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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> O2 question
        
(Message started by: Kim_for_Todd on Oct 13^th, 2005, 5:47pm)

Title: O2 question
Post by Kim_for_Todd on Oct 13^th, 2005, 5:47pm

Hi! I'm new to the board and wasn't sure where to post this, so someone please move it to the right thread if needed. I have a question about the oxygen, but I read the things to include in your first post so I'll try to add that.

My hubby has suffered from ch for 14 yrs. He's a few months shy of 40 yrs. old. After 3 different neuros we still didn't know anything except to rule out other problems. We finally got a correct diagnosis in 2000 and tried lots of different meds. IF anything worked, it only did for a short time. Before today he was on Frova but could only have 9 pills per month. Needless to say, he saved those for while at work and went through pure hell at home.

He was PF for over a year, but you all know too well that the beast had to join us again. It's been 3 weeks now. Since Sunday night, he's had 4 per night like clockwork. Each one has "only" lasted 25-30 min. He had one Monday at work that lasted 2 hrs.

I can't tell you what a relief it was to find your website!! Even with the diagnosis, we still had doubts...since nothing was working. The cluster traits and last half of the quiz fit him exactly. He was comforted (for lack of better word) to know that he wasn't crazy and he wasn't alone. Thank you!

I hope all of you sufferers don't mind that I'm the one posting and not Todd. 1. He says he doesn't want to concentrate on the headaches by reading everything. 2. He has yet to have a ha when doing physical labor, therefore he's outside as much as possible. 3. He's not very computer savvy. I've been glued to this website and the OUCH site for the past five days. I've done like so many of you have said...read, read, read!

I took a handful of printouts to the doctor with us today. I knew more than he did, but he was very interested and receptive. He even wanted the website so he could read up on everything. He started Todd on Verapamil and oxygen (thanks to you guys!)

Now to the question...the info here says 15 LPM but the only tanks the medical supply company had was 8 LPM. They said 15 was way too much. Also, at first they were only going to give him the nose tube and gave some reason why the mask wouldn't be good. I pulled out my trusty printouts again and showed them. They ended up giving him a mask but it doesn't have that bag on it like the pic does. Will 8 LPM work? And what to do about the mask? The tank if very small and they said it would only last 30 min at the most at the high setting. They agreed to let us take two tanks home. Also, if you have any other tips on the oxygen, we would love the help!

Sorry this is so long. Thanks again for the wonderful site and all of the helpful info.

Kim M.

Title: Re: O2 question
Post by Svenn on Oct 13^th, 2005, 5:57pm

8LPM dont work for me

you need 12lpm at least in a mask with that bag for 15 min at least

the nosecanyla is suitable for the trashcan and trashcan only

Svenn

Title: Re: O2 question
Post by nani on Oct 13^th, 2005, 8:00pm

Hi Kim and welcome. I'm afraid that 8 lpm probably won't help. You need a regulator that will go up to 15 lpm, and a non-rebreather mask. Have your dr's office notify the oxygen place.
Thank you for supporting your hubby. We all appreciate good supporters. Feel free to ask any questions you may have. You'll find lots of info and help here.
Please don't forget to take care of yourself through all of this.
pain free wishes to your home, nani

Title: Re: O2 question
Post by Mr. Happy on Oct 13^th, 2005, 9:01pm

on 10/13/05 at 17:47:45, Kim_for_Todd wrote:

He was comforted (for lack of better word) to know that he wasn't crazy and he wasn't alone. Thank you!

http://mushys.com/despair/lonliness.jpeg

Quote:

I hope all of you sufferers don't mind that I'm the one posting and not Todd. 1. He says he doesn't want to concentrate on the headaches by reading everything. 2. He has yet to have a ha when doing physical labor, therefore he's outside as much as possible. 3. He's not very computer savvy. I've been glued to this website and the OUCH site for the past five days. I've done like so many of you have said...read, read, read!

Hey...it's OK, post away. It's not your fault you married an idiot. So did my future ex. These things can be worked out.

Quote:

Now to the question...the info here says 15 LPM but the only tanks the medical supply company had was 8 LPM. They said 15 was way too much. Also, at first they were only going to give him the nose tube and gave some reason why the mask wouldn't be good. I pulled out my trusty printouts again and showed them. They ended up giving him a mask but it doesn't have that bag on it like the pic does. Will 8 LPM work? And what to do about the mask? The tank if very small and they said it would only last 30 min at the most at the high setting. They agreed to let us take two tanks home. Also, if you have any other tips on the oxygen, we would love the help!

Your prayers have been answered. You have accepted a CHead into your midst. Cool. This is a chronic condition, even if it IS episodic. This is your first foray into the world of oxygen, and I sure hope it works for you.........but it WON'T, for the most part, unless done exactly as directed. Your local 8 LPM staff are not educated in OUR use of O2. Be polite to them, get your tanks of O2, and look to your OPTIONS.

You can get all the masks you want from folks here. Just ask. Look up a Clustermasx (http://clustermasx.com) for the real mask McCoy. You can get 15 LPM regulators, too. Just ask. Once you're sure O2 works, there's ALL kinds of ways to keep it handy.
We'll all be at this for a while.

Join the club.
RJ

Title: Re: O2 question
Post by Jester on Oct 14^th, 2005, 12:19am

Here's why I would say 12 is needed and less will not work.

It won't work because you are looking to get 100% O2 for 15 minutes. That means that your only breathing in O2, and no outside air. If you plug all the holes (which I do, and you or others may not. I don't reccomend ;). ) to the mask and breath at less than 12, you'll find that your struggling to get enough air from the bag and almost waiting for it to fill before taking a breath. Not fun. At 12, if you fill the bag then place it on your face, take normal breaths, the O2 should fill the bag fast enough to keep up.

If you don't plug the holes, then your looking for the O2 tank to create more air than your trying to breath in. This way when you do breath, that the air comes from the mask/bag, and not through the holes in the mask, and actually some air will escape the mask through the holes at all times in the process.

What's really important here is the 100% O2. If you breath more than 12, then up it to 15 lpm. Who cares, the extra will escape from the valves. Wasteful, but ...

Title: Re: O2 question
Post by Kim_for_Todd on Oct 14^th, 2005, 6:52am

Thank you all so much for the info. I was afraid that would be the answer. We won't know if the the O2 works or not since we don't have the right equipment. I've already ordered the clustermasx.

Can someone point in the direction where I can buy the right regulator? There's only that one medical supply co. in our small town.

Todd had a pretty good night last night...only one attack and then he got to sleep for 5 hrs. straight!

Thanks!

Title: Re: O2 question
Post by Kevin_M on Oct 14^th, 2005, 7:17am

on 10/14/05 at 06:52:24, Kim_for_Todd wrote:

Can someone point in the direction where I can buy the right regulator? There's only that one medical supply co. in our small town.

The tank if very small and they said it would only last 30 min at the most at the high setting. They agreed to let us take two tanks home.

Find out what tank size you have. "E" tanks, well mine, is about 29" from bottom to top of turning valve and about 4" wide.
Now that you are getting oxygen, an inquiry about getting more tanks could help, my supplier delivered more when requested on subsequent delivery calls.

Title: Re: O2 question
Post by marlinsfan on Oct 14^th, 2005, 7:36am

Hi Kim,
OThers have said it, but I'll repeat it. Thanks for supporting your husband. Most of us would not be on the planet today if we didn't have great supporters like you.

I may be the only one here to say this, but 8LPM has worked for me just fine. 12 minutes and the headaches are gone. Like clockwork. But the mask is key. Glad to hear you ordere the clustermask.

As for a regulator, plenty of places online. On e-bay you can find them too. Here's one, as an example. I don't know these sellers, I am not this seller, nor do I recommend these sellers, I only did a quick search on e-bay for you:

http://cgi.ebay.com/MEDICAL-OXYGEN-REGULATOR-0-15-LPM-BRAND-NEW_W0QQitemZ7552629274QQcategoryZ11819QQrdZ1QQcmdZViewItem

here's another:
http://cgi.ebay.com/BRAND-NEW-Medical-Oxygen-Tank-Regulator-0-15-lpm_W0QQitemZ7553586384QQcategoryZ11819QQrdZ1QQcmdZViewItem

Make sure you know what tank you have. The E-tank (what I have) are the tall skinny ones, go up past your knee. They last me for 3-4 headaches.

Have you had Todd try melatonin? It helps many of us with the nighttime attacks. Take 9 mg every night 30 minutes before going to sleep. It'll take a few days to build up, but once it does, he may find relief. For me, it cut down the number of attacks to 1x night, and the intensity (from kips 7-9 to kips 3-5).

Keep reading and asking. we're here to help.
Jose

Title: Re: O2 question
Post by ben_uk on Oct 14^th, 2005, 9:09pm

Hi Kim, hi Todd,
When your masx arrives, give it a try at 8lpm.
Some are using as low as 6
Ben at clustermasx

Title: Re: O2 question
Post by Mr. Happy on Oct 14^th, 2005, 10:32pm

on 10/14/05 at 06:52:24, Kim_for_Todd wrote:

I've already ordered the clustermasx.

You're my new best friend. Good move.

Quote:

Can someone point in the direction where I can buy the right regulator? There's only that one medical supply co. in our small town.

Drop me a note (randy@ouchpanj.org.) You, and ANYBODY else needing regulators. I got boxes of `em. Besides, Sister Terla just did inventory, and unless y'all start a buying frenzy, she's going to have to sacrifice a few "pink" cherubs just to clear a path to the Alter. (http://mushys.com/pix/wotanspalace.jpg)

Merry Wotanmas to all, and to all a good night.
RJ

Title: Re: O2 question
Post by Sean_C on Oct 14^th, 2005, 10:35pm

http://mushys.com/pix/wotanspalace.jpg

ROTFLMMFAO a one stop shop [smiley=laugh.gif]

Gotta love it ;;D

Sean.......................

Title: Re: O2 question
Post by AussieBrian on Oct 14^th, 2005, 11:30pm

And now here's another side to the same story. When I use O2 it's through the plain ordinary little mask with the two holes in and I run it at super low pressure - barely turned on, in fact.

Place thumb and forefinger over the holes and inhale slowly through the nose, then exhale. You can actually feel the O2 because it's that bit cooler than the air travelling with it.

I found this to be completely effective and of course a tank lasts for ages. but either way it's up to everyone to find what works for them personally.

Best of luck,

Brian.