[Draft of "My Oxygen Page"]

Thanks, Jeff and Bejeeber. 

Jeff, I'll strengthen the caution about not exceeding 15 minutes at a time.  I did mention that some people remove the straps from their masks so the mask will fall off if they fall asleep.  Did you try that?

Bejeeber, I have a caution in there about possible danger for O2 "leakage."  Maybe I should link to a ch.com thread on the subject.  I'll check.

[Draft of "My Oxygen Page"]

Thanks again, Bejeeber!  I've added Flotec to the sources, and put in a link to those welding-tank photos. 

I agree with you about how nice it would be to be able to provide a standard prescription wording.  As I mention in the file, we basically had to dictate ours to my daughter's neurologist, but I don't know what she actually wrote.  If you come across yours, or if anyone reading this has one, I'd be glad to insert it.

One final thing, not to drag this out forever . . . I was PMed by someone saying that it might not be wise to recommend higher flow rates, because of a concern about unbreathed O2 "leaking" into a room and causing the danger of a fire or explosion.  I put a note into the file to that effect.  Do you agree with that concern?  Do you, or other power users, take precautions that should be recommended?

[newboy questions]

Davy, the "k" is a measurement of pain level, from 0 to 10, with 0 being pain free and 10 being the worst.  It's the "kip scale."  You can read more about this scale by clicking here: http://www.clusterbusters.com/tracker.htm

Hey -- you gotta be careful with things like licorice root--with anything that's discussed here!!!  I don't think you should be taking it while you're still jabbing.  Please click on this link to read about cautions and side effects:

http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068

It also tells you how to take it, when you're ready to.

Good luck with the oxygen -- that's the best thing you can do for yourself right now.  Big tank (and a smaller one or more for when you're on the road), regulator with at least 15 liter per minute flow rate, non-rebreather mask.

[new member just saying hi and help!!]

Can't seem to get o2 prescribed here unless my Dr is a tight arse.

What your doctor is, is a cruel idiot.  If you look at the first of the references I suggested, you will see that oxygen is the first-line abortive for CH in the European standards (I gather you're in London).  To quote myself (with full credit to Bejeeber) from that document: "Note also that based on this research the European Federation of Neurological Societies lists inhalation of oxygen as the abortive of choice for cluster headaches in its official guidelines.  The guidelines state: "The first option for the treatment of acute attacks of cluster headache should be the inhalation of 100% oxygen with at least 7 l/min over 15 min . . ."  (It also lists sumatriptan injections.)"  You can read the guidelines here: http://www.guidelines.gov/content.aspx?id=10471 .  7 liters per minute is widely considered to be too low of a flow, however -- and the summary chart of recommendations within the guidelines says 15 lpm.

This is the end of my exhortation to you.  Needless suffering is your choice.  It doesn't hurt your doctor a bit.

[new member just saying hi and help!!]

can't seem to get o2 prescribed

Davyg, you really, really want to change that.  May I suggest that you read sections 1, 7, and 9 here -- http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790/ -- and ask questions.   

And maybe you want to try licorice root:  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068

Not ruling out other options you might find here -- just saying oxygen is a must and licorice root might be a good possibility.  Some newer licorice root testimonials at the end of this long thread:  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1293084254

[Draft of "My Oxygen Page"]

The link gave me a 404, but I think I found it. This it?

Thanks, Arde!  Wish I understood how to include images.  When I click on the image icon I get the {img} {/img} html code, but I don't seem to get access to my files so I can actually insert an image.  A Firefox issue, maybe.

[Draft of "My Oxygen Page"]

Hey CHfather I see that our posts in this topic from last night are now missing (???).

Nah, they're still down in the C'buster Files section.  But I was thinking this might be a good place to continue that discussion (as you said you might), so the file area stays more self-contained(???).

[a potential new option]

No pain so far today, either. So, something is different. I'll continue to report progress on this thread, for those interested. 

Wonderful news!  And please do continue--I for one am very interested.  Thank you.

[Draft of "My Oxygen Page"]

If you didn't advise people NOT to get an oxygen condenser, or whatever the machines that make oxygen out of the air, you should. It's not 100% oxygen. I doubt it'd do any good. 

Yes, Mystina, I made that recommendation, and emphasized it -- in part because that's what my daughter got (a "concentrator"), and what her O2 supplier kept trying to give her no matter how often I explained to them that it wouldn't work for her. 

I can't figure out how to paste images here, but here's a taste treat for you to look forward to (or maybe you've already tried it): http://foodbeast.com/content/2009/07/09/cotton-candy-sandwich/ 

[Looking for "HELP"]

Thanks, Ron.  It's working now.

[Looking for "HELP"]

MS -- First question; always the first question.  You did not mention oxygen: Are you using it?   If not, maybe you can scan through this file -- http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790/0#0 -- to learn more about it.  There's a lot of detail there, but the basics are quite simple.

Sorry you are suffering so.  You will be okay, though, and you'll get all the help here that people can give you.

This page is a good place to start:

http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298051886

It's a lot, but it's stuff you need to know.  I would also look over the licorice root summary, since it might be something that could help you pretty quickly:  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068

[Draft of "My Oxygen Page"]

I hope this doesn't seem too arrogant.  Recent experience with John, and with many others before him, convinced me that I needed to put down my thoughts about oxygen in one place that I could refer people to.  Otherwise, I just keep typing the same things over and over, and leaving things out that I should be mentioning.  The "arrogant" part is that of course there's already the ch.com oxygen page, to which we all are always referring people.  But, truth be told, as very good at that resource is, my daughter (who is very smart) and I (not so much) both found it really kind of daunting when we turned to it in the early days. 

So, at least for my own use, I decided to make my own, which I have posted down in the Clusterbuster files, at http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790 -- with frequent references and links to the ch.com one.

It won't hurt my feelings if people think the ch.com one is better and keep referring people to that one.  If anyone has suggestions about how to make mine better, I would welcome them.  For instance, I don't know enough about the "power user" strategy (where to get a 45 lpm regulator, for example, and all that retrofitting with garbage bags and all).  And I would love it if someone knew where a person could order a "mouthpiece" or "breathing tube," which I have been unable to discover.

And it could be that mine just gets in the way, in which case I will gladly take it down and just use it as something I can post in individual threads, or cut and paste as needed.

Thanks, friends.

[Shot down(again)...ranting/rambling.UPDATE!]

What about this regulator? Up to 40 LPM...

http://www.harborfreight.com/regulator-gauge-94841.html

John, I'm once again not sure, but I don't think that's a regulator; I think it's a regulator gauge.   The item pictured next to it at that Harbor Freight site is a regulator: http://www.harborfreight.com/catalogsearch/result?category=&q=regulator

Some people have that regulator.  Keith and Ron do, I think.  My recollection is that it works fine but does not have any actual lpm settings, so you have to do it by feel.

Many folks get them (for about the same price) at eBay: http://shop.ebay.com/?_from=R40&_trksid=p5197.m570.l1311&_nkw=oxygen+regulator&_sacat=See-All-Categories,  and I think in a previous message I gave you another website that sells them (for quite a bit more, I think).

Just be sure, as I have said, that you are getting the right kind for your tank(s).

[Shot down(again)...ranting/rambling.UPDATE!]

John, first of all, congratulations on persevering.  You are close.  Second, I'm really angry at myself for not urging you to be careful about getting a concentrator (a sadly typical idiot-doctor move), and to call your supplier before they came to make sure of what you were getting.  Third, I recommend that you do try the concentrator, but recognize that it probably won't work, as the others have said.  It should go up to 8 lpm, and in some rare cases that is enough to help (if the noise doesn't just make things worse).

But they gave you an actual regulator . . . or was the regulator prescription met (in their view) by the regulator in the concentrator?  If you have a separate regulator, does it go up to 15 lpm (the knob on the end)?  If you have a regulator and a mask, then you should be set to get tanks and be set up.  But of course if you don't have a proper regulator, you'll need to be sure that gets brought to you, too.  Since this whole thing has been a very, very unfunny comedy of errors, when they bring you the right stuff, please have them set it up for you and show you how to use it. 

Here's another thing I'm worried about.  There are two kinds of valves on tanks, and therefore two different kinds of regulators.  So, even though (if) you have a regulator, it might not work with the tanks they bring.  You should insist that they bring a regulator that will work with the tank(s), or at the very least that they guarantee you that the one you have will work with the tank(s).

My daughter went through all the same crazy crap you're going through, and it was very hard on her (and me).  But when she finally got the right stuff and we got it set up right (no thanks to the supplier), it was like a miracle.  So hang in there, John, hang in there.  And again, my apologies for not "being there" for you as I should have been.

[Shot down(again)...ranting/rambling.UPDATE!]

And it ended with her telling me that she doubted my insurance would cover it. 

First of all, you might have noticed in one of the articles you printed out that something like 45% of cluster headache sufferers get their own oxygen outside the medical establishment.  That's mostly through welding oxygen, and I suppose largely because of idiot, uncaring so-called "doctors" like yours.  So you won't be doing anything unusual if you do it that way.  Be aware that you only get the tank there; the regulator and mask you get separately.  (Knowing nothing, I once walked into a welding place and asked for tank, regulator, and mask -- got turned down and sent away fast!!!)

But, trying to piece this all together, maybe the insurance issue is one reason why the idiot didn't prescribe O2?  If so, have you called your insurance company to check?  It's definitely my impression that many, if not most, insurance companies do cover O2.  It's the front-line, medically-proven technique for aborting CH HAs.  If you found that your insurance company did cover it, is there any chance that if you called back the idiot, told her how terribly the current meds are working, asked again for O2 and told her that your insurance company will cover it, that she'd let you have it?

I'm asking this because things can happen quicker with a prescription for O2, and a 15-lpm regulator and a non-rebreather mask, than if you're putting it together by purchasing all the parts.  But whatever way you go, do not waste time.  As so many others have said, O2 will change your life, or even save it.

If you go with welding O2, I -- and many others here -- can give you advice about the mask and regulator, if you don't feel you're getting clear enough information here: http://www.clusterheadaches.com/O2/index.html

[Shot down(again)...ranting/rambling.UPDATE!]

First of all, to quote the two previous posters: WTF????  That's just disgraceful.  Can you do welding O2 somehow?

Ordered 200 RC seeds from iamshaman.com, and licorice root tincture/vit d3 from hannasherbs.

One of the things Les says in that summary in the Clusterbuster files is that he's not sure about combining licorice and seeds, at least not, as I take it, with both at full dosing strength (http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068, under "Busting and Licorice').  As I recall it, he suggests trying the tincture first, and if it doesn't work, going with seeds the next day since the licorice is out of your system by then.  (This itself is interesting to me and not entirely clear, because it suggests that the licorice root would act almost instantly and you'd know that quickly whether you wanted to keep taking it, whereas RC takes multiple doses and often results in severe post-dose hits.) Maybe that's what you intend--having two options; or maybe using RC to bust and licorice to abort--but I thought I'd mention this.  On the other hand, it seems that at least one person (dblu) had good success combining RC and licorice root (http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1296960364/0#0)

Or maybe, since I only know what I read and am only trying to alert you to what might be a potential "misuse," you might post a question to Les at his thread if you're uncertain: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1293084254/150

[Hello...again.]

Dr appt Monday @ 4 to ask for o2 and referral.

John, I'm recalling from another thread that you were going to go to your doctor a while back, early in the year, for an O2 prescription . . . Or was that another John??  I'm only asking because I hate to give the same boring advice more than once, which is (1) Consider having someone come with you to your appointment, because for some people at least the pain can kind of weaken their advocacy skills; and (2) Bring copies of these articles with you, showing that high-flow, non-rebreather O2 is first-line practice for O2:

“High-Flow Oxygen for Treatment of Cluster Headache” Journal of the American Medical Association  http://jama.ama-assn.org/content/302/22/2451.full

“Inhaled Oxygen and Cluster Headache Sufferers in the United States: Use, Efficacy and Economics: Results from the United States Cluster Headache Survey” http://www.docstoc.com/docs/62904898/US-Cluster-Headache-Oxygen-Survey-Early-View-Online-Publication-HEADACHE

Other advice available upon request.

[Jawbone cavitation source of cluster headaches]

Welcome, Handy, as the one thousandth member of this great group!  Since I'm just a relative newbie myself, I shouldn't really be doing the welcoming, but I couldn't resist.  I believe you have won a free date (sharing a banana split, perhaps?) with your choice of either Lisa Kudrow or our own Hipshot, but we'll probably have to get back to you on the exact details of that in a year or two.

[Aura or something]

Ting, my daughter had some of those kinds of symptoms in her visual field during her last cycle--flashes of bright light, something like aura, and some spatial disorientation that was not exactly dizziness but close to it.  She also was extremely sensitive to light during her attacks: We had to make the room completely dark.  We've been told by her neuro that she does not have migraines (not that any of us trusts diagnoses very far, but she has no migraine symptoms outside her CH attacks).  She did not become green.  She had come off of an antidepressant not long before that, and had done so with no tapering--she just quit one day and started taking St. John's Wort instead--so we decided to attribute her symptoms to SSRI Discontinuation Syndrome and to the sensitivity to light that is a side effect of St. John's Wort.  The symptoms have not returned since her cycle ended, so we don't know if they were related to her CH or not, but I'd say the timing of starting when her cycle began and ending when her cycle ended suggests that they were.

[About As Close As You Can Get]

I just checked and it looks like we're 1 away from having 1000 members. Shouldn't that be cause for some kinda celebration or recognition or sumptin'?

Thousandth person gets a date with Lisa Kudrow or another TV star, Hipshot.  Of course, we know which one you would choose.

[Oxygen method question]

Fascinating, Bejeeber -- great job. Sure looks like the higher lpm has a big payoff in speed of knocking out the HAs. 

Too bad you had to go and ruin it all with your reference to "hotrodders"

[Oxygen method question]

My daughter also gets better results with a "wand" or "tube" (I haven't been able to find the right official name for it)--like the one shown in the photo at the ch.com oxygen page (http://www.clusterheadaches.com/O2/index.html) next to the heading bubbler/moisturizer--than with a mask.  But she's never tried the Optimask, which so many people swear by as a "game-changer."  And I assume you're read here about "power users" with 25-45 lpm flows and big bags.

[Advice needed. Getting desperate]

Clusterbusters?

I realized after I posted this, Bob, that it might seem like I was somehow dissing my much-beloved Clusterbusters, which wasn't my intention.  I know, of course, about the important research Clusterbusters has funded, and your big role (personally and through things like the NatGeo programs) in spreading awareness, but I don't know anything about whether there's a larger "umbrella organization" for CH with some kind of unified approach to fundraising, research, and advocacy, as there is for so many other conditions. 

[Advice needed. Getting desperate]

My problem always is . . . now what???  I'd be willing to try to participate in finding her, or imploring her . . . but what would be asked of her?  (Pretty sure she wouldn't endorse busting, of course (though I guess you never know), but as spokesperson for some campaign for research or awareness or whatever . . . it does seem like an absolute natural.

Also seems like maybe NatGEo could use her as some kind of spokesperson/narrator and get more attention . . . but then again, there's the "illicit" connection.

I don't know anything about the rest of the CH world; for example, I've only been to ch.com once or twice.  Is there some organization that has any kind of act together in terms of research and advocacy??????

[Hello...again.]

Yes, it's pretty much like clockwork for my daughter -- seasonal change = CH, twice a year, like you.  I had thought that was a pretty common thing.