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Topic: Preventing with O2 and ibuprofen (Read 487 times) |
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dazee8
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I have some questions about using oxygen and ibuprofen.
I am interested in using oxygen as a preventative but am having some problems getting a prescription started.
The first problem was that my neuro had never heard of anyone using oxygen to treat clusters, so he requested that I call oxygen therapy suppliers to ask what to put in the prescription.
So I called around and spoke to people at two oxygen therapy suppliers. Both seemed to think that 15 lpm was an insanely high amount of oxygen (though this is the amount that people on the board seem to recommend). One person I called also told me that the prescription would have to include the saturation level that the oxygen would be delivered at. But both suppliers had never heard of a non-rebreather mask.
First, I wonder if anyone can tell me how to get a non-rebreather mask given that the people at these oxygen supply companies haven't seemed to have heard of such a thing.
Second, if a saturation level needs to be in the prescription, what should this level be?
Third, does anyone have general advice about getting started with oxygen?
Up until now, I've been using ibuprofen as a preventative. It's been effective much of the time. What I'm wondering is how much I can safely take per day. The bottle says 1200 milligrams. My neuro says 1600. I've been taking up to 2400. I don't want to damage my kidneys or liver, but the pain is ridiculous.
Thanks.
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Gator
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Re: Preventing with O2 and ibuprofen
« Reply #1 on: Jan 26th, 2005, 12:46am » |
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Do you have a diagnosis of CH from someone besides the so-called doctor that is treating you now? Read the links to the left and take the cluster quiz. Read everything you can get your hands on about the disease and it's treatment. I would consider a different neurologist if he says you have CH and is treating it with ibuprofen.
About your questions:
Firstly, Oxygen is an abortive it is not used as a preventative. Used as 10 - 15lpm via non-rebreathing mask (the one with the bag on it) for 10 - 20 minutes. Use it immediately at the onset of an attack. The trick is to breathe 100% pure oxygen - nothing else. This constricts the blood vessels in the brain and relieves the pain. The saturation levels they are talking about don't mean anything in this therapy. Tell the medical supply place the mask you need is the one with the bag attached. If they don't have it, you can get one online.
If you just cannot get the moron doc and the worthless medical supply place together to come up with a solution, try welder's oxygen. It's the same pure O2 the medical supply places use. Just make sure the bottles you buy/rent are in good condition. Read the links to the left and check this website out.
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
Secondly, you are killing your stomach using that much Ibuprofen and are probably causing rebound headaches as well. I can't believe a neurologist is prescribing you to take this for CH. Again, read the links to the left. Also read and print thie following out and take it to your neuro or better yet take it to another neuro. Yours is gonna hurt you if this is the way he treats CH.
This describes preventative, transitional, abortive and surgical treatments for CH.
http://www.future-drugs.com/admin/articlefile/ERN020304.pdf
Sorry if this sounds a little gruff, but what you are doing right now is probably causing more harm than good. The best advice I can give is what I said above. READ, READ, READ You will need to know as much as you can about the disease in order to keep your treament on track.
Good luck and if you have any other questions please ask.
Gator
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JoeS
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Re: Preventing with O2 and ibuprofen
« Reply #2 on: Jan 26th, 2005, 7:14am » |
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I would concur with Gator's advice 100%. I can't believe that a real neurologist has never heard of oxygen treatment for cluster headache. This should be the first line of defense. He needs to read a book or five.
I'm not all that surprised that the medical supply place hasn't heard of oxygen for CH. They probably haven't even heard of CH. All they only need to know enough to give you a regulator capable of supplying 10-15 lpm, and a large enough tank such that you won't run out too quickly (I got a type "F" tank -- 1700 liters -- which lasts me about two weeks when in cycle).
Best of luck,
Joe
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BobG
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Re: Preventing with O2 and ibuprofen
« Reply #3 on: Jan 26th, 2005, 7:15am » |
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Ditto, ditto to what Gator said.
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Renee
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Re: Preventing with O2 and ibuprofen
« Reply #4 on: Jan 26th, 2005, 7:45am » |
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Where do you live? What country/state?
Indeed, there are problems if a neuro is prescribing ibuprofen for ch.
Print out much from here and take to your neuro. Many of us have had to "teach" our neuros how to treat clusters.
Do a search on non-rebreather masks and see what they look like. Print it out and take to the o2 company.
good luck
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dazee8
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Re: Preventing with O2 and ibuprofen
« Reply #5 on: Jan 26th, 2005, 9:03am » |
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Thanks, everyone. I really appreciate it. This is a great community.
I want to clarify a couple of things/ask about other issues.
First, Gator, you said that oxygen is used as an abortive, not a preventative and to "Use it immediately at the onset of an attack." In the past, I've used Imitrex, Frova and ibuprofen (at separate times, not together) when I've felt a shadow that I believe is signaling the onset of an attack. Should I use the oxygen when I feel a shadow, or should I wait to see if I'm actually having an attack before using the oxygen?
Second, is it ok to use oxygen as many times a day as you need to treat the headaches?
Third, I should say that my neuro has prescribed Frova up to 6 times a week. Does anyone have any opinions on this?
Fourth, does anyone have a list of foods, drinks to avoid when in a cycle?
Thanks again, everyone.
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BobG
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Re: Preventing with O2 and ibuprofen
« Reply #6 on: Jan 26th, 2005, 9:23am » |
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I'm not Gator but I'll answer anyway.
on Jan 26th, 2005, 9:03am, dazee8 wrote:Thanks, everyone. I really appreciate it. This is a great community.
I want to clarify a couple of things/ask about other issues.
First, Gator, you said that oxygen is used as an abortive, not a preventative and to "Use it immediately at the onset of an attack." In the past, I've used Imitrex, Frova and ibuprofen (at separate times, not together) when I've felt a shadow that I believe is signaling the onset of an attack. Should I use the oxygen when I feel a shadow,Yes. Start as soon as you feel the first twing. And keep going at least five minutes after the pain disappears. If it abortes the attack you save on not having to use meds. or should I wait to see if I'm actually having an attack before using the oxygen?
Second, is it ok to use oxygen as many times a day as you need to treat the headaches?Yes. Even if you use it 7 or 9 times a day it won't hurt you. The problems may start if you used it for hours at a time. You may want to put a water bubbler on you rig to add some moisture.
Third, I should say that my neuro has prescribed Frova up to 6 times a week. Does anyone have any opinions on this?
Fourth, does anyone have a list of foods, drinks to avoid when in a cycle? Alcohol is a trigger for most of us. Some are triggered by foods containing MSG. And avoid smoking/open flames while on the O2.
Thanks again, everyone. |
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And please click the 'oxygen info' button on the left side of your screen.
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Marc
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Re: Preventing with O2 and ibuprofen
« Reply #7 on: Jan 26th, 2005, 12:47pm » |
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When suggesting O2 flow rates, it’s important to remember that it varies per individual - their breathing rate and lung capacity. 12-15 lpm tends to get thrown around a lot, but for a smaller person breathing slowly, that could be 7-8 lpm for 100% effectiveness. A big guy huff'n and puff'n may need 20 lpm.
The real key is insure that the flow is keeping up with you – so you are breathing 100% O2 – that’s the right flow rate.
Just ask Den what he thinks the "real" number is 
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BMoneeTheMoneeMan
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Re: Preventing with O2 and ibuprofen
« Reply #8 on: Jan 26th, 2005, 9:13pm » |
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Listen, I was taking tons of ibuprofen daily and my doc freaked out. I was taking 3k a day on a 1600 limit and my BP went through the roof. In addition, the ibuprofen didnt help me and I got rebounds from taking so much of it.
With regard to the O2, I only have a regulator that goes to 8LPM. I only use it at 6lpm til the pain gets better then turn it down to about 2 to 4. At first the O2 helped quickly 100% of the time. But lately, it only helps me about 50 to 60% of the time. Some people here say that if I get a higher flow of O2, it will help me much more then 60% of the time.
Im sure lots of people here will tell you, and my doc told me, DO NOT TAKE PAINKILLERS and they dont help and then give you rebounds.
PF wishes
BMonee
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Gator
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Re: Preventing with O2 and ibuprofen
« Reply #9 on: Jan 26th, 2005, 9:16pm » |
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What Bob said. Try the O2 at the 1st twinge. If it works, you have saved your expensive abortive medicine for another attack. If it hasn't worked in 15 - 20 minutes, it's not going to. Then go for the Imitrex snort or jab. Pills take too long to be an effective abortive.
Used for long periods at a time, Oxygen can cause scarring of the lungs. The way we use it should not cause this problem. Here is an exept from a topic page put out by the National Headache Foundation about side effects. I recommend you read the entire article:
http://www.headaches.org/consumer/topicsheets/oxygen.html
Quote:| The side effects of oxygen inhalation are rare. Cluster headache patients are very often smokers and if one should happen to light up while an oxygen tank is open, the result can be explosive. Another side effect of oxygen use was found by Dr. Kudrow who noticed that 25 percent of his study patients had rebound cluster headaches after oxygen inhalation therapy. No other side effects have been found and therefore, oxygen therapy is safe. |
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I have never used Frova, so I can't speak to it's use or effectiveness. Most people I know of use either Imitrex injection, Imitrex Nasal Spray or Zomig Nasal Spray. I know that the instructions for Imitrex and Zomig NS say you can take 2 per 24 hour period. There are people here who use Imitrex at many times the recommended rate who say they have no ill effects. My own neurologist prescribed that I could use Imitrex "as needed" on the script and explained that I should not use it more than 3 times in a 24 hour period. Since I am able to abort on 3mg instead of the prescribed 6mg, my injectible imitrex goes twice as far and I can "safely" use it 6 times per day.
As to food triggers, every person is different, but there are a few standards: alcohol; chocolate; some dairy products; eggs; foods containing nitrites such as hot dogs, ham and bacon; processed or preserved meats; foods containing MSG
I hope all this helps. Remember, we are all different. What works for one person may not work for another and vice versa. I normally tell people they should consult their doctors about medicines. With what you have said about your doctor, you should consider a new doctor first and then consult him about medicines and dosages.
PFDAN,
Gator
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Marc
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Re: Preventing with O2 and ibuprofen
« Reply #10 on: Jan 26th, 2005, 9:57pm » |
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Quote:| As to food triggers, every person is different, but there are a few standards..........chocolate; some dairy products; eggs; foods containing nitrites such as hot dogs, ham and bacon; processed or preserved meats |
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Gator,
What's your source for this? Not arguing, I've just never seen these referred to as standard triggers for Clusters, but it's a pretty list for Migraines.
Marc
Marc
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Gator
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Re: Preventing with O2 and ibuprofen
« Reply #11 on: Jan 26th, 2005, 10:31pm » |
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Hi Marc
The part about alcohol, chocolate, dairy and eggs come from our own link to the left under Medical Info: "Precipitating factors" section. Foods containing nitrites, such as hotdogs and the like comes from many discussions right here at ch.com. I'll have to go back through my notes to see where the preserved and processed meats came from.
I'll update this post when I find it.
Editted to add:
Here is a link that highlights food with nitrites and preserved meats as triggers.
http://adam.about.com/reports/000099_4.htm
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| « Last Edit: Jan 27th, 2005, 3:41am by Gator » |
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Marc
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Re: Preventing with O2 and ibuprofen
« Reply #12 on: Jan 26th, 2005, 10:39pm » |
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Close enough Gator - I guess I missed that!
Thanks
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dazee8
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Re: Preventing with O2 and ibuprofen
« Reply #13 on: Jan 27th, 2005, 10:32am » |
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Thanks for all your help, everyone!
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