CHfather

Stevil, here are two things you might print out to bring with you to the doc regarding your O2 prescription. Both are from prestigious journals (Journal of the American Medical Association and Headache), and both show that high-flow O2 with a non-rebreather mask is proper treatment for CH. “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 The JAMA study talks about 12 liters per minute flow, but as you have probably read here, most want at least 15 lpm, and many are using considerably higher flows. As you may also have read here, the most important thing is to get a prescription for the tanks, because once you have the tanks, you can get the rest on a do-it-yourself basis if you have to.

Just in the interest of continuing to build the knowledge base here, I'll mention that my daughter also was on nothing she needed to detox from, and in fact had never used any of the meds requiring detox, and seeds worked great for her, also. I think I read somewhere a speculation that busting might be hampered (though not prevented) by ever having used those meds, so, as I say, I'm adding this to the knowledge base.

Stevil, there are only two good things about this horrible story--but they are very good. The first, and most important, is that you are going to be a whole lot better very soon, if only because of the O2. Then we will share tears of joy with you instead of shedding tears over what you are going through. The second is just a feeling that I have, that somehow your story is going to help thousands or even tens of thousands of other people with cluster headaches get proper treatment. I believe from your passion and your skill as a writer that when you are ready you can tell a story that will get the attention of at least the military medical system. As the folks before me have said, get your O2 set up. Ask questions about that if you have any, and ask about anything else. You'll get answers. We are with you.

Carol, I'll be very interested in further reports from you. My daughter's headache pain greatly intensified immediately after a very difficult tooth removal in 2004, and the removal of her wisdom teeth in 1999, also difficult, was very near to the initial onset of her CH symptoms. We looked into NICO a bit and found it was quite controversial, which discouraged us from following up . . . but I have always wondered about the close correlation between her CH and that dental work. Jerry

I do find Dr. Andrew Sewell's blog a good place to keep up with some recent CH developments. Most recently, there's a report about a trial that failed because the CH "subjects" couldn't keep to the protocols ("Frovia flames out"), and also another one about how chronic CH seems to have an episodic quality to it ("Do chronic patients cycle?"). There's also an interesting discussion (under Categories/Animal studies/"Akerman Wins a Prize for This One") about trying to figure out why oxygen works, and about why it's so hard to find CH treatments (in part because rats don't get CH). http://www.clusterattack.com/blog/home/

Okay . . . I thought I had reposted this reply here, from where Frustrated had originally posted, in the ClusterBuster files . . . but now I don't see it. I'm just posting it to possibly avoid redundancy. So sorry for what you're going through, Frustrated. I would strongly suggest that you move this post (re-post it) to the General Board, where more people are likely see it. Here in the ClusterBuster files section there are excellent introductions to the use of LSA seeds: for example, in the file titled "LSA" (http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974) and in the one titled "Dosing Methods." I'd say that of the seeds, most people find RC (rivea corymbosa) the easiest to work with. Once you've posted at the General Board, you will get lots of question/suggestions to make sure you are using your oxygen as effectively as possible, and once you've read the LSA information, you can start asking more specific questions. People are here for you. It's going to get better.

Since we had reports of a couple of instances of flu/fever seeming to knock out CH for a while, and since my daughter was one of those instances (during a time when she was taking nothing abortive or preventive for her HAs), I took the liberty of writing to a med school prof who's a CH activist to find out if he knew anything about that connection. One of those "You never know, but let's not just drop it" kinds of things. Below is his generously quick reply to me. Nothing to get excited about by any means -- just thought I'd share it. >>>>No, that's odd. There are plenty of reports of cluster headache being triggered by viral infections, but I haven't heard of cluster attacks being suppressed by them! Flu symptoms are caused by cytokines and prostaglandins secreted by the immune system in response to infection. I will keep my eye out for any research suggesting a connection. Often patients notice these things before doctors do.<<<<

Thank you, Bob -- great work! Next step, to get it shown in every med school in the world. Jerry

For your call tomorrow: We found that bringing these two articles to my daughter's neuro helped her get the right prescription, since they're from respected journals and they're clear about the need for high-flow, non-rebreather delivery: "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

E'mon, you've probably read enough here to know that you want to get started on an oxygen setup right away. Have you reviewed the "oxygen page" from the black-and-white "menu" tab on the left side of the page? Not knowing what you might already know, I'll just give the usual advice -- read and ASK QUESTIONS. It's not just the stories here that are inspiring, it's the amazing people telling them, too. There's good information at the links page, too: http://www.clusterbusters.com/ (click on "other links"); and in the "clusterbuster files" you can access from the "forum jump" menu at the bottom right of the page. You might want to order an Optimask right away. I always give the caveat that I am not a CH sufferer myself -- my daughter is. But I will say that we found HBWR seeds tough to work with, and RC (rivea corymbosa) much easier and, in my daughter's case (and many others), quite effective. I suspect you won't have to worry about any work-interrupting psychedelic effects from seeds, but I suppose you're wise to be cautious. I don't know what it's like to come off that much verapamil cold turkey, if that's what you're planning to do in order to detox for a bust in five days. It's possible (others here will know better) that you want to have the oxygen for aborting before you do that. In any event, you are in many good hands here.

My daughter had some head trauma, long long before her CH started . . . but the thing is that I think most or at least very many people have had head trauma at one time or another (football, anyone?), so it would be hard, I think, to show any kind of definitive relationship.

After talking to my daughter, I have one small, final thought to add. I ask her from time to time whether she'd be kind enough to come on the board and express her thanks (which are deep and sincere) personally, instead of just through me. I realized yesterday that because her situation is relatively minor compared to so many (she's episodic; until her last cluster she was somehow coping by just enduring her attacks with no abortives or preventives at all; and the combination of seeds and O2 worked extremely well for her), she doesn't want to relive anything related to CH, and she doesn't want to consider that things could become worse for her in the future. She doesn't want to read, for example, about people for whom seeds or O2 don't seem to be working. This might be a failure of compassion, but she's young, too, and trying to deal with the rest of her life, which isn't an easy one, so I give her a grudging pass. I think maybe a lot of episodics might fantasize that the last cluster somehow might have been their last one ever. I know that in psychology certain things and experiences are recognized as "anchors" that automatically bring up good or bad feelings, and I suppose it could be true that for some people who have been at the board when they were hurting and desperate and scared, just returning to it stirs up all those bad feelings, even if they're okay at that moment. May we all hope that rum specials or BOL or licorice root or dereksgirl's investigations into the effects of the flu or some other breakthrough will mean that one day no one has to come here at all. I heard on the radio the other day that 50,000 Parkinson's patients in the US now have electrodes in their brains that reduce or even prevent tremors. It's going to happen -- and then we'll have to find another, happier reason to keep this amazing group together.

In Philly, silly. (PF, from what I last heard.)

I'd try hard to be there . . . and maybe my daughter would come, too. Maybe, if it happens, those who do go could bring back somea them there bottles for others to order?? (I actually worked in the BVI, on and off, many (,many) years ago.)

Just getting this off my chest . . . I've only been here a little while, just a few months, but I've been shocked by how many folks show up, receive an outpouring of not just generous assistance but something pretty darn close to real love, and then disappear without so much as a thank-you or a good-bye or a "Hallelujah, I'm PF; don't need you folks anymore!" I can easily count five such cases without even trying, and that doesn't include the one who at least answered my PM asking what was up. It makes me admire you all all the more, because it feels kind of like a slap in the face to me; and it makes me more appreciative of the keiths and beckyvs and so many, many others who stick around, report on how they're doing, say thanks, and even help others.

Thanks, Les! I think I've probably said this before, maybe even more than once, but I think there's a point (which you haven't reached yet) where getting information to Dr. Andrew Sewell at Yale might be a good idea. In my experience, he's been quite good at popularizing alt treatments. Jerry

Leslie, I know that it says somewhere in the Clusterbuster files (or somewhere at this board) that the water should not be fluoridated. We figured it was worth it to buy a bottle of spring water in order to adhere to that. Jerry

Eamon, in your other post you say you've been reading quite a bit around this board. So I'm assuming you either have an oxygen setup or you are doing what you need to do to get one, and also that you have read about the relationship between zomig and busting. Keep reading and ask your questions; you'll get answers.

It's discussed in the thread "a potential new option," on the general board.

Thank you, Les. I'm also looking forward to a report from your meeting this week with the woman from the board of the Herbalist Guild.

my daughter has CH, jeff. in many ways, i just didn't want to know how bad it was for her, so i accepted her word for it that she'd "be okay," that hers weren't as bad as some people's . . . because it was too much torture being far away from her and imagining what she was going through (by herself). then, visiting during a cycle and sitting up with her through a couple of terrible attacks (with no meds at all) taught me everything i needed to know about how much she was suffering. luckily, we got help from this place and she's doing much, much better, but it's still hard for me to keep from crying when i think about her CH (right now, for example).

Hang in there. All this crap is par for the course for a lot of people. Remember, too, that getting a tank is key, whatever nonsense they're going to tell you about flow; you can DIY from there. If the nurse might be willing to watch a crappy but eventually informative news report, there's a short youtube video that mentions the JAMA high-flow study and might educate her a bit about what you're going through and what you need:

VA, to reiterate:   >at least 15 lpm flow on the regulator (i guess Takinit is saying 10 might be okay if that's all they'll give you; worth trying??--I'm not an expert)   >non-rebreather mask (for some people, including my daughter, a breathing tube works just as well and is less claustropobhic, but the non-rebreather mask is probably your goal)   >at least one large tank; but preferably at least one large one and at least one smaller one i believe all those things should be relatively straightforward to get. Takinit might be right that you might be able to get things from the O2 supplier once you have a basic script, but like he said, it's a lot easier if it starts from the doc's office. and of course if all you can get is a tank and whatever they'll give you, of course you should accept that and DIY from there. i am pretty certain, though, that a concentrator (a machine that makes O2 from ambient air) will get you nowhere, because the flow will only go up to 7 or 8 (that was the first thing they gave my daughter). i think you should personally call the O2 supplier once the script is in to them, double-checking to make sure they know what you need. (i'm telling you all this from my experience with my daughter, where everybody who could screw up, did, in almost every possible way. including the neuro who said she'd fax the script to the O2 people right away, and then went home without having done so, and the O2 people who didn't set up the tank for us and left without giving us the wrench we needed) when it's delivered, have them set it up and show you how to use it (as they should do). it's all extremely simple once you know how to do it, but there's no point having problems or anxieties when you finally settle down for what we all hope will be some well-earned, blessed RELIEF. and be sure to look at the O2 file, re such things as blocking off one hole in the mask and cutting off the elastic straps on the mask (so you don't fall asleep with it on). jerry

VA, this is very good news. Congratulations! It is a critical first step, so you have leverage for the next ones. But I wouldn't count on 7 lpm and wrong mask being the only problems. First, make sure it's not a concentrator, which won't help you at all. Has to be a tank. And it has to be a big tank, and/or multiple smaller ones, or else you'll be running out of O2. (You actually want big tanks and small ones, because the small ones are a lot more portable.) When you get a tank, if it's an e-type (see the oxygen file at the menu tab on the left here, or just ask your provider) and you don't get a decent regulator, remember my offer and PM me. I'd try to call that nurse back right away and get things straight, though, so the prescription says 15 lpm regulator. You could email/fax/hand-deliver the articles to her so she knows you're not making all this up. At least the JAMA one, and probably the other one, too, specifies high flow with non-rebreather mask.

VA, please don't think I'm getting on your case in any negative way. I went through a similar thing with my daughter, who didn't want me to piss off her neuro or her oxygen supplier (both of whom, as someone wrote here, deserve to be shot for their inadequate and uncaring treatment of her). I guess your situation just touches me because it seems so close to hers and because I saw the difference that O2 could make. I will only say that I approached it very apologetically with her providers: "I'm really sorry to bother you again; I know you have a lot of patients in need of your help, but my daughter is suffering the worst pain that a human can endure, cluster headaches, and I don't want to see her suffering any longer than she has to. Do you mind if I call every morning just to see if you might have an opening?" Of course, this works easier if someone else is calling on your behalf. But I did get her in to the neuro 11 days before her scheduled appointment using that approach, and the O2 folks finally went out of their way to get her the right equipment. (I sent flowers with a thank-you note in her name to both of them afterward, too, just to be sure they remembered her, even though I would rather have sent them something more lethal.) Forgive me if this advice is way too parental. I'm just throwing out what I have, 'cause I'd sure like to see things get better for you.