Draft of "My Oxygen Page"

[CHfather]

I hope this doesn't seem too arrogant.  Recent experience with John, and with many others before him, convinced me that I needed to put down my thoughts about oxygen in one place that I could refer people to.  Otherwise, I just keep typing the same things over and over, and leaving things out that I should be mentioning.  The "arrogant" part is that of course there's already the ch.com oxygen page, to which we all are always referring people.  But, truth be told, as very good at that resource is, my daughter (who is very smart) and I (not so much) both found it really kind of daunting when we turned to it in the early days. 

So, at least for my own use, I decided to make my own, which I have posted down in the Clusterbuster files, at http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790 -- with frequent references and links to the ch.com one.

It won't hurt my feelings if people think the ch.com one is better and keep referring people to that one.  If anyone has suggestions about how to make mine better, I would welcome them.  For instance, I don't know enough about the "power user" strategy (where to get a 45 lpm regulator, for example, and all that retrofitting with garbage bags and all).  And I would love it if someone knew where a person could order a "mouthpiece" or "breathing tube," which I have been unable to discover.

And it could be that mine just gets in the way, in which case I will gladly take it down and just use it as something I can post in individual threads, or cut and paste as needed.

Thanks, friends.

[Pixie-elf]

When I ordered my mask from the CH.com store, it came with the mouth piece with it.

You should also be able to buy them at medical supply stores, since they're used for breathing treatments, but I don't really know how you'd fit it to a bag, or if it'd be the right size to go with the Opti mask... Good Luck!

Mystina

ETA: Right now, I'm pretty goofy due to my pressure being up, so I couldn't read anything, but...

If you didn't advise people NOT to get an oxygen condenser, or whatever the machines that make oxygen out of the air, you should. It's not 100% oxygen. I doubt it'd do any good.

[Bonkers]

That was a lotta work, CHf. Thank you very much. Still a bit daunting - at least to me; probably not to my young-adult daughter either, compared to whom I also am "not so much."

[alleyoop]

Thank you CHf!

I agree.  This is much easier to comprehend and will be a terrific aide in getting people started using the 'correct oxygen therapy'.

Your tireless efforts to help people on this board are absolutely commendable. 

bobb

[CHfather]

If you didn't advise people NOT to get an oxygen condenser, or whatever the machines that make oxygen out of the air, you should. It's not 100% oxygen. I doubt it'd do any good. 

Yes, Mystina, I made that recommendation, and emphasized it -- in part because that's what my daughter got (a "concentrator"), and what her O2 supplier kept trying to give her no matter how often I explained to them that it wouldn't work for her. 

I can't figure out how to paste images here, but here's a taste treat for you to look forward to (or maybe you've already tried it): http://foodbeast.com/content/2009/07/09/cotton-candy-sandwich/ 

[Arde]

The link gave me a 404, but I think I found it. This it?

The cotton candy sandwich:

[Bejeeber]

Worst sandwich ever. 

Hey CHfather I see that our posts back'n forth in this topic from last night are now missing (???).

Oh well, no big earth shattering deal there I guess - maybe that's just the official punishment for anyone who's enough of a frikkin' LOSER to post on a saturday night.  ;D

[CHfather]

Hey CHfather I see that our posts in this topic from last night are now missing (???).

Nah, they're still down in the C'buster Files section.  But I was thinking this might be a good place to continue that discussion (as you said you might), so the file area stays more self-contained(???).

[CHfather]

The link gave me a 404, but I think I found it. This it?

Thanks, Arde!  Wish I understood how to include images.  When I click on the image icon I get the {img} {/img} html code, but I don't seem to get access to my files so I can actually insert an image.  A Firefox issue, maybe.

[Bejeeber]

OK, a few more things'n stufff I have to throw out there:

1) There's this pictorial site put together by a ch.com member regarding welding O2 and regulators that might be a helpful link to include? http://morrobayphotos.com/ch/o2/

2) I ordered my regulator from Flotec http://www.floteco2.com/htm/Products/Regulator_Page_&_Images/B-Regulators.htm. They have ones that go way high (I think mine goes to 60 LPM) and last time I checked they will overnight ship. I had to call them to figure out what would be the best choice of their regulators to order for my O2 tanks though - it wasn't clear to me online.

3) I've been seeing people report that their doctor doesn't know exactly how to word an O2 prescription. I know that happened when I went to see a physician's assistant. I anticipated this and brought my previous expired prescription and she just copied it. So an exact prescription wording example that can be taken to the doctor and shown to him or her if he/she has never written one before could be handy (sorry, I don't have mine on me).

[CHfather]

Thanks again, Bejeeber!  I've added Flotec to the sources, and put in a link to those welding-tank photos. 

I agree with you about how nice it would be to be able to provide a standard prescription wording.  As I mention in the file, we basically had to dictate ours to my daughter's neurologist, but I don't know what she actually wrote.  If you come across yours, or if anyone reading this has one, I'd be glad to insert it.

One final thing, not to drag this out forever . . . I was PMed by someone saying that it might not be wise to recommend higher flow rates, because of a concern about unbreathed O2 "leaking" into a room and causing the danger of a fire or explosion.  I put a note into the file to that effect.  Do you agree with that concern?  Do you, or other power users, take precautions that should be recommended?

[Hipshot]

Hey there CHF.

Better late than never, thank you.

I, like you, feel like I keep repeating myself and will refer newbies to your post. It took a lot of effort on your part...and thanks to jeebers too.

[ThatHurtsMyHead]

One item of danger that needs to be communicated regarding large tanks and concentrators (not applicable to small O2 tanks):

One can get severe lung damage if O2 is used for too long  (likley the reason some docs are scared to prescribe it).  Extended use of Oxygen causes the alveoli in your lungs (the thin walled sacs that transfer oxygen for carbon dioxide) to collapse.  The process can start as soon as 20 minutes of breathing 100% O2. 

I will only use the 'E' oxygen tanks as I regularly fall asleep with the mask when the post CH hit exhaustion kicks in.  I sometimes find myself waking up when the tank hits empty.

A person wouldn't realize they're slowly suffocating as more and more alveoli collapse. 

It took me a little while, but here's a website that briefly describes it.  I'm sure theres something somewhere that can explain it better than I.

http://science.howstuffworks.com/question4931.htm

Jeff

[Bejeeber]

I've seen the health and fire dangers of high flow rate O2 hotly contested at ch.com.

I wish I had more time right now to look up more detail on this, but I think that a few viewpoints from those who've studied this and those in the trenches should probably be sought out before deciding how to treat the subject.

[CHfather]

Thanks, Jeff and Bejeeber. 

Jeff, I'll strengthen the caution about not exceeding 15 minutes at a time.  I did mention that some people remove the straps from their masks so the mask will fall off if they fall asleep.  Did you try that?

Bejeeber, I have a caution in there about possible danger for O2 "leakage."  Maybe I should link to a ch.com thread on the subject.  I'll check.

[ThatHurtsMyHead]

CHFather,

Correct on the strap removal.  After falling asleep a few times I started not using the strap and just holding the mask to my face.  That way if I were to fall asleep when the post hit exhaustion kicks in the mask would fall away. 

I hadn't really thought about the O2 reacting with anything nearby but that's definitely a real danger.  From SCUBA Nitrox training you learn the dangers of 100% Oxygen and various issues related to enriched O2 at depth.  If I recall correctly anything containing carbon is the #1 thing to keep O2 away from.  Oil isn't used on any NITROX certified gear and all NITROX tanks have to be scrubbed to remove any oil before introducing O2.

Theoritically after every 15 to 20 minutes you could remove the mask and breath regular air for a few minutes.  That would reintroduce nitrogen to your lungs and prevent the alveoli from collapsing.  (Then do another 15 to 20 mins of 100% O2 if needed).

If you're interested I could consult a friend of mine that's a respritory therapist for the exact science for your O2 doc?

Jeff

[CHfather]

Thanks, Jeff.  I've put warnings in about not doing O2 for more than 15 minutes straight, and a caveat about the "power user" method (which I'll look into more on ch.com, trying to find a thread that might give people a better sense of the fors and the againsts).  The main thing I remain perplexed about is that I've read people saying that it's wise to keep on the O2 for 5-10 minutes after a headache has been aborted, to prevent other attacks in the short run (same night/same day).  But if it were to take the full 15 minutes to abort the first attack, I wonder if it's wise to do the additional 5-10 "preventive" minutes, given the possible-lung-damage issue you've raised.  If your respiratory therapist friend would have any insight about that, I'd be interested.  Maybe that's another case of wait 5 minutes, then do 5-10 more?

Again -- thanks!  And of course any other insights are completely welcome.

[Nancy]

Hi all!  I just saw this thread today... I have posted on the CH site but thought I would ask here also.  I am a supporter trying to research options for my husband.  I have been reading both blogs.  I have read the "O2 pages" at the other site but I am still struggling to find more exact instructions of when to use it and how to explain to him how to  hyperventilate.  His Neuro prescribed the O2, We have the tanks, he took the mask off and is using it by mouth at 15LPM right now (have 25 LPM on order) other than keeping the shadows at bay, its not helping at all. Don't know if it is possible but is there a way to "describe" the whole scenario from start to finish of how you guys are using it.  My hubby has very strong shadowing... so it is hard to know "when".   If its possible, thought this info would be useful to have out there for the first timer (and supporters).  Getting a lot of hits on my post but not a lot of responses :   http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1300211447  So it seems there may be others looking for help??

Thanks for listening guys! :-X

[CHfather]

Nancy, I wish I had some good advice for you, and I'm hoping others will.  I've read you other thread (more about that in a second), and it seems like you're getting solid knowledge there (yes, use it when he wakes up with a full-blown attack--it's not too late, but it can take longer (or two 15-minute "sessions" with about 10 minutes in between); yes, breathe as deeply as possible and exhale thoroughly . . .etc.).  Like I say, I hope others here can perhaps answer your other questions.  It seems like your "when" question is the most pressing one, and I just don't have the experience to answer that, since my daughter's shadows were not so bad and she handled them with ginger tea, caffeine, and other non-oxygen things.

It must be quite terrible for you and him, having so much hope for the O2 and then being so disappointed.  There are some people for whom it doesn't work, but you should (he should) keep trying.  My daughter, as an extra step, always has quickly slammed down a RedBull or other energy drink just before getting onto the O2 (she's almost always hit while she's asleep, so she keep the RedBull nearby, gets up fast, slams it, and goes to the O2).  I can't say whether that has helped or not, but she does get a quick abort (and because she's so darn tired and so relieved when the HA goes away, for her there's no problem with the RedBull keeping her awake). 

I don't know what people's reading practices are here, but since so many people have already looked at this thread, maybe you'd be better off starting a new one??

Also, the link you put up doesn't work.  I have that problem all the time with putting up links here . . . somehow that semicolon shows up and makes a space part of the link or something.  I suspect most folks know they can just copy what you've pasted, up to the final "7," and paste it into their browser's address bar, but you can also fix it by clicking on the "modify" button at the top right of your post and then deleting the space and the ; after that 7.  For safety's sake, maybe make a new paragraph for anything after that.

I remember when I was in the process of getting my daughter's oxygen, we had pinned so much hope on it that I was just terrified that it wouldn't work and she'd become more depressed and feel more hopeless.  Lincare was also her provider (though perhaps in a different location), and I had to educate them and push them every step of the way.   It sounds like in you're in pretty much the same position as me, trying to find something that works for someone you love who is suffering.  There's no reason to really doubt that O2 will work when you get all this sorted out.  In the meantime, my heart goes out to you.  I'm glad to see you're also trying the D3.

[CHfather]

Nancy, have you read the post by Batch (the O2 guru) that is #10 in this thread: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1298840351/10#10

I just came across it.  It seems like it would be helpful to you.

[Nancy]

Thank you CHF!!  VERY good information... haven't seen this thread!

[CHfather]

Nancy, I'm glad that was helpful, and wishing you the best.  Please let us know how things turn out.  If you find the D3 to be helpful, maybe you could post a quick note at this thread -- http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1300245052/13#13 -- since many of us are quite interested, and not all of us go regularly to the ch.com board.