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Oxygen pusher's!! (Read 22488 times)
MITYRARE
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Re: Oxygen pusher's!!
Reply #25 - Nov 29th, 2008 at 8:04pm
 
Garys_Girl wrote on Nov 29th, 2008 at 7:03pm:
Here are 02-as-CH-abortive studies:

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  1. Di Sabato F et al. Hyperbaric oxygen in chronic cluster headaches: influence on serotonergic pathways. Undersea & hyperbaric Medicine. 1997; 24(2): 117-22.
  2. Gallagher RM et al. Analgesic use in cluster headache. Headache. 1996; 36(2): 105-7.
  3. Pascual J et al. Preventive effects of hyperbaric oxygen in cluster headache. Headache. 1995; 35(5): 260-1.
  4. Di Sabato F et al. Hyperbaric oxygen therapy in cluster headache. Pain. 1993; 52(2): 243-5.
  5. Fogan L. Treatment of cluster headaches. A double-blind comparison of oxygen v air inhalation. Archives of Neurology. 1985; 42(4): 362-3.

This study (2002) does not mention the 02 flow rate used, but hypothesizes that the cooling effect is more important than the actual use of 02:
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"Titre du document / Document title
Cold room air inhalation to abort cluster headaches: an exploratory study
Auteur(s) / Author(s)
SUE MCLEOD Martha ; ANDRASIK Frank ; PACKARD Russell C. ; MILLER Bayard D. ;
Résumé / Abstract
Research has shown that inhalation of pure oxygen is effective in aborting cluster headache. This article advances the hypothesis that cooling is the critical ingredient behind the effectiveness of oxygen inhalation, rather than the oxygen concentration. To test this hypothesis, eight cluster headache participants used a device that delivered cooled room air as a means to abort headache attacks. Additionally, six of the subjects administered pure oxygen so that comparisons could be made to the air-cooling device. The proportion of cases in which subjects attained effective relief from cluster headache pain by use of the air-cooling device was significantly higher than the proportion of cases in which subjects did not attain effective relief from headache pain. There was no significant difference between the proportion of headaches relieved by oxygen and the proportion of headaches relieved by the air-cooling device. This study raises questions about the mechanisms of action of oxygen inhalation for treating cluster headache, and indicates that future clinical investigations into the use of cold room air for treating cluster headache pain are warranted.
Revue / Journal Title
The Journal of headaches and pain   ISSN 1129-2369
Source / Source
2002, vol. 3, no1, pp. 33-36 [4 page(s) (article)]
Langue / Language
Anglais
Editeur / Publisher
Springer, Milano, ITALIE  (2000) (Revue)
Localisation / Location
INIST-CNRS, Cote INIST : 27383, 35400011594448.0050

Copyright 2008 INIST-CNRS. All rights reserved"


And here is the latest from Dr. Goadsby (2008):
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"Oxygen Therapy Provides Benefits for Treatment of Cluster Headache: Presented at ANA

By Andrew N. Wilner, MD, FACP, FAAN

SALT LAKE CITY, Utah -- September 24, 2008 -- Inhaled oxygen therapy is effective for the treatment of acute cluster headache and should be considered a first-line treatment, according to research presented at the American Neurological Association (ANA) 133rd Annual Meeting.

Peter Goadsby, MD, Headache Center, University of San Francisco, San Francisco, California, presented the study findings here on September 22.

Cluster headache occurs in 0.1% of the population and is the worse kind of pain that people can experience, Dr. Goadsby said. Patients typically experience 1 to 8 headaches a day for 2 to 3 months and then are headache-free for the rest of the year.

Although oxygen therapy has long been touted for the treatment of acute cluster headache, there is only 1 controlled trial in the literature comprising a mere 19 patients to substantiate this claim, Dr. Goadsby observed. Obtaining reimbursement for oxygen therapy for acute cluster headache has been difficult owing to lack of its documented effectiveness, he said.

Dr. Goadsby and colleagues evaluated the efficacy of oxygen therapy in 109 adults who met the criteria of the International Headache Society for cluster headache. Recruitment was performed in conjunction with a cluster headache support group.

During each attack of cluster headache, patients were randomised to treatment using an identical-appearing gas cylinder containing either 100% oxygen or air for 4 separate cluster headaches occurring on different days.

The study was performed between March 2003 and April 2007. Patients who had previously received oxygen treatment were excluded.

A total of 150 headaches were tested with oxygen and 148 with placebo. When assessed after 15 minutes, 78% of the patients treated with 100% oxygen had complete resolution of their headaches, compared with 20% of those treated with air (P < .001). Patients tolerated the oxygen therapy well, Dr. Goadsby said.

He observed that oxygen treatment does not alter the frequency of cluster attacks but is used for the treatment of acute attacks.

Other therapies available include sumatriptan by injection and nasal sprays containing sumatriptan or zolmitriptan.

Dr. Goadsby acknowledged that the mechanism of action of oxygen in treating cluster headache remains unknown.

Now that oxygen therapy has been proven effective, Dr. Goadsby plans to do dose-ranging studies to find the minimal effective dose of oxygen that will be effective to treat acute cluster headache.

[Presentation title: A Randomized Placebo-Controlled Crossover Study of Oxygen in Acute Cluster Headache. Abstract M-93]"

Laurie



Laurie,
Thank you for posting these reports and findings.

The Goadsby report indicating a response of 78% to oxygen is of particular interest to me as it is the first study i have heard showing a result in excess of 70%. Perhaps the oxygen in England is better than we get here in Canada   haha    
It would be interesting to know if the subjects in the study were on preventer medications during the study, and if any particular preventer drugs make a difference as to a better response to oxygen therapy...There are just so many ways to look at these things!

I still respectfully request that the O2 pushers keep in mind that there are many CH patients that derive no benefit from O2...and they especially need compassion for dealing with their pain.  

I do still believe the the O2 pushers must continue to push their message to all newly diagnosed CH patients and provide them with the correct info in terms of flow rates and equipment use and sources to acquire such equipment...keep up the good work!
Paul
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« Last Edit: Nov 29th, 2008 at 8:05pm by MITYRARE »  

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Re: Oxygen pusher's!!
Reply #26 - Nov 29th, 2008 at 8:22pm
 
At the risk of being repetitive:

As a 12 year chronic CH’er, I know that O2 works wonders for me. I could cry thinking of the many cumulative hours of absolute agony I endured because I didn’t know how to use it right. I told the good folks on this board in 2000 that it didn't work for me.

If I step on someone’s toes because I energetically endorse it – oh well. I’m willing to piss off some folks if I can save a real Clusterhead even 1 minute of a true K10. If you don’t understand this, you have never had a real K10.

That’s why I posted pictures and prices of my welding tank transfill setup (I copied Sharkboy’s and Jonny has had his for many years.)
If I had known about it, I could have just sucked on the tube of a welding O2 tank with the regulator blasting – instead of facing the horror again and again while I awaited the medical process.  I cringe when I see people posting that they may have their O2 “next week” – good God.

Yes, I know that it doesn’t work for some folks, but I’m willing to bet that it can work for even more real Clusterheads than the 70% most often quoted.

If it saves someone even 1 minute of a real K10..................

Respectfully,

Marc
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Re: Oxygen pusher's!!
Reply #27 - Nov 29th, 2008 at 8:31pm
 
Righ on the money, Marc!!
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Re: Oxygen pusher's!!
Reply #28 - Nov 29th, 2008 at 8:36pm
 
Marc wrote on Nov 29th, 2008 at 8:22pm:
If it saves someone even 1 minute of a real K10..................



How right you are Marc! After one knows what it’s like to punch themselves in the head so hard they are seeing stars, and doing what I call the Linda Blair for an hour straight you will know what a real K10 is…Oh I forgot, add a pint of snot to it...

3 years of horror spent with the wrong mask, if only I could retrieve the sanity lost!

Roland. Smiley
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« Last Edit: Nov 29th, 2008 at 9:19pm by N/A »  
 
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Re: Oxygen pusher's!!
Reply #29 - Nov 29th, 2008 at 10:22pm
 
Quote:
The support group that Dr. Goadsby refers to is us, isn't it?  I do remember our members being recruited for a similar study being done by him.


I think this was the one done in the UK quite a while ago to get evidence to support its continued use as a licensed treatment for CH. Results seem to take forever to be published

W
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Re: Oxygen pusher's!!
Reply #30 - Nov 29th, 2008 at 10:25pm
 
Yeah, it says the study was performed between 2003 and 2007.

Laurie
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Re: Oxygen pusher's!!
Reply #31 - Nov 30th, 2008 at 8:20am
 
I can't quote chapter and verse but there ARE other O2 studies going on with high flow rates.

Look, kids, back years ago we were doing 8-10 liters a minute with a regular mask and it worked up to a point. THEN we LEARNED that a higher flow rate with a NON-rebreather mask WORKED a LOT better and people who had never had any luck with O2 suddenly had success with it. Who knows where we'll be with O2 in a couple of years?

We don't have a "cause" for CH to date, so we're still trying to find something that will relieve the pain for us NOW while doctors are LOOKING for the cause.

O2 works for a majority of us and YES, those of us who swear by it are going to "suggest" it to anyone we talk to. It's cheap, non-invasive and if it works for them, so be it. If it doesn't work, then they're not out an arm and a leg like with some of the drugs that are on the market.

I AM an O2 PUSHER and I have taken about every drug on the market and find that O2 works better than all of them for ME. Over the years it has NOT diminished in it's use - only increased it's effectiviness with the higher flow rates and the better masks. I still take a preventative (topamax) but have lowered the dose to the lowest dose since I started taking it back in 99 and hope to be able to quit taking it totally in the near future thanks to O2. It's been almost 5 months since I had to take another abortative (and I was taking them daily) thanks to the HIGHER flow rate of O2.

If anyone can get "part" of the relief I've gotten from O2, then YES, I will PUSH it every chance I get. THis is something I truly believe is WORTH a try.

Hugs BD
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Re: Oxygen pusher's!!
Reply #32 - Nov 30th, 2008 at 10:13am
 
If I were the teacher, Barbara's post would get an A++

O2 doesn't always work for me, but it is not only cheap, effective, and safe..... but works quickly.  Trex injects rarely work for me, so the speed O2 works is sooooo key for me.  Also, if it isnt going to work I dont have to wait 30 mins to go to my trust backup plan.

(I am currently on nothing and having a very tame cycle)

BTW, my trusty last resort is Zyprexa.  Not something I like to take, but it works for me
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Re: Oxygen pusher's!!
Reply #33 - Nov 30th, 2008 at 5:13pm
 
Just Plain Carl wrote on Nov 28th, 2008 at 7:30pm:
I tried oxygen about 15 years ago, but it was a small emergency tank with the wrong kind of mask.  Needless to say, it did not work so i never tried it again.

With this cycle I got on board here and after reading all the info on oxygen, I reluctantly got all the stuff.

It sure would have been nice to know 35 years ago.



I think the O2 button should lead directly to the oxygen info section.


I completely agree with this statement, JPCarl. The "oxygen info" button USED to jump you here:

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...and the link is still under the "headache links" then to "CH Sites" then OXYGEN! at the left.

NOW, the "oxygen info" button takes you to a Linde gas commercial. Which is OK, but not particularly informative.

At any rate, the OUCH site has more information re oxygen than you can probably read in one sitting.

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Mantra: This will NOT kill me...This will not KILL me...This will not kill ME..
 
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Re: Oxygen pusher's!!
Reply #34 - Dec 1st, 2008 at 3:21pm
 
This is just my humble opinion but I do believe that at least 20% of those who say that Oxygen doesn't work for them, have not tried it again at the higher flow rates with better masks or mouthpieces.

Understandably one can just decide it didn't work before so I am not going to try it again. And who am I to tell them otherwise? But just knowing how us folks are I would bet there are many like this. Please don't kill me.   ,Don
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« Last Edit: Dec 1st, 2008 at 3:25pm by Skyhawk5 »  

Though I walk through the valley of the shadow of the Beast , I  have O2 so I fear him not.
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Re: Oxygen pusher's!!
Reply #35 - Dec 1st, 2008 at 3:38pm
 
I said something similar earlier in this thread. I would also add IMMEDIATE USE to your list of flow rate and mask. I don't know what the number is, but I certainly agree with the concept. I was convinced that it didn’t work for me and you could not have convinced me how wrong I was. I had to find out for myself.

No, I'm not a medical expert, nor will I presume to speak for others. I will keep advocating O2 as a first line treatment for new folks coming here seeking relief.
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Re: Oxygen pusher's!!
Reply #36 - Dec 1st, 2008 at 3:57pm
 
Anyone not willing to take a second look and try O2 again at higher flow rates with the correct mask at the first onset signs of a CH, must truly not be a CH sufferer...because as any CH patient knows...we will go to the ends of the earth to find relief.

This, I absolutely agree with!


That being said, what works for most of "you" does not work for some of "us".   It is this feeling of prejudice that i was concerned about in my previous posts. No good can come of it.
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Re: Oxygen pusher's!!
Reply #37 - Dec 1st, 2008 at 4:15pm
 
MITYRARE wrote on Dec 1st, 2008 at 3:57pm:
Anyone not willing to take a second look and try O2 again at higher flow rates with the correct mask at the first onset signs of a CH, must truly not be a CH sufferer...because as any CH patient knows...we will go to the ends of the earth to find relief.

This, I absolutely agree with!


That being said, what works for most of "you" does not work for some of "us".   It is this feeling of prejudice that i was concerned about in my previous posts. No good can come of it.


There is no prejudice against those that O2 doesn't work for.  It is for those who aren't willing to try it with the right mask and flow rate.  It honestly makes no sense.  It took me a few tries and O2 doesnt always work for me... BUT I'll "push" O2 becasue it works so often for most
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Re: Oxygen pusher's!!
Reply #38 - Dec 1st, 2008 at 4:45pm
 
FramCire wrote on Dec 1st, 2008 at 4:15pm:
MITYRARE wrote on Dec 1st, 2008 at 3:57pm:
Anyone not willing to take a second look and try O2 again at higher flow rates with the correct mask at the first onset signs of a CH, must truly not be a CH sufferer...because as any CH patient knows...we will go to the ends of the earth to find relief.

This, I absolutely agree with!


That being said, what works for most of "you" does not work for some of "us".   It is this feeling of prejudice that i was concerned about in my previous posts. No good can come of it.


There is no prejudice against those that O2 doesn't work for.  It is for those who aren't willing to try it with the right mask and flow rate.  It honestly makes no sense.  It took me a few tries and O2 doesnt always work for me... BUT I'll "push" O2 becasue it works so often for most



totally agree too!!!!!

it is those who aren't willing to try O2 that kind of bug me, how can they say it doesn't work for them if they're not willing to give it a go!!! Undecided
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Re: Oxygen pusher's!!
Reply #39 - Dec 1st, 2008 at 4:56pm
 
I appreciate your point Mityrare. I feel great compassion and sadness for those who put in the effort to get a proper O2 rig and procedure and still come up empty. There is a collective feeling of seeing someone get right near the goal and come up short - and it's sadness.

That being said, for many of us, our lives were miraculously changed when we found O2 (or the proper use of O2). Amazed that this slight bit of "control" of our lives could change our worldview in such extraordinary ways that we often become evangelists.

So please understand that it isn't a lack of compassion at all. You'll never find a more compassionate group.
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Re: Oxygen pusher's!!
Reply #40 - Dec 1st, 2008 at 5:15pm
 
seasonalboomer wrote on Dec 1st, 2008 at 4:56pm:
I appreciate your point Mityrare. I feel great compassion and sadness for those who put in the effort to get a proper O2 rig and procedure and still come up empty. There is a collective feeling of seeing someone get right near the goal and come up short - and it's sadness.

That being said, for many of us, our lives were miraculously changed when we found O2 (or the proper use of O2). Amazed that this slight bit of "control" of our lives could change our worldview in such extraordinary ways that we often become evangelists.

So please understand that it isn't a lack of compassion at all. You'll never find a more compassionate group.


Thanks for the great post!
I have no problem with you becoming "evangelists" for O2 and I do feel the compassion of the group...but as one  "who put in the effort to get a proper O2 rig and procedure and still come up empty" time after time.
The feeling of failure or inadequacy or despair makes me feel like each person being recomended O2 should be advised as to the real odds of success.

Maybe i am just feeling a little sorry for myself these days as the CH has the better of me right now.
cheers
Paul
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Re: Oxygen pusher's!!
Reply #41 - Dec 1st, 2008 at 5:30pm
 
MITYRARE wrote on Dec 1st, 2008 at 5:15pm:
seasonalboomer wrote on Dec 1st, 2008 at 4:56pm:
I appreciate your point Mityrare. I feel great compassion and sadness for those who put in the effort to get a proper O2 rig and procedure and still come up empty. There is a collective feeling of seeing someone get right near the goal and come up short - and it's sadness.

That being said, for many of us, our lives were miraculously changed when we found O2 (or the proper use of O2). Amazed that this slight bit of "control" of our lives could change our worldview in such extraordinary ways that we often become evangelists.

So please understand that it isn't a lack of compassion at all. You'll never find a more compassionate group.


Thanks for the great post!
I have no problem with you becoming "evangelists" for O2 and I do feel the compassion of the group...but as one  "who put in the effort to get a proper O2 rig and procedure and still come up empty" time after time.
The feeling of failure or inadequacy or despair makes me feel like each person being recomended O2 should be advised as to the real odds of success.

Maybe i am just feeling a little sorry for myself these days as the CH has the better of me right now.
cheers
Paul



Paul,

Those that o2 dont work for have a special place in my heart for their pain has fewer abortives.  What do you currently use??  Does anything work for you??

For me O2 with the right mask didnt work as welll until I got the Clustermasx.  Imitrex inj didn't have a great rate of success either.  Believe it or not Maxalt MLT was my best abortive and then I found Zyprexa (which I use as a last resort now).

There aint no worse feeling than not finding SOME relief.  I have been there as we all have at some point.
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Re: Oxygen pusher's!!
Reply #42 - Dec 1st, 2008 at 5:43pm
 
We didn't know why 02 was no longer working for Gary until CH-HELL pointed out that the high level of shadowing probably masks the onset of the actual attack, which simply means he's not catching it soon enough, though for a while there the problem was rebounds, which we now know means he wasn't staying on it long enough - though that's been a moot issue for some time.

We've had a steady supply of 02 since finding this site in 2006 and made a home-made version of a cluster mask (from the old message board) and for several months have had the 02ptiMask.  Em provided some tips on catching it early enough, but he still hasn't got it yet.  Sad

So in answer to your question, FramCire, Gary has no abortives and no preventatives that work.  

I don't know what Paul (or the others that are med-resistant and for whom 02 doesn't work) do.  Occipital Nerve Stimulator may have to be considered at some point, but we're still eliminating meds.

Laurie
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« Last Edit: Dec 1st, 2008 at 5:45pm by Garys_Girl »  

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Re: Oxygen pusher's!!
Reply #43 - Dec 1st, 2008 at 6:17pm
 
Garys_Girl wrote on Dec 1st, 2008 at 5:43pm:
We didn't know why 02 was no longer working for Gary until CH-HELL pointed out that the high level of shadowing probably masks the onset of the actual attack, which simply means he's not catching it soon enough, though for a while there the problem was rebounds, which we now know means he wasn't staying on it long enough - though that's been a moot issue for some time.

We've had a steady supply of 02 since finding this site in 2006 and made a home-made version of a cluster mask (from the old message board) and for several months have had the 02ptiMask.  Em provided some tips on catching it early enough, but he still hasn't got it yet.  Sad

So in answer to your question, FramCire, Gary has no abortives and no preventatives that work.  

I don't know what Paul (or the others that are med-resistant and for whom 02 doesn't work) do.  Occipital Nerve Stimulator may have to be considered at some point, but we're still eliminating meds.

Laurie


Have you guys tried Maxalt MLT (dissolves in mouth) or Zyprexa (I think I use 10mg)???

What else have you tried?  Let's try and find at least SOME relief.  Although having someone like you who cares so much is an awesome start.
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You've overstayed your welcome since the day we met but it doesn't seem to matter to you.  No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do
 
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Re: Oxygen pusher's!!
Reply #44 - Dec 1st, 2008 at 8:40pm
 
I don't want to hijack the thread.  Smiley  FramCire, I'll PM you.

Laurie
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Re: Oxygen pusher's!!
Reply #45 - Dec 3rd, 2008 at 1:54pm
 
      Maybe the thirty percent that oxygen don't work for never had ch.  Maybe they just had a headache ?

                             Potter
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Re: Oxygen pusher's!!
Reply #46 - Dec 3rd, 2008 at 2:12pm
 
Careful, Potter...... Grin Roll Eyes Shocked
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Re: Oxygen pusher's!!
Reply #47 - Dec 3rd, 2008 at 2:27pm
 
Jeannie wrote on Dec 3rd, 2008 at 2:12pm:
Careful, Potter...... Grin Roll Eyes Shocked


  It's my middle name.

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Re: Oxygen pusher's!!
Reply #48 - Dec 3rd, 2008 at 5:58pm
 
Goadsby's study doesn't indicate the flow rate in the press release, but that indicates 22% don't respond to 02.  I'm pretty sure they knew how to screen out people with headaches from people with clusters in the study.

Laurie
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Re: Oxygen pusher's!!
Reply #49 - Dec 3rd, 2008 at 8:13pm
 
Quote:
"High Oxygen Flow Rates for Cluster Headache"
               by Todd D. Rozen, M.D., Neurologist


As discussed in previous issues of the Headliner, cluster headache patients require effective abortive therapy due to the extreme intensity of their pain. The two most effective cluster abortives are injectable sumatriptan and inhaled oxygen. However, since a large percentage of cluster sufferers are cigarette smokers and at high risk for coronary artery disease, many cannot be treated with the various triptan medications. In these cases, oxygen therapy becomes the preferred option.

Oxygen, the safest of all cluster therapies, is usually prescribed based on a landmark study by Dr. Lee Kudrow. In this study, patients were instructed to use 100% oxygen via a nonrebreather face mask at 7-10 liters/minute. Although usually effective, a certain subset of cluster patients do not achieve relief from this treatment. The author hypothesized that treating patients with higher flow rates of oxygen, up to 15 liters/minute, might provide relief to those sufferers who had not responded to standard oxygen therapy regimens.

Because MHNI has many intractable cluster patients, it was decided that a higher dose of oxygen therapy would be utilized in a few patients. Several important cases recently reported in the medical literature, found this therapy to be quite effective in patients who previously did not respond to lower dose oxygen inhalation.

MHNI's experience indicates patients who do not respond to the standard flow rates should be given the opportunity to use up to 15 liters/minute. However, prior to initiating this therapy, patients must obtain clearance from their primary care physician since serious lung disease and other conditions can make oxygen therapy unsafe or inappropriate. In addition, such oxygen therapy should not be used for more than a maximum of 10-20 minutes at a single setting.

The basis by which oxygen turns off a cluster headache is unknown at this time. Oxygen's constrictive effect on cerebral blood vessels may play a significant role.

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.



Headliner is published and privately distributed by the Michigan Head-Pain & Neurological Institute for informational use by our patients and friends. Rights to reproduction belong exclusively to Michigan Head-Pain & Neurological Institute. For additional copies or further information contact:
Jeffrey Pingel, Ph.D., or Scott Madden, Editors, Headliner
Michigan Head-Pain & Neurological Institute
3120 Professional Drive, Ann Arbor, MI 48104


Last modified: 2004



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