CHfather

Welcome, Arcan. I'm going to let people with more experience answer many of your questions. Surely you have to prepare for the fact that until a fully-effective preventive is available, you're likely to have more CH periods in the future. In one way, if this can possibly be said about CH, you're "lucky," because new treatments are being identified and developed all the time. Even the use of oxygen is a relatively recent development. You have every reason to expect that CH will be "defeated" in the foreseeable future. I don't think you have to worry about suffering from CH for the next 40 years, as you ask. If I may say so, you're "lucky" in three other ways, too. One is that you got a relatively quick diagnosis; many people are misdiagnosed for years and years. The second is that you found this site, where you will meet great people who will do their best to help you. The third is that your doctor prescribed oxygen, which is the most effective, side-effect-free abortive you can get. Many people have to fight for their O2; many never even learn about it. It's wonderful that your oxygen is working using just the cannula (the nosetubes). For most people, they don't help. You need a mask because you want to breathe in pure oxygen, not oxygen mixed with the air around you. You say that you have a tank: that's also good, because often people who get cannula get a "concentrator" -- a machine that creates purer oxygen from the air in the room, but which isn't really very useful for the long-term treatment of CH. I'm hoping you have a regulator on your tank that goes up to 15 liters per minute (lpm), though it sounds possible that you could get relief at lower flow rates. I would suggest that you read through my post here about oxygen: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790 And that you at least look over the references (including one to a different file on oxygen) that are listed here, because it will give you a better idea of what people here are most often discussing: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298051886 Since it seems you have high blood pressure, it could be that the licorice-root treatment that's been discussed here lately would not be advisable for you, but you could look at that information and also at a long but interesting thread about vitamin D3 at the clusterheadaches.com board. Here are links to those: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068 http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/0 The main thing is to keep learning and keep asking questions. Best wishes to you for PF (pain-free) times ahead.

Just to be clear, Ricardo, I wasn't passing any judgment on your experience -- just expressing my gladness that I haven't experienced anything more than a little testiness in the 6 months or so that I've been lucky enough to be hanging around here.

Ricardo, thank you for this perspective. With only the tiniest of exceptions, I have noticed none of the rancor here that you describe. Sure would be hard for me to stay if it were like that. Regarding your ch.com thread. I admit that I didn't read the whole thing (I have to admit that as much as I admire Batch, his gigantic font and lengthy-though-often-amazing posts kind of wear me out), but I wonder whether you've seen these commentaries by Dr. Sewell about some animal studies investigating the mechanisms of O2. There are two of them; part 1 is here: http://www.clusterattack.com/blog/oxygen-inhibits-neuronal-activation-in-the-trigeminocervical-complex-after-stimulation-of-trigeminal-autonomic-reflex-but-not-during-direct-dural-activation-of-trigeminal-afferents/

This is GREAT news -- thanks for the heartwarming story. Nice going.

that was me. hoping. sorry.  Could happen, though!Â

The oxygen and the mushrooms are in two entirely different categories, met la. As I just wrote in another place here, oxygen works, it's very safe for most people, it's the first-line medically recommended abortive, it's fully legal when prescribed, and for all those reasons it should be relatively easy for you to get from a doctor (although too many doctors have proven me wrong on that one). Again, let me suggest that you look at this file, which will tell you why O2 is so very important, and which has some suggestions for getting your doc to prescribe it: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790 If your doctor gets pissed off at your insisting on oxygen, you probably have the wrong doctor. And you shouldn't have to "fashion a mask." It should be part of what's provided to you with the prescription. Or you can buy one. You really, really should be moving forward on O2. From reading the ch.com thread fairly carefully, I don't see many people -- if anyone -- talking about the specific form of D3 they're taking, which leads me to think that any pill form must be okay. And I see some doing 10K international units (not mg), and some doing less. It's a lot of reading, but that's what you gotta do: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/0

I think you're asking about general info, Rob, not just RC info. There's a lot of info in the Clusterbuster files that you can access at the bottom right side of this page, under "File Jump." I'll give you some short cuts in a moment, but since you say you've never tried oxygen, I think that's where you ought to put your efforts first. It works, it's safe, it's the first-line medically recommended abortive, it's fully legal when prescribed, and for all those reasons it should be relatively easy for you to get from a doctor (although too many doctors have proven me wrong on that one). I think most people here would agree with me that it's the best way for you to prepare for a future cycle, or deal with the present one if it continues. You might want to skim this first (or even read it with some care): http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790 Here's a good file about RC/LSA (other ones by TommyD contain additional information): http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974 Here's a highlights package (with a link to another page about oxygen): http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298051886 Here's a summary of Les Genser's thoughts: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068 And here's an interesting thread about Vitamin D3 from ch.com: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/50 It's a great community here. Read up; ask more questions; you'll get answers.

Bob, as I read met la's posts in another thread here (http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1300245052/18#17), I thought about the many eloquent ways that CH people have described the horror of these attacks, not just the physical pain but the emotional and psychological toll. And so I'm playing producer again, with the thought that if viewers are going to see people having attacks, they might also benefit from hearing in sufferers' own eloquent words--perhaps as narration while the attacks are being shown--what it really means to deal with this.

met la, you've said it all here. it's heartbreaking for me to read it. for most people, oxygen is the beginning of the way out. can you tell us what you can do, or have done, about getting oxygen?

met la, so sorry you're suffering. i can tell you that there are many people here who were in the same psychological state as you some time ago who are now enjoying their lives again. it is not hopeless -- far from it. i can't answer your specific questions about whether it's just a fluctuation that you're experiencing, but i can tell you what practically everyone else here would tell you, which is that oxygen must be part of your CH arsenal. it doesn't sound like you have it now. you can read more about oxygen here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790 when you have the basic idea, ask questions, any questions you have, and you'll get answers. i do agree with FRUSTRATED that you'd be better positioned if you start a new thread rather than being tucked away here . . . but people will probably still find you here. if you want to do more reading about what the folks here have found most helpful, you can start here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298051886 it's tough being where you are, with all that pain -- very tough. but i hope you'll take my word for it: it can and will get better.

Nancy, I'm glad that was helpful, and wishing you the best. Please let us know how things turn out. If you find the D3 to be helpful, maybe you could post a quick note at this thread -- http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1300245052/13#13 -- since many of us are quite interested, and not all of us go regularly to the ch.com board.

Nancy, have you read the post by Batch (the O2 guru) that is #10 in this thread: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1298840351/10#10 I just came across it. It seems like it would be helpful to you.

Nancy, I wish I had some good advice for you, and I'm hoping others will. I've read you other thread (more about that in a second), and it seems like you're getting solid knowledge there (yes, use it when he wakes up with a full-blown attack--it's not too late, but it can take longer (or two 15-minute "sessions" with about 10 minutes in between); yes, breathe as deeply as possible and exhale thoroughly . . .etc.). Like I say, I hope others here can perhaps answer your other questions. It seems like your "when" question is the most pressing one, and I just don't have the experience to answer that, since my daughter's shadows were not so bad and she handled them with ginger tea, caffeine, and other non-oxygen things. It must be quite terrible for you and him, having so much hope for the O2 and then being so disappointed. There are some people for whom it doesn't work, but you should (he should) keep trying. My daughter, as an extra step, always has quickly slammed down a RedBull or other energy drink just before getting onto the O2 (she's almost always hit while she's asleep, so she keep the RedBull nearby, gets up fast, slams it, and goes to the O2). I can't say whether that has helped or not, but she does get a quick abort (and because she's so darn tired and so relieved when the HA goes away, for her there's no problem with the RedBull keeping her awake). I don't know what people's reading practices are here, but since so many people have already looked at this thread, maybe you'd be better off starting a new one?? Also, the link you put up doesn't work. I have that problem all the time with putting up links here . . . somehow that semicolon shows up and makes a space part of the link or something. I suspect most folks know they can just copy what you've pasted, up to the final "7," and paste it into their browser's address bar, but you can also fix it by clicking on the "modify" button at the top right of your post and then deleting the space and the ; after that 7. For safety's sake, maybe make a new paragraph for anything after that. I remember when I was in the process of getting my daughter's oxygen, we had pinned so much hope on it that I was just terrified that it wouldn't work and she'd become more depressed and feel more hopeless. Lincare was also her provider (though perhaps in a different location), and I had to educate them and push them every step of the way. It sounds like in you're in pretty much the same position as me, trying to find something that works for someone you love who is suffering. There's no reason to really doubt that O2 will work when you get all this sorted out. In the meantime, my heart goes out to you. I'm glad to see you're also trying the D3.

Wow. Thanks!

Thanks, Jeff. I've put warnings in about not doing O2 for more than 15 minutes straight, and a caveat about the "power user" method (which I'll look into more on ch.com, trying to find a thread that might give people a better sense of the fors and the againsts). The main thing I remain perplexed about is that I've read people saying that it's wise to keep on the O2 for 5-10 minutes after a headache has been aborted, to prevent other attacks in the short run (same night/same day). But if it were to take the full 15 minutes to abort the first attack, I wonder if it's wise to do the additional 5-10 "preventive" minutes, given the possible-lung-damage issue you've raised. If your respiratory therapist friend would have any insight about that, I'd be interested. Maybe that's another case of wait 5 minutes, then do 5-10 more? Again -- thanks! And of course any other insights are completely welcome.

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.

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?

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.

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.

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

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.

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(???).

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

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/Â

Thanks, Ron. It's working now.