Oxygen concentrators?

[CHMom]

Hi CH fam - Last week I convinced my neurologist to prescribe oxygen for me. I've never tried oxygen for my CHs before, and I'm praying that it works so that I can ease off the Relax, which I'm taking every day. My neurologist told me was going to prescribe an oxygen concentrator. I just googled this, and it's different from getting an O2 tank, which is what I was expecting. Does anyone have any experience using an oxygen concentrator? Tips? Advice? Thanks!

[CHfather]

Concentrator is not good. The O2 it creates contains too much room air; the liters per minute settings usually do not go high enough; and they're often noisy, which is one more thing you don't need during an attack.  Your neurologist should not really be prescribing the delivery method.  I'm concerned that s/he will also prescribe cannula instead of a non-rebreather mask (or fail to specify a non-rebreather mask). (When the supplier sees a concentrator prescribed, they are likely to think unless the prescription specifies it that you are a typical COPD-type patient, and they're likely to give you cannula instead of a non-rebreather mask.)

The prescription should read something like: "Oxygen therapy for cluster headache: 15-20 minutes at 15lpm using non-rebreather mask."  If you can get a prescription for 25 lpm, all the better.  The oxygen provider should -- but just as likely won't -- know what equipment is appropriate for CH.  You might have to educate them.  What you want is at least one large tank (an M or H tank) for home and at least one smaller tank (E tank) for portability (car/office).

Some people get by with a concentrator, at least in the early days of their CH, but it won't match the aborts you get with a cylinder.   

[CHMom]

Thanks, @CHfather. What you're saying is exactly what I was afraid of. Sigh. More wrangling with my neurologist. 

[ThatHurtsMyHead]

CHMom,

I Second CHFathers post.  I believe all home concentrators max out at 8 liters per minute (which is pretty useless for most of us).  For most people 15 LPM is the minimum to abort and 25 works best.  The only way to get high flow is to use O2 tanks.

I find using 25 LPM for the first 10 mins or so till the ramp up in pain sorta levels off.  Then I cut it down to 15 LPM till the pain stops.  Then I drop it to 10 LPM and breathe normally for 5 to 10 minutes post attack.  The extra time at the end of the attack reduces the likelihood that I get another attack back to back. 

PFW,

J

[dmlonghorn]

My setup is an M tank, with a non-rebreather mask and a 15 LPM regulator.

I'm currently experiencing foggy shadows that are becoming more "dense" (uncomfortable) as the days go on.

I use the hyperventilative method anywhere between 5-10 mins. The fog will clear, but for only maybe 15 mins before it settles back in.

Has anyone used a concentrator+canula in addition to their regular O2 to help supplement or prolong the benefits achieved after hitting the regular O2?

Now these are shadows I'm trying to address, not sure if all of the O2 aborting protocols apply to shadows as well as attacks.

Thanks,

DM

[Freud]

As a rule of thumb if the O2 works to clear it, stay on for at least 5-10 min after they are gone. 

[jon019]

Yo DM,

...gotta love them M tanks...you date an E-tank but ya marry an M.....

...I put away all thoughts  of what my life would have been like without OXYGEN for aborts as too scary to imagine. mostly worked great for hits but nothing for "shadows" of a hit...for that, energy drinks and/or naproxen helped...or just a grim determination that "this too shall pass"....

….have seen multiple reports of folks trying O2 as a preventive...usually at night to prevent nocturnals...do not recall hearing of success... but dang it's worth a try...

best

jon

[xxx]

I've had a welder's M-size O2 cylinder in my garage since June of 2010... That was before I developed and started taking the anti-inflammatory regimen with 10,000 IU/day vitamin D3 plus Omega-3 fish oil and the rest of the co-nutrients 10 October 2010.  I burned through the first and second M-size cylinders through September of 2010.  I picked up the 3rd refill in early October 2010.  It still has 1200 psi... and I actually do a little brazing (welding) and cutting at times...

An oxygen concentrator will work just fine if you use it fill a Redneck Oxygen Reservoir bag ahead of time... i.e., between hits...  Use the search tool at the top of the page and key in "Redneck"  You'll find the "How To" DIY and breathing procedures.  Save the canula and oxygen tubing as you'll need the tubing to fill the Redneck Reservoir bag from the concentrator.

Take care,

V/R, Batch

Edited February 5, 2019 by Batch

[CHfather]

"Redneck bag": https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/

 

[CHChris]

I have good success knocking out shadows with O2.  I have found that I can treat the shadows with a lower flow rate than a full-on attack. For me, that is 15LPM for shadows and 25-36 LPM for an attack. 

However, when things are really bad, I go through a LOT of oxygen.  I have an H tank in the house, an E tank in the car, and an M tank (welding oxygen) in the garage as a reserve just in case the O2 delivery gets held up.  It is not an understatement to say that oxygen has given me back my life. Things still get bad, but oxygen allowed me to be more functional from day to day.

In my experience treating shadows with O2, I have had to be persistent, as the shadows can get relentless.  I basically do the regular routine but at a lower flow rate.  This means staying on the oxygen for a few minutes after the shadows go away.   I will say, this isn't 100% effective.  Sometimes the shadows are just too bad, or come back too quickly. 

Energy drinks (ones with caffeine and taurine) do help a lot also.  It is best to combine the two treatments.

[Freud]

Could some one provide the amazon link for 25LPM regulator.  For an M tank. 

[FunTimes]

Here is one that goes up to 15LPM, I can not find the one that will go to 25LPM

https://www.amazon.com/Chad-Brass-Core-Oxygen-Regulator/dp/B00EU6NA7K/ref=sr_1_13?ie=UTF8&qid=1549462455&sr=8-13&keywords=CGA540+oxygen+regulator+25LPM

[FunTimes]

Found it!

https://www.amazon.com/gp/product/B00BXRBJG8/ref=oh_aui_search_asin_title?ie=UTF8&psc=1

[CHfather]

I'd suggest that you might as well get a welding regulator, which will go to 25 lpm and above.  The small issue is that it doesn't have any actual lpm settings, so you have to feel your way to the flow rate you want.  This is a very small issue. Maybe the $20 one at Amazon will work, but I guess I'd consider this one: https://www.amazon.com/Oxygen-Regulator-Harris-Large-Cutting/dp/B00WH3Q5N4/ref=sr_1_15?ie=UTF8&qid=1549467482&sr=8-15&keywords=oxygen+regulator+welding    A small issue that can become a bit of a hassle is that you want one with a barbed fitting like the one in this photo to attack your mask tube to.  Some don't provide that.  You can buy an adapter at a hardware store or online if you get a reg without it.

[xxx]

If you want a great oxygen regulator with a flow rate that will blow your shirt-tail out, give the FlotecO2 order desk a call and tell them you're a cluster headache sufferer and want one of their 0 to 60 liter/minute CGA-540 "InGage" oxygen regulators.  I've had one since 2005... They're fantastic.  Order it with a barb fitting for the Cluster O2 kit and single DISS fitting for an oxygen demand valve.  Cost ~ $190

625 West New York Street Indianapolis IN 46214-4911

www.floteco2.com

Phone: 317-273-6960 Fax: 317-273-6979

Order Desk: 800-401-1723

e-mail:

flotec@floteco2.com

Order Desk Fax: 1-800-515-9254

Of course I haven't used it since starting the anti-inflammatory regimen with 10,000 IU/day vitamin D3 and co-nutrients October of 2010... I do use it for oxygen therapy demos.

Take care,

V/R, Batch

Edited February 6, 2019 by Batch

[Freud]

9 hours ago, FunTimes said:

Found it!

https://www.amazon.com/gp/product/B00BXRBJG8/ref=oh_aui_search_asin_title?ie=UTF8&psc=1

Thanks funtimes I was having trouble finding the 25LPM myself. 

[Freud]

Thank you to everyone who replied to my question. I had to go with the affordable option this time around. Going to see if 25LPM helps better for the stubborn headaches that 15 doesn’t work for. I’ve been putting my extra cash towards mm growing. Now I’m isolating genetics and using agar dishes. Good genetics makes a huge difference. 

[Freud]

I have not tried it yet. I have tried the hyperventilating trick though with mixed success. I’m going to do higher flows and see what happens. Thankfully I never run out of O2. I have 3 m tanks and when I get down to two I call for refills. They come same day or next day. I am super lucky in that respect.