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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Oxygen tips, information, and links (reposted)
        
(Message started by: ClusterChuck on Mar 19^th, 2006, 1:16am)

Title: Oxygen tips, information, and links (reposted)
Post by ClusterChuck on Mar 19^th, 2006, 1:16am

I have been asked about this, so I have pulled it up AGAIN for all the newbies ..I sure hope it helps ya!!!

Chuck

Part A
I think it is time to repost oxygen (O2) tips and information. Most of this has been posted before, but I have included other information and links, all into one post, part A, and part B. BTW, I am NOT a doctor, nor a respiratory therapist. I am just a clusterhead who has listened, read, and tried various methods, and found some that work, for me.

If you don’t have a non-rebreathing mask
The nose canula CAN work, if used this way: Do not put it in your nose. Put it in your mouth, close your lips around it, and inhale. Open your mouth to exhale, and then close your lips, again, around it to inhale. Breath only through your mouth. Do not inhale any “room air” only the O2.

If you can’t get a moisturizer
Make your own. Take an empty (and cleaned) mayonnaise jar (or something like that), drill two small holes in the lid, the size of the O2 air line. Cut your hose, a foot or so from where it hooks to the tank. Stick the hose from the tank into the lid, and far enough down so that it touches the bottom of the jar. Take the hose that goes to the mask, and stick it into the other hole, but just far enough to stick through the lid. Seal around both hoses with a silicon type sealant. Put an inch or two of water into the jar. No more than ¼ full! I attached mine to the tank with a bungee cord. BTW, if you put ice cubes into the water, it will cool the O2 somewhat. Many feel this helps it to work.

To buy your own bubbler go here: http://www2.mooremedical.com/index.cfm?PG=CTL&CS=HOM&FN=ProductDetail&PID=676 (Thank you, Mr Happy)

If you are using a non-rebreathing mask
I hold the mask to my face with my right hand. I hold it firmly to my face with the palm of my hand. When I inhale, my index finger goes over and covers the holes on the left side of the mask (the ones with the rubber valve over them), this is to make sure the valve seals fully. I place my thumb over the holes on the right side of the mask (the ones without the valve on them). I use my right hand, so that my thumb covers the holes on the right side. My thumb is larger than my fingers, so it does cover the holes completely. When I exhale, I just lift the finger and thumb (keeping the mask to my face by the palm of my hand), and let the air out of those holes. Some people tape over them. It works better for me, the way I describe it, as you don’t have to lift the mask, when you exhale.

When and how long to use the O2
Grab the O2 as SOON as you feel it coming on. Speed is the name of the game. The sooner you get on the O2, the better the success rate. Stay on it for 15 to 20 minutes. If it has not killed the hit, stop using it. Bear through 10 minutes without the O2, and then hit it again. If the O2 does not work the first time, the second time is almost always the charm for me. Something about that 10 minute break seems to do it, for me.
You don’t need to stay on it for the full 20 minutes, if it stops the hit well before that time. BUT, stay on it for 5 minutes AFTER the last of the pain is gone. The first and last place I have pain is just above my cheek bone, at my temple. I press my finger into that spot, and if I still feel some pain, I stay on the O2.
Trial and error will let you know what works best for you.

If O2 does not or stopped working for you
Try it again. I have gone through periods where it did not work at all. There have been other periods, where it only worked about 20% of the time. Keep trying it. Even if it only works a few of the times, those are hits that you did not have to take imitrex or suffer though a full hit. It has far fewer side effects than any other medication. It is worth it to keep trying.

(continued, below)

Title: Re: Oxygen tips, information, and links
Post by ClusterChuck on Mar 19^th, 2006, 1:17am

Part B
Peppermint Medical reference:
(16th Edition) of Harrison's Principles of Internal Medicine. It's IN THE BOOK as a valid treatment/therapeutic (don't remember the exact wording here) use for clusterheadaches.

Biker bob
Another oxygen tip: Don't run out, always know how long your oxygen supply will last and how long it will take to get a resupply. At 12 lpm an E tank will only last 44 minutes. An H tank will last 8.3 hours. Here is a calculator to determine how long your oxygen supply will last:

http://www.monroecc.edu/depts/pstc/backup/paraoxca.htm

Roxy
Like Chuck says....if it didn't work for you before....try it again. Make sure you have all the equipment right. There is a picture of everything here:

http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm

There is also a new mask out that works great. (to purchase, go to: www.clustermasx.com) I also use mine without the bubbler about half the time...they don't work well with a welding regulator... It's drying on the throat and lungs....but I never notice at the time.

Even if the 02 doesn't work real well for you, and at times if has lost it's effectiveness for me, it still helps me to get that mask on and breathe. I use it as a focus point. Just like in childbirth when they teach you to focus and breathe through the pain.....it works the same for a ch. I found out a long time ago that the pacing, crying, headbanging.....it only intensifies the pain.

Mr Happy (If your doctor will not prescribe a high flow regulator)

Buy your own regulators on EBay.
Think long term.........once you have the O2, make sure you have the right accessories for proper delivery. Don't count on anybody else to provide the Right Stuff.

You're gonna be at this for a while,

Common tank’s information
Tank - - - - - Tank - - - - - - Cubic - - Nom. OD - - Nom. Lgth. - - - Nom. Wt.
Name - - Pressure (psig) - - - Ft. - - - - (inches) - - - - (inches) - - - - Empty(lbs.)
- H - - - - - - -2015 - - - - - - -251 - - - - - 9.04 - - - - - - 51.00 - - - - - - -130
- M - - - - - - -2015 - - - - - - -125 - - - - - 7.00 - - - - - - 43.00 - - - - - - - 75
- E - - - - - - -2015 - - - - - - - -20 - - - - - 4.14 - - - - - - 25.75 - - - - - - - 16
- D - - - - - - -2015 - - - - - - - -10 - - - - - 4.14 - - - - - - 16.75 - - - - - - - 10

Gator
Here is something to printout for those doctors who might prescribe oxygen, but not want to give you 15lpm. This is from Dr. Todd Rozen, one of the leaeding docs in the country for ch. It justifies the high flow rates.

http://www.chhelp.org/mhni.html

I hope the above tips and information is helpful. Thank you, fellow members for the information I stole from your posts.

Chuck
edited to ad Gator's link (thanks, buddy!)

Title: Re: Oxygen tips, information, and links
Post by AussieBrian on Mar 19^th, 2006, 2:13am

Good onya, Chuck. This sort of thing is just so helpful to people, especially those recently beginning the journey.

For the Aussies, and our Kiwi friends from over the ditch, here's a link put together by Barry-T-Coles and Mr Happy which sets things out from our angle.

http://mushys.com/kiwi

It comes with the hint that you should tell the supplier you need the gear to transport live fish rather than admitting it's for personal use.

Only happy daze ahead,

Brian down under.

Title: Re: Oxygen tips, information, and links
Post by Jasmyn on Mar 20^th, 2006, 4:20am

Thanks Chuck, great info! ;;D

Title: Re: Oxygen tips, information, and links
Post by IpityU on Mar 20^th, 2006, 10:34am

Thank you Folks!
This is awesome info as my husband will be starting O2 soon as a new victim to CH. All my questions and concerns of proper usage are answered in this Very informative thread. I was going to post a question or two, but now I can print all this info and make my own "O2 Manual"!! I really think ALL you Veterans are making life for (the "new" and the "not so new veteran") CH sufferers and their supporters much more bearable! :-*
Thank You!!
Lizah

Title: Re: Oxygen tips, information, and links
Post by NotH20 on Mar 20^th, 2006, 12:35pm

Great post Chuck :)

For me personally, it's a waste of time to hit the O2 at the onset of a ch...it always ends up coming back within two hours. For me, it's best to hit the O2 after I get the nasal twinges and the eye watering....then once the O2 works, it doesn't come back within the time period.

Mia

Title: Re: Oxygen tips, information, and links
Post by mynm156 on Mar 20^th, 2006, 3:56pm

Nasal Canula...Have you ever really used one to abort?.Thats cool if it worked but I wouldnt try and use it always. I guess if it is all you've got then its all you've got but the Nasal Canula by nature of its design can only deliver about a max of 6 lpm. They are designed for supplimental O2 administration only. So get a NRB or one of these Clustermax. Understand that it comes down to this. The average person takes in about 600ml of air with every NORMAL breath. The average resting respiratory rate is about 14 breaths per min. So the normal volume of air that goes in and out of the lungs in one min is about 8.4 lpm. This is at rest. When under an attack your respiratory rate increases and so does the volume. An average male can easily take a liter or more with each breath. Also you respiratory rate will most likely be in the 20's Lets say your rate is 20 and your volume 1 leter. The volume you are taking in and out is 20 lpm. So bottom line guys GET THE HIGH FLOW SYSTEMS!! Dont mess around with a canula at all unless there is nothing else at that time. Then get the right equipment. However, you should be able to get one from medical supple store or next time you or a loved one is at the hospital just ASK. Tell the Nurse why you need it and they will most likley give you one. You might even stop by a fire station and ask.

Also The NRB IS NOT DESIGNED TO BE HUMIDIFIED! Nor are the humidifiers designed for high flow systems like the NRB. Getting moisture in that bag is just SCREAMING for bacterial growth. You can suppliment your body by drinking more water. You are not going to be on the NRB long enough to dehydrate you. Understand that your body WILL HUMIDIFY each breath you take 100% before it reaches your lungs. SO Drink drink drink and everything will be fine.

GOOD VIBES ALL

MYNM156

Title: Re: Oxygen tips, information, and links
Post by Gator on Mar 21^st, 2006, 11:58am

Great to see this thread again. Here is something to printout for those doctors who might prescribe oxygen, but not want to give you 15lpm. This is from Dr. Todd Rozen, one of the leaeding docs in the country for ch. It justifies the high flow rates.

http://www.chhelp.org/mhni.html

Title: Re: Oxygen tips, information, and links
Post by Kevin_M on Mar 21^st, 2006, 12:18pm

Thanks for that too Mike.

Getting prescribed the neuro-learned Kudrow flow of 8/Lpm, I asked for a higher flow but she insisted eight was the recommended rate and has worked for all her patients, which is also the flow she keeps in her office, she commented. Like probably others before me in her office, I took the script as opposed to not having oxygen when she declined to change her mind and made the adjustments on my own, which I informed her of so she could put it on my record. Dr. Rozen's article can possibly change that for others.

8)

Title: Re: Oxygen tips, information, and links
Post by mynm156 on Mar 21^st, 2006, 3:55pm

Nice Gator!

Very Nice.

MYNM156

Title: Re: Oxygen tips, information, and links
Post by thebbz on Mar 24^th, 2006, 5:36pm

Bump ;) ::)
jb

Title: Re: Oxygen tips, information, and links
Post by Mr. Happy on Mar 24^th, 2006, 9:10pm

Quote:

Further study and a larger sample size is needed to provide conclusive evidence regarding the usefulness of high oxygen flow rates for difficult-to-treat cluster headache patients. (http://www.chhelp.org/mhni.html)

If that doesn't SCREAM for a new, updated study on O2 effectiveness, I don't know what does. Seems 99% of the O2 data is years old. There'll be some Docs at MilCon that are definitely into inexpensive studies for publication.

It's time to update that data.
RJ

Title: Re: Oxygen tips, information, and links
Post by Not4Hire on Mar 25^th, 2006, 9:51pm

on 03/24/06 at 21:10:19, Mr. Happy wrote:

hey jones... do ya think we might otta try to *update* the O2 page? I mean, it's been a couple years since we extorted DJ to give Mast's page a BUTTON. And there's a whole buncha dead links over there to the LEFT.

And not even a MENTION of the CLUSTERMASX. Only the SUB-greatest invention to come along in the Twennyfurst Century for CHers. I wouldn't say anything, but there's *apparently* quite a few people who have been helped by this information. (why, some folks are telling others to DE-fuckin-MAND that their docs prescribe it....whoa!)

...of course, there are all KINDS of medications that are REAL expensive and have nasty side effects and line the pockets of PHARMACEUTICAL COMPANIES who have LOBBYISTS who got politicians to pass laws against cheaper drugs and more effective treatments.

Yet, there is cause for optimism... the WORD is getting out. And we should do all we can to keep it out. I gotta feeling that the only helping hand we will find is ...right at the end of each of our own arms....

Tell it...

Title: Re: Oxygen tips, information, and links
Post by Filbert on Mar 27^th, 2006, 3:50am

on 03/24/06 at 21:10:19, Mr. Happy wrote:

There has been an official 02 trial in progress for quite a while now based at the Institute of Neurology in London.The last update mentioned that just a few more volunteers were required. You have to be officially diagnosed with CH and have never tried 02 before. We still have sufferers in the Uk being regularly told by there GPs that 02 doesn't work for CH!! >:(

Fil.

Title: Re: Oxygen tips, information, and links
Post by Barry_T_Coles on Apr 2^nd, 2006, 3:46am

Been doing a little experimenting with bubbler / humidifiers for putting moisture into the o2.
Below is a link to Mr. Happy’s site that shows a pic of the bubbler I am using, thanks once again Randy for providing a source for the pic’s.

http://www.mushys.com/kiwi/bubbler2.jpg

The bubbler I am using is just a 750 ml water bottle with 2 holes drilled in the cap and an air stone that should be available at any store that sells aquarium fish supplies.

I tried a little experiment to see just how much the bubbler would increase the moisture level in the o2 and the results are set out below.

The instrument I used is an RS components humidity & temperature meter ( just back from calibration).
The flow rate was set at 10 litres / Minute
Room temp was 25 oC
Room RH was 81 %

RH = Relative Humidity

The first figure is the RH & the second is the temperature of the air in the test chamber.

o2 with no bubbler 1% 24

o2 with air hose only 43.1% 25

o2 with air hose & air stone 50% 25.1

I have been using this setup for some weeks now and have never come out with a dry mouth and throat.

Hope this helps out for anyone who hasn’t seen a bubbler before.
Kind Regards
Barry

Title: Re: Oxygen tips, information, and links (reposted)
Post by ClusterChuck on Oct 15^th, 2006, 2:43am

Sure is a BUMPy road 'round here ... heehee

Chuck

Title: Re: Oxygen tips, information, and links (reposted)
Post by LadyElaine1 on Oct 16^th, 2006, 8:28am

I been on ch.com since 1999 . I don't post much here cause usually by the time I read the post, someone has already said what I would say. I wanted to say this ABOUT O2.

I was chronic when I first came here, for over 20 years I was chronic. I tried almost everything subjested To me (only after checking with my doctor first and getting a scrip from him). I had some chemo done and it seems that after that I became episodic. I had cluster cycles about every six months after that then every year, now I am hoping it will be every two years !

I found out that some of the meds I was taking really hurt me. They affected my heart for one.
Now I am real careful in what I use. I research all my meds. All side affects. The doctors do not know all the side affects like you would think they would. You have to know and you have to bring it to their attention. You also need to know what drugs not to combined. I use to say I would do anything to get rid of the pain, until I had a heart attack. I said enough, I will just have to deal without any meds. I changed the way I eat, I did not stop smoking but I cut down from a carton a week to one carton every two weeks, less that a half a pack a day. That's great for me! I started taking B-12 1000 mgVitamin C 1000mg, Fish oil 1700 mg. Guess what! I have not been hit in over a year. I also stopped talking as much about ch. I always felt like at times I did bring them on myself. The last time I got hit I used o2 and a over the counter pain med, and both were taken at the fist sign of a ch. My ch did not last as long nor was the pain as intense.

Total years with clusters 27 20 of those chronic, the last seven years have been great, the last three years wonderful compared to what I had been going through. I have to admit when I went off all the drugs the first two weeks were pure hell, but the results were great after that two weeks. I also have to tell you that when the cycle comes back each time its hard not to call my doctor and ask for a drug. I grab the o2 . A shot or pill is quicker and easier but to me the damage it causes my body isn't worth it. They have portable o2 tanks you can keep at work. Screw what people think that see ya sucking on o2.

I use to say o2 did not work for me, and it didn't because I was doing it all wrong. Read chuck post do it right.
If you tried it and it did not work give it a try again, you have nothing to lose and lots to gain if it works. Most doctors will give a scrip for it, and with a few phone calls to your insurance company most will pay PART OF THE COST. Its worth a try! I can't say enough about o2, and I am sorry I fought trying it again. I feel like I have a life now, and I want some of you to have it. It might not work on you but its so worth the try. Even stopping my meds was worth it.

DO NOT STOP YOUR MEDS WITH OUT CHECKING WITH YOUR DOCTOR! SOME MEDS YOU HAVE TO WING YOUR SELF OFF OF! SIDE EFFECTS CAN BE BAD EVEN FATAL IF YOU DO !

I think the o2, getting off all meds, and watching what I eat and cutting back on smoking has all helped me. Oh another thing I do is I sleep with a nose strip on it opens my nose up so I breath better at night.

Hope you didn't mind me adding this chuck.

I would like to thank Happy, Sean, and Chuck for talking me in to trying the o2 again! They gave me my life back in a way I didn't think possiable.

Title: Re: Oxygen tips, information, and links (reposted)
Post by Linda_Howell on Oct 16^th, 2006, 10:29pm

Bumping because it deserves to be. ;)

Title: Re: Oxygen tips, information, and links (reposted)
Post by Barry_T_Coles on Oct 16^th, 2006, 11:34pm

on 10/16/06 at 08:28:42, LadyElaine1 wrote:

Screw what people think that see ya sucking on o2.

My sentimens exactly.
And a great post Elaine.

Kind Regards
Barry

Title: Re: Oxygen tips, information, and links (reposted)
Post by roy21302 on Oct 18^th, 2006, 12:28pm

Thanks Chuck for posting this,I have only recently started using O2. I decided to give another try, having not had success with 10 years ago. Thanks to you, Johnny, Barry and loads of others that use it I have tried and found great relief with it. Thanks everyone love you all Cheers Roy ;;D

Title: Re: Oxygen tips, information, and links (reposted)
Post by ClusterChuck on Oct 18^th, 2006, 9:24pm

on 10/16/06 at 08:28:42, LadyElaine1 wrote:

Hope you didn't mind me adding this chuck.

How could I be upset at ANYTHING you have done, sweetcakes? Besides, it is a GREAT post!

Chuck

Title: Re: Oxygen tips, information, and links (reposted)
Post by ClusterChuck on Oct 18^th, 2006, 9:27pm

on 10/18/06 at 12:28:13, roy21302 wrote:

This is the EXACT reason I periodically repost this!!

If it helps ONE person, it is worth reposting!

Glad it is giving you shorter hits, and more PF time!

Chuck

Title: Re: Oxygen tips, information, and links (reposted)
Post by Barry_T_Coles on Oct 19^th, 2006, 3:26am

Thanks for reposting Chuck & a bloody good idea.
Here's a few things from my archives.

Some Do’s & Don’ts:
Make sure you get a non re-breather mask or cluster mask, that way you are sure of getting the best quality air.
Don’t use the strap on the mask; better still remove it completely, that way you remove the risk of falling asleep with the mask still on once you have aborted the hit and as you will understand we get little enough sleep and our body will take any opportunity to catch up on some badly needed ZZZ’s

I have my rig set for a flow rate of 10 litres/ minute and the regulator set at WELD, I leave the settings alone and simply turn the main valve on when needed, that way as soon as you need to get on the gas there’s no mucking around just turn it on & start huffing.

Here's the info on the bubbler/ humidifier I am using.
The bottle is a 750 ml water bottle. (Pet Bottle)
Hose is standard hose that comes with the mask.
The air stone is available from any pet shop that sells fish supplies and will cost around $1.00 ( make sure you get one that has a reasonable size aperture where the hose connects, if the hole is to small it will reduce the flow rate.
Turn the cap over so you are looking at the inside of the cap, you will see that there will probably be an inner plastic ring that fits inside of the bottle neck, drill 2 holes opposite each other and inside of the internal ring with a drill bit that is slightly smaller than the diameter of the hose ( the tighter the fit the better, stops air leakage),
You can drill the holes by hand it’s a lot safer than a drill "Your in enough pain already without sticking a drill bit through your hand".
Pull the hose from the flow meter through one hole in the top of the cap and adjust the length so that the air stone will sit on the bottom of the bottle, pull the other hose end through the other hole and finish about 25 mm ( 1" ) inside the cap.
To the neck of the bottle tie a length of string with a loop in it so that you can hang the bottle somewhere conveniently on your setup, ( this will stop the bottle falling over & getting water up inside of your mask).
I keep the bottle filled to about half - two thirds full and in the fridge with another cap on it until its needed ( with a note on it TOUCH THIS IN THREAT OF YOUR LIFE).
You may notice that after you have finished there will be moisture inside of the bag, if so hang the bag upside down so that the water will drain, I do this by using a peg with a piece of wire through a hole drilled in one side of the peg and attached to the setup.

Link to bubbler picture:
http://www.mushys.com/kiwi/bubbler2.jpg

Regards
Barry

Title: Re: Oxygen tips, information, and links (reposted)
Post by Beastfodder on Oct 19^th, 2006, 9:59am

Chuck you've helped more than one person.

Just got the episodic cycle back and getting very fed up with the dry mouth, shall moisturise from here. Also been pushing 20 mins on the old tank - the ten minute break sounds a good tip.

Keep on keepin on

Thanks

Title: Re: Oxygen tips, information, and links
Post by pike on Oct 20^th, 2006, 4:02am

And for the dutchies, here's a link to an order form for full gear from the company Hoek en Loos. All it needs is a signature, which can apparently even be provided by the physician (huisarts). Every dutch health insurance currently refunds it. Apparently it is installed at home, for free. Haven't tried it yet. Still waiting for the neurologist ...

http://www.clusterhoofdpijn.nl/pdf/zuurstofaanvraag.pdf

$2c,
*-pike

Title: Re: Oxygen tips, information, and links
Post by Barry_T_Coles on Oct 20^th, 2006, 6:50am

on 10/20/06 at 04:02:02, pike wrote:

Pike thats more than 2cs worth that the full dollar.

Good onya
Regards
Barry

Title: Re: Oxygen tips, information, and links (reposted)
Post by georgej on Oct 24^th, 2006, 10:23am

Bump.

Title: Re: Oxygen tips, information, and links (reposted)
Post by BB on Oct 29^th, 2006, 5:46am

Bump

Title: Re: Oxygen tips, information, and links (reposted)
Post by AussieBrian on Oct 29^th, 2006, 6:48am

There's another side to this, too, and this is by no means a recommendation to others - just something that's worked well for me.

Using the plain old disposable plastic mask with the two little holes in it, pressure set at around 2lbs, put finger and thumb over the little holes and inhale slowly through your nose. Remove finger and thumb and exhale then repeat and repeat and repeat.

A caring doctor told me once that the body can absorb only so much O2 at a time so turning up the pressure was simply a waste of money. I also found that doing it this way had a distinctly calming effect as I had to think about something other than you-know-what. (You can actually feel it crawling up the old schnoz, it's cool like gold.)

Never ever to detract from tried and proven methods as advocated here in beautiful downtown ch.com, just to add another slant in that it might help someone else.