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New CH.com Forum › Cluster Headache Help and Support › Medications, Treatments, Therapies › Help in getting OXYGEN prescribed

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Help in getting OXYGEN prescribed (Read 47223 times)

thebbz Ex Member	Re: Help in getting OXYGEN prescribed Reply #25 - Sep 3^rd, 2008 at 3:37pm Mask anyone? Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or all the best thebb
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thebbz Ex Member	Re: Help in getting OXYGEN prescribed Reply #26 - Oct 18^th, 2008 at 12:16am Find some 02? Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or thebb
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ClusterChuck

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Re: Help in getting OXYGEN prescribed
Reply #27 - Oct 22^nd, 2008 at 4:56am

Batch wrote on Jul 9^th, 2008 at 1:28pm:

An oxygen flow rate of 12-15 liters/minute with a non-rebreather mask is a MUST on your prescription for oxygen therapy, as is the phrase, "AS NEEDED FOR CLUSTER HEADACHES."

In talking with Pete, we got to discussing what the prescription should read. The above quote is from the middle of Pete's message, and I wanted to pull it out to make sure everyone sees this.

Make SURE that the above wording is on your prescription. Especially the words: As Needed for Cluster Headaches

Chuck

CAUTION: Do NOT smoke when using or around oxygen. Oxygen can permeate your clothing or bedding. Wait, before lighting cigarette or flame.

Keep fire extinguisher available, and charged.

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ClusterChuck

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Re: Help in getting OXYGEN prescribed
Reply #28 - Nov 14^th, 2008 at 9:44am

AussieBrian sent me the following information to help those of you "Down Under" to get your oxygen:

Quote:

I see people posting that they have trouble getting scripts or prescriptions for oxygen so I did a little look around to see what is available.

I sense that this problem may come from doctors not knowing how to get hold of oxygen set ups outside of their own surgery environment.

I have inserted some pics in this post but they may not present on the site due to my inability to post pics but if you go to the link provided you can type in the part #s and have a look.

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Here in Western Australia all that is needed to get the equipment is to set up an account with BOC gasses, easily done by going to one of their outlets and simply starting one up.

You can either buy the gear yourself or for the short term if you are episodic you can hire for a monthly fee a regulator & flow meter that fits the small C size bottle, you will have to pay for the oxygen and an annual rent on the cylinder you then only need the non re-breather mask that you may be able to con from ER if you know someone there.

The beauty of the rental gear is that you don’t have the initial outlay cost and when you go out of cycle you just return the gear, when you return the bottle you should get a credit on the annual rental if you have only had it for a short time.

Here’s the part # for the portable hire gear. It is much like the oxy viva gear you see the paramedics carrying in an ambulance.

Order Code 401KITC Portable regulator & flow meter to fit C size bott

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Thanks so much for your assistance, mate!

Chuck

Edited to add:

From AussieBrian:
Quote:

It's not mine, it's Barry's!!!

(Also, only part of it printed and not the link.)

Thanks, Brian and Barry for bringing this topic up.

Here is the link again: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

(The link printed on my computer, but if it didn't on yours, there it is again)

« Last Edit: Nov 14^th, 2008 at 10:00am by ClusterChuck »

CAUTION: Do NOT smoke when using or around oxygen. Oxygen can permeate your clothing or bedding. Wait, before lighting cigarette or flame.

Keep fire extinguisher available, and charged.

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dazza CH.com Newbie Offline I Love CH.com! Posts: 13	Re: Help in getting OXYGEN prescribed Reply #29 - Nov 26^th, 2008 at 9:48pm Back in cycle after 14 months brake, trying to get 02 prescribed at the moment, I have never tryed it before. My question is , after the 02 aborts the attack is it ok to drink alcohol or dose that bring the ch stright back again. Please say i can have a few beers after a hard days work and not get hit hard!
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Racer1_NC CH.com Moderator CH.com Alumnus Offline "Well, let's go see." Posts: 4417 Lewisville, NC Gender:	Re: Help in getting OXYGEN prescribed Reply #30 - Nov 26^th, 2008 at 9:58pm Best to put the alcohol aside during cycle....
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Shannon0601

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Re: Help in getting OXYGEN prescribed
Reply #31 - Dec 17^th, 2008 at 5:50pm

I have fnally gotten my O2 at home and thank God because I'm having a heck of a time getting my imitrex injections..if I keep the O2 on 15 so far it has taken exactly 10 minutes everytime to kill the pain, much better then suffering for an hour or more. If you haven't tried it yet I would highly suggest getting some.

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Monica CH.com Junior Offline My love for Joe is stronger than the beast!! Posts: 37 Thornville Ohio Gender:	Re: Help in getting OXYGEN prescribed Reply #32 - Dec 29^th, 2008 at 6:13pm My husband and I just signed on to this site today and this information is absolutely appreciated!! He is talking with his Dr regarding the O2 this week, so finding this information has come at the right time! Thank you so much!! Monica
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Rolomatic

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Re: Help in getting OXYGEN prescribed
Reply #33 - Jan 9^th, 2009 at 3:39am

purpleydog wrote on Jul 10^th, 2008 at 1:58am:

Bump.

A couple years ago, when I got hit with an unexpected monster cycle on vacation, and the hits were kip 9's and 10's, and the shadows were 7's and 8's, coming at about an hour apart and the trex wasn't working, and the O2 wasn't really doing the trick, someone here suggested hyperventilating on the O2.

I sucked that O2 at 15 LPM, as high as the regulator would go, as fast and as deeply as I could, emptying the bag with every breath. It worked. Thank goodness for that suggestion, or I would have ended up in the hospital. Hyperventilating the O2 got me through the weekend, until I could talk to my neuro Monday morning, and get a pred taper called in.

O2 works, and works well for most people, but you need to hit it as soon as you feel it start to come on. It kills the hits faster, the sooner you can start breathing it.

Good thread, Chuck.

Beautiful post this is, discovery mixed with bliss… I love the way you described the moment, thank you for sharing that. I felt the same way after I had the right stuff and a bit of help from Pete. All you guy’s ROCK in my opinion.

Notice the mouth piece is straight onto the inlet valve assembly for max flow. The best for me! I can handle 40LPM for 10 min now as I have practiced my breathing. I still wince when it spikes hard, but I can keep up with the high flow rates.

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

O2 ROCKS!!!

Rolo. Cool

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BrettK

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Re: Help in getting OXYGEN prescribed
Reply #34 - Mar 17^th, 2009 at 4:06pm

My GP who works very well with me, felt he couldn't prescribe O2. I think this was either because he had doubts about my CHs or doubts about O2's effectiveness - even with all the evidence I gave him. I decided to fight that battle later if my CH's got worse. One thing he did say is O2 is the same as hyperventilating. It sounded logical to me so I tried it on a CH and, it might be my imagination, but my CH seemed to get better almost immediately. I've had no experience with O2 but I ask those who've researched O2, Is there any difference between hyperventilating and breathing O2? Hyperventilating makes you dizzy. Does the O2 make you dizzy? I'm just looking for the difference between the two. Thanks, Brett

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Guiseppi

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Re: Help in getting OXYGEN prescribed
Reply #35 - Mar 18^th, 2009 at 6:04pm

In a pinch, hyperventilating will reduce a hit by a few clicks, say from a 9 to an 8 or a 7. I'll still have to ride out the attack, but after 30 years, and I say this with all due respect, I have to say your doc is full of sh@@! I can abort an attack in 6-8 minutes breathing pure oxygen. I don't get dizzy, I get PAIN FREE in 6-8 minutes. Hyperventialting lessens the pain a little bit. I find the two options incomparable.

Get another doc, but get oxygen! Wink

Joe

"Somebody had to say it" is usually a piss poor excuse to be mean.

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Rod

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Re: Help in getting OXYGEN prescribed
Reply #36 - Mar 20^th, 2009 at 5:27pm

What I got from the post from Batch is CO2 is not as good as O2.
I hyperventilate all the time when I get hit and usually just go through the normal cycle of pain while waiting for the beast to go away. I'm hoping that O2 will actually abort the pain so I won't need to wait it out.
I'm still waiting for my regulator and mask right now. Hope it works for me.
Rod

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Pixie-elf

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Re: Help in getting OXYGEN prescribed
Reply #37 - Apr 8^th, 2009 at 5:29am

Okay, I have a tip on dealing with an insurance company that doesn't want to approve oxygen for your cluster headaches.

I'm on Medicaid, and as much as my doctors, and the home health care tried, they couldn't get Medicaid to agree to pay for the oxygen. They were told my diagnosis was 'too new'. On top of that, if I wound up on Medicare, they wouldn't even cover it, either...

Since they wouldn't pay for it for cluster headaches... My home health care company found another way to get it.

I have central apnea, a form of sleep apnea. The home health care company informed me that as long as my 02 saturation during sleep was less than 88%, Medicaid could NOT deny me the oxygen.

I told them this 3 days ago...and now Medicaid is paying for the oxygen.

I was told that they can get it for sleep apnea, COPD, and a few other problems. They might end up asking you to have a monitor on you overnight, but that's something small in exchange for a lot of relief!

I hope this helps someone else.
PFDAN
Mystina

As far as I'm concerned, cluster busting has been the best treatment I've tried. No migraines since I started it, and my hits have gotten so much better. Wanna know more?
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

It's saved my life.

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CHvsTN

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Re: Help in getting OXYGEN prescribed
Reply #38 - May 15^th, 2009 at 9:02am

My advice: Never admit to being a smoker. I can only speak for Scots, but even after O2 was recommended by a consultant neurologist, my GP refuses to give oxygen to me on the grounds that it is "unsafe" for smokers.

Being misdiagnosed by the medical profession is commonplace for CH sufferers, but refusing to help abort the pain after the correct diagnosis has been made and a suitable abortive found is beyond belief - and akin to sadism!

I live alone and cannot even think about trying to use the phone during a Kip10 (let alone light up a cigarette) - so I can't even arrange to get carted off to hospital when I need O2 - 3 more hours of unnecessary torture thanks to my GP.

Goodbye honesty. Lie, lie, lie, and lie again.

Angry

NotAHappyChappie.

... and by opposing, end them.

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thebbz Ex Member	Re: Help in getting OXYGEN prescribed Reply #39 - Jun 24^th, 2009 at 12:05am Quote: Goodbye honesty. Lie, lie, lie, and lie again. Please dont lie to your doctor. Get one that is right for you. Lying to your doc is dangerous. the bb
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Aussie6330 CH.com Junior Offline I Love CH.com! Posts: 49 Western Australia Gender:	Re: Help in getting OXYGEN prescribed Reply #40 - Aug 16^th, 2009 at 10:57pm To all the Aussies out there please read the post on the message board "O2 for Aussies" for all my other Cluster friends......there must be a similar company in your country........Oxycare in Australia are FANTASTIC!
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daisygirl CH.com Newbie Offline I Love CH.com! Posts: 2 Indianapolis, IN Gender:	Re: Help in getting OXYGEN prescribed Reply #41 - Sep 3^rd, 2009 at 4:29pm I do not see the yellow "oxygen" button on the side, in fact I do not have any buttons on the side. and I am really in need of oxygen info! can anybody help?
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gizmo CH.com Hall of Famer Offline Posts: 522 Germany Gender:	Re: Help in getting OXYGEN prescribed Reply #42 - Sep 3^rd, 2009 at 4:43pm Here's the direct link: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or
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jason17

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Re: Help in getting OXYGEN prescribed
Reply #43 - Apr 26^th, 2010 at 9:56pm

I almost hate to ask but I’m a poor white boy with wife and 2 kids on a single poor boy income. How much is the oxygen setup usually? I suffer about 6-8 times a day and usually just take 2-BC powder and ice pack. Last time I was talked into visiting a Nero doc it cost about $375 for him to listen to me for about 30min & tell me if BC works use it not to mention when I got to his office. He was about an hour late and I sat in the waiting room with a kicker and by the time I got in front of him it was 90% over! Bad experience I can’t say what it thought of him and how I was cheated zip of 34104 Angry

. Again I really don’t have money and hate to put it like that. But kids needed to eat. I can’t imagine average of 16-20 BC can be too good for dads health? Any suggestions?

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k herrera CH.com Newbie Offline I Love CH.com! Posts: 1	Re: Help in getting OXYGEN prescribed Reply #44 - Jul 13^th, 2010 at 2:50am hey everyone, im 19 having my first attack and I was wondering how much does all the oxygen equipment cost?
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gardengal CH.com Junior Offline I love YaBB 1G - SP1! Posts: 55 x0\|oskaloosa\|USA\|\|0\|0\| Gender:	Re: Help in getting OXYGEN prescribed Reply #45 - May 29^th, 2011 at 12:22pm WHY are doctors so hard to convince? We aren't asking for narcotic pain killers. My dr offered oxycodone and hydrocone. I don't want that!! What harmful effects can oxygen have?
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Guiseppi

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Re: Help in getting OXYGEN prescribed
Reply #46 - May 29^th, 2011 at 12:37pm

None. That's the beauty of 02. If you don't lock yourself in a confined space, fill it full of 02 and then light a fire.......then there's practically no way to harm yourself with oxygen. We've made great strides in educating the medical community at large. Postings like yours show us we still have a ways to go.

Joe

"Somebody had to say it" is usually a piss poor excuse to be mean.

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Rosestillarose CH.com Newbie Offline I Love CH.com! Posts: 1	Re: Help in getting OXYGEN prescribed Reply #47 - Aug 6^th, 2011 at 8:51pm sorry, were is the info we are to print for our doctor. i'm really excited that i found out about this and can't wait to try... thanks so much!
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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Help in getting OXYGEN prescribed Reply #48 - Aug 6^th, 2011 at 10:25pm Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or Read this link. It has all the info you could need for 02. Welcome to the board! Joe
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domino

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Re: Help in getting OXYGEN prescribed
Reply #49 - Dec 21^st, 2011 at 6:21pm

I have a questions don't laugh but is the O2 cold when you breath in? My clusters are always in winter and even though 90% of the time they wake me up, if its a cold day i can get a moderate attack (the annoying niggly ones that you can still function with and make you grumpy)

I have found that slow deep breaths do help - but not cold air Grin

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