Hi everyone...

I was completing the survey yesterday and it got me asking some questions or, rather, wondering some things about oxygen.

I know that not all treatments work for everyone but does oxygen seem to work for most people? Are there others that it does not work for?

I have tried it numerous times but it rarely ever worked for me and when it did, the headache escalated back up and usually worse than before when I stopped breathing it. I tried it different ways and kept breathing it when the headache was gone.. ten minutes, fifteen minutes, five minutes... all trying to figure out how to get it to work for me.

It seems that the oxygen being cold is a big part of the problem as that cold air seems to escalate the attack. And this becomes especially true when I attempt to breathe through my nose.. anything via the nose is a big no-no for me.

Jefferson allowed me to try the oxygen with a humidifier that warms the air but the saline had to be heated each time so I could not fight the attack as fast I should have. Has anyone ever heard of this?

I am thinking about trying it again and am hoping that I can find a way to heat it. Any ideas?

And, one more thing, I am moving back to Sweden in a week... is it hard to get it in other countries or is it similar to the US?

I figure that it will not to hurt to try again but I thought that maybe you all might have some answers to these questions.

Thanks so much,
Jill

how long were you staying on it for at a time, sometimes if you come off it too soon it can cause rebounds


Sandra xxx

First, I am confused about your nose.  You shouldn't be using your nose when using O2 (except for maybe to exhale).  Are you using the nose cannule thingy or are you using a non-rebreather mask with reservoir bag?
Second, its funny how we all differ.  I like the cold O2.  I tried using a bubbler, but it warms up the O2 and it is not as effective.  I even tried ice in the bubbler to cool it but it still is not as cold, so I don't use a bubbler anymore.  

PF wishes
B$

Jill,

You can use an extra length of hose and wrap it around a hot water bottle to warm the O2 and a humidifier bottle to alleviate the dryness.


I got a letter in the mail today from Cigna that is very confusing and that leads me to believe that they want to cut off my oxygen. It is very cryptic in nature and says that after Dec 30th they will no longer pay Allina home oxygen. I will have to call those jokers and set them straight about the only thing that aborts for me!

I may be taking my own advice and heading down to the local welding supply store. I sure am glad I own my own regulator!

Roland. >:(

hey rolo, i dont want the same thing happening to me can you tell me where one might be able to aquire their own regulator?? Let me know Coach Bill

I always suggest buying your own regulator  and  a mask (I have a clustermasx).

Since I got them....I am saving a ton (even after insurance).

coach_bill wrote on Nov 28^th, 2008 at 6:49pm:

hey rolo, i dont want the same thing happening to me can you tell me where one might be able to aquire their own regulator?? Let me know Coach Bill

Hey Bill,

There are several routs to go….And I personally would get one that goes to 25 LPM minimum.

Ebay for a used one,

Use a welding regulator for a cutting torch (has to be capable of high flow rate)

I purchased a new one myself capable of 60 LPM from Flotec Inc.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Rolo.. ;)

Thanks guys, this site is great!! Coach Bill

""I know that not all treatments work for everyone but does oxygen seem to work for most people? Are there others that it does not work for?

I have tried it numerous times but it rarely ever worked for me and when it did, the headache escalated back up and usually worse than before when I stopped breathing it. I tried it different ways and kept breathing it when the headache was gone.. ten minutes, fifteen minutes, five minutes... all trying to figure out how to get it to work for me.""

Jill
I am one of the others oxygen does not work for. In fact it intensifies the CH before I stop breathing it.

Never hurts to try again.

Oxygen by the nature of the way its released naturally gets colder through evaporation. You could run a pressure regulated line into a second low pressure holding tank warmed to room temp but it would begin to chill after a while of use as well.
There other methods like a heat exchanger but they get a little more complicated and expensive.

Hi, Jill.  There's absolutely nothing that works for everybody.......  But used within reason, O2 doesn't accumulate 'poisons' in our bodies.  So it's worth a try, worth every bit of experiment.

As B$ said, we need to use a mask that tightly fits (pressed against) the face.  You may not be inhaling enough O2 per breath.

For years I used the typical old 8L regulator, and it still worked.....albeit not as fast or well.  I had no idea how quickly O2 can abort CH until I got a different regulator.  But the longer I wait to hit O2, the longer it takes O2 to work.  So at the first sign of ANY pressure building on my CH side, I take O2 to prevent it from developing into a full blown attack.  All the bad bad pains in the past were needless had I known how to use O2 more effectively, but part of our learning curve to live with CH.

To me it's *work* to use O2 as an abortive to a bad attack.  My body size is small, my normal breath is shallow, and Verapamil has slowed down my bodily functions.  If I wait until I hurt, I need to inhale deeper and faster (requiring a higher flow) that makes me feel like I ran around the block without running.  So I've learned that the best thing is to not let CH hurt me but quickly kill it by O2 while the pain is still no big deal.  It took a little experimenting, but it was so worth it to learn when I need to get to O2 and adjust my O2 intake to the degree of pain.  The dry and cold blow on my throat can surely hurt a little, but cough a couple of times and take a sip of water as needed.....and the very minor sore throat is gone after a few minutes of O2 therapy.  If one has a very sensitive throat, this might be a problem, but others can give you tips on the use of a bubbler and other tricks to make it more pleasant.

Thanks all...

I did use the right mask and the right regulator - it took me some time but I got there! I did breathe the oxygen through the mouth but you know how when your nose runs, you sniff without thinking. If I even did that once, there was no going back because the headache would just increase. Also, when the oxygen is set at a high rate than that cold air hits everywhere.. does that make sense?

The cold air has been my biggest problem and it seems that the only way to heat the air would take time away from hitting the attack directly when I first feel that twinge.

I am wondering though, what is the bubbler? I have heard the word before but I am not sure exactly what it is. Is that faster at helping to heat up the air. It does not have to be hot but it has to take the crispness.

I appreciate the help and will try to figure out a way to try it again, maybe experiment a little to see what works.

By the way, Rolo, why is your insurance not covering the oxygen?

Thanks so much,
Jill

Jill, I hope they are just messing with me. They want me to switch to Apria.

Try the mouthpiece.. It works great for me and I haven’t used the mask at all since I switched to the mouth tube.

Good luck and hang in there!

Roland. ;)

Jill, To use the mouthpiece that Rolo is talking about you need to get a setup like the O2PTI that can be ordered from the 'oxygen info' link on left of this srceen (highlighted in yellow). Or go to START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. It comes with the mouthpiece and the cost is $25, but I suggest getting it with the 3 liter bag for another $12.76.

The mouthpiece will bypass any sinus irratation, while giving you the benifit of oxygen aborts. I have two of these units, but use the mask, and can say they are great. They were designed just for CH alone.                 Best of Luck, Don

Rolo, I had Apria for 12 years they're great, best thing is being all over the USA. Anywhere you go almost you can get O2.    Best, Skyhawk5

Skyhawk5 wrote on Nov 29^th, 2008 at 11:04pm:

[size=14] but I suggest getting it with the 3 liter bag for another $12.76.

Get some big freezer bags and save yourself $12.00 ;)

I'm calling Apria Monday, Thx Don  :)

I would have to dig the old board to find the pic of what I call the Apollo 13 special!  :D ;D

Failure was not an option! Who needs a stinking mask when you got a kitchen and some scotch tape. ;)

It was a paper towel tube taped into a freezer bag with the feed tube taped in the bottom corner. Necessity is the mother of invention and that O2 rig was proof positive! ;D