Just Got Oxygen for the First Time and Need Advice

[Mike33]

Hi everyone,

I got oxygen for the first time today. I watched a demonstration on YouTube and got the breathing technique down. It definitely works in stopping attacks and that is awesome.

The problem I am having is that it doesn't last. I have used almost a quarter of the tank on the first day. It stops an attack and then I need it again an hour later.

Is this typical? What if anything can I do to prolong the relief?

Thanks so much!

[Craigo]

1 hour ago, Mike33 said:

Hi everyone,

I got oxygen for the first time today. I watched a demonstration on YouTube and got the breathing technique down. It definitely works in stopping attacks and that is awesome.

The problem I am having is that it doesn't last. I have used almost a quarter of the tank on the first day. It stops an attack and then I need it again an hour later.

Is this typical? What if anything can I do to prolong the relief?

Thanks so much!

Hey Mike, what size tanks do you have and do you have the Cluster O2 Kit for your breathing apparatus? 

Using that kit and the mouthpiece at 15lpm I am able to abort an attack in about 3-5 minutes, making a point to fully exhale before drawing back the full bag of 02. Once I have aborted the attack I step the reg down to 10lpm, slowing down my breathing but following the same technique and then down to 8 or 6lpm, again using the same technique, in order to conserve oxygen. 

You may find that others, and I will attest to this myself, say that if you don’t stay on the o2 for a minimum of as long as it took to abort and maybe a few more mins so for me that’s 10-12 mins, then they experience rebound attacks an hour later, staying on the o2 at the lower flow rate may be worth a shot to see if this results in fewer slap backs for you (although I get the feeling of it being counterintuitive as you want to conserve 02 if it’s arduous to replenish or a weekend etc).

I also suggest having an easy to use timer, I hate fidgeting with my phone to reset timers during an attack etc, an analog one means I can easily keep an eye on the timer. 

Is your o2 covered or are you paying for it? I know one or two warriors that have purchased an Invacare o2 concentrator and tank filler unit so they can refill their own tanks and not worry about having to go to suppliers etc, I was and maybe still will consider this. It’s said that the purity is above 90 but less than 100% - from my conversations with those that use it with the Cluster 02 Kit mention it works for them just fine to abort attacks, albeit a bit of a costly setup to get initially. 

I’m sorry if I missed any other posts but I would ask what preventative meds you are taking? I find the D3 regimen has really helped reduce intensity of the attacks (when it hasn’t kept me pain free completely) and it was originally designed by Batch in an effort to improve his 02 abort times.

Hope that helps, we in it together, keep us posted.