Oxygen set up

[Shaun brearley]

Vipul so glad you have found that the 02 works for you buddy . It defiantly makes life more bearable.  It took me years for my Neuro to priscibe it for me . It will become your best friend for life my friend.  . I told my missus the other day that if any1 tried to take it off me know I'd probably comit murder . 

[Vipul]

5 hours ago, spiny said:

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

 

Thanks spiny. 

[jon019]

18 hours ago, Vipul said:

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 that's a good "problem" to have! similar success here with O2, which made the decision about when to use the last resort triptan harder. in my case had to use a combo of factors to know when. kinda depends on your cycles...mine 5-8 weeks on/off for yrs so knew just about where i was in most cycles (much harder when turned chronic, but cycles within that too). the worst hits (except for very last) were midcycle, always on high alert then. i knew only O2 needed for start and end of cycle hits. other factors: the faster a hit came on the more alert to a last resort screamer i had to be....and last but totally unexplainable, sometimes i could just tell...there was a certain  "exquisiteness" of pain that was missing from most other hits. got pretty good at it and rarely missed....but always rueful since it meant being an "experienced" clusterhead.....which noone aspires to. may you continue to rapidly abort and not have to worry about "how bad" this one is gonna be 

...thank you for your reports....somebody somewhere is sure to be helped reading your experiences....

Edited December 7, 2021 by jon019

[Vipul]

8 hours ago, Shaun brearley said:

Vipul so glad you have found that the 02 works for you buddy . It defiantly makes life more bearable.  It took me years for my Neuro to priscibe it for me . It will become your best friend for life my friend.  . I told my missus the other day that if any1 tried to take it off me know I'd probably comit murder . 

Thanks, my neuro didn't even prescribe it to me. In fact he laughed when I told him about the 15 lpm high flow oxygen. He said get one if those O2 cans if you want to try oxygen. It's very shocking how little even specialised neuros know about this disorder. Folks at clusterbusters know way more than any neurologist knows about cluster headaches. 

I also cannot imagine life now without O2. In fact I haven't left home since I got on to it. I don't want to be far from my O2 when an attack starts. The cylinders I have are not very portable. They are about 4 ft tall and weights about 15 kg with an O2 capacity of 1500 ltrs. I plan to keep one in my car. 

 

[jon019]

3 minutes ago, Vipul said:

In fact I haven't left home since I got on to it. I don't want to be far from my O2 when an attack starts.

...ok, i get it...but that's only part way to a "normal" life. sounds like you have something like an m-60 tank (my home stash) which is way more portable than most welding O2 tanks, but still pretty cumbersome. i went to work every day for over 30 yrs with an e-tank on wheels for the office and one in the car for ANYWHERE else. i know you may not have ready access to one and the refilling... but you really should look into getting one or more... or similar. is life changing!

 

[Shaun brearley]

True about the so called specialists  my friend .my Neuro would be a lot more happier if I wasn't his his list he has no interest. So at last meeting  I told him he was a total asrehole and that I want a new Neuro.  Don't lock yourself away buddy you can get portable 02 tanks with carry case that I take everywhere with me even when out of cycle just in case.  

 

[Vipul]

45 minutes ago, Shaun brearley said:

True about the so called specialists  my friend .my Neuro would be a lot more happier if I wasn't his his list he has no interest. So at last meeting  I told him he was a total asrehole and that I want a new Neuro.  Don't lock yourself away buddy you can get portable 02 tanks with carry case that I take everywhere with me even when out of cycle just in case.  

 

I will do just that. Will find myself a portable one. They are made of aluminium, or steel if I'm not wrong and are supposed to be lighter as well. How much O2 does the e tank hold? Found something similar here. Attaching a pic. 

[Shaun brearley]

My portable tanks last 20mins .I've got 5 of them 

[Vipul]

On 12/1/2021 at 9:56 PM, 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.  

Hi @CHfather @Racer1_NC @xxx

Still trying to source tbe O2 regulator. As advised I am reviewing welding regulators as they are all able to give higher output. I still have a few questions. 

1. The gauge on the welding regulators are in bar/ psi rather than lpm. So, I really wouldn't know what lpm I am on. Not really an issue. 

2. All regulators I reviewed have a max inlet pressure mentioned as 100 bar. I believe all O2 cylinder has a pressure of 150 bar. Why is this so and is it ok to use? 

3. The outlet pressure is 0 to 12 bar which I think is much more than I would need. 

4. Does the welding regulator need a thicker O2 pipe or is it the same as medical regulator pipe?

5. Is a single stage regulator good enough or do j go for the two stage which controls the outlet flow.? 

Request help to confirm the above. Attacked images of the regulator and specs. 

 

 

[CHfather]

I'm sorry, Vipul.  I don't know the answers to any of those questions.  

[Shaun brearley]

Sorry buddy as CH father has said I can't help on that 1 as I don't use a welding set up sorry . Some1 on here will give you the answer tho I'm sure 

[Shaun brearley]

PM Bejeeber or spiny see if they know buddy 

[Shaun brearley]

Or Freud he knows loads 

[Shaun brearley]

Rite I've just had a look round site for an answer but can't get a definitive one but from what I'm reading it's all guess work with the flow rate buddy . At the end of the day as long as the bag is full when your ready to inhale your next breath then all good.  The outlet pressure is fine just adjust it to what is required as for the tubing your normal tubing should be good to go buddy . 

[CHfather]

11 hours ago, Shaun brearley said:

it's all guess work with the flow rate buddy

Yes, this is true.  You just turn the knob on the regulator until you get the flow you want.  This quickly becomes easy to do.  It's the other questions I couldn't answer.  If you were in the US, I'd say it's all going to be fine; I just don't know whether for some reason Indian tanks or regulators might be different from US ones.

Edited December 15, 2021 by CHfather

[Vipul]

10 hours ago, Shaun brearley said:

Rite I've just had a look round site for an answer but can't get a definitive one but from what I'm reading it's all guess work with the flow rate buddy . At the end of the day as long as the bag is full when your ready to inhale your next breath then all good.  The outlet pressure is fine just adjust it to what is required as for the tubing your normal tubing should be good to go buddy . 

Thanks @Shaun brearleyand @CHfather thanks. am quite clear now. Maybe I was just getting too involved in the technical details. I've ordered a welding regulator from Amazon and hopefully it should work. Should receive it today. 

Love 

[Vipul]

Just now, Vipul said:

Thanks @Shaun brearleyand @CHfather thanks. am quite clear now. Maybe I was just getting too involved in the technical details. I've ordered a welding regulator from Amazon and hopefully it should work. Should receive it today. 

Love 

 

[Vipul]

On 12/7/2021 at 9:18 AM, jon019 said:

....now that's a good "problem" to have! similar success here with O2, which made the decision about when to use the last resort triptan harder. in my case had to use a combo of factors to know when. kinda depends on your cycles...mine 5-8 weeks on/off for yrs so knew just about where i was in most cycles (much harder when turned chronic, but cycles within that too). the worst hits (except for very last) were midcycle, always on high alert then. i knew only O2 needed for start and end of cycle hits. other factors: the faster a hit came on the more alert to a last resort screamer i had to be....and last but totally unexplainable, sometimes i could just tell...there was a certain  "exquisiteness" of pain that was missing from most other hits. got pretty good at it and rarely missed....but always rueful since it meant being an "experienced" clusterhead.....which noone aspires to. may you continue to rapidly abort and not have to worry about "how bad" this one is gonna be 

...thank you for your reports....somebody somewhere is sure to be helped reading your experiences....

Hi, what i realise after reading your message is that maybe my cycle was tapering down when I started the O2 and hence was able to abort quickly. Will need to be monitored over time. 

So, my first 2 years the cycle was pretty much predictable. Would start in July/aug and dec/jan and would last 30 to 45 days. The 3rd year the cycle starts whenever. Have had 5 cycles and even when the cycle is over, I get these shadow type attacks on an and off. 

Love and pain free wishes to you. 

 

[Shaun brearley]

Vipul for shadows drop 2 ginger capsules every day 

[Vipul]

On 12/23/2021 at 7:05 PM, Shaun brearley said:

Vipul for shadows drop 2 ginger capsules every day 

Hello, yes ginger works great. I make myself some stong ginger tea. I've noticed, a hot shower also does the job with shadows. 

[Vipul]

Hello, 

I keep an O2 tank in the car to use in case I get an attack when am out of the house. I got an attack today while traveling and immediately stopped to start on O2. I was shocked to see that there was very little O2 left In the tank even though it was a full tank when I kept it in the car 2 weeks ago. This has happened earlier as well. 

Question is, can this happen in hot conditions where the O2 expands increasing the presure in the tank and leaking from the tank? 

If this is true then I'll stop keeping the tank in the car for long. 

Love and regards, 

Vipul

[Racer1_NC]

More than likely the tank had a small leak either from the regulator, connection or the internal tank seal. 

[jon019]

....got the occasional leaker myself over the years but always kept a tank in car....winter/summer. made for some interesting eyeballs from cops when using on the road (not recommended but sometimes ya just gotta do what ya just gotta do). keep the tank in car, strap it down, and check the pressure on a routine basis....i did every Monday.....