CHfather

Dan, I have nothing to add to what your friends here have said and will say. I'm so sorry that you're suffering, because I've learned quickly in my short time here what a great and generous guy you are. If it's BOL or whatever, I hope you'll get what you need soon. Wish I had more than words for you. Jerry

No, Ting, I can't take credit for it. Just came across it while doing some research and thought of you all.

A Hasidic parable tells the story of a man who died and found himself on the other side. He was standing there and there were two huge halls in front of him. One was labeled Heaven; the other was labeled Hell. And an angel took the man on a little journey. First, he took him into Hell. In Hell, there was a huge banquet table filled with every delicacy a human could ever eat, beautiful strawberries, kiwi fruit, and exotic delicacies that words cannot describe. Everyone was sitting at this huge banquet table, but all of their arms, from the wrist up to the shoulder, were wrapped inside of a very tight cast. They could not bend their elbows. There was moaning and gnashing and cursing and screaming, because although people sat at this huge wonderful table, they couldn’t bend their elbows to pick up the food and eat it. This truly was Hell. The angel said, “Now come here, let me show you something.” They walked next door into Heaven. They see the same banquet table filled with delicacies to delight the angels, and people are still sitting at the table. This man notices, quite to his astonishment, that everyone still has the casts on their arms. They can’t bend their elbows at all. But here in Heaven, everyone is laughing and giggling and smiling and singing wonderful songs and feasting on this glorious banquet. The man was a bit perplexed, until he noticed that here in Heaven people were picking up the food, and with their locked arms, reaching across the table to feed their fellow man.

Tuesday, that oxygen information can be a little daunting, though you should read it. It doesn't sound like you're using oxygen (O2) at all, so the first thing I think you need to do is call your doctor and request it -- demand it; don't take no for an answer. At least make a prompt appointment so you can demand it. It can make a huge, huge difference, and not enough doctors are aware of it, or prescribe it properly. (O2 is provided by a medical supply company through a prescription from your doctor.) If you need help knowing what to ask for, people here will help you. You must get a big tank, a high-flow (15 liters per minute) regulator, and a non-rebreather mask. There are articles from major medical journals you can show your doctor about how effective this is. I posted a pretty long message about O2 to JillyfromPhilly in the General Board in her thread "verap, anxiety, antidepressants and other fun stuf"; you might want to look at that. There are a lot of other short-term abortives discussed here at this board. I'd say, from my observation, that chugging RedBull or some other high-caffeine-plus-taurine beverage is pretty high on the list, and some have suggested going outside (if you live in a cold place) and inhaling cold air strongly through your nose. Others will have other ideas, or you will find them by browsing through the messages. Also, I think your doctor was wrong about having to use the Imitrex "before the headache," but others can tell you more about that, since I'm not the CH sufferer in my family, my daughter is, and she, like you, treated it with nothing at all (except that she did it that way for six years, if you can imagine!). (She had been given the wrong oxygen prescription by her doctor, and therefore assumed that oxygen "didn't work" for her. When she got the right prescription, everything got a lot better.) I believe that others here more knowledgeable than me can help you, and will help you, with anything you need to know about the "busting" method or anything else. I think they might suggest that if you can abort attacks with something other than Imitrex, you should. But I will let them take over. You have come to a great place. The people here probably saved my daughter's life. Things will get better for you!

Sam, there are a lot of nicely prepared files here that can help answer many questions. To access them, you go to the pulldown menu at the bottom right side of the page, where it says "Forum Jump," and then click on "ClusterBuster Files." In this case, the file titled "LSA" will help answer your questions, I think. This can be handy if you have questions when no one's here to answer you. But I'm sure others will also help you. Here's what it says there regarding dosing (but you should probably read the whole thing): >>The beginning dose might be one or two seeds, with increases later, one seed at a time, if needed.<< Also, here's a link to a med-school professor's report about HBWR -- http://www.maps.org/research/sewell_2008_aha_lsa_poster.pdf -- although it's my understanding that the extraction method he describes is overcomplicated, compared to what's in the "LSA" file here.

Sam, check out the thread "The future of BOL and Entheogen Corp." on the "Research and Scientific News" board here. You're in the right place. Hope you're pursuing oxygen. Jerry

Just wanted to share this with you all: made me think of you when I read it. (A "currach," I'm told, is a kind of canvas canoe.) Beannacht ("Blessing") by John O'Donohue On the day when the weight deadens on your shoulders and you stumble, may the clay dance to balance you. And when your eyes freeze behind the grey window and the ghost of loss gets in to you, may a flock of colours, indigo, red, green, and azure blue come to awaken in you a meadow of delight. When the canvas frays in the currach of thought and a stain of ocean blackens beneath you, may there come across the waters a path of yellow moonlight to bring you safely home. May the nourishment of the earth be yours, may the clarity of light be yours, may the fluency of the ocean be yours, may the protection of the ancestors be yours. And so may a slow wind work these words of love around you, an invisible cloak to mind your life.

Jilly, what happened with your doctor appointment on Thursday, getting O2, and all that?

>>I'm in Sheffield<< gosh, your name looks welsh ;D people here have amazing stories to tell. my daughter went through six years of just enduring her multi-hour headaches, day after day, six months of the year, owing to a combination of misdiagnosis, bad doctors (even after she was diagnosed), bad reactions to some common CH meds, and, eventually, helpless despair. she somehow managed to keep a demanding job during that time, too. thanks to this board and a few pretty simple actions (like dan says), the horrible, nearly unbearable part is in her past now. you'll make it through this, and what you're going through now will be in your past, too.

and the rum

So sorry you're dealing with this. I'm not a CH sufferer myself; my daughter is, and I've been all over this board and others looking for solutions, so let me mention some things people have talked about here for emergency relief. Chugging RedBull or another energy drink with caffeine and taurine helps some people. Other fast ingestions of caffeine. Inhaling very cold air through your nose. Intense physical activity. Go to the hospital, tell them you have CH, ask to use their oxygen (15 lpm flow, non-rebreather mask, inhale deeply). Some have gone to fire stations or EMT stations with the same request. Here's a link to the Journal of the American Medical Association article about oxygen: Maybe print it and bring it with you: http://jama.ama-assn.org/content/302/22/2451.full  You must have the high flow rate and a mask, not cannula. It says so in the article. I suppose you might also get some kind of prescription or other emergency treatment (Imitrex, for example, and/or verapamil) at a hospital, or by calling your doctor. (Don't be afraid to call -- you need help; that's his job, Christmas or not.) People here caution about long-term use of the drugs prescribed for CH, but maybe in the short run they'd be good for you to use. (Needless to say, I'm not a doctor--just telling you what I've read and learned from my daughter's horrible experience.) If you can get to some oxygen, you should get relief within about 15 minutes, but keep going for another 5 to 10 or they're likely to come back. If it doesn't work in 15 minutes, wait 10 minutes and then start again. All these things are better if you catch an attack quickly. So stock up on RedBull. Others may add more. I hope you get help. Stay in touch here. Directly, or indirectly, we know what it's like, and people here will help you get past this. Jerry

Les, thank you for taking the time to share this so thoroughly with us. Any cause for hope is worth exploring, and you are quite persuasive about this one. I hope you don't find posts like Tingeling's to be negative -- for someone like me, always looking for ideas for my daughter, the potential blood pressure issue could be a deal-breaker, since my daughter's "normal" resting bp is 90/60. (That made her, for example, ineligible for verapamil -- probably a good thing, from what I've read here.) I'd also like to suggest that somehow the efficacy of this be tracked -- a separate "licorice" thread or something. I know that for me, Dr. Sewell's articles about various treatments were very helpful in many ways (including leading me to Clusterbusters), and I feel pretty confident that if this is shown to work, he would write about it, which could get the word to a lot more people. Cart before the horse, I know . . . Just saying.

Jilly, all I can say about the family thing is that the instinct to find excuses not to have to be present, to be in denial about how hard the kid's life is, is very strong. (Lost my A+ there, for awk structure, but it had to go some time.) My daughter would always tell me. "It's not so bad, dad. Don't worry." But this time I was there during her attacks, and a lot of that time -- before O2 and busting -- I just wanted to run away. I'm not patting myself on the back; just saying I can understand how much easier it is to be in denial. Now that I'm back home and not with my daughter, I still dread picking up the phone to call and find out how she's doing. So far, reports are good, but I always wonder/fear what it will be like if they aren't. I feel like everybody here is family, which makes you my adopted daughter whether I want you to be or not! It took a while to get the O2 for my (other) daughter (the one that's not you) -- a couple of days. Yes, I think insurance will cover the whole deal. I think if I was (or were) you, maybe I'd contact suppliers now, starting with Miller Med, and just ask what it would take, if you got a prescription on Thursday afternoon for a large tank, a regulator of at least 15 LPM, and a non-rebreather mask, to get that prescription filled on Thursday late or on Friday. (More awk) As I mentioned, my daughter's supplier had never even heard of CH, but you might try telling them (or having the ex tell them) why this is so urgent for you. If they know CH, I imagine they'll understand. When my daughter was scheduled to come to Chicago last week on business, I contacted a local buster who let me borrow one of his tanks (I had a mask and a regulator, but he would have loaned those to me, too). Maybe you might post a message at this board asking whether anyone would be able to do the same for you. And, for the tank, there's always the welding-supply method, no prescription needed, that's often mentioned here and that I believe has been suggested to you. I failed utterly when I tried that, but I think it was because I was so transparently not a welder, and I asked so stupidly. Apparently it's not hard to get a tank. Others can advise you better than I can about this. Wish I knew more. Pops

Thanks, Rock and MJ. She's doing so much better since these early posts of mine -- thanks to all the heroes at Clusterbusters. And once she got the CH under control, the vomiting stopped. I think you really might be right, MJ, because the experience very definitely was that her body wanted everything OUT, NOW, and her last vomit tended to coincide with the abating of her HA. Much appreciated -- and may she never have to deal with that again! Jerry

Jilly wrote: >>Seeing the doc on Thursday & pushing (harder) for a script<< Jilly, I wrote you a long message a while earlier, and then my ISP messed up and I lost it. So I'll give you the shorter version here. This is based on the arduous experience my daughter and I had trying to get a proper O2 setup. Just some things to consider. 1. Maybe have someone come with you to the doc? We all have had those times when we really didn't get satisfactory service from a physician and later regretted it. Especially if you're already feeling crummy, someone with you as an advocate can help a lot. (My daughter was in the middle of a severe CH attack at the very time of her appointment, throwing up into the doc's wastebasket and crying from the pain. Doc still treated her like she had a hangnail and she (the doc) had more important patients to see.) 2. We found that handing my daughter's doc those articles about O2 that I linked to in your earlier thread seemed to make a difference. The doc became a little huffy when I pushed them at her, but I think it showed her that we were serious and knew what we were talking about, and she (the doc) wasn't going to get away with half-assing this. 3. It turned out that we basically ended up dictating the prescription to the doc. So it's good if you know exactly what you want: several big tanks, maybe a smaller one or two for travel/office (as I mentioned in an earlier post); at least 15 lpm regulator, non-rebreather mask. OTHERS WITH MORE EXPERTISE, please help here with a full precise list of what Jilly should be demanding. I know many feel you should get longer tubing so you can pace if you want to and a "bubbler" (humidifier?) to make the O2 less harsh as you inhale it. My daughter doesn't have either of those things, so some are more optional than others. 4. For my daughter -- who as I mentioned, is about your age -- a "standard" non-rebreather mask was too big, leaving spaces where room air got in. Her face is fairly small. Honestly, I don't know whether masks come in different sizes, because a C'buster hero had given me a different kind of apparatus to try (more of a tube than a mask) and it turned out that worked great (and was preferable to the mask for my daughter because it's less confining). But you should check on this with someone who knows, presumably at your O2 supplier (I think many have respiratory therapists on staff). 5. We asked my daughter's doc to please fax in the prescription right away. She said she would. She didn't. We had a hard copy of the prescription that enabled us to call the O2 supplier, read the items, and get the ball started anyway. (Can you tell how very, very much I dislike my daughter's doctor? But (like you, I think) it was where she could get an appointment quickly.) 6. My daughter's O2 supplier, in a major metropolitan area, had practically none of the equipment my daughter needed. We had to push hard to get them to hunt it down and get it to her. I also faxed them the O2 articles, because they probably never had dealt with anyone with CH before, and we needed them to understand why this was urgent, and why she wasn't like their other patients, most of whom I imagine are folks with COPD.) 7. Don't assume that the regulator your father got you will fit on the tanks you get. There are two kinds of regulators. Just saying, insist that your supplier provide a regulator -- don't assume you already have one. All this sounds -- and seems -- ridiculous. How can suppliers be so ill-prepared? But ours was in every way, which leads me to 8. They guy who finally delivered my daughter's equipment brought the tanks into her apartment, handed me the regulator in a plastic bag, and, after telling me that all I needed to do was thread the regulator on, he left. When I screwed the regulator on and tightened it by hand, air leaked out all over the place. When I called the supplier, I was told I needed a special wrench to fully tighten the regulator (just a big wrench, but one my daughter didn't have). The delivery guy was supposed to have given me one, but he hadn't. That required a trip to a hardware store before the O2 was really set up. So, when they deliver your tanks, insist that they set them up, make sure they work, show you everything about using them, and let you try it. It's not complicated, but at least for me when I'm messing with equipment like that for the first time, I want to be sure I'm using it right. (And yet I still didn't insist that the delivery guy set it up and show me!) I hope you don't mind all this, and I hope your experience is much smoother. (Thank goodness this is the "shorter" version, eh?) Jerry

Jilly, I believe the O2 is very likely to change things very substantially for you -- giving you relief and showing you that it can be done. Some "breathing room," so to speak. I don't know all the technicalities of this, but it seems you will want a tank/regulator/mask for work in addition to whatever you're getting for home. Even if you have a typical nighttime pattern, you might find that shifting, and including some daytime incidents, as you bust or detox or whatever you decide to do. Others will please correct me if I'm wrong--I'm just speaking from my daughter's experience. The other thing I will say about her experience is that after night after night of misery, she literally starting laughing like crazy the first time she used O2, because the effects were so amazing. (No, she wasn't taking shrooms at the same time--this was just laughter of relief and joy.) It's all gonna get a lot better for you soon, I believe.

Thanks, BobB and FG. I had been discouraged reading some of the ONS results posted here at the site, but maybe there's long-term hope with this procedure. I listened to Dr. Goadsby talking about this procedure a while back (at http://www.reachmd.com/xmsegment.aspx?sid=4280). I seem to remember that it was there, or somewhere else, that he was saying that it's not even necessary to place the stimulation very close to the nerve: the mechanism of relief is somewhat mysterious. I'd rather have BOL or its ilk available, but it seems to me that any promising treatment gives hope. Jerry

Would it make any sense to announce this at the general board? (Not telling you how to run this great site, of course -- just saying that if I hadn't already intended to make a donation I wouldn't have seen this, but there might be some folks who would donate, even if they hadn't been intending to, if they realized their money would be doubled.) Jerry

I'm pretty sure the ones I got from www.psychoactiveherbs.com worked. Jerry

What they said. Or, WHAT WHAT!!! You are amazing! Jerry

BTW, my daughter is just about the same age you are. My heart goes out to you. Jerry

Jilly, I was looking up headache specialists in Philly when I accidentally posted the above. Here's a place that lists three names: http://www.healthcentral.com/migraine/headache-specialists/pennsylvania.html Might be a place to start. It says "Migraine and Headache Specialists," so I'd call to find out which have CH experience, and maybe even which will prescribe oxygen. Jerry

Jilly, you will get amazing help, support, and understanding here. I'm new, and it's my daughter who has the CH, but this place has changed both of our lives in a pretty short time. Bejeeber said it so well: >>Your willfully ignorant bonehead dork of a neurologist is unfortunately very typical of non headache specialist neurologists<< Here are two articles about high-flow O2 from serious medical journals that you can print out and show to him/her, if that would create a response of helpfulness: Journal of the American Medical Association: http://jama.ama-assn.org/content/302/22/2451.full.pdf+html Headache journal: http://www.docstoc.com/docs/62904898/US-Cluster-Headache-Oxygen-Survey-Early-View-Online-Publication-HEADACHE I've also heard very good things about Jefferson -- but unless you're lucky, it can take a while before they (or any headache clinic) can get you in, so maybe your current doc is the best place to start. You'll find many experiences similar to yours, including my daughter's: docs who just don't get it. You'd think that in dealing with such a painful condition they'd care, maybe read a little, maybe extend themselves a little, but most don't. So you need to educate them and fight for yourself. It took weeks for my daughter and I to get through the seemingly-simple process of getting a proper O2 prescription (high flow, big tanks, non-rebreather mask) and then getting the O2 supplier to actually supply what was needed. (As has been noted here, once you get the tanks, you can buy the rest of what you need online, for example at eBay.) Slamming RedBull has helped my kid when she catches an attack early (though it doesn't help everyone), and so far the oxygen is like a miracle. She's busting with RC seeds (you should also read the "ClusterBuster files" at the "Forum Jump" at the lower right corner of this page), which also is working quite wonderfully. Because all the meds they gave her were so awful, she was just enduring her two-and-three-hour ordeals every night . . . the good part of that was that she didn't have to detox for the required five days before starting. Just saying . . . I have seen first-hand, night after night, how terrible a CH attack is, and I think detoxing can be worth it, despite the horror. Also, here's a document from a Yale Medical School professor about the effectiveness of busting with seeds (he's talking about HBWR seeds, but the mechanism is the same for RC seeds, and they seem to be simpler to use): http://www.maps.org/research/sewell_2008_aha_lsa_poster.pdf ASK your questions. You'll get answers. The people here are, as I keep saying, amazing. Jerry

Ron, it's Dr. Sewell's blog. I don't think he's posted much there in a while. www.clusterattack.com Jerry

I am with you in any way. I have often myself what I would pay to end my daughter's headaches safely, permanently, and 100% legally, and the answer is . . . a whole lot, whatever the effect might be on my retirement savings. At the same time, I'm not sure that sending this letter individually would matter much . . . aren't there connections in the CH world, even at this small sample of it, to people who might care if they really understood? Gosh, I'm thinking of some people I know who might be able to help. Can this campaign be organized in some way? (Am I jumping the gun? Isn't Entheogen trying to move this forward, with a profit motive? www.entheogencorp.com Are they the right ones to contact with offers to help???) At his blog, the Yale Medical School guy who has done a lot to try to gain attention to the busting tactics supported here, wrote this: >>>My question to my readers is–why aren’t you out picketing? Cluster headache is four times as common as muscular dystrophy, I kid you not. Cluster headache is as common as multiple sclerosis. Yet Jerry’s kids are out there raising $60 million a year for muscular dystrophy research. $100 million a year is poured into MS research. The comparable figure for cluster headache research is… well, close to zero. But if you don’t care about cluster headache research, why should we?<<< Of course, many here, including my daughter, have found relief, thank God. But there's so much more to do. I'm ready, willing, and kind of able. Jerry