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Bandette74
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O2 questions...
« on: Dec 13th, 2004, 5:46pm » |
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sorry if this has been answered a hundred times or so, but i was just recently diagnosed, and am trying to figure out how to best survive here. i used to try to just live with the pain--you know, keep working and doing whilst pacing and beating your head, etc. but the pain has never lasted this long before--not this many days in a row. i had to work while having a ch last night to meet a deadline, and it's all getting very exhausting.
anyway, now that i've learned that there might be a few things i can do to abort the pain (amazing concept!), i'm trying to learn as much as i can before i have my first neuro appt. on the 20th.
about oxygen (I did check the link to the left--very helpful!): if I ask for a script for this, is it common that I would have to specify a rebreather mask and the humidifyer bag, or would the neuro probably already know about this?
someone mentioned that they were able to get an order from their neuro to have the hospital supply oxygen on an "as needed" basis versus rx a personal supply to the patient. is this common?
i believe that i'm episodic. i haven't had a ch since before this episode in two years, but i have never had an episode with such consistant severity before either. when i think back on it (i was always misdiagnosed with sinusitis), i would have a kip 4-5 for a day or two, a kip 9-10 once or twice for a couple of days, back to a 4-5, another 9-10, then it was gone. this time, i've been chronic for several weeks and counting with great severity of pain about once per day and sometimes twice with lower-grade head pain a couple times every day. the big pains come complete with swollen, leaking eye and nose and lots of pacing and banging my head with the palm of my hand.
i hope i'm a classic episodic, but only time will tell...
any additional tips or info on O2 would be greatly appreciated.
tahnks to all & to all, pfd&n!!!
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BobG
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Re: O2 questions...
« Reply #1 on: Dec 13th, 2004, 6:13pm » |
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Quote:about oxygen (I did check the link to the left--very helpful!): if I ask for a script for this, is it common that I would have to specify a rebreather mask and the humidifyer bag, or would the neuro probably already know about this?
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It is a NON-rebreather mask. And the humidifier is a separate piece and is not a bag. It is a little glass-bottle- like-thing that goes in the hose line. And the neuro may not know what you need. He may prescribe canules (sp?). You know......those little hoses the poke up your nose hole. They will not work. And you need a regulator that will got to 15lpm (liters per minute)
Good luck. Hope you get it.
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Bandette74
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Re: O2 questions...
« Reply #2 on: Dec 13th, 2004, 6:18pm » |
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on Dec 13th, 2004, 6:13pm, BobG wrote:
It is a NON-rebreather mask. And the humidifier is a separate piece and is not a bag. It is a little glass-bottle- like-thing that goes in the hose line. And the neuro may not know what you need. He may prescribe canules (sp?). You know......those little hoses the poke up your nose hole. They will not work. And you need a regulator that will got to 15lpm (liters per minute)
Good luck. Hope you get it. |
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thanks bob!
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Biker
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Re: O2 questions...
« Reply #3 on: Dec 13th, 2004, 8:39pm » |
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If you cannot get medical oxygen, you may want to try welders oxygen. Works for me.
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maryo
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Johnny & Roy puzzle where to apply the O2 mask
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Re: O2 questions...
« Reply #4 on: Dec 13th, 2004, 8:45pm » |
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Hi there,
I do not remember the details, but there are good reasons why welder's oxygen is not ever used for medical purposes. I am a medical provider and I urge you to find a way to get medical oxygen.
I cannot see any reason why your health care provider would not prescribe O2 for you.
maryo
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E-Double
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Re: O2 questions...
« Reply #5 on: Dec 13th, 2004, 9:43pm » |
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My "medical O2" tanks actually have stickers from welder's shops.
Even the supplier who is a Medical Respiratory Equipment Supplier told me that it is the same.
Go figure......
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Not4Hire
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Re: O2 questions...
« Reply #6 on: Dec 13th, 2004, 10:02pm » |
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...glad to hear you're on the o2 trail, it IS a blessing. The main difference between welders and medical oxygen is the inspection of the tanks: medical oxygen cylinders have to maintain a higher standard of cleanliness in the storage of the tanks and contact with moisture which can cause rust, but the purity is the same. There are also inspections of the valves and the pressure components, but the criteria is not very different. A bad welders tank is no less dangerous to the user than is a medical tank.
...as maryo said, you should be able to get a prescription from a health care provider who has done his/her research into oxygen therapy.....
Good Luck.....
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dagger
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Re: O2 questions...
« Reply #7 on: Dec 13th, 2004, 10:07pm » |
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I was told that welder's 02 is not "pure" and it is not recommended. Once many years ago I went to an iron and steel supply place to get medical 02, they were out, and the guy tried to get me to take the other stuff. I said no and he said, "I can't believe you'd go to all this trouble for a "little" headache!" I felt closer to exhibiting violent behavior than any other time in my life.
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heprat
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Re: O2 questions...
« Reply #8 on: Dec 13th, 2004, 11:05pm » |
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First of all...not "if" I ask for a script...just do it...you won't be dissapointed.
This is based on my experience.
Your neuro will write the script and call someone like Apria. They are a large distributor of medical O2. Apria, or whomever, will show up at your house with the tanks, regulator and masks. Don't let them leave without having them give you the correct non-rebreather mask...regardless of wether or not the doctor prescribed it correctly. They cost like $1.50 each (probably cost them 75 cents) and they probably have boxes of them on the truck so it is no big deal to the driver. They'll give you extra if you ask. The driver will then show you how everything hooks up and works.
When the bottles are empty, just call them, leave the empties on the porch and they exchange them during the day...sort of like the old milk men.
A couple of hints...
Have it hooked up and handy...as soon as you feel the slightest hint of a CH start breathing it. If you wait till it is full blown it is a lot less effective. At least this is my experience.
If you experience your headaches at night...keep a small kitchen timer near the couch. I set it for 15 minutes. If I fall asleep it wakes me up so I can shut the O2 off. I am more concerned with running out of O2; however there is also a serious concern regarding falling asleep with the mask on. If the non-rebreather mask fits tight and you have it strapped to your head and you run out of O2...you could suffocate. It is suggested that you remove the straps if you could potentially fall asleep with the mask on.
If you work away from home consider requesting a small E-bottle and extra regulator for your car or office and multiple ebottles or a large bottle for your home.
I have a whole stockpile if Imitrex that I won't be using as long as I have O2. It works for me and has no side effects....wonderful stuff...I hope it works for you.
BTW - My local Apria folks seem to think that the use of O2 to treat CH is pretty common. 7 years ago in San Francisco they thought I was nuts...now here in KC MO they are like...oh, you got clusters...OK we'll set you up.
Good luck to you
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| « Last Edit: Dec 13th, 2004, 11:06pm by heprat » |
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Bill-G
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Re: O2 questions...
« Reply #9 on: Dec 14th, 2004, 1:09pm » |
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re: O2 questions
All the previous posts seem to answer your question. I would also suggest going into the New Visitors section of this site , select the link 'ASK DOC GREG. It has good info on Oxygen and other topics.
Take care
Bill
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Had heard about CH and wondered if anything could posiiblly be all that bad. Seriously thinking of having idiot tatoo done on my forehead now
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Biker
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Re: O2 questions...
« Reply #10 on: Dec 15th, 2004, 1:19pm » |
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I do not remember the details, but there are good reasons why welder's oxygen is not ever used for medical purposes.
Duh????????? Wouldnt that put the doctors perscriptions to be useless---no bucks for prescribing?
Does that not place the pharmisist on the non-pay list?
Does that not intrude on the supplier of medical oxygen(even if they do get it from the same company that supplies welders gas?)
Kinda ruins any chance of a job for the breathing tech. too doesnt it?
And lets not forget the insurance companies who know they are being paid 3 times over what the oxygen is worth. Not to mention increasing the cost of one's personal medical insurance bills.
The whole medical profession is out for bucks. They are not there to cure ya. They are there to make money off your illnesses. If ya dont believe me, just take a long look at old folks in nursing homes. If you ever ask a really old sick person what they want, you probally wont hear the answer your looking for.
When did doctors quit making housecalls? Who (if ever) was the last doctor you could call and ask for a perscription and have it delivered within 3 days? Those days are over. Now, ya gotta see your personal doctor who referes you to another doctor, who also makes a referral to the one they think you should see. They all get a piece of your insurance, who gets a larger chunk of your wages. Then to top it all off, the nursing home gets all your social security, land, and cars, to let ya die in some uncomfortable bed with people ya dont even know.
Sorry I vented a bit here. I guess I have a grudge against the medical profession. I know lots of doctors and nurses, and judges, and attornies. Your dayummed if ya do, and dayummed if ya dont.
Welders oxygen is the same as medical oxygen. Not sure what happens with medical oxygen---been refused perscriptons, but welders oxygen 15 bucks delivered fills 2 bottles worth about 8 weeks in mid cycle for me.
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BobG
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Re: O2 questions...
« Reply #11 on: Dec 15th, 2004, 3:35pm » |
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Well said Biker.
And any welding supplier that sold contaminated oxygen wouldn't stay in business very long.
Like your tag line
kinda like
Drive it like it's rented!
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Bandette74
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Re: O2 questions...
« Reply #12 on: Dec 15th, 2004, 8:47pm » |
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on Dec 13th, 2004, 11:05pm, heprat wrote:First of all...not "if" I ask for a script...just do it...you won't be dissapointed.
This is based on my experience.
Your neuro will write the script and call someone like Apria. They are a large distributor of medical O2. Apria, or whomever, will show up at your house with the tanks, regulator and masks. Don't let them leave without having them give you the correct non-rebreather mask...regardless of wether or not the doctor prescribed it correctly. They cost like $1.50 each (probably cost them 75 cents) and they probably have boxes of them on the truck so it is no big deal to the driver. They'll give you extra if you ask. The driver will then show you how everything hooks up and works.
When the bottles are empty, just call them, leave the empties on the porch and they exchange them during the day...sort of like the old milk men.
A couple of hints...
Have it hooked up and handy...as soon as you feel the slightest hint of a CH start breathing it. If you wait till it is full blown it is a lot less effective. At least this is my experience.
If you experience your headaches at night...keep a small kitchen timer near the couch. I set it for 15 minutes. If I fall asleep it wakes me up so I can shut the O2 off. I am more concerned with running out of O2; however there is also a serious concern regarding falling asleep with the mask on. If the non-rebreather mask fits tight and you have it strapped to your head and you run out of O2...you could suffocate. It is suggested that you remove the straps if you could potentially fall asleep with the mask on.
If you work away from home consider requesting a small E-bottle and extra regulator for your car or office and multiple ebottles or a large bottle for your home.
I have a whole stockpile if Imitrex that I won't be using as long as I have O2. It works for me and has no side effects....wonderful stuff...I hope it works for you.
BTW - My local Apria folks seem to think that the use of O2 to treat CH is pretty common. 7 years ago in San Francisco they thought I was nuts...now here in KC MO they are like...oh, you got clusters...OK we'll set you up.
Good luck to you |
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thanks heprat.
monday's the day i see the neuro. part of me hopes i havd a damn attack in his office to help expidite things.
i understand the welder's and medical debate. obviously, i'll need to do independant research before i choose to go the "non-med" route. hopefully that won't be an issue because my neuro will just Rx the O2--hopefully. if not, then things will get interesting...
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