I deleted my original post here because not even I know what I was trying to say.

Got oxygen? It does a CH attack good! :)

I got a letter in the mail today from Cigna that is very confusing and that leads me to believe that they want to cut off my oxygen. It is very cryptic in nature and says that after Dec 30th they will no longer pay Allina home oxygen. I will have to call those jokers and set them straight about the only thing that aborts for me!

I may be taking my own advice and heading down to the local welding supply store. I'm sure am glad I own my own regulator!

Roland. >:(

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

Should anyone here be 'pushing' anything on anyone?

I was under the impression this site was about *support* and *advice*

Don't pressure anyone into doing something they don't want. O2 works for some, and not for others. If it doesn't work - don't 'push it'.

wrote on Nov 28^th, 2008 at 12:16pm:

Should anyone here be 'pushing' anything on anyone? I was under the impression this site was about *support* and *advice* Don't pressure anyone into doing something they don't want. O2 works for some, and not for others. If it doesn't work - don't 'push it'.

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. :D

wrote on Nov 28^th, 2008 at 12:16pm:

Should anyone here be 'pushing' anything on anyone? I was under the impression this site was about *support* and *advice* Don't pressure anyone into doing something they don't want. O2 works for some, and not for others. If it doesn't work - don't 'push it'.

    You won't know if it works or not if you are too stubborn to give it a whack.

                       Potter

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

wrote on Nov 28th, 2008 at 12:16pm: Should anyone here be 'pushing' anything on anyone? I was under the impression this site was about *support* and *advice* Don't pressure anyone into doing something they don't want. O2 works for some, and not for others. If it doesn't work - don't 'push it'.     You won't know if it works or not if you are too stubborn to give it a whack.                        Potter

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.

wrote on Nov 28^th, 2008 at 1:50pm:

Potter wrote on Nov 28th, 2008 at 1:36pm: wrote on Nov 28th, 2008 at 12:16pm: Should anyone here be 'pushing' anything on anyone? I was under the impression this site was about *support* and *advice* Don't pressure anyone into doing something they don't want. O2 works for some, and not for others. If it doesn't work - don't 'push it'.     You won't know if it works or not if you are too stubborn to give it a whack.                        Potter 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.

        Then suffer in silence.

                     Potter

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 think everyone's point with O2 is the fact that for A LOT of people it works.  It is by far the easiest and best avenue to try to help alleviate one's pain.

You said you didn't want to try oxygen because it hurts for you to breathe during an attack.  Well... the fact remains... you HAVE to breathe!!  So if you're gonna breathe, why not at least breathe something that will help?  Just seems like common sense.

If you don't want to try it, that is your prerogative, but don't be surprised if folks get a little short with you looking for options #2, #3, and #4 when you won't even try option #1.

Just my  [smiley=twocents.gif]

DJ

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

Let me add to DJs comments that nobody here is pushing O2 to people who have tried it and it didnt work.  However, O2 is cheap and safe and you can legally get as much as you need at a relatively low cost.  Is it very tough to understand why people "push" O2?

I personally find taking O2 at that rate quite uncomfortable.  HOWEVER, still 100 times better than the pain it relieves.  Since it is cheap, easy to get, and safe... why not TRY it?

With that said...... aint no skin off my knee if you choose not to try it.  

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

Very very true.

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 was probably one of the more "stubborn" one's here when I was advised by some on the board to get myself some o2. I remember saying something in the lines of "I will consider it as an option" and then Potter came back with " It is not an option, it is your first line of defense" Those words changed my life forever!

I made an appointment with my neuro and took a print off from the left regarding o2. He read it and said "yes". I went straight to our Homecare Oxygen center just up the road and got set up right away.

That night I got my hit right on schedule and got on the o2 immediately and within a few minutes the pain backed off, I will never forget that feeling, EVER!

Since then I have helped a few people to get what they need to get an o2 set up, even lending my "E" tanks with a non-rebreather mask for a sufferer to try. He now has his own set up. I may not have listed the names of some of those I have helped with the o2 but giving them a chance to try it and seeing the results is priceless to me.

That is why I am an o2 pusher, for those willing to give it a try. If you decide not to, that is totally up to the individual.

  Barry :)

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 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 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.

MJ wrote on Nov 28^th, 2008 at 8:29pm:

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.

I agree completely!
I have no sympathy for stuborn, or those unwilling to try, or those unwilling to revisit armed with new methods and information.

Paul

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!

To MITYRARE

a) Nobody can make big bucks with oxygen, therefore, there is no big incentive for anybody to do a scientific study on oxygen.
b) A scientific study would need a double-blind, placebo controlled setup. IMNSHO it is absolutely unethical to have people suffer from an untreated cluster attack in order that someone who 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 can add or subtract a few %.

Do you have any scientific evidence or anything even close to scientific to prove that the effectiveness of oxygen treatment can be diminish over time? You cite your own case, but it is well-known that 1-case "statistics" lead to very unreliable results. I've never heard of other cases.

But, since the oxygen treatment is not only cheap but lacks any adverse side-effects, no numbers or anything else the cat dragged in can be used as argument why newbies should not be told to try oxygen. (BTW, you must have been reading another forum, I never read the word "saviour" in this context). There is no excuse at all for not trying oxygen, or trying it again with the proper setup recommended here.

Your effort to save people from "bad stuff" would be better used for Dopeymax, steroids and the like.


                 [smiley=smokin.gif]

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

To MITYRARE a) Nobody can make big bucks with oxygen, therefore, there is no big incentive for anybody to do a scientific study on oxygen. b) A scientific study would need a double-blind, placebo controlled setup. IMNSHO it is absolutely unethical to have people suffer from an untreated cluster attack in order that someone who 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 can add or subtract a few %. Do you have any scientific evidence or anything even close to scientific to prove that the effectiveness of oxygen treatment can be diminish over time? You cite your own case, but it is well-known that 1-case "statistics" lead to very unreliable results. I've never heard of other cases. But, since the oxygen treatment is not only cheap but lacks any adverse side-effects, no numbers or anything else the cat dragged in can be used as argument why newbies should not be told to try oxygen. (BTW, you must have been reading another forum, I never read the word "saviour" in this context). There is no excuse at all for not trying oxygen, or trying it again with the proper setup recommended here. Your effort to save people from "bad stuff" would be better used for Dopeymax, steroids and the like.                  [smiley=smokin.gif]

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 quote" 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." end 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

there has also been oxygen trials done in the UK involving Prof Goadsby!!!

there is help out there for people, all they have to do is ask!!!


Sandra xx

Here are 02-as-CH-abortive studies:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

  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:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

"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):
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

"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

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.

Garys_Girl wrote on Nov 29^th, 2008 at 7:03pm:

Here are 02-as-CH-abortive studies: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE   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: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE "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): START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE "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

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

Righ on the money, Marc!!

Marc wrote on Nov 29^th, 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=thumb.gif]

wrote on Nov 29^th, 2008 at 8:03pm:

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

Yeah, it says the study was performed between 2003 and 2007.

Laurie

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

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

Just Plain Carl wrote on Nov 28^th, 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:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

...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.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

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

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.

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.

MITYRARE wrote on Dec 1^st, 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

FramCire wrote on Dec 1^st, 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!!! :-/

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.

seasonalboomer wrote on Dec 1^st, 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

MITYRARE wrote on Dec 1^st, 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.  

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.  :(

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

Garys_Girl wrote on Dec 1^st, 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.  :( 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.

I don't want to hijack the thread.  :)  FramCire, I'll PM you.

Laurie

      Maybe the thirty percent that oxygen don't work for never had ch.  Maybe they just had a headache ?

                             Potter

Careful, Potter...... ;D ::) :o

Jeannie wrote on Dec 3^rd, 2008 at 2:12pm:

Careful, Potter...... ;D ::) :o

 It's my middle name.

           Potter

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

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

Works for me...over and over. ;)
the bb

Potter wrote on Dec 3^rd, 2008 at 1:54pm:

Maybe the thirty percent that oxygen don't work for never had ch.  Maybe they just had a headache.                              Potter

Potter, do you understand how much comments like this can hurt some people?

Potter wrote on Dec 3^rd, 2008 at 1:54pm:

Maybe the thirty percent that oxygen don't work for never had ch.  Maybe they just had a headache.                              Potter

And maybe some within that thirty percent are CHeads who deserve an apology from you.

You can start with me.

Potter wrote on Dec 3^rd, 2008 at 1:54pm:

Maybe the thirty percent that oxygen don't work for never had ch.  Maybe they just had a headache.                              Potter

WTF?????
>:( >:( >:( >:( >:(

Potter wrote on Dec 3^rd, 2008 at 1:54pm:

Maybe the thirty percent that oxygen don't work for never had ch.  Maybe they just had a headache.                              Potter

That just doesn't stack up in anybody's world Potter - even an 02 fan like mine.

1 It isn't a consistent treatment- I have quite a few attacks where it does nothing, and my kit and flow rate are spot on- ergo it can fail, ergo there may be some people whose bodily response to too much 02 is insufficient to abort an attack.

2. I can promise you Goadsby would not have allowed people to be part of the trial if their CH diagnosis was in question- the trial was too important to him and us

W the B

You doth protest too much methinks.

            Potter

Guys... Is it possible that Potter is just kiddin' around?  He didn't say anything all that offensive.  There certainly are a lot of people around here that take things too seriously.  Potter has helped many here AND defended our country.  He has the right to voice his opinion just as everyone else.  

Jeannie    

I have not used 02 yet.   I don't know if it will work for me.  If it doesn't... I won't be angry at Potter about it!

Potter wrote on Dec 4^th, 2008 at 9:39am:

You doth protest too much methinks.             Potter

Bestest news I've had in years, Potter.  Because O2 doesn't work for me, I don't have CH at all.  

I have "just a headache"!

Oh, life is roses, strawberries and cream once again and I just hope your medical qualifications are better than your lousy attempt at Shakespeare.

Potter wrote on Dec 4^th, 2008 at 9:39am:

You doth protest too much methinks.             Potter

Meaning what exactly? It's not like you to be coy, or hide behind other people's words

Potter wrote on Dec 3^rd, 2008 at 1:54pm:

Maybe the thirty percent that oxygen don't work for never had ch.  Maybe they just had a headache ?                              Potter

Maybe the seventy percent that oxygen does work for never had ch. Maybe they just had a headache?  

Did you ever think about this Potter?

crazyness!

Paul

I agree totally!   But should people jump all over you about  saying it?

Jeannie

MITYRARE wrote on Dec 4^th, 2008 at 11:43am:

Potter wrote on 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 Maybe the seventy percent that oxygen does work for never had ch. Maybe they just had a headache?   Did you ever think about this Potter?

   Heck no.  But it's very profound.

                Potter

Potter wrote on Dec 4^th, 2008 at 11:47am:

MITYRARE wrote on Dec 4th, 2008 at 11:43am: Potter wrote on 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 Maybe the seventy percent that oxygen does work for never had ch. Maybe they just had a headache?   Did you ever think about this Potter?    Heck no.  But it's very profound.                 Potter

Profoundly Potter to leave off the crazyness! comment from the quote!

Profound, perhaps, but kindly answer one question or the other.

AussieBrian wrote on Dec 4^th, 2008 at 12:15pm:

Profound, perhaps, but kindly answer one question or the other.

           Good of you to give me a choice of questions to answer Brian.  I pick this one.

"Bestest news I've had in years, Potter.  Because O2 doesn't work for me, I don't have CH at all.  

I have "just a headache"!

Oh, life is roses, strawberries and cream once again and I just hope your medical qualifications are better than your lousy attempt at Shakespeare.

        My medical skills in the field of veterinary far outweigh my piss poor attempt at quotin Shakespeare.

                         
                       

potter

In all seriousness, I think with these headaches, as with any ailment, most people respond with a treatment protocol, and there are always a certain percentage that do not. Those that do not, may have some physiologicol or biochemical differences from the majority that neccesitate a different course of treatment action, and in the case of CH the trigeminal nerve and all its associated and interconnected neurological systems can be wired differently and act differently in different people.

In my own case, as i have mentioned too many times already, I have Cluster Tic Syndrome (Google for additional info), which is an additional neurologically puzzling phenomenon that goes along with my CH. Patients with this disorder are typically unresponsive to both preventer and abortive medications, and this has been my experience ( i have not use abortives for over 6 years now).

So, in some ways Potter is kinda correct....probably 100% of classic CH with classic traits and physiology and biochemistry and correct neurology react to O2 treatment. That 100% would make up 70% of the total CH population (in my theory here....stick with me folks), and the other 30% of Ch patients would be Potters other people with "just a headache"...however they are really Ch sufferers, but with non typical physiology, biochemistry, and or neurology which makes them more resistant to mainstream therapy protocols, and requiring different medicine "cocktails' to control frequency and level of pain during cluster periods. Pushing O2 does not directly benefit these patients.

Probably not as profound as some would like!
Paul

Ungweliante wrote on Dec 4^th, 2008 at 4:51am:

Potter wrote on 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 Potter, do you understand how much comments like this can hurt some people?

 

   Why would that hurt your feelings?

                 Kinder gentler Potter

Kinder my ass Potter

Inferring that a substantial number of people on here don't have CH hurts almost more than the pain.

You should bloody well know Potter, we have trouble enough explaining/excusing/coping with a pain no-one sees and many non-sufferers don't believe without a fellow sufferer on here, who we hope will sympathise, behaving in exactly the same way.

I have been given a bloody rough ride on here on occasions, am fine with it mainly and deserved a proportion, but being accused of NOT having CH and faking is worse than being called a troll and I personally will not tolerate it.

Absolutely sick of you stating it here that 02 failures means someone doesn't have CH and inferring it as well by your "quotations" of "protesting too much" Damn right WE are objecting to your comments.

For me, and it seems for others, you can abuse all you like, but to accuse a sufferer who knows what the pain is like of NOT having CH is the ultimate and unbearable insult.
And yes, by God I DO PROTEST, but no protest is too much where this is concerned.

Cannot for the life of me see why you do it. I am as big an advocate of 02 usage as you are, but you are painting it as a cure-all for all Ch'ers, and those it doesn't work for as wannabees.

Crap!

W the B

VERY well said.  Thank you.

One thing I know for sure - Gary is not having "just" headaches.  We both want nothing more in this world than for 02 to work!!!!!!!!!!!!!!!!!  

That said, Paul, I think you've hit the nail on the head.  

Laurie

  I have never not one time belittled your pain.  I am devastated that oxygen doesn't work for everyone a hundred percent of the time.  My wife gets a headache once in a while that we call "just a headache".  O2 don't touch it so it's off to the E.R. and a blast of drugs that knock her completely out for a couple of days.  I would never ever underestimate the pain in your head.

                          Potter

Potter wrote on Dec 5^th, 2008 at 4:44pm:

Ungweliante wrote on Dec 4th, 2008 at 4:51am: Potter wrote on 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 Potter, do you understand how much comments like this can hurt some people?      Why would that hurt your feelings?                  Kinder gentler Potter

A "Kinder gentler Potter" wouldn't have to ask.

Potter wrote on Dec 5^th, 2008 at 6:46pm:

I have never not one time belittled your pain.  I am devastated that oxygen doesn't work for everyone a hundred percent of the time.  My wife gets a headache once in a while that we call "just a headache".  O2 don't touch it so it's off to the E.R. and a blast of drugs that knock her completely out for a couple of days.  I would never ever underestimate the pain in your head.                           Potter

Thank you for clarifying that.  It's just that saying something like "it's just a headache" sounds waaaaay too much like the uneducated responses we used to hear too often of "oh, you have a headache, do you need some aspirin?" or "you've got a headache - would you like to go lie down for a few?" etc. etc. etc.  The association of that wording is one that by its very nature appears to belittle the pain.

Laurie

There certainly is no stigma attached to either a headache or a cluster headache. I for one don't want anything to do with "just a headache"  I don't get headaches.  I have cluster headaches. That's why I push oxygen.

          Kinder gentler Potter

Well, I don't know how Gary feels about this, but I sure wish he had "just headaches" and not cluster headaches BECAUSE of the pain level I associate with "just" a headache.  I can take aspirin and they go away.  But not even 02 make his go away.  And he's still diagnosed with "cluster" headaches. Atypical, med-resistant, chronic cluster headaches, in fact.

Laurie

Boy! I'm seeing everyone get their panties in a wad over NOTHING!

Since the beginning, we've always shared information and if something worked for US, we got excited and SHARED our experience and HOPED it would work for everyone.

O2 has been something that WORKED or so many of us that a lot of us get excited and want it to WORK for everyone. We realize that it won't work for everyone, but we can hope that others get the relief we do from it, so we keep up the enthuiasm.

I LOVE O2 and will encourage EVERYONE to TRY it. If it works for them GREAT - if it doesn't, then so be it (you're not out that much $$). There are times I chug a Red Bull along with it (or a cup of coffee) cause it doesn't work FAST enough to suit me, but that's just me - I'll SHARE that one too.

But I emplore those of you who don't get the relief from O2 NOT to DISCOURAGE others from TRYING it. It won't hurt anyone and it might just HELP.

Hugs BD

Potter wrote on Dec 5^th, 2008 at 4:44pm:

Why would that hurt your feelings?                  Kinder gentler Potter

Barbara, the point is that saying "it's just a headache" is not really sharing information or doesn't work towards people trying oxygen, but instead has only negative consequences, at least for me, because of the reasons that follow.

Potter, it makes me feel like the only people who I think understand me after all don't. It makes me feel like I'm accused of lying, of vastly exaggerating a medical problem that has changed my life. It's the same feeling that I get when I go to the doctors and they tell me that my whining is ridiculous, they have seen a similar patient a million times, I should be quiet and take an aspirin.

I don't find it supporting, instead it makes me feel abandoned, belittled and patronized. It makes me feel like I should not spend my time here, because I get hurt here and the CH-attacks hurt me enough as it is.

I'm glad if explaining this will lead to something better.

- Best regards and PFDAN,
Rosa

I'm disappointed at how, when someone starts with a perfectly clear statement inviting answers, the thread heads in so many directions, and then gets hurtful and insulting.

This is the section that new people come to first, in many cases.  Some never even get to the General posts. They prefer to stay here.

Now "here" isn't even comfortable any more.

So, getting back to the original post:


wrote on Nov 27^th, 2008 at 11:19pm:

I deleted my original post here because not even I know what I was trying to say. Got oxygen? It does a CH attack good! :) I got a letter in the mail today from Cigna that is very confusing and that leads me to believe that they want to cut off my oxygen. It is very cryptic in nature and says that after Dec 30th they will no longer pay Allina home oxygen. I will have to call those jokers and set them straight about the only thing that aborts for me! I may be taking my own advice and heading down to the local welding supply store. I'm sure am glad I own my own regulator! Roland. >:(

Roland, did they state a reason for this decision?  Have you talked to your doctor about it and can he do anything?  Perhaps if he wrote them a letter it would help.  

I think I've seen the advice of the letter here before.  Maybe someone will come along who know more about it.

You might even want to post this in the General section.

Good Luck!!

What is so different about Potter's comments and those I've seen made by members here in reference to *meegrainers*?  You know, those comments that denigrate meegrainers pain because it CANNOT be as bad as ch?  There have been numerous times that I've almost deleted my account because of the nasty and uncaring comments regarding people with migraines.  Yes, I realize this is a board for ch. sufferers, but there are those here that have both and then there are others here that don't have ch, but suffer from migraines (as in supporters).  As it has been so eloquently put on more than one occasion, pain is relevant to the individual.  If you've ever made a comment like that, then don't attack Potter for his comments.

I keep reminding myself that what others say/do don't have power over me (I taught classes on this very thing to others), but it is how I choose to react that makes the difference.

Hey Rolo,
    How ya makin out with your O2?
                       JPC

BarbaraD wrote on Dec 6^th, 2008 at 7:35am:

Boy! I'm seeing everyone get their panties in a wad over NOTHING! Since the beginning, we've always shared information and if something worked for US, we got excited and SHARED our experience and HOPED it would work for everyone. O2 has been something that WORKED or so many of us that a lot of us get excited and want it to WORK for everyone. We realize that it won't work for everyone, but we can hope that others get the relief we do from it, so we keep up the enthuiasm. I LOVE O2 and will encourage EVERYONE to TRY it. If it works for them GREAT - if it doesn't, then so be it (you're not out that much $$). There are times I chug a Red Bull along with it (or a cup of coffee) cause it doesn't work FAST enough to suit me, but that's just me - I'll SHARE that one too. But I emplore those of you who don't get the relief from O2 NOT to DISCOURAGE others from TRYING it. It won't hurt anyone and it might just HELP. Hugs BD

Barbara, Gary doesn't respond to 02.  In my post to people new to the board, if they don't mention using 02, I always mention it as the first, best, line of defense.

I don't see anyone here who doesn't respond to 02 discouraging anyone from trying it!  We all WISH it worked and HOPE it works for those who haven't tried it!  It's just that for those for whom it does work, they should remember that there are people out there for whom it doesn't work.  Our "panties are in a wad" because that does not mean they do not suffer clusters, and that they and their supporters belong here just as much as anyone else.

Laurie

What?  Did I misread Barbara's post?  I thought it was very encouraging and promoted compassion.

Just Plain Carl wrote on Dec 6^th, 2008 at 12:01pm:

Hey Rolo,     How ya makin out with your O2?                        JPC

I have been using a preverbal crap load of it almost every 2 hours Carl. The throat is a bit dry but the head hasn’t imploded yet! [smiley=bomb.gif] I’m doing my best to leave the DHE stockpile alone… Roland ;)

Give it hell, Rolo!!
all the best
Huff huff and away
the bb

deltadarlin wrote on Dec 6^th, 2008 at 11:44am:

I keep reminding myself that what others say/do don't have power over me (I taught classes on this very thing to others), but it is how I choose to react that makes the difference.

...wow...EVERYONE PLEASE RE-READ THIS QUOTE!!!

:)

wrote on Dec 6^th, 2008 at 1:12pm:

What?  Did I misread Barbara's post?  I thought it was very encouraging and promoted compassion.

I agree.  But I did feel it important to address the "But I emplore those of you who don't get the relief from O2 NOT to DISCOURAGE others from TRYING it. It won't hurt anyone and it might just HELP," because I don't recall ever having seen anyone do that.  :)

Laurie

....and back to the original post:

Rolo, is it just that they're no longer working with that supplier?  We had that happen with Gary's insurance.  They dropped the place we were using, and we had to get set up with a different supplier.

I hope that's all this is!

Wishing you PFDAN!

Laurie

Can anyone give me assistance in obtaining some medical documentation on the merits of high flow O2 treatment to abort ch? I think my Neuro will be more willing to write an order for what I need if I can provide proof.

666ouch wrote on Dec 7^th, 2008 at 9:39am:

Can anyone give me assistance in obtaining some medical documentation on the merits of high flow O2 treatment to abort ch? I think my Neuro will be more willing to write an order for what I need if I can provide proof.

Try the O2 info tab on the left. Print out the pertinent info and take it with you to the nero. ANY questions? Don’t hesitate to ask. There are several O2 threads on the board chalked full of great O2 tips and methods.

Best to ya,

Roland. ;)

666ouch wrote on Dec 7^th, 2008 at 9:39am:

Can anyone give me assistance in obtaining some medical documentation on the merits of high flow O2 treatment to abort ch? I think my Neuro will be more willing to write an order for what I need if I can provide proof.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

666ouch wrote on Dec 7^th, 2008 at 9:39am:

Can anyone give me assistance in obtaining some medical documentation on the merits of high flow O2 treatment to abort ch? I think my Neuro will be more willing to write an order for what I need if I can provide proof.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Try this one - Chuck posted it under medications.

Hugs BD

       Or you can be proactive and tell your Doc. exactly what you need.

                      Kinder gentler Potter

Thanks to all that have given me suggestions. I have copied a lot of helpful information. For anyone looking for something similar I found a post by Rob Johnson in Medications and Treatment... that will also be very useful.


Quote:

Covers major hedache types; standard and non-stardard treatments, etc. ------------- START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE ALL NEW!! HEADACHE 2008-2009 The new 72 page Headache 2008-2009 is hot off the press! Click here to download the PDF instantly! If you would like a bound copy, send $12 (includes shipping) to Robbins Headache Clinic 1535 Lake Cook Rd. Suite 506 Northbrook, Ill.60062 OR call 847-480-9399 to use Visa or Mastercard.

This may not get me a script for the volumes talked about by most here, but it is a much better starting place than the 6lit. that the Neuro. was writing for. I think Doctors are a lot like Court Room Judges. They need to get a rectal infusion :o of information before they can understand something.


Quote:

First Line Abortive Medications for Cluster Headache 1. Oxygen: Very effective, with no side effects. May be combined with other abortives. Oxygen is worth trying for all patients willing to rent a tank; the usual dose is 8 liters/min., for 10 to 20 minutes as needed, with a mask, used sitting up and leaning slightly forward. 60% success rate. The rate may be pushed to 13 Liters per minute.

Thanks Again,
Steve

Steve,

The flow rate should be at LEAST 15 liters per minute with a NON-rebreather mask. The 8 liters just doesn't work as good. Most of us have gone to the 25 liters per minute and find that it works a lot better.  

You can find a regulator on E-bay if your doc gives you a hard time about that one. If you have trouble getting the right mask, let someone here know.

Hugs BD

Quote:

First Line Abortive Medications for Cluster Headache 1. Oxygen: Very effective, with no side effects. May be combined with other abortives. Oxygen is worth trying for all patients willing to rent a tank; the usual dose is 8 liters/min., for 10 to 20 minutes as needed, with a mask, used sitting up and leaning slightly forward. 60% success rate. The rate may be pushed to 13 Liters per minute.

I would add to this by saying that if you used 25 LPM, 60% would be a low estimate. ;)

from my Living in the solution...not the problem (Newbie) post
Quote:

Back to the Neuro today. She was not at all interested in my paper back up, as I figured. She said "I always prescribe 1 to 2 liters, I will have to look at my book" She wrote for 9 with an NRB. I told her to keep the paper work to read, she might find it interesting, and that I did not expect her to change her practice as a result of it. Plant the seed without damaging the ego  Cool Just got off the phone with Apria and we are all set for delivery tomorrow. Christmas is coming early for me this year. I looked at regulators on eBay and the are not all that much, just lots of different brands. I'm not sure which are better. It's a good day in cluster town at least until 9:30PM

So, now I am regulator shopping. Any suggestions on brands etc?

Pete or Chuck can help you out there. I don't know beans from shinola. PM one of them. They're our ghurus here on O2 and all the stuff that goes with it. I just breathe the stuff.

Damn know it all docs... :(  Bet she'd change her tune if she got hit with about a Kip 8-9. We'd see how the 1-2 liters worked for HER!!! What ever happened to "science" majors keeping an "open mind?" I swear I heard a science teacher say that was "important".

Hugs BD

666ouch wrote on Dec 8^th, 2008 at 5:14pm:

So, now I am regulator shopping. Any suggestions on brands etc?

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Or try ebay, I would shoot for 25 LPM if you can find one or flotec makes them up to 60 LPM.

Hope this is helpful?

Questions? Just ask...

PF's to ya, Roland. 8-)

666ouch wrote on Dec 8^th, 2008 at 5:14pm:

from my Living in the solution...not the problem (Newbie) post Quote: Back to the Neuro today. She was not at all interested in my paper back up, as I figured. She said "I always prescribe 1 to 2 liters, I will have to look at my book" She wrote for 9 with an NRB. I told her to keep the paper work to read, she might find it interesting, and that I did not expect her to change her practice as a result of it. Plant the seed without damaging the ego  Cool Just got off the phone with Apria and we are all set for delivery tomorrow. Christmas is coming early for me this year. I looked at regulators on eBay and the are not all that much, just lots of different brands. I'm not sure which are better. It's a good day in cluster town at least until 9:30PM So, now I am regulator shopping. Any suggestions on brands etc?

I recently bought this one in a CGA540 style that only fits BIG medical O2 tanks and ALL welding O2 tanks.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

If you plan to only use it on smaller tanks (E size and smaller) you can order the same regulator with a CGA870 fitting instead.

I went with the CGA540 because I can use it on welding tanks, large medical O2 tanks and smaller medical tanks with the adapter shown at the bottom of this page:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
See the other pages for more info too.

This is my travel setup, I can use standard CGA870 tanks or CGA540 tanks. Welding tanks are evrywhere once you start looking!

One more thing to be aware of: You are going to go through a lot of O2 assuming that it works for you. Be sure that you have multiple tanks on hand. What size did you get?


Marc

wrote on Dec 6^th, 2008 at 1:29pm:

Just Plain Carl wrote on Dec 6th, 2008 at 12:01pm: Hey Rolo,     How ya makin out with your O2?                        JPC I have been using a preverbal crap load of it almost every 2 hours Carl. The throat is a bit dry but the head hasn’t imploded yet! [smiley=bomb.gif] I’m doing my best to leave the DHE stockpile alone… Roland ;)

Hi Rolo.. we've not yet met..

Do you have a bubbler?  That can really help ease the dryness situation.  

Moor medical online carries them but I forget the technical name for them.. I tried humidifier, but that's not correct.. anyone?




Potter wrote on Dec 7^th, 2008 at 1:44pm:

Or you can be proactive and tell your Doc. exactly what you need.                       Kinder gentler Potter

Hiya Potter.. honestly.. I think its VERY proactive to go into your doctor's office, especially a neuro (a.k.a. know-it-all-god-not-willing-to-listen-to-a-patient-prescribe-their-own-treatment-in-general-just-because-you-asked) prepared with literature that is convincing. At least, that's what I've seen many times here in the past.  

You may have a good neuro or gp that may listen to you off the bat, but for those who don't, why suffer needlessly when a little printed material will do the trick?  

Pep

Quote:

I recently bhought this one in a CGA540 style that only fits BIG medical O2 tanks and ALL welding O2 tanks. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. If you plan to only use it on smaller tanks (E size and smaller) you can order the same regulator with a CGA870 fitting instead. I went with the CGA540 because I can use it on welding tanks, large medical O2 tanks and smaller medical tanks with the adapter shown at the bottom of this page: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE See the other pages for more info too. This is my travel setup, I can use standard CGA870 tanks or CGA540 tanks. Welding tanks are evrywhere once you start looking! One more thing to be aware of: You are going to go through a lot of O2 assuming that it works for you. Be sure that you have multiple tanks on hand. What size did you get? Marc

I called flow tech and got Dave, a sales rep, on the phone. Not very knowledgeable about ch, but very empathetic and interested as well as helpful. He asked for documentation so I gave him the links to this site and others that I have found useful. He has a 0-25 lpm for $50.00 that he said they would priority ship.

Apria brought me an M tank. The delivery guy also suffers migraines or clusters (not sure which). He worked with me and gave me the biggest regulator he had on his truck, a 0-15 lpm. The mask they gave me is a piece of sh... oops poop. The valves don't seem to work right and the little plastic bag is too small. One of the masks referenced here will be my first purchase. Then I will see how I do at 15 lpm before I spend the money for the 25 lpm. Even though these are very important purchases I have been hit real hard in the markets lately, and now I am operating at a very substantial monthly deficit. I am also very aware that these expenditures can be made up for by reducing the amount of medicine that I might need and the copay's.
Steve

Going in the right direction!

You certainly could stay with the 15LPM regulator and see how you do with a better mask, or even a mouthpiece. As long as you get 100% O2!

I bought one these mask/bag/tubing/mouthpiece kits online from these guys for $22.50 + shipping. They shipped the same day I ordered.  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

I'm starting to like the mouthpiece a lot........

Marc

Steve,

If you have an M tank, you have a CGA540 regulator. Check the pictures to be sure.

If you want to use smaller medical tanks for portability, I can mail you a CGA870 to CGA540 adaptor. It's a spare that I don't need anymore. You've got my phone number..........


START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGESTART PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Marc

Hey Marc. If Steve doesn't need that thing, it's going to make a great nut-cracker over Christmas.

Steve, I'm glad to see you at least are taking comand of your condition. I hate seeing Doctors using there "books" that have nothing to do with our rare problem. It sounds like she is not concerned with modern treatments for us.

To give you some good insite please go to the Medications & Therapy page and at the top click on "Help with getting Oxygen prescribed" and scroll down to the post by 'BATCH'. This man is CH.com's O2 expert. I know that post gave my Neuro some understanding to high flow O2 use for CH.

It would be nice if you could make your Doctor understand that her book does not cover CH.  Good Luck, Don

Quote:

Steve, I'm glad to see you at least are taking comand of your condition. I hate seeing Doctors using there "books" that have nothing to do with our rare problem. It sounds like she is not concerned with modern treatments for us. To give you some good insite please go to the Medications & Therapy page and at the top click on "Help with getting Oxygen prescribed" and scroll down to the post by 'BATCH'. This man is CH.com's O2 expert. I know that post gave my Neuro some understanding to high flow O2 use for CH. It would be nice if you could make your Doctor understand that her book does not cover CH.  Good Luck, Don

Thanks Don that was the biggest part of what I left her. I just hope that she has the humility to read it. Otherwise I am operating on the 3 appointment rule. I will wait and see if she strikes out.
;)
Steve

Peppermint wrote on Dec 9^th, 2008 at 2:54pm:

Do you have a bubbler?  That can really help ease the dryness situation.   I think its VERY proactive to go into your doctor's office, especially a neuro (a.k.a. know-it-all-god-not-willing-to-listen-to-a-patient-prescribe-their-own-treatment-in-general-just-because-you-asked) prepared with literature that is convincing. At least, that's what I've seen many times here in the past.   You may have a good neuro or gp that may listen to you off the bat, but for those who don't, why suffer needlessly when a little printed material will do the trick?   Pep

Hi Peppermint, I have never tried a bubbler. It’s usually not a problem until I hit a M a day. I may make one to try it if I deem it necessary but I like dry air so I have not made it a priority. It’s not a problem until I get 8 hits per day or a few intractable ones.

I was very lucky to find good neurologists right off the bat. Other than the idiots at the TMJ clinic I went to first, which was of my doing early in the onset.

LY, Roland. :-*

wrote on Dec 10^th, 2008 at 8:46am:

Peppermint wrote on Dec 9th, 2008 at 2:54pm: Do you have a bubbler?  That can really help ease the dryness situation.   I think its VERY proactive to go into your doctor's office, especially a neuro (a.k.a. know-it-all-god-not-willing-to-listen-to-a-patient-prescribe-their-own-treatment-in-general-just-because-you-asked) prepared with literature that is convincing. At least, that's what I've seen many times here in the past.   You may have a good neuro or gp that may listen to you off the bat, but for those who don't, why suffer needlessly when a little printed material will do the trick?   Pep Hi Peppermint, I have never tried a bubbler. It’s usually not a problem until I hit a M a day. I may make one to try it if I deem it necessary but I like dry air so I have not made it a priority. It’s not a problem until I get 8 hits per day or a few intractable ones. I was very lucky to find good neurologists right off the bat. Other than the idiots at the TMJ clinic I went to first, which was of my doing early in the onset. LY, Roland. :-*

Well lucky you! That's great.  You might want to give the bubbler a try, using the bubbler is not exactly "wet" air, but you may find its a lot more comfortable.  Huffing 02 often enough might add to your "discomfort" (mildlly speaking  ::) ) so it might be worth a try.  Some of my friends have said it makes a world of difference.  

Pepp  8-)

Gee now that you mentioned it Pep, I was on the horn with Apria and my nero today and forgot to ask for one. I knew I missed something…Rolo… [smiley=ohjez.gif]

wrote on Dec 10^th, 2008 at 11:15pm:

Gee now that you mentioned it Pep, I was on the horn with Apria and my nero today and forgot to ask for one. I knew I missed something…Rolo… [smiley=ohjez.gif]

GEEZE!!!  Now you are sounding like a senile old goat!  LOL!

If you feel you need one, let me know.  I happen to have spares ...

Chuck

Thanks Chuck, Apria screwed up and sent crappy masks and 5 tank stands for the M’s. What a bunch of chiggers! I wrote bubbler on the invoice so I will remember to ask on Monday.

It’s that dam sinillity creeping up on me or the lithium making me forgetfull. It cannot be that I’m just a dumas, can it? HA HA!!!

LY Chuckie!

Roland. :-*

I'm hoping all of this means you got it worked out with the insurance company?  *fingers crossed*

Laurie

Roland,

I hope you get the oxygen situation cleared up.  I've had problems with my insurance for oxygen.  Of course, my insurance has denied about 75% of my claims.  After about six months of beating the insurance company down and appealing the denials, they always pay.  It's frustrating, I know.  Maybe the place you get oxygen from will no longer be under your plan in 2009?  

Good luck to you and let us know what happens!!!!!  


Laura

So I called Apria  O2 today and complained about the following:

Cheep masks; they said they are ordering the one I requested so I will have to wait to see.

Tank stands; they said I have to secure the tanks with a chain and verify to them I did.


They said they would not charge me for O2 this month so as not to conflict with the ins billing cycle. It may take a few bumps to work it all out to my satisfaction, they are not used to dealing with the intended user obviously so time will tell? Oh yes Peppermint, I ordered a bubbler, it is really dry now that the temp is subzero… I just did not want to mess with cleaning one and spilling it in the dark… Roland…

:)

If anyone needs a bubbler let me know in a PM and I will send one off to you ASAP...I have a boat-load of them.


Linda