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Posts posted by CHfather

  1. 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:

  2. 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).


  3. 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.

  4. 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. 

  5. VA,

    Three and a half weeks before you can start getting O2!?! (I say "start" because then you have to wait for actual delivery.) It really is time for somebody--you, your gal, your mother, a friend . . . somebody--to get a lot more aggressive about this.  Call every day to see if there's an opening; try another neuro; try a headache center; push those EMT relatives to come through; get the welding stuff; beg; borrow . . .   I don't know . . . if you go to an emergency room, might they prescribe it?

    Also -- Maybe you have good reason for 40 seeds, but I think some folks would recommend going higher.

  6. Beautiful job, Chris!!!!  The recently-updated ClusterBusters links page (http://www.clusterbusters.com/links1.htm) seems to contain some material that's not presently in your InfoBase. Guess I could add those links myself, but I feel like right now this is your space, and you might not want it cluttered up by others.

    I just have one suggestion. I'm constantly taken aback by how many CH sufferers don't have proper oxygen setups. And so I'm just wondering whether there's a way to highlight oxygen (maybe, for example, by having it as a separate item in your infobase list)?

  7. VA, another compelling article to take/fax/email to your doc would be http://jama.ama-assn.org/content/302/22/2451.full.  It seemed to help with my daughter's doctor when we shoved both articles in the doctor's face (politely, but insistently).  I don't know why they won't give it to you. One thing it says in this article is >>>The great advantage of oxygen is that it has no established adverse effects<<<

    Are your hopes for getting O2 from other sources fading (I was thinking today was gonna be the day)?

  8. Completely agree, T. "Contributors" was probably a bad word choice by me.  I guess I just wanted clarity from Dr. J -- which I am still hoping to receive -- about what he meant by >>Even better: help us find investors so we can move this along even faster.<<  I mean, I could find potential investors and I think most of us could ("potential" investors because they'd make their decisions on a number of bases, including hard-headed rationality and possibly sentimentality--like investors in the Green Bay Packers do).  But I'm not gonna waste my time sending my cousin Harry to invest if only Bill Gates will do. I actually know some people who know some rich people, and I might be willing to pursue that, but "help us find investors" is not clear enough for me. (Incidentally, I have made this offer to someone closely connected to Entheogen and I was kindly told, in essence, that my help was not needed. So I was surprised by Dr J's statement. I don't know if I could help or not, but I'd damn well try.)

    In the back of my mind always is something that Dr. Sewell wrote at his blog. I posted this once before and it seemed to irritate some folks, but like I say, it has stuck with me. He wrote: >>>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?<<<

    He's not talking about the same kind of activity as funding a for-profit venture, but IF BOL is viable and IF Entheogen is the best way to get it, I want to know what I can do, and what we can do, in some kind of actionable terms.  I really don't want to go to my grave thinking I didn't do all I could for my daughter's future -- and the rest of you have touched me pretty hard, too.


  9. Dr. J,

    My best golf buddy is a neuroscientist who developed a pill that works great for a bunch of things, as demonstrated in Phase I clinical trials.  He's raised many, many millions, and now needs 6 million more. It's taken him close to 10 years.  It seems he's always on the cusp of having it happen, but then things slide back and then he's on the cusp of either giving it up or breaking through.

    I mention all this to say I guess I understand some of what Entheogen is probably going through.  But since many of us are so anxious about BOL, can you say anything more about how much more $ is needed and how it's being sought?  More specifically, you say >>>Even better: help us find investors so we can move this along even faster. <<<  Are we talking about multimillion-dollar investors?  Is there any way that a large number of CH contributors, their friends and associates, could make a dent in what you need?



  10. Les, since Stephen Jay Gould is a hero of mine, it gets my back up to see him referred to as "full of shit." So let me say that he is talking about something else (or, was talking about something else, since he died in 2002 and this quote comes from 1997) than what you accuse him of saying.  His quote refers to the "non-overlapping magesteria, science and religion." The "magesterium" is a particularized term, referring to the authority of the church (particularly the Catholic church, where the term is quite important) to teach true doctrine as derived from divine guidance, and Gould is extending that term to refer the authority of science to teach "truths" that it has discovered.  What he is saying in the full 1997 article--which you can read here http://www.stephenjaygould.org/library/gould_noma.html -- is that these magesteria ought not to overlap ("The lack of conflict between science and religion arises from a lack of overlap between their respective domains of professional expertise—science in the empirical constitution of the universe, and religion in the search for proper ethical values and the spiritual meaning of our lives. The attainment of wisdom in a full life requires extensive attention to both domains—for a great book tells us that the truth can make us free and that we will live in optimal harmony with our fellows when we learn to do justly, love mercy, and walk humbly."),  but there is no well-defined "no-man's land" between them. He's looking particularly at the Church's positions on evolution.  He's talking about religion and science (primarily about a religion and science), which is quite different, I think, from what you're talking about, "spirituality and science."


  11. I had meant to include Dr. Sewell's blog and the website www.clusterattacks.com, but I forgot.  I hope others will chime in, too, so this resource is as useful as possible. I was glad to see in his post today that ThatHurts/Jeff got some benefit from it.


  12. This is from clusterattacks.com, from what I think is Dr. Sewell's blog.  http://www.clusterattack.com/blog/zapping-the-sphenopalatine-ganglion/  (There's an illustration there showing this ganglion.)

    Zapping the Sphenopalatine Ganglion

    Narouze (2010) Role of Sphenopalatine Ganglion Neuroablation in the Management of Cluster Headache

    Sick of taking pills or sucking down oxygen? From the Cleveland Clinic comes this review of one of the less invasive forms of surgery for cluster headache—sphenopalatine ablation.

    Cluster attacks originate in a small part of the brain in the center of the head called the hypothalamus, which controls (among other things) sleep, appetite, the autonomic nervous system, and the levels of various hormones. The autonomic nervous system is divided into two branches—the sympathetic (fight or flight) and the parasympathetic (rest and digest), both of which pass through the sphenopalatine ganglion, which is located at the back of the nose on both sides. Parasympathetic neurons synapse there, then run along with the maxillary nerve to the cheek and face. Sympathetic fibers pass through without synapsing and mainly end up in the walls of blood vessels. The sphenopalatine ganglion can be anaesthetized with drugs such as cocaine or lidocaine.

    It can also be destroyed by heating it to 80 C for a minute with radiofrequency ablation. What happens to cluster headache when we do that?

    Dr. Sanders in 1997 reported the following:

    Episodic cluster headache (n=56): 60.7% complete relief

    Chronic cluster headache (n=10): 30% complete relief

    More recently, Dr. Narouze (who authored this article) had better luck. He performed sphenopalatine ablation on 15 chronic cluster headache patients then followed them for a    year and a half. Three (20%) experienced complete relief and were able to stop all medications. Seven (46.7%) converted from chronic cluster headache to episodic. Three (20%) noticed no change for a few weeks, then gradual improvement in the intensity and frequency of their attacks. Two (13%) had complete relief of their cluster headache—which unfortunately then came back on the other side. The only major complication of the procedure seems to be nosebleed.

    What does this mean for medication-refractory chronic cluster headache patients? If you are considering surgery to treat your disease, then this has the advantage of being fairly minor compared to drilling a hole down to your hypothalamus. I am always skeptical of these peripheral procedures, however, because cluster headache is a central disorder. I have seen too many patients who had destructive surgery on one side of their head, only to have the cluster attacks squirt out on the other side instead—as happened to two patients in this series. As with any treatment, the risks and benefits need to be carefully weighed, and in this notoriously difficult crowd of refractory chronic cluster headache patients, Dr. Narouze seems to have obtained good results.

  13. Marina, you wrote >>>Oxygen didn't work for him.<<<   I know you came here for help, not argument, but six months ago I was telling people that oxygen didn't work for my daughter.  Then it turned out that her doctor-prescribed oxygen set-up was all wrong. The prescription her doctor wrote would not have helped anyone with CH.  Once she got a proper set-up, it worked like the miracle that it is for so many people.  So I'm just asking you to be sure that your son gave oxygen a proper trial: high flow and a non-rebreather mask or tube (not cannula).  I have read here that sometimes it might take two 15-minute periods, with 10 minutes in between, to effectively abort some cluster attacks for some people. As others have said, the oxygen information pages here will tell you all you need to know.

    Again, my heart goes out to you--it's a terrible, heartbreaking thing for a parent to endure--and I don't mean to be argumentative. I just want to be sure you're not missing out on a potential life-saver. 

  14. Of course, your doc might have some good reason to keep the O2 away from you, so I'm not offering medical advice. But as you might already have read, you can set up an O2 system on your own by getting O2 canisters from a welding supply place and getting a mask and regulator from any of a number of sources.  I should say that I'm not a CH sufferer myself, but the father of one, so my advice should be taken more lightly than what you get from others, but it's hard for me to imagine detoxing without O2 (although my daughter went six years taking virtually nothing, not even O2, for her CH and somehow, barely, survived -- so I guess it can be done).  You know all about using RedBull/caffeine-taurine drinks, I imagine; and maybe you've read the thread about licorice root (titled "A potential new option") here at the General Board.

    Read, read, read, and ask, ask, ask -- the people here are, as someone recently said, awesome.

  15. Thanks for pointing that out, veggies -- very thoughtful of you.  I must say that for those who are obsessively interested in whatever might be happening with CH understanding and treatments (as I am), the whole document from which cluster posted this contains a bunch of pretty interesting abstracts. Nothing nearly as dramatic as what cluster posted -- I guess I just like to see anything that might promise some future possibilities.  It's at http://www.springerlink.com/content/t1r43t7175100007/fulltext.pdf, and it can be searched by typing the word cluster into the search bar.

  16. 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.


  17. 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 couldnÂ’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.

  18. 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!

  19. 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.