Im a 02 user, But wheres my button?? i dont have enough info on where to get it, what are the best suppilers, and every detailed bit of info on OXYGEN so im not a 02 pusher. So it is just my thoughts but i feel you should be a true pusher of 02 info and knowledge if you carry that button. Let me know.. Coach Bill

Quote:


Sorry Ade, I didn’t mean to be pushy. It was intended to be a little tiny joke, and I always forget to add that everyone is different. By pusher I mean spread the info, and help others having problems with getting the full benefit of it….

PF time to ya in the UK.

Roland.

Potter wrote on Nov 28^th, 2008 at 1:36pm:


With the greatest respect Viet, that's not exactly the most supportive comment. Like I said, it works for some, and not for others.

I have explained elsewhere my reasons for not wanting to use O2.

We each have our own way of dealing with and coming to terms with CH, so let's not play the blame game.

The thing with oxygen is that almost no one gets the right gear necessary to achieve success with it so they blow it off as another failure.

The doctors should set you down with a proper rig at their office and show you how to use it! Then give you a proper rig to borrow until yours is delivered to you.

Oxygen didn’t work for me when I first got it because the O2 supplier delivered a 10 LPM regulator and a regular mask. When I got a high flow regulator and the proper mask, I was amazed at how well it worked and how fast I got relief with it!

I firmly believe that if you huff it till you go numb and tingly, it will work for all (most).

That’s my take on it.

Rolo..

Ade i have posted this no several times on this board, am not sure if you have thought about using it or not??

01646 651 979  it is the helpline no for ouch uk as i've mentioned you don't need to be a member to use it, the helpliners can give you info on the best way of using O2 and other things that may help you, but you need to take the first step and leave a message with your no for them to phone you back!!!

Your Call (or not)


help is there if you want it  

Sandra

hey framcire, totally agree, but how many times have people tried O2 for it not to work, and the reason being they haven't been using it properly or to it's full advantage, which for me is a reason to at least give it another go!!


Sandra xx

Thats a very good point. there were at least 3 or 4 attacks where i threw the nose piece away and went stright to imetrex, but i kept seeing the success of others and learning, of the right mask, the right setting and for how long. I went thourgh a 50/50 period where it worked but the next hit it didnt, but i never gave up and now i can bust the beast in less than 5 minutes, although i learned to go the full 20 to keep him away as well. Either way this is a great post. Let me know..  Coach Bill

I am enjoying this thread.

I do have a couple of comments.

1)  I absolutely agree that oxygen should always be the first line of defence....and that care must be taken to use the appropriate equipment and appropriate flow rate....and that most health professionals do not have a clue as to what "appropriate" is for cluster headache patients.

2)  I am not a health professional but have 30 year CH experience and many years of first hand experience in CH research as a patient under a prominent CH Neuro......soooooo  my following comments are borne out of my experiences.... Rolomatic's comment (regarding oxygen) that "it will work for all(most)" I find somewhat misleading....and i find that many people on this forum have great success with oxygen (and that is wonderful!) and also have bought into Rolomatic's statement.... here is why i have a concern...

I have never found any scientific evidence or anything even close to scientific to prove that oxygen therapy has any affect on more than 70% of the CH population.  Of the 70% that it does have an effect on there is also a percentage that over time experience significantly reduced effectiveness ....some experience this reduction to zero and oxygen effectiveness never returns...others need a rest from the therapy and then upon return show good response again.  Those CH patients that experience a further neurological dimension to their CH in the form of Cluster Tic Syndrome are extremely resistant to any drug treatment including oxygen. In my own experience, i experienced excellent results with oxygen for about two to three weeks at the begining of each cluster cycle and then almost instantly there would be no response at all from the oxygen. After about four years of cycles the oxygen completely failed to provide any response at all and I gave it up.  Several years later I tried again with still no response.

In summary I just would like to say that over the years that i have watched this forum i have always felt a little twinge in my side when someone was told that O2 would be their saviour, (I know that the odds are it will be), but there is still quite a percentage of people that O2 will not be much help and they may end up being the ones that quietly wander off and drop off the forum....they may be the ones that really need the support as pain relief may not be a reality for them.

I would like to see the forum be inclusive and offer some level of sensitivity to all CH sufferers, not just the majority that fit the textbook O2, Verapamil, Imitrex treatment protocol.

Paul

I am one that oxygen has never worked for. Not even close.
I have tried again and again and will probably try again on another day.

That said I think its silly for someone to not give it a try for all its worth.

If 70 some percent of us have been able to abort some serious pain by simply huffing oxygen in the proper way, then why suffer if the possibility is there for rapid relief with a very simple and available method.


Give it a try. There is nothing to lose but pain. Only then if administered properly, as one can learn here, can someone say it does no good.  Or one can be stubborn and never know.

Apria Healthcare are gods IMO. I call and poof I have another tank. It's like heaven juice. O2 is my heroin. Huff it, snuff it, stick it in my ear. As long as it will kill the pain I'd put it in my.....WHOA! never mind.

Oxyg3n roolz! 3v3ry0n3 5h0ld b3 u5ing it!

AlienSpaceGuy wrote on Nov 28^th, 2008 at 10:20pm:



People ......no....correction...YOU....should really read the thread and the posts in their entirety, but since you did not , I will copy the first item I posted in my first post in this thread....I quoteend quote

As far as the 70% number...it is well documented....but I will let you search for that yourself.

As far as data on patients that have experienced a diminished effectiveness with oxygen over time....I am not permitted to furnish you with patient names ...but there are many documented cases here in Ontario Canada let alone the rest of the world.
Paul

Here are 02-as-CH-abortive studies:

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

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

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

"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