygen treatment. What do I need to do to get oxygen? Will the doctor prescribe you a tank?
If he won't, you might have the wrong doctor.

Is any of it covered on Blue Cross/Blue Shield or will I be forking out a couple hundred on equpiment?

I don't know about these, but my insurance does cover the cost.  You will have to ask your provider.  If they do not, there are commercial approaches to solving this problem.

Does the Clustermasx contain oxygen or is it just the mask and hoses? I don't know very much about this, sorry.
Just the mask and hoses.

Read all that you can from the Oxygen link on the left.  Everything you need to know should be there.  If not there are several O2 experts listed at the bottom of the page who can answer specific questions.

pf wishes,

Rich

P.S. You absolutely must try Oxygen.  If it works for you, there is no better abortive treatment.  So keep after it until you figure it out.
Title: Re: Oxygen Question
Post by Skyhawk5 on Apr 4th, 2006, 4:27pm
Hi Scott,
When you get the Oxygen be sure to use a "NON-REBREATHER" mask, not the Nasal Canula. The Clustermasx can be ordered through this site. To find out if Blue Cross covers it try www.bcbsm.com or www.hcbo.com, or there should be a 1-800# on your card for info.

Oxygen has been a lifesaver for me as for many others on this site. It's not a miracle but close enough.
Hope this helps,       Skyhawk5,     Don
Title: Re: Oxygen Question
Post by scottadavis on Apr 4th, 2006, 4:54pm
Thanks everyone, great help from great people!

Scott :)
Title: Re: Oxygen Question
Post by NotH20 on Apr 5th, 2006, 3:35pm
Scott,

I have BC/BS and they cover the O2 for me.  I just call my local medical supplier and fax them my prescription....they do the rest of the work.  I usually get an O2 concentrator AND  E-cylinders (for transportation).  The concentrator makes it's own O2 so I never have to worry about running out at home.  I keep the portable cylinders in the car.  When you call your medical supplier tell them exactly what mask you need or they will bring you the nasal canula.  If my cycle lasts for more than about 4 months, the insurance may ask for an updated script.  

As Rich stated...click on the link on the left and that should answer the rest of your questions.  

Good luck,
Mia
Title: Re: Oxygen Question
Post by Skyhawk5 on Apr 5th, 2006, 6:28pm
Mia,
My apology but It's my understanding that the Oxygen concentrator does not put out enough LPM's to get the high LPM's recomended for CH. Maybe I'm wrong but don't they only go to around 6 LPM ?

I just wanted to bring out that this may not work for all, and find out if those machines have gotten better.
Skyhawk5,  Don
Title: Re: Oxygen Question
Post by Garys_Girl on Apr 6th, 2006, 11:47am
How much 02 do you need?  It seems likely 02 will work for Gary as it has helped in the past, but he stumbled on it as an abortive therapy, and doesn't do it properly.  We currently don't have insurance, and it costs a LOT for delivery.  But the refill time here is two weeks for pick-up.  The little dial on the 02 bottle we have now goes up to 2000.  2000 what?  And the - what is that - a flow regulator? - goes up to 8.  8 what?

So - he needs a new mask.  (His has little vents that allow exhalation out and no bag attached.  Wrong mask?)

He really needs the humidifier - the oxygen is very drying, and he often stops using it simply because it starts to hurt his throat and nasal passage (amazing he can even notice that bother with his Kip 9s).

But.... if he continues to experience about 4 episodes a day, how large a bottle of 02 do we need?  And the medical supply store here mentioned that we can purchase a concentrator to fill the bottle ourselves, but that it'll take about 8 - 10 hours to do so (which means we'd need two bottles, but that's fine).

Sorry about all the technical questions, but knowing how well 02 works as an abortive, it's really starting to bug me that we have some but aren't using it correctly, and also that he's so scared he'll run out, he doesn't use enough.

Thanks,

Laurie
Title: Re: Oxygen Question
Post by NotH20 on Apr 6th, 2006, 12:05pm
Don,

I have two concentrators hooked together - they each go to 5 LPM - so 10 LMP total.  But I actually turn the nozzle a little higher past the red line so I'm getting 12 LPM.....not a bad deal huh?  Never have to refill and never run out.  Now if I could get my E cylinders to refill themselves I'd be rockin'   ;)

Mia
Title: Re: Oxygen Question
Post by seasonalboomer on Apr 6th, 2006, 12:06pm

on 04/06/06 at 11:47:13, Garys_Girl wrote:
How much 02 do you need?  The little dial on the 02 bottle we have now goes up to 2000.  2000 what?

Answer: That dial tells you how much air is left. If yours goes to 2000 that means it is full. As it approaches 500 you'll be getting near the end.  

And the - what is that - a flow regulator? - goes up to 8.  8 what? If it only goes to 8 you are going to need a different flow regulator.

Answer: It needs to go to 10-12-15 liters per minute. Only at these levels do most people find it is most effective.

So - he needs a new mask.  (His has little vents that allow exhalation out and no bag attached.  Wrong mask?)

Answer: See this link ; http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm and there is picture of what a NON-rebreather is. It does have bag. If it's got the little holes that allow exhalation and it doesn't have little "flaps" over them so that they close on an inhale - it's the wrong kind and won't do diddly.

He really needs the humidifier - the oxygen is very drying, and he often stops using it simply because it starts to hurt his throat and nasal passage (amazing he can even notice that bother with his Kip 9s).

Answer: This is more of a problem for some than others. A solution can be rigged with an old Mayonaise jar -- it's been discussed -- look for a thread on the subject. As for your amazement at his noticing -- it's a function of CH that everything becomes very noticeable. I can be bothered by the idea that I haven't brushed my teeth at the onset of CH. EVERYTHING is hypersensitive.

But.... if he continues to experience about 4 episodes a day, how large a bottle of 02 do we need?  

Answer: It depends - He may need to get several E tanks at once, or if they can deliver a bigger one he may only need one till they can come by with a refill.
Title: Re: Oxygen Question
Post by miapet on Apr 6th, 2006, 12:08pm
D's insurance paid it all, needed an updated script yearly.  The concentrator doesn't put out as much o2 as the 15 lpm (you need to ask for a high flow regulator too) that he got from the tanks . . .but it did about 10 to 12 lpm, which helped .. .it was better than none .. .

*positive light and energy*
miapet
Title: Re: Oxygen Question
Post by vietvet2tours on Apr 6th, 2006, 12:10pm
[quote author=scottadavis link=board=meds;num=1144181788;start=0#0 date=04/04/06 at 15:16:28  Then today for the first time I have been reading that it helps after taking Imitrex. I would sure like to try this and see if it will help me.

Any help would be greatly appreciated. At this point I just need relief. Thanks Scott[/quote]                                                                                                                                   Before the drugs please.                                                 Potter
Title: Re: Oxygen Question
Post by Garys_Girl on Apr 6th, 2006, 1:29pm
Thank you!!!!!!!!

Laurie
Title: Re: Oxygen Question
Post by Garys_Girl on Apr 6th, 2006, 4:30pm
Found this link while browsing www.clusterbusters.com:

It's an oxygen use time calculator:

http://www.monroecc.edu/depts/pstc/backup/paraoxca.htm
Title: Re: Oxygen Question
Post by Richr8 on Apr 6th, 2006, 5:00pm

on 04/06/06 at 11:47:13, Garys_Girl wrote:
But.... if he continues to experience about 4 episodes a day, how large a bottle of 02 do we need?  A


An "E" tank typically lasts me 4 hits.  However, if I am not getting relief, I will shut down after 15 minutes.
Title: Re: Oxygen Question
Post by Skyhawk5 on Apr 6th, 2006, 8:52pm
Mia,
Now that's an idea I haven't heard before. May need it some day.   Thanks.

IE: An E tank last about the same for me as Rich. 3 to 4 hits. When it is working on me well a tank can last up to a week. Of course this is when the O2 is stopping the attacks. I have also used a whole tank in 1 night when it didn't stop them. I have a M tank non-portable in the house that is equal to about 3.5 E tanks. The biggest home tank is the H, roughly 2.5  M tanks. That I get. SeasonalBoomer covered what is needed    Having this stuff stop an attack in a few minutes is still amazing to me. Not a miracle but close enough.
CH-less for now,     Don
Title: Re: Oxygen Question
Post by Garys_Girl on Apr 7th, 2006, 11:21am
That's very helpful info, thanks.  Gary procured two full E-tanks, the humidifier, a proper non-rebreather mask (although sounds like we should get in line for a Clustermask), a high flow meter, AND two little portable bottles of 02, enough for one episode each.  They fit in his backpack (he doesn't carry a briefcase), so that's pretty cool.

He started to have an episode while he was at the medical supply store.  They hooked him up to some sort of liquid oxygen system.  Anyone familiar with this?  Gary said it was amazing - it not only aborted his attack "almost instantly," but it delivered moist room temperature 02 with some sort of "tissue-like" "mask" that "you couldn't even tell was on."

Anyone heard of this?  Unfortunately, apparently not only is the delivery system really expensive (I forgot what he said, but it was thousands), the liquid oxygen is also really expensive.  Apparently no insurance company will cover it for Cluster Headaches.

Anyway - just thought I'd mention it for those millionaires out there.....
Title: Re: Oxygen Question
Post by marlinsfan on Apr 7th, 2006, 2:42pm
I'm with Rich. 3-4 times per e-tank. I have 3 of them at home, and call for refill the moment I run out of the 2nd one. By the time I get the 3 tanks delivered, my 3rd old one is almost gone.

My O2 supplier is great in that they will deliver within 24 hours, monday thru saturday. If anybody needs the name in S. Florida, let me know.
Title: Re: Oxygen Question
Post by Skyhawk5 on Apr 7th, 2006, 3:45pm
Before I forget, a most IMPORTANT factor with O2 is how quickly you put it on. For me within 2 minutes of when the attack starts greatly increases the odd's of stopping the attack. I too have had to purchase the O2 for some time. Ended up buying 2 E tanks, regulator and carry cart for $300 back in 1989. The refills were $10 then $15, to $20. Must be a bit more now. Luckily the wifes insurance covers it now. For the large H tank they bill the insurance $365/mnth.  Yeow!

I think the machine at the O2 Store is a concentrator these don't put out the Higher pressures that tanks do. with the correct regulator.
Gary,  Good Luck, PF days are coming.         Don


Clusterheadaches.com Message Board » Powered by YaBB 1 Gold - SP 1.3.1!
YaBB © 2000-2003. All Rights Reserved.