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New CH.com Forum › Cluster Headache Help and Support › Medications, Treatments, Therapies › O2 Questions

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O2 Questions (Read 3712 times)

Freddyz

CH.com Newbie

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Posts: 20
Alexandria, Va
Gender: male

O2 Questions
Aug 1^st, 2012 at 9:02am

I'm trying to get into a Dr. to prescribe the O2. My neruo is on vacation and the other Drs at his practice aren't much for prescribing me something over the phone without his approval. I've read the O2 page and have a few questions.
1) Once I get a script, where can I get this stuff. I don't think my regular pharmacy carries it?
2) what size tank should I get? It sounds like at the rate being suggested, one could blow through a tank pretty quickly. I'm not even sure if it will work for me so I'd like to get something that would last me about a week aborting several CHs a night. If it works, I'll look into something larger?
3) for the larger tanks is there a delivery service or something?
4) where can you purchase the special regulators (15 to 25 lpm)? I don't want to have to wait for an on-line purchase so I was hoping to find a store local? Do I need to look for a medical supply store or something like that?

Thanks

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wimsey1

CH.com Alumnus

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I Love CH.com!

Posts: 2457
MA
Gender: male

Re: O2 Questions
Reply #1 - Aug 1^st, 2012 at 9:27am

Freddyz wrote on Aug 1^st, 2012 at 9:02am:

I'm sure someone will jump in to add more info but I wanted to get you started:

1) Once I get a script, where can I get this stuff. I don't think my regular pharmacy carries it?

Google for your area. O2 is sold by medical supply companies and there should be a couple near you who will deliver. Apria is nationwide also

2) what size tank should I get? It sounds like at the rate being suggested, one could blow through a tank pretty quickly. I'm not even sure if it will work for me so I'd like to get something that would last me about a week aborting several CHs a night. If it works, I'll look into something larger?

I have two sizes, one smaller tank (an E tank) which is about 700 liters, and a larger M or J tank (which is about 2600 liters). The large tank is too big to move around, that's what the E tanks are for. I also keep an E tank by my bed for those nighttime visits.

3) for the larger tanks is there a delivery service or something?

My company takes my insurance and charges ke a flat fee of $40/month. That's as many refills and deliveries I need per month.

4) where can you purchase the special regulators (15 to 25 lpm)? I don't want to have to wait for an on-line purchase so I was hoping to find a store local? Do I need to look for a medical supply store or something like that?

Some have found them on E-Bay! I bought mine through LifeGas. Obviously E-Bay would be cheaper.

Thanks

You're most certainly welcome! Blessings. lance

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Freddyz CH.com Newbie Offline Posts: 20 Alexandria, Va Gender:	Re: O2 Questions Reply #2 - Aug 1^st, 2012 at 10:01am Thanks Lance. Dr. faxed me a script and I just got off the phone with Respacare. I think I may be able to actually take delivery today. Told them about the high flow rate and non-rebreather mask and they are able to accomodate. I'll discuss the tank size with the rep when she calls back. Thanks
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Batch

CH.com Alumnus

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Control The Beast With
O2 & D3 You Must

Posts: 3708
Bremerton, WA
Gender: male

Re: O2 Questions
Reply #3 - Aug 1^st, 2012 at 4:19pm

Hey Fred,

Lance has given you some great gouge... I lived in the Northern VA area for over 20 years and found Roberts Home Medical has much better rates for home oxygen therapy than Apria...

Before the anti-inflammatory regimen, oxygen therapy at flow rates that support hyperventilation was my only means of controlling my chronic CH... ~ 25 to 40 liters/minute...

At an average of 3 CH/24 hours, I would go through 3 M-size oxygen cylinders a month. The cost was $30/M-size cylinder without insurance. I had a 20% insurance copay so my monthly cost for the 3 M-size oxygen cylinders was $18.

I got that price because I had my own regulator and non-rebreathing oxygen mask (a $27.50 O2PTIMASK™ from here at the CH.com store). All home oxygen providers will charge a monthly rental fee for the regulator... $25 to $50...

A Welder's O2 regulator from Harbor Freight Tools shown below for $35 is a great deal and this regulator will work just fine on the larger CGA-540 medical oxygen cylinders as well as welders O2 cylinders. Moreover, it will deliver all the flow rate you'll ever need...

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

The normal routine is for your physician's office to fax the Rx to a local home oxygen provider. Suggest Roberts at the following link:

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

How the prescription is written is very important to prevent a lot of delays and problems.

The following examples have worked very well with several CH'ers all over the US... and me in Virginia.

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

If the condition being treated, mask type and flow rates are not clearly specified, nearly all insurance companies will assume a COPD disorder and you'll get a nose cannula and a regulator that will only deliver 6 to 8 liters/minute. Moreover, they will come back to your physician and demand an oxygen saturation test.

Accordingly,when you do ask your doctor or neurologist for a prescription for oxygen therapy, make sure the Rx reads like the following:

“Oxygen Therapy with a non-rebreather mask at a flow rate of 12 to 15 liters/minute for up to 20 minutes, up to 12 times a day for the pain of cluster headache attacks.”

Also tell the physician writing the Rx you want the large home oxygen cylinders M/H/K.

When your physician's office has faxed in the Rx to Roberts, call Roberts to specify you want an "Flowmeter" type oxygen regulator with your M-size oxygen cylinders. Make sure they understand you are a cluster headache sufferer...

Roberts will deliver within 24 hours for most prescriptions and if you call them around 7:30 to 8 a.m. before the delivery trucks go out on their routes, you can get it the same day.

Read my post at the following link, it explains why we need higher oxygen flow rates than 15 liters/minute:

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Take care and don't be afraid to ask questions.

V/R, Batch

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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Freddyz

CH.com Newbie

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Posts: 20
Alexandria, Va
Gender: male

Re: O2 Questions
Reply #4 - Aug 2^nd, 2012 at 7:06am

Thanks Lance and Batch. I got the script yesterday morning and had 3 E takes delivered last night. I was able to abort 2 CHs last night with the wrong mask. The guy that delivered it from Respicare was really helpful and very familiar with CHers. He's going to drop the non-rebreather mask at my house today. My only disappointment is that I'm going to have to go with another company because the largest tank they offer is an E and at this rate I'll need a delivery every few days. As I mentioned in other posts, I've tried O2 before and it didn't work. Last night I caught both CHs very early on, and was able to abort both. I'm interested in seeing if it works when I'm in the middle of a really nasty one (actually, It would be great if I never had the opportunity to figure that one out). I need to read up on the best way to administer (how fast should I breath, should I be breathing through my nose or mouth...) but this is looking good so far. I'll get in touch with Roberts to see about getting a larger tank and I'll look on-line for the regulator you've suggested.

Batch - BTW, I just finished the methylprednisolone pack and I swear it just made things worse. When I started the pack things didn't get better but as the doses reduced, my headaches got worse. I took my last dose this morning so I'm preparing myself for a shitty day. Also, my D3 test came back at 51 after several days on the regime. I've upped my dose to 20,000. Will keep you posted.

Finally, my blood test came back with slightly elevated white blood cell count. I read out here and on other sites that CHs can raise your WBC. Any experience with that? I've said this before but I'm just amazed at how helpful everyone is and the time some of you guys spend helping others out.

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wimsey1

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Posts: 2457
MA
Gender: male

Re: O2 Questions
Reply #5 - Aug 2^nd, 2012 at 7:38am

Hey there, Freddyz, and congratulations on the aborts. Yes, the earlier we get to the CH the easier and faster it is to abort. I couple O2 with Monster or Red Bull. It seems to help. As for breathing techniques, I can play around with them when I'm in the early stages of a hit, but when I wake up with one, or it progresses, all I can do is breathe as rapidly and as deeply as I can. All tricks go out the window and it's just me and my shadow....err, beast. blessings. lance

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