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cavalier

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A question to you all, What do i do??
Mar 30^th, 2009 at 9:31pm

A serious question after all the drawl i often put on the posts
I'm of to the doctors tomorrow for him to prescribe prednisiolone again after a long spell on verapamil, you can probably guess the reason.
My question to you all is,
I've seen a lot mentioned about O2 but the last time i asked for it the Doc looked at me, smiled sweetly and said " you don't need that"
and i agree, grit you teeth, hold on and get on with it which i have.
Now! my wife said i've got to insist but i can't get it out of my head that when my Dad died in October he had always got a mask on,(he died of cancer)""" sorry dad"""
Anyway i feel if I have to use it I would feel like an invalid, and i'm not
I really don't know what to do or think.
I don't think i could sit wearing a mask i would rather bang my head.
Help!!

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: A question to you all, What do i do?? Reply #1 - Mar 30^th, 2009 at 9:42pm You don't wear it when you're not getting hit, and chances are you won't be able to sit when you're using it (that's why you get a 25-ft hose). Read the yellow link at the left called oxygen info.
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just-squiggles

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Re: A question to you all, What do i do??
Reply #2 - Mar 30^th, 2009 at 9:44pm

1- If the thought of the mask bothers you use the mouthpiece that comes
with the the clustermax set up (see O2 page)
2- You won't be on it at all times,20 minutes per hit max.
3- O2 is so much safer and has so many less side effects than any of the meds.
And for many O2 is a faster abortive at high flow rates than even imitrex.
4-Grit your teeth and get with it? what are you superman? It is up to you,
of course but it seams insane to me to not at least try the O2.
5- You don't have to "sit with a mask on" get a long hose and pace away.
6-As for your doc saying you don't need it,that's just crazy! There is
plenty of documentation supporting O2 use for CH. Again,see O2 page.
Good luck and PF2U

p.s. I'm sorry about your Dad,I know what that's like,I lost my Dad to cancer too.

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Linda_Howell

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Re: A question to you all, What do i do??
Reply #3 - Mar 30^th, 2009 at 9:47pm

Well, If you would rather bang your head then nothing we say here is going to change that, is it?

We use 02 to abort an attack. Sometimes in as little as 10 mins. I would hardly call that being thought of as an invalid who needs to have it on 24/7 like someone who has emphasema or another disorder like that which require one to carry it around all the time.

According to the Brits around here, they (doctors) cannot deny you oxygen.

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Hurt people.....hurt people. Think about it.

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ClusterChuck

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Re: A question to you all, What do i do??
Reply #4 - Mar 30^th, 2009 at 10:04pm

Once you get the oxygen, the right set up, and the proper way to use it, and see what a GREAT weapon it is, you will be kicking your own ass for being such a dummy, and not getting on it sooner!

BUT, it is your choice: Bang your head for 45 minutes to 3 hours, or suck on oxygen for 7 to 20 minutes.

And I could care less what someone thinks of me, if they see me sucking away on that beautiful oxygen device! I can abort, sometimes, in as little as FOUR minutes! They can think whatever they want! I am out of pain!

Chuck

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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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George

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Re: A question to you all, What do i do??
Reply #5 - Mar 30^th, 2009 at 10:04pm

Wouldn't you like to have a treatment that will kill an attack within a few minutes? Something with few, if any, side-effects? Something completely natural and inexpensive?

Oxygen.

It's only a psychological barrier you're facing. I don't think I'd let disquiet over breathing oxygen interfere with relief. With CH, one does what one has to do.

If it makes you feel any better, thousands of fit and healthy people (military pilots) breathe pure oxygen every day--sometimes for hours at a time. I hardly think they are invalids. Wink

All the best,

George

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"Whoever loveth me, loveth my hound." (Thomas More, author of "Utopia", and Chancellor of England. 1477-1535)

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BMoneeTheMoneeMan

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Re: A question to you all, What do i do??
Reply #6 - Mar 30^th, 2009 at 11:58pm

I agree.....sometimes the stigma associated with O2 causes me to keep it private. I get up and go my car to use it.

After walking out of a movie this weekend which I really wanted to see with my daughter, I have come to the decision that I am going to take my O2 into the movie theater with me next time. If people look at me funny or if someone is bothered by the hissing sound, they have my sincere apologies.....but I need to live my life too.

So, my advice it to get it and use it. Laugh in your doctor's face if he tells you that you do not need Oxygen. Then, tell him to research it after he gives you a script. Denying you relief due to his ignorance is not what you are seeing him for.

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"Fool me once, shame on, shame on you. Fool - can't get fooled again"&&&&&&Think of how stupid the average person is, and then realize half the population is stupider than that.&&&&

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Bob Johnson CH.com Alumnus Offline "Only the educated are free." -Epictetus Posts: 5965 Kennett Square, PA (USA) Gender:	Re: A question to you all, What do i do?? Reply #7 - Mar 31^st, 2009 at 8:24am Look at the links you have been offered. Look for materials which come from medical sources and print them to give to your doc. When dealing with docs, they will accept as valid stuff which they recognize as from known medical sources.
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Marc Ex Member Gender:	Re: A question to you all, What do i do?? Reply #8 - Mar 31^st, 2009 at 9:31am I suppose it depends upon how bad your head hurts.
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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: A question to you all, What do i do?? Reply #9 - Mar 31^st, 2009 at 10:58am 6-8 minutes to abort.....be completely pain free and on my way again....or 45-90 minutes of banging my head and crying. Chuck said it best, once you have 02, you'll kick your own backside for waiting so long. Best of luck to you. Joe
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icedragon

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Re: A question to you all, What do i do??
Reply #10 - Mar 31^st, 2009 at 2:47pm

Quote:

A serious question after all the drawl i often put on the posts
I'm of to the doctors tomorrow for him to prescribe prednisiolone again after a long spell on verapamil, you can probably guess the reason.
My question to you all is,
I've seen a lot mentioned about O2 but the last time i asked for it the Doc looked at me, smiled sweetly and said " you don't need that"
and i agree, grit you teeth, hold on and get on with it which i have.
Now! my wife said i've got to insist but i can't get it out of my head that when my Dad died in October he had always got a mask on,(he died of cancer)""" sorry dad"""
Anyway i feel if I have to use it I would feel like an invalid, and i'm not
I really don't know what to do or think.
I don't think i could sit wearing a mask i would rather bang my head.
Help!!

Give O2 a try... When I first heard about O2, I thought there is no way, but it works. If you start soon enough, before a hit starts ramping up, you might not even get to the point of wanting to bang your head. Good luck.

Thomas

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-johnny-

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Re: A question to you all, What do i do??
Reply #11 - Mar 31^st, 2009 at 4:37pm

if your doctor won't prescribe o2 fire him. i personally don't use them for ch.
another thing you can do is go to delille or linde and rent an o2 tank or buy one. you can fill them for $25 or less.

here are a few helpful links
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

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

or

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

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

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Brew

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Re: A question to you all, What do i do??
Reply #12 - Mar 31^st, 2009 at 4:44pm

-johnny- wrote on Mar 31^st, 2009 at 4:37pm:

if your doctor won't prescribe o2 fire him. i personally don't use them for ch.
another thing you can do is go to delille or linde and rent an o2 tank or buy one. you can fill them for $25 or less.

here are a few helpful links
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

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

or

He's in England. They do things a little differently there.

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"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so." --Ayn Rand

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-johnny-

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Re: A question to you all, What do i do??
Reply #13 - Mar 31^st, 2009 at 5:40pm

Brew wrote on Mar 31^st, 2009 at 4:44pm:

-johnny- wrote on Mar 31^st, 2009 at 4:37pm:

if your doctor won't prescribe o2 fire him. i personally don't use them for ch.
another thing you can do is go to delille or linde and rent an o2 tank or buy one. you can fill them for $25 or less.

here are a few helpful links
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

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

or

He's in England. They do things a little differently there.

surely he can still get welders o2 there right?

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

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cavalier

Ex Member

Re: A question to you all, What do i do??
Reply #14 - Mar 31^st, 2009 at 6:18pm

Just read all the comments and advice and thank you all.
To be honest after sleeping on it I went to the doctors today and explained what i had previously read on this site before regarding O2, anyway he said I could have it and there is plenty of evidence to suggest "they are right"But!! he can't just give me a prescription like that, it would involve a home safety check, where will it be put, how will it be used, how to use it Blah Blah Blah It would involve being obtained by an independent supplier and there's masses of paperwork!!!!
I've come home with a 5 week supply of Prednisolone.
Didn't feel like arguing the toss
Colin.

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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: A question to you all, What do i do?? Reply #15 - Mar 31^st, 2009 at 7:30pm They made me to the whole home walk thru the first time...gave me the signs I'm supposed to post on my door..."oxygen in use"...like a big scarlet letter!!! Damned if I can find those signs now..... Joe
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mrs mac

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Re: A question to you all, What do i do??
Reply #16 - Mar 31^st, 2009 at 7:39pm

Quote:

Just read all the comments and advice and thank you all.
To be honest after sleeping on it I went to the doctors today and explained what i had previously read on this site before regarding O2, anyway he said I could have it and there is plenty of evidence to suggest "they are right"But!! he can't just give me a prescription like that, it would involve a home safety check, where will it be put, how will it be used, how to use it Blah Blah Blah It would involve being obtained by an independent supplier and there's masses of paperwork!!!!
I've come home with a 5 week supply of Prednisolone.
Didn't feel like arguing the toss
Colin.

Hey Colin

god gp's make me so mad sometimes!!!

ok first thing to do is log on to Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

, then go to the downloads section, you will see something called a HOOF Form download!!

print that off then take it to your gp, it is already partially completed for CH sufferers, all your doc has to do is fill out the surgery details and your details then FAX it off to the O2 company for your area, who will contact you direct re your delivery!!! Paper work done!!!!

never heard of a home safety check being done!!! as regards how you use it, well you use it when you feel the onset of a cluster attack coming on and stay on it till it's done!!!! i mean, honestly it's not that difficult!!!!

as for the steroids, did he tell you what dose to start with and how to taper them off???

i would suggest he phone the OUCH UK helpline if he still has any questions re the O2, and yourself if you still have problems getting a prescription for it!!!

01646 651 979

Sandra

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ClusterChris

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Re: A question to you all, What do i do??
Reply #17 - Mar 31^st, 2009 at 8:09pm

I had the safety check as well, it was a five minute deal that they did when they brought me my first tank. Its not like they go through your whole house. they just tell you the places you shouldn't store it and give you a run through of how to use it. Pretty basic.

So don't let that be a deterent.

Good luck
Chris

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maalstroom

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Re: A question to you all, What do i do??
Reply #18 - Apr 3^rd, 2009 at 12:40pm

Guiseppi wrote on Mar 31^st, 2009 at 7:30pm:

They made me to the whole home walk thru the first time...gave me the signs I'm supposed to post on my door..."oxygen in use"...like a big scarlet letter!!! Grin

Damned if I can find those signs now.....

Joe

Joe, I completely forgot that. Mine says ''Niet roken - zuurstof in gebruik'' = don't smoke - oxygen in us.
Anyway, it never made it to the door: I prefer the Welcome to hell doormat
and the quote ''All ye who enter here, abandon all hope'' above the door.

Pascal.

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...AND AS A FINISHING TOUCH, GOD CREATED THE DUTCH.

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