Oxygen set up

[Vipul]

Hello, I recently tried Oxygen therapy and it works to abort my attacks. I have bought 4 10L tanks, a regulator with a humidifier bottle and a non re breather mask. I have the following questions. 

1. Is the humidifier bottle required? I don't see mist people using it. 

2. 0 to 25 lpm regulators are not available here in India. The ones available are supposed to go to 15 lpm but the humidifier bottle starts leaking O2 beyond 5 lpm. Everyone I speak to suppliers/ medical staff, they insists no one needs more than 5 lpm. Ive stopped even trying to explain to people anymore. Can someone please give me a link for a good 0 to 25 lpm regulator. 

3. Or, should I just get a 0 to 15 lpm regulator without the humidifier bottle? 

I'm so glad I finally tried the O2 therapy. The constant fear of the next attack is gone coz I know I'll abort it before it reaches extreme levels. 

Pain free wishes to all. 

Vipul Nair

Har Har Mahadev 

[Shaun brearley]

You don't need the humidifier buddy . 15lmp regulator should do you . But if you can get 1 that goes up to 25lpm that would be even better 

[Vipul]

53 minutes ago, Shaun brearley said:

You don't need the humidifier buddy . 15lmp regulator should do you . But if you can get 1 that goes up to 25lpm that would be even better 

Thanks, any recommended regulator source?

 

[CHfather]

2 hours ago, Vipul said:

I have bought 4 10L tanks

VERY happy that O2 is working for you!!!!!

If by 10L you mean 10 liters, the tanks must be bigger than that!

2 hours ago, Vipul said:

Can someone please give me a link for a good 0 to 25 lpm regulator.

There are two basic kinds of regulators (at least in the US).  What kind of regulator you get depends on how it connects to your tank.  If your regulator looks like this, it is CGA-870. 

If it looks like this, it is CGA-540. 

If you have a CGA-540 connection, you can also use a welding O2 regulator.  We could give you ideas for where to get any of these in regulators in the US (Amazon or EBay, for example), but will that help you there?  Can you google and find them?  As you suggest, if the 0-15 reg does its job when you remove the humidifier, you are probably okay with that.  As shaun' says, most people don't need the humidifier.  I would suggest that you read through the section on oxygen in this file for some thoughts that might be valuable: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

Edited December 1, 2021 by CHfather

[Vipul]

20 minutes ago, CHfather said:

VERY happy that O2 is working for you!!!!!

If by 10L you mean 10 liters, the tanks must be bigger than that!

There are two basic kinds of regulators (at least in the US).  What kind of regulator you get depends on how it connects to your tank.  If your regulator looks like this, it is CGA-870. 

If it looks like this, it is CGA-540. 

If you have a CGA-540 connection, you can also use a welding O2 regulator.  We could give you ideas for where to get any of these in regulators in the US (Amazon or EBay, for example), but will that help you there?  Can you google and find them?  As you suggest, if the 0-15 reg does its job when you remove the humidifier, you are probably okay with that.  As shaun' says, most people don't need the humidifier.  I would suggest that you read through the section on oxygen in this file for some thoughts that might be valuable: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

Thanks CHfather, they call them 10L tanks here as that is the water capacity. It holds 1500 litres of O2. 

I think my regulator is CGA 870. Attaching pics for your reconfirmation. 

I need to check if I can remove the humidifier from the regulator. If not, I'll get another one. Maybe import one from the US. Do you have a link? 

Thanks and I'll read the section on oxygen. 

Vipul

Har Har Mahadev

[CHfather]

This looks to me like a 540-type connection.  I don't know whether it's the same classification system for regulators in India. Maybe @Racer1_NC or @xxx can confirm this.  I see that www.indiamart.com has a lot of regulators.  That's a business-to-business site (not business to consumer), so you might not be able to buy there, but there is contact information for all the suppliers.  (There might be a better site where you could buy directly; this is just what I saw with a quick look.)  

As the oxygen section says, you can use either a medical oxygen regulator or a welding regulator with that type of connection.  Here's a medical O2 one that goes up to 25 lpm from Amazon in the US: https://www.amazon.com/Regulator-CGA-540-Responsive-Respiratory-120-1205/dp/B07ZS9JK7P/ref=sr_1_21?crid=292UW7S35X6N3&keywords=oxygen+regulator+540+cga&qid=1638375197&sprefix=oxygen+regulator+540%2Caps%2C216&sr=8-21

You can use almost any of the welding regs shown at Amazon -- search under oxygen regulator 540.  You'd want to be sure to get one that has a barbed fitting  to attach your mask tubing to, such as what you can see on the left side of this one: https://www.amazon.com/IMAGE-Welding-Welder-Regulator-Cutting/dp/B00JP9WIF2/ref=sr_1_10?crid=292UW7S35X6N3&keywords=oxygen+regulator+540+cga&qid=1638375197&sprefix=oxygen+regulator+540%2Caps%2C216&sr=8-10

I wouldn't rely on anything I say here until it's confirmed by Racer, xxx (Batch), or another of the true experts here.  

[Racer1_NC]

It appears to be the same....but I admit I can't say for 100% certain.

From the India Amazon pages: https://www.amazon.in/Flameco-Oxygen-Regulator-Single-Gauge/dp/B07NQHXPBV/ref=dp_fod_1?pd_rd_i=B07NQHXPBV&psc=1

There are more listed as being available in your country on Amazon India. Take a look there.....

[Shaun brearley]

I've looked on Amazon India and their are plenty of regulators you can buy on the site buddy . You still haven't given me your ADDRESS for triptan injections , if you still want them? 

[Vipul]

8 hours ago, Shaun brearley said:

I've looked on Amazon India and their are plenty of regulators you can buy on the site buddy . You still haven't given me your ADDRESS for triptan injections , if you still want them? 

Hello, I can see many on Amazon India but none that says 0 to 25 lpm. Most don't even specify the lpm and the ones that do, are 0 to 15. I'll look again. 

Re the triptans, can't thank you enough buddy, my address is, 

Vipul Nair, A48 (ff) Hauz Khas, New Delhi 110016, India. 

Do let me know what I owe you and I'll find a way to send it. 

God bless you brother. 

Vipul 

Har Har Mahadev 

 

[Vipul]

9 hours ago, Racer1_NC said:

It appears to be the same....but I admit I can't say for 100% certain.

From the India Amazon pages: https://www.amazon.in/Flameco-Oxygen-Regulator-Single-Gauge/dp/B07NQHXPBV/ref=dp_fod_1?pd_rd_i=B07NQHXPBV&psc=1

There are more listed as being available in your country on Amazon India. Take a look there.....

Hello, I can see many on Amazon India but none that says 0 to 25 lpm. Most don't even specify the lpm and the ones that do, are 0 to 15. I'll look again. This one too does not specify lpm. 

[Vipul]

10 hours ago, CHfather said:

This looks to me like a 540-type connection.  I don't know whether it's the same classification system for regulators in India. Maybe @Racer1_NC or @xxx can confirm this.  I see that www.indiamart.com has a lot of regulators.  That's a business-to-business site (not business to consumer), so you might not be able to buy there, but there is contact information for all the suppliers.  (There might be a better site where you could buy directly; this is just what I saw with a quick look.)  

As the oxygen section says, you can use either a medical oxygen regulator or a welding regulator with that type of connection.  Here's a medical O2 one that goes up to 25 lpm from Amazon in the US: https://www.amazon.com/Regulator-CGA-540-Responsive-Respiratory-120-1205/dp/B07ZS9JK7P/ref=sr_1_21?crid=292UW7S35X6N3&keywords=oxygen+regulator+540+cga&qid=1638375197&sprefix=oxygen+regulator+540%2Caps%2C216&sr=8-21

You can use almost any of the welding regs shown at Amazon -- search under oxygen regulator 540.  You'd want to be sure to get one that has a barbed fitting  to attach your mask tubing to, such as what you can see on the left side of this one: https://www.amazon.com/IMAGE-Welding-Welder-Regulator-Cutting/dp/B00JP9WIF2/ref=sr_1_10?crid=292UW7S35X6N3&keywords=oxygen+regulator+540+cga&qid=1638375197&sprefix=oxygen+regulator+540%2Caps%2C216&sr=8-10

I wouldn't rely on anything I say here until it's confirmed by Racer, xxx (Batch), or another of the true experts here.  

Thanks so much for all the info. I think I first need to figure out for sure which reg I need the one at Amazon looks nice. I can have someone bring it for me. 

[CHfather]

1 hour ago, Vipul said:

Hello, I can see many on Amazon India but none that says 0 to 25 lpm. Most don't even specify the lpm and the ones that do, are 0 to 15. I'll look again. This one too does not specify lpm. 

That one (the Flamenco brand) is a welding regulator.  LPM is not an issue for welding, so the gauges don't show LPM and the product specifications wouldn't include it.  The good thing is that you have a very wide range of lpm available to you from a welding regulator, the very small challenge is that you have to fiddle with the controls to find the lpm that works best for you (rather than just clicking an an lpm setting as you can do with a medical regulator.  As I say, this is a very small issue that people quickly adjust to.  The first link I provided in my post above is to a medical O2 regulator -- you can see that they look quite different.  I think most of us would suggest that a welding regulator is the way to go -- as long as it fits onto your tank.  That's not an issue in the US and many other other places, where both medical regulators for larger tanks and welding regulators for all tanks are CGA 540.  I would assume the same would be true in India.

I hope you have read that oxygen section in that document I linked you to.  Some tips there about strategies and mask preparation that might speed up your aborts.

[Vipul]

1 hour ago, CHfather said:

That one (the Flamenco brand) is a welding regulator.  LPM is not an issue for welding, so the gauges don't show LPM and the product specifications wouldn't include it.  The good thing is that you have a very wide range of lpm available to you from a welding regulator, the very small challenge is that you have to fiddle with the controls to find the lpm that works best for you (rather than just clicking an an lpm setting as you can do with a medical regulator.  As I say, this is a very small issue that people quickly adjust to.  The first link I provided in my post above is to a medical O2 regulator -- you can see that they look quite different.  I think most of us would suggest that a welding regulator is the way to go -- as long as it fits onto your tank.  That's not an issue in the US and many other other places, where both medical regulators for larger tanks and welding regulators for all tanks are CGA 540.  I would assume the same would be true in India.

I hope you have read that oxygen section in that document I linked you to.  Some tips there about strategies and mask preparation that might speed up your aborts.

Hi, yes I read the link and also saw the video on breathing techniques. Helps a lot. 

Re the regulator, thanks for the info. I'll look for a welding regulator if that's better. Don't think the lpm reading matters much.

Thanks 

Vipul 

[Shaun brearley]

My Lpm is only 15 and it works fine for my so don't panic if you can't find one at 25lpm buddy 

[Vipul]

1 hour ago, Shaun brearley said:

My Lpm is only 15 and it works fine for my so don't panic if you can't find one at 25lpm buddy 

Hello, 15 lpm is also working for me as of now. In fact even lower. I've replaced the small bag on the mask with a big bag. I start inhaling when it's full. So even at 10 lpm I get enough oxygen for 10 to 15 breaths.

In your experience does O2 always work to abort the attacks? Or does you get used to it with long term use? Do you use lesser oxygen as you learn to breath correctly? 

thanks, 

Vipul 

[Shaun brearley]

As long as I hit the o2 before attack hits it's peak the o2 always aborts my attacks and I've been using o2 for about 5  years know. But I also use energy drinks of a night time before i hit the o2 and black coffee during the day before I hit the o2 

[CHfather]

7 hours ago, Vipul said:

I've replaced the small bag on the mask with a big bag. I start inhaling when it's full. So even at 10 lpm I get enough oxygen for 10 to 15 breaths.

This isn't clear to me.  The bag (the smaller one that you had before) should fill up fairly quickly when you turn on the O2.  Then when you inhale, the bag should empty, or at least mostly empty. Then it should fill up again when you stop inhaling and are exhaling. The flow rate determines how fast the bag fills -- the higher the lpm, the faster the bag fills.  That is the only relevant aspect of flow rate -- it doesn't affect how much O2 you take in when you inhale.  If the bag does not fill fast enough that it is ready for your next inhalation, you need a higher flow rate.  It is called a "reservoir bag," because it holds the O2 until you inhale it.  Having a larger bag on there means that you have extra O2 for each inhale, which is fine, but you want to start inhaling as soon as there's enough O2 for you to take a full, deep breath, and not wait for a very large bag to fill.  I'm just not really comprehending what you mean by "even at 10 lpm I get enough oxygen for 10 to 15 breaths."

7 hours ago, Vipul said:

In your experience does O2 always work to abort the attacks? Or does you get used to it with long term use? Do you use lesser oxygen as you learn to breath correctly? 

O2 virtually always works.  For some people, it is less effective when the pressure in the tank is low (when there is less O2 in the tank).  There might be times when it doesn't work, or takes longer to work, but the value of using O2 doesn't really decay over time.  Yes, you will use less O2 when you find the breathing strategy that works best for you -- and there is also some evidence that it is just less effective in the first few uses than it becomes after that.

[Vipul]

10 hours ago, CHfather said:

This isn't clear to me.  The bag (the smaller one that you had before) should fill up fairly quickly when you turn on the O2.  Then when you inhale, the bag should empty, or at least mostly empty. Then it should fill up again when you stop inhaling and are exhaling. The flow rate determines how fast the bag fills -- the higher the lpm, the faster the bag fills.  That is the only relevant aspect of flow rate -- it doesn't affect how much O2 you take in when you inhale.  If the bag does not fill fast enough that it is ready for your next inhalation, you need a higher flow rate.  It is called a "reservoir bag," because it holds the O2 until you inhale it.  Having a larger bag on there means that you have extra O2 for each inhale, which is fine, but you want to start inhaling as soon as there's enough O2 for you to take a full, deep breath, and not wait for a very large bag to fill.  I'm just not really comprehending what you mean by "even at 10 lpm I get enough oxygen for 10 to 15 breaths."

Hi, I'm sorry if I was not clear. 

The original bag on my mask was very small and would fill up instantly at 15 lpm flow. However when I inhaled, the oxygen in the small bag would empty very quickly not giving me enough O2 for a full deep breath. So, I replaced the small bag with a bigger bag. I wait for it to fill up at 10 lpm. It takes about 20 to 30 seconds. Then I start to inhale deep emptying the bag maybe 50%. The bag continues to fill as I close the mouth piece with my thumb. As I exhale deep, the bag almost fills up again. Continuing to do this gets me a few deep full breaths at 10 lpm. When I see the bag start to empty, I may increase the lpm to 15. So basically, I am using a big reservoir bag and I start off with it full. 

O2 virtually always works.  For some people, it is less effective when the pressure in the tank is low (when there is less O2 in the tank).  There might be times when it doesn't work, or takes longer to work, but the value of using O2 doesn't really decay over time.  Yes, you will use less O2 when you find the breathing strategy that works best for you -- and there is also some evidence that it is just less effective in the first few uses than it becomes after that.

Super, that's great to hear. It has been a blessing for me. I was miserable few weeks ago. I am already using lesser O2 than when I started. All the advise, especially yours, on this forum is fantastic. 

Thanks, 

Vipul

 

[Vipul]

On 12/2/2021 at 2:49 PM, Shaun brearley said:

As long as I hit the o2 before attack hits it's peak the o2 always aborts my attacks and I've been using o2 for about 5  years know. But I also use energy drinks of a night time before i hit the o2 and black coffee during the day before I hit the o2 

So nice to hear that I may not have to bear that unbearable pain again. Have so far not tried energy drinks and coffee. 

So basically the sumatriptan should only be used when O2 is not accessable I guess.

[Shaun brearley]

Yes triptans can give you rebound attacks that are fair more painful plus can extent your cluster cycle buddy that's the reason I don't use them anymore 

[Vipul]

17 hours ago, Shaun brearley said:

Yes triptans can give you rebound attacks that are fair more painful plus can extent your cluster cycle buddy that's the reason I don't use them anymore 

Noted, so I'll use them only when O2 is not accessible. 

Thanks. 

[CHfather]

1 hour ago, Vipul said:

Noted, so I'll use them only when O2 is not accessible. 

I think opinions vary about this.  There's no doubt that triptan overuse will cause rebounds and perhaps extend cycles or make attacks worse.  On the other hand, if you need one for a "breakthrough" attack where for some reason O2 isn't doing the job, I wouldn't hesitate.  That's particularly true if you are injecting only 2 or 3 mg instead of the 6 that are in the standard injector.  See this thread: https://clusterbusters.org/forums/topic/2446-extending-imitrex/

[jon019]

2 hours ago, CHfather said:

I think opinions vary about this.  There's no doubt that triptan overuse will cause rebounds and perhaps extend cycles or make attacks worse.  On the other hand, if you need one for a "breakthrough" attack where for some reason O2 isn't doing the job, I wouldn't hesitate.  That's particularly true if you are injecting only 2 or 3 mg instead of the 6 that are in the standard injector.

....my opinion based on personal experience matches this. only eventually used Zomig NS (Sumatriptan too many nasty side effects) for absolute last resort. rode out more than a few hits for fear of rebounds with overuse (btw, noone knows what "overuse" is as we all are different).  99% effective, never any sign of a rebound HA, some mental support knowing i had it available if absolutely necessary. knowing now what i didn't know then i would have used more frequently....but, insurance provided damn few, and i may be talking about rebounds from hell instead. 

...point being....and true of many meds....find the least amount that gives the required effect. you are never gonna know what that amount is for you w/o self evaluation. some are more risk averse (like me) than others. your choice.....

Edited December 4, 2021 by jon019

[Vipul]

Hello, 

Started using O2, 3 weeks back and it's great to be able to abort an attack before the pain becomes intense. 

What I now notice is that because I abort the attacks immediately, I don't know if the attack was mild or severe. In other words I will not know if the cycle is tapering down till the attacks actually stop. Usually for me the pain level lowers as the cycle is coming to an end.

Now when my wife asks me if it was a bad one or mild one, I don't know what to say

 I've been kicking myself for not having tried the O2 before. I didn't need to endure all that crazy pain that I did for the last 3 years. It was so severe that I planned to exit life on more than a few occasions. 

Really grateful to all the wonderful people in this forum for being angels guiding people like me all the time. 

love and pain free wishes to all. 

Har Har Mahadev 

[spiny]

So happy for your positive results Vipul! So very nice not to know how bad it would be, no?