CHfather
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Posts posted by CHfather
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What has been your experience with all of this, if I may? Have you managed to get it under control?
It's one reason I'm not a "hero," Arcan. I don't have CH; I've just been trying to help my daughter and learning as much as I can. She's episodic (twice a year: when fall changes to winter and when spring turns to summer). RC and O2 made her last cycle a lot easier and seemingly shorter, and we're hoping that a combination of strategies might prevent or diminish the next one (which we'll find out about pretty soon). People here were wonderfully helpful to me/us in many ways; I stick around to learn as much as I can and to pay it forward.
As for her, she has a very demanding, high-pressure job that she's been able to retain despite her CH (her cycles were typically lasting about 10 weeks), and she appreciates how precious life can be a lot more than a lot of her peers do.
She has low blood pressure already, so she never could take verapamil; she reacted very badly to steroids (she and I are both pretty violently "allergic" to them); she hated the idea of injecting herself with imitrex. It is suspected that one reason the RC worked so well for her is that she never really had the "busting blockers" in her system (Les has a similar hypothesis about licorice root working better for people who have not used a lot of "mainstream" meds, or not used them in a long time.)Â
Also, her doctors either didn't prescribe oxygen or misprescribed it (with cannula/concentrator), so she suffered needlessly for many years, which is one reason I tend to jump in here when there's an oxygen issue involved. If I can keep anyone from, as I say, suffering needlessly, it seems important to do it.
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With any luck at all, Arcan, there will be a treatment for something like permanent remission of CH before your cycles get worse -- if they do.
Speaking of which, I haven't been through all the posts yet, but does anyone know if the licorice root treatment could work to avoid cycles?Here's the link to Les Genser's thread about licorice root. I would try to say what I think his view is about preventing cycles, but he has been extremely generous with his time and I'd bet that he will answer a question you put to him there.
http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1293084254
The D3 thread that I mentioned in my first post, over at the ch.com board, contains suggestions that that regimen may be preventing cycles. That's a good board for you to know about/visit anyway, since they talk a lot more there about "mainstream" treatments like verap and imitrex.
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You do a great job for a non-native speaker, Arcan!
I have found that the word "trigger" is used here and in other CH discussions in a variety of ways. Some triggers, such as alcohol, seem to create a headache almost immediately in many people. (But some people are not triggered by alcohol at all, and some are triggered by some kinds of alcohol but not others.) Other triggers are viewed as bringing on headaches that are worse than "normal," but not necessarily immediately (maybe later that night). I could make a very long list of things that people describe as triggers, from stress to chocolate, perfume to tobacco smoke, gas, flying in an airplane, etc. Unfortunately, because CH operates so differently in many ways from person to person, each person kind of comes to identify his or her own triggers. For many people -- I would say most people -- things that trigger headaches while they're in cycle do not trigger them when they're out of cycle.
Other people might comment on your decision to go with verap, O2, and other strategies. I know that for my daughter (whose CH began when she just a little older than you), and I think for many people, her CH attacks were more manageable when they began, and became more difficult over the years. For about six years she used nothing at all to prevent or abort attacks, just gutted through them. So you might also have many years of relatively mild episodes that are manageable for you with oxygen and some other basic treatment.
This is just my opinion, but if you're having success now, I would say to go with it but always remember that there are options. I think many people here feel that if busting materials were not "illegal" and therefore not "mainstream," busting would be the preferred medical treatment for CH. I took me a long time to understand that. (I put "illegal" in quotes there because it is perfectly legal in most places to own RC (rivea corymbosa) and HBWR (Hawaiian baby woodrose) seeds, from which many people create the busting agent LSA.) And short of these "non-mainstream" treatments, there are things like licorice root and vitamin D3 that are showing themselves to be quite effective for some people. I guess I'm just saying that if you start having side effects you don't like (as you said in your first post, the verap does lower your blood pressure), consider the alternatives. We all will hope that it will be a long, long time between your cycles and that you'll continue being able to manage them well.
Sorry to go on so long, but regarding oxygen, do you have a good sense of what you have and what you need? How high does your regulator go? From what you describe, you might not need a lot of oxygen, but is your tank large and do you have another smaller one for portability? Are you planning to ask your oxygen supplier for the mask or get one on your own? No need to answer these questions if you're confident you have what you need, and they might be more important way down the road than they are right now, anyway.
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You're the best, Dan. Great story, beautifully told. My daughter and I are indebted to you.
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Arcan, there are real heroes here, and, while Ron's kind words are deeply appreciated, I'm not one of them.
It occurs to me that there are some basic things that experienced people with CH know that you might not be aware of. For example, many people find that slamming down a RedBull, or some other energy drink with taurine in it, at the onset of an attack helps a lot. They often do that just before jumping onto the oxygen. My daughter got by somehow for many years by eating coffee beans at the beginning of an attack. Ginger tea helps some folks with the shadows, or even by reducing the severity of attacks (a teaspoon of powdered ginger in hot water works). Melatonin (6-12 mg. taken before bed) has helped some people. As you look around the site, you'll see many other strategies (capsaicin in various forms, for example). It's generally true that you have to experiment to find what will work for you.
Also, I assume you've noticed some "triggers" -- for most people, alcohol is a trigger, but many other things can also trigger attacks.
Just some basic thoughts.
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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.Â
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:Â 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:Â
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.
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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.
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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/
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This is GREAT news -- thanks for the heartwarming story. Nice going.
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the person said that he was goin to be on oprah and the o'reilly factor.maybe they were HOPING!!!!!
i will see what i can find.
that was me. hoping. sorry.Â
 Could happen, though! 
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don t know yet if i will be able to get prescription for it
, but i will discuss it with my neurologist ,i suppose i could fashion a mask , but i would hate to piss off the doctors with it at this point ,or the mushrooms
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).Â
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:Â 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.
i will get the biggest dose they sell 10k mg seems like alot maybe at gncbut i am wondering there are different forms of vitamins ,, what specific form of d 3 are you taking ? i mean the people who it is working for ?Â
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
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I'm going to read more about the RC seeds too.. any short cuts to info?
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."Â
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):Â 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):Â http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298051886
Here's a summary of Les Genser's thoughts:Â http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068
And here's an interesting thread about Vitamin D3 from ch.com:Â 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.
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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.
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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?
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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.
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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.
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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.
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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.
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Wow. Thanks!
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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.
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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.
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Thanks again, Bejeeber! I've added Flotec to the sources, and put in a link to those welding-tank photos.Â
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?
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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.
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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.
What's next?
in General Board
Posted
I don't think you'll extract a crisp answer to your licorice root question even from reading the whole thread. Maybe you want to do that just out of courtesy, but I also think you could just ask your question at the end of the thread, if you want to. I think I can guess what Les's answer would be, but I wouldn't mind seeing it myself.