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Cluster Headache Help and Support >> Cluster Headache Specific >> Medical Oxygen "very expensive"?
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Message started by Jim L on Jun 8th, 2010 at 4:52pm

Title: Medical Oxygen "very expensive"?
Post by Jim L on Jun 8th, 2010 at 4:52pm
Just officially diagnosed with CH last week, though in retrospect I've had them for 20 years every summer.  Verapamil?  Yes. he prescribed it last week and all I feel so far is tired -- How do you folks handle such high doses?  .  Sumitriptan?  Yes, I've taken it for years for migraines and it does help abourt some CH.  Oxygen, the insurance company is going to balk, says my Dr, because it is very expensive and that there will be hoops to jump through.  I sent him the JAMA article on Oxygen therapy and from what I've heard here, it is fairly inexpensive.  Why would he be telling me that it's too expensive?  TWO monster headaches last night and a shadow all day today...

Title: Re: Medical Oxygen "very expensive"?
Post by Brew on Jun 8th, 2010 at 5:06pm
Because he's an a$$hole, that's why.

Medical oxygen can be expensive, but not near as expensive as Imitrex per abort.

If he doesn't advocate for you, get your own. Get a welder's tank, a high-flow regulator on e-bay, and an O2ptimask from the ch.com store link on the left.

Screw him - it's your life, and you should be required to give as little of it away to the pain as possible.

Title: Re: Medical Oxygen "very expensive"?
Post by QnHeartMM on Jun 8th, 2010 at 5:19pm
Jim hopefully with the articles you've provided him he will prescribe. I think doctors think of oxygen as something you're going to be connected to 24/7 and concentrators and such. That would be alot, but that's not what you need.

(And honestly it's not really any of his concern what the insurance company says. It's really between you and the insurance company.)

Not sure which company and plan you have. We have Cigna Open Access. I was able to go to MyCigna.com to see what they will approve for CH. Oxygen was on the list. Maybe you company has such an information resource.

Hope this helps.

Title: Re: Medical Oxygen "very expensive"?
Post by Callico on Jun 8th, 2010 at 5:51pm
My oxygen cost for the month, rental of two M tanks and regulators plus 4 E tanks, cost less than one shot of Imitrex.  Your Dr needs to get an education or quit prescribing.

Jerry

Title: Re: Medical Oxygen "very expensive"?
Post by Jim L on Jun 8th, 2010 at 7:55pm
Thanks!  I will go the route of the welder's tank.  I have a friend who is a blacksmith, so I'm sure he can hook me up with a local source.  My dr has gone out of his way to get me more sumitriptan and has stayed in touch with me via email since I saw him last week. Maybe he is thinking O2 concentrator and I have seen that they are enormously expensive.  I'll touch base with him to make sure he's not thinking along that line. 

Title: Re: Medical Oxygen "very expensive"?
Post by Guiseppi on Jun 8th, 2010 at 8:09pm
Yeah my guess is you're right and he's thinking a concentrator. When my insurance wasn't paying for the 02, it cost me $4.25 a month for each E-tank I rented, and $11-$13 each refill. Since each tank bought me up to 6 aborts, came to about $3 per attack. A bargain basement, red Tag, Blue Light special for sure! ;)

Joe

Title: Re: Medical Oxygen "very expensive"?
Post by Skyhawk5 on Jun 8th, 2010 at 8:38pm
You should call your insurance and ask them about O2 for CH, you may just teach the Doc something. It sounds like the Doc isn't sure how to do it.

Good luck, Don

Title: Re: Medical Oxygen "very expensive"?
Post by Skull Buster on Jun 8th, 2010 at 8:56pm

Guiseppi wrote on Jun 8th, 2010 at 8:09pm:
Yeah my guess is you're right and he's thinking a concentrator. When my insurance wasn't paying for the 02, it cost me $4.25 a month for each E-tank I rented, and $11-$13 each refill. Since each tank bought me up to 6 aborts, came to about $3 per attack. A bargain basement, red Tag, Blue Light special for sure! ;)

Joe


6 aborts on an E tank? WOW!! I got 2 aborts off my first tank and 3 off the second one. 6 would be great :)

Title: Re: Medical Oxygen "very expensive"?
Post by Guiseppi on Jun 8th, 2010 at 11:18pm
I use it a little different then most...I use a demand valve...I empty my lungs....take as deep a hit off the reg as I can...and hold it up to a minute...repeat! Takes about 300-400 pounds per hit. It wouldn't work for those who have to hyperventilate but works great for me.  ;)

Joe

Title: Re: Medical Oxygen "very expensive"?
Post by Chad on Jun 9th, 2010 at 9:26am

Brew wrote on Jun 8th, 2010 at 5:06pm:
Because he's an a$$hole, that's why.

Medical oxygen can be expensive, but not near as expensive as Imitrex per abort.

If he doesn't advocate for you, get your own. Get a welder's tank, a high-flow regulator on e-bay, and an O2ptimask from the ch.com store link on the left.

Screw him - it's your life, and you should be required to give as little of it away to the pain as possible.
Bingo!!!

My "M" tank cost me $36 per refill.  There is no tank fee and they even give me a metal frame to keep it upright.  If I get two 6mg Trex shots (which I actually get 6 shots because of the tip), i'm spending $15 per refill with insurance.  That tanks could last 10 or more hits which to me is well worth it minus the drugs.  It all depends on the flow rate and amount of time using it.  I'd stick with the O2 and do it yourself if the doctor doesn't cooperate.

Title: Re: Medical Oxygen "very expensive"?
Post by neuropath on Jun 9th, 2010 at 11:07pm
Joe, sounds like free-diving practice but I do exactly the same. Works every time for me too.

Title: Re: Medical Oxygen "very expensive"?
Post by Skull Buster on Jun 9th, 2010 at 11:41pm
yeah Joe, I'll have to remember that. I'm hoping I'm out of cycle. I'ts been over 8 weeks!! >:(  No shadows at all today.

Title: Re: Medical Oxygen "very expensive"?
Post by Guiseppi on Jun 10th, 2010 at 11:18am
Crossing my fingers for ya skull. ;) Always assume this headache is the last one of the cycle....and always keep the 02 close at hand in case it aint!!!

Joe

Title: Re: Medical Oxygen "very expensive"?
Post by Jim L on Jul 3rd, 2010 at 12:22pm
Oxygen now in place for 2 weeks.  Lo and behold, my insurance co-pay on an "M" tank is less than $5.   I need to learn to "go past" the end of the pain -- I think I've stopped too early late in the night once the pain has gone away only to wake up an hour later with another CH.  I'm learning...    Jim

Title: Re: Medical Oxygen "very expensive"?
Post by Mosaicwench on Jul 3rd, 2010 at 5:11pm

Jim L wrote on Jul 3rd, 2010 at 12:22pm:
Oxygen now in place for 2 weeks.  Lo and behold, my insurance co-pay on an "M" tank is less than $5.   I need to learn to "go past" the end of the pain -- I think I've stopped too early late in the night once the pain has gone away only to wake up an hour later with another CH.  I'm learning...    Jim


Glad to hear it's working and you are learning the ins and outs of what works for you.  Another member who can advocate honestly that O2 is not expensive.  Congratulations!

Title: Re: Medical Oxygen "very expensive"?
Post by Guiseppi on Jul 3rd, 2010 at 6:27pm
If it doesn't screw with your sleep, I drink a sugar free Red Bull with my oxygen, seems to help with the come backers.

Joe

Title: Re: Medical Oxygen "very expensive"?
Post by Lettucehead on Jul 3rd, 2010 at 8:08pm
Sometimes, I'm thinking that drs may not prescibe a medication just because they're unfamiliar with how to prescibe it and/or  what to write for and/or how much and/or where to get it.

It's an understandable but unfortunate situation for us with CH who need o2 scripts from drs who may not feel comfortable with writing for prescriptions that they're unsure of. 

That's why, in alot of ways, we need to be our own advocates, like you did, to get what we need to help our CH.

Good for you, Jim, and I'm glad it's helping!   :)

Title: Re: Medical Oxygen "very expensive"?
Post by Batch on Jul 3rd, 2010 at 11:37pm
This is an excellent post on the cost of oxygen therapy.  It's great to see so many have figured out the cost per abort with oxygen therapy is far less than any method of using triptans...  and no side effects either.

During my low cycles (3 to 4 attacks a week) and that's most of the time, I average 30 aborts with an M-size oxygen cylinder.  My copay after insurance is $6 per cylinder and I have my own regulators, so that makes my average cost per abort 20 cents.

Jim, an increase in the frequency of your cluster headaches after starting oxygen inhalation therapy is normal.  It can be due to re-attacks.  We've data on over 600 aborts with oxygen therapy with 366 aborts at flow rates that support hyperventilation that clearly indicates they go away after a few weeks. 

We defined a re-attack as another cluster headache that occurs 15 to 45 minutes after a successful abort with this method of oxygen inhalation therapy.  We think this happens because this method of oxygen therapy works so fast it aborts the pain of the cluster headache, but the oxygen time is so short, it doesn't abort the triggering mechanism. 

When the effects of hyperoxia and respiratory akalosis from using this method of oxygen inhalation therapy dissipate, (this can take from 15 to 30 minutes) and the triggering mechanism is still active, the cluster headache returns.  Fortunately, a re-attack is just another cluster headache and easily aborted in a few minutes with this method of oxygen therapy.

A simple way to avoid re-attacks is to stay on oxygen therapy long enough to bring your total oxygen time up to 15 minutes. 

In other words, if it takes 5 minutes to abort your cluster headache at flow rates ≥ 25 liters/minute, spend another 10 minutes breathing at a more normal rate of 10 to 12 liters/minute. 

Our data on folks who used a flow rate of 15 liters/minute and averaged over 15 minutes to abort their cluster headaches indicate the incidence of re-attacks was virtually zero.  Most of them did have regular cluster headaches every 2 to 4 hours during their peak 12 hour period each day, but this pattern was present before they began this method of oxygen therapy.

An increase in the frequency and intensity of your cluster headaches can also be due to a low arterial pH (too much acid).  When I go into a high cycle my arterial pH is almost always low.  I measure my saliva pH as an analog of my arterial pH with pH test strips three times a day to obtain a daily average. When I take a pH reading at the start of a cluster headache, it's always lower than my daily average.

The following chart shows the results of a two week study of my saliva pH data measured during a high cycle.  I only collected pH data on the first cluster headache that woke me up each night.

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The green line was my daily average pH.  The red dots and lines were the pH readings taken as soon as I woke up with a cluster headache.  The blue dots and lines represent the second pH reading taken 5 minutes after I had aborted the cluster headache and completed the oxygen therapy at flow rates that support hyperventilation. 

As you can also see, this method of oxygen therapy elevated my saliva pH an average of 0.4 after each oxygen therapy session back up to my daily average.  My average abort time during these sessions was 4 to 5 minutes.

I also used a finger pulse oximeter during this study.  As you can see my oxygen saturation was always low around 93% SpO2 when I woke up with a cluster headache, and near 100% after oxygen therapy.

Based on the above data, when I go into a high cycle, I take 3 to 4 calcium citrate tablets with vitamin D, magnesium and zinc washed down with fresh homemade lemonade.  This regimen acts as a buffer on the gastric juices in the stomach with the ultimate result, an elevation in arterial pH as measured with pH test strips that show my saliva pH has risen...  This regimen also breaks my high cycles in 12 to 24 hours...  Hope this helps.

Take care

V/R, Batch

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