CHfather

Many giant smiles and best wishes here.

I guess I gotta ask, also, whether your cluster attacks are lasting longer than they used to (you mention a half hour in your post), and whether maybe now it's time to be contemplating O2?

Talking to my pal with the miracle anti-depressant med yesterday (I've mentioned him before), he was saying that the drug has been shown to treat what is known as "cortical spreading depression," which is believed by some to be the cause of migraines. (http://www.dana.org/Publications/Brainwork/Details.aspx?id=43724) Although a migraine/cluster connection might or might not apply here (since this seems to maybe be partly related to auras), he said he's hopeful that it might eventually treat CH as well as migraines. "Eventually" is a long way away, but it's another avenue that's being explored. (More about the anti-depressant within this piece, if you're interested: http://www.chicagomag.com/Chicago-Magazine/January-2015/Medical-Wonders/

Another candidate for the FusterCluckers! Great to hear your good news, Serg.

Best, and so many thanks, to everyone.

Our revered member 1961mom posted this on Facebook recently -- I'm just bringing it over here. http://7thspace.com/headlines/501518/cluster_headache_associated_with_a_clinically_non_functioning_pituitary_adenoma_a_case_report.html

Tranceplants will deliver quicker for additional $. www.iamshaman.com is in the Midwest, but I don't recall if they have a fast shipping option (just thinking about holiday slowdowns).

It's quite typical for attacks to return a few days after the early busts -- "early" might mean the first two, or the first three, or whatever it takes to finish the job. I mentioned in some thread recently (maybe one of yours) that on some rare occasions melatonin seems to worsen attacks. I'd consider cutting it out for a night and seeing whether anything changes. Or not -- just a thought.

 Well, it seems like you want to be at 400-500mg/day of calcium. In that regimen, Batch says >>This points out the importance of taking 400 to 500 mg/day magnesium and calcium.<< You say above that you took 400 calcium and 400 magnesium. Seems like you should keep doing that.  He does say later in the regimen that some people who have raised their D levels into the desired range but not had relief from their CH, have done well after dropping the calcium for a while. But I doubt that you're in the category. I guess the general point is that I'd stick as close as possible to the prescription. Batch is extremely helpful in response to PMs. He's a member here, but I don't know whether he gets PMs. Here's the link to PM him: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?action=viewprofile;username=143722353E560 He's much, much more active over at www.clusterheadaches.com, so you might be more likely to reach him with a PM from there. If you try to reach him and can't, I'll PM you his email address.

Well, the info is all here: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 To be honest, I haven't checked to see whether there have been any updates/revisions from Batch since this was issued in February. I will do that in the next few days -- but I think you'll do well to follow what's here. The list of core ingredients begins a ways down the page, under the subheading "Anti-Inflammatory Regimen Supplements." That subhead is a little ways under the bold major heading, "Basic and Complete Anti-inflammatory Regimen Treatment Protocol and Dosing Guide." In the tenth paragraph after the supplements are listed, it says "This regimen can be taken any time of the day, but it's best taken with the largest meal of the day. You can also take it with an 8oz glass of lemonade, limeade, orange juice or any fruit juice high in citric acid sweetened with a little honey." I know that Batch at one time said that he considers the fruit juice (and I guess the honey) to be an important part of the regimen, although it's not described that strongly here. It's good to read everything in this document, particularly about loading doses of more than 10,000IU (and about taking it separately from verapamil, but I don't think you're taking verap), but the core regimen is where you want to start.

Serg (referring in part to your other recent post), The sporadicness and unusual pattern do sound like slapbacks. They can be (as you seem to know) quite awful, but often they abate after the third bust. A few people have found that melatonin seems to make things worse for them. Sorry I can't help you make the call on that one, but you might consider skipping the melatonin for a night to see what happens. I'm sorry -- I should read back over your posts, where this question is probably answered, but . . . you have oxygen? you're trying energy shots/drinks?

You mean every time you've come to the site you get counted as a visitor? 'Cause that would explain pretty much everything. I probably check in at least 10 times a day, and I'll bet Jeebs does, too (as well as many others). And I can't help noticing that not one actual "guest" has noticed this thread and had anything to say about it.

Thank's, w'man. Interesting! I see alleyoop is the first person thanked at the end here, along with Bob Wold. The only other name I recognize there is Pinky. I wonder if the author (Peter May?) is possibly posting among us even now? [i see that the link doesn't carry forward above. Here it is again: https://www.clusterheadaches.com/cb/yabbfiles/Attachments/CH__Dreaming___Neurogenesis.pdf] Slightly related, this study released today about scientists finding a way to reduce memory loss caused by sleep deprivation. The kind of thing that gives me hope that the brain-centered aspects of CH might one day be understood and treated. http://www.newsworks.org/index.php/health-science/item/75644-penn-scientists-find-way-to-prevent-memory-loss-after-sleep-deprivation- (For those of you who doubted a study I reported earlier because it was based on mice -- you know who you are! > -- most brain studies in mice have very good carryover into humans. But of course the huge issues are whether anyone is interested and is financially able to carry out the next-level studies, and ultimately whether anyone sees enough potential financial gain to develop something commercially.)

I've asked this question before, but I'm asking again. I guess maybe it's principally a question for the moderators (who, by the way, are doing a great job!!!). The count at this moment shows that there have been 168 guests at the board today, and 25 members. Is there some misleading phenomenon behind those numbers, or have there really been more or less 165 people showing up as unregistered visitors to the site? If there are a lot of guests every day, are we serving them as well as we could? They can't read the two most informative areas of the board (Share Your Busting Stories and ClusterBuster Files). I guess they could just sign up if they really want to do that, but do they really get enough of a sense of what's going on here to want to sign up? Do they sign up and become members? Anyway, my larger questions are (1) whether we're serving guests as we well as we could, and (2) the BIG question about what "protection" is actually achieved by requiring membership in order to see SYBS and CB Files. I don't know the answer to this question. It feels to me like anyone who wanted to see the posts here for any "snooping" purposes could just register and then do that. I'm guessing we're not protecting young people from the site's contents, since we recently had a 16-year-old show up at SYBS, and I assume lying about one's age is easy enough to do in any event. I'm not saying that any policies should be changed, because I don't know enough about what the policies are or how they are implemented . . . As I said, my main question is just about whether guests are getting what they need when they come here, and, if not, what we could do to be more helpful.

I have really not sat down with her to think through what symptoms she had before she started getting troubling attacks. Unlike a lot of people, her CH came on gradually, with what she thought at first were just unusually painful headaches. It ramped up for her after some dental work unrelated to her "headaches" (that is, not, as with some people with CH, as an attempt to treat her "headaches," just a routine root canal). The first time she talked to me about her "headaches" was at least six or seven years after she had taken the lariam -- but she might have been having them before then. She doesn't really like to talk about her CH. Mostly, the lariam messed with her head psychologically. Compounded by the fact that she was in a very, very different culture and pretty much living by herself there. She was not given much warning about the psychological effects of lariam, so she blamed herself for the problems she was having. Yes, she has vivid dreams, but again, I can't say whether they foretell a CH cycle.

Clever! Others will have more to say about this, and THMH's questions are good ones, but might you consider switching to a different medicine (RC, for example, or LSD) since we have acknowledged often here that CH seems to sometimes, in some people, develop resistance to repeated applications of the same medicine.

Lariam is an anti-malaria drug. My daughter took it when she studied for a year in a third-world country. The effects on her were very, very bad.

Some other folks we've discussed in the past: Lisa Kudrow is the daughter or granddaughter (I never can get it straight) of cluster headache specialist Dr. Lee Kudrow, who himself has CH. The TV celebrity known as the "Millionaire Matchmaker," Patti Stanger, announced on Bravo TV that she has CH. A guy who once was a very good basketball player for the Bulls and other teams, Kendall Gill, was said to have CH. The late film director and producer Frank Capra had CH. Here's how he described one of his attacks: >>"Suddenly a huge phantom bird sank three talons of its angry claws deeply into my head and face and tried to lift me. No warnings, no preliminary signs. Just wham! A massive, killing pain came over my right eye. I clutched my head, stumbled out to the broad lawns and over the hedges to the deserted tennis courts and then, there in the dark, I moaned, I panted. Ballooned my cheeks, blew out short bursts of air, licked my hot lips, wiped tears that poured out of my right eye, and clawed at my head trying to uproot the fiendish talons from their iron grip. One racking hour later the talons let go. The paroxysm eased as suddenly as it had convulsed.<<

Maybe you want to start a new thread in the "Share Your Busting Stories" section about this. I see you've looked at MoxieGirl's guidance for preparing seeds. Can't go wrong following that advice, but let us know what you're planning to do.

http://cep.sagepub.com/content/early/2014/11/13/0333102414557839.abstract Cluster headache and the hypocretin receptor 2 reconsidered: A genetic association study and meta-analysis; Weller C, Wilbrink L, Houwing-Duistermaat J, Koelewijn S, Vijfhuizen L, Haan J, Ferrari M, Terwindt G, van den Maagdenberg A, de Vries B; Cephalalgia (Nov 2014) Â Â BACKGROUND Cluster headache is a severe neurological disorder with a complex genetic background. A missense single nucleotide polymorphism (rs2653349; p.Ile308Val) in the HCRTR2 gene that encodes the hypocretin receptor 2 is the only genetic factor that is reported to be associated with cluster headache in different studies. However, as there are conflicting results between studies, we re-evaluated its role in cluster headache. METHODS We performed a genetic association analysis for rs2653349 in our large Leiden University Cluster headache Analysis (LUCA) program study population. Systematic selection of the literature yielded three additional studies comprising five study populations, which were included in our meta-analysis. Data were extracted according to predefined criteria. RESULTS A total of 575 cluster headache patients from our LUCA study and 874 controls were genotyped for HCRTR2 SNP rs2653349 but no significant association with cluster headache was found (odds ratio 0.91 (95% confidence intervals 0.75-1.10), p[ch8201]=[ch8201]0.319). In contrast, the meta-analysis that included in total 1167 cluster headache cases and 1618 controls from the six study populations, which were part of four different studies, showed association of the single nucleotide polymorphism with cluster headache (random effect odds ratio 0.69 (95% confidence intervals 0.53-0.90), p[ch8201]=[ch8201]0.006). The association became weaker, as the odds ratio increased to 0.80, when the meta-analysis was repeated without the initial single South European study with the largest effect size. CONCLUSIONS Although we did not find evidence for association of rs2653349 in our LUCA study, which is the largest investigated study population thus far, our meta-analysis provides genetic evidence for a role of HCRTR2 in cluster headache. Regardless, we feel that the association should be interpreted with caution as meta-analyses with individual populations that have limited power have diminished validity.<<<

Hope it helps. As I've mentioned, she should also keep her eye on this product, which should become available next year if all goes well, or at the latest in 2016. (Of course, when it becomes commercial it will have a different name.) http://www.nimh.nih.gov/news/science-news/2013/ketamine-cousin-rapidly-lifts-depression-without-side-effects.shtml I have said that I have some (possibly naive) high hopes for this regarding CH treatment, since it's a side-effect-free cousin of ketamine. As I've also mentioned, I've been playing golf many times each year for nearly 20 years with the guy who invented this (Joe Moskal). It's frustrating to me that I can't get him to slip me a few leftover pills to test out for "off-label" use for CH. :-/

From two days ago. Nothing new here, really, but getting more out into the mainstream never can hurt. http://www.nytimes.com/2014/11/30/opinion/sunday/can-mushrooms-treat-depression.html Last paragraphs: >> I experienced a number of small epiphanies — self-realizations actually — but one in particular remained with me. As the drug wore off, I went indoors to take a hot bath. For a moment I thought that might not be a good idea, as bath time is when women in middle age can be very self-critical and unforgiving, and I didn’t want the sight of my waistline to veer me into a bad trip. But while in the tub I envisioned my body as a ship that was taking me through life, and that made it beautiful. I stopped feeling guilty about growing older and regretful about losing my looks. Instead, I felt overwhelming gratitude. It was a tremendous relief that I still feel. Psilocybin could have enormous impact on the lives of many Americans. But at the moment, its Schedule 1 status makes it a difficult drug to study, and only a handful of scientists are engaged in its research. This needs to change. Rescheduling psilocybin won’t make it legal; it will make it easier for research to be conducted, leading to more scientists exploring its potential, while reducing investor concern and allowing for compassionate use provisions. Don’t get me wrong: I’m not suggesting 16-year-olds take magic mushrooms. I’m not suggesting they be used to party at all. What I am advocating for is a mind open to the possibilities of their use to help people in need. Because illiberality doesn’t cure disease; curiosity does.<<<

jimmys, I hope your bust tomorrow pays off for you. Can't think of much that's new in the past year. There's this thread about a new tryptamine option: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1406637555 And I guess we've learned that maybe some things we thought might block busting actually might not. Verapamil seems less counterproductive than once was thought (this discussion has probably been going on for more than a year). Questions have been asked about some other pharmas, but I don't think we're ready to say they don't block busting. I'm probably missing something, but I can't think of more.

In Rozen's study, 49 percent were righties and 44 percent lefties. 3 percent both. I don't know about the other 4 percent. In an earlier, smaller study, it was 60 right, 38 left, and 2 both. When you wrote "righties," my first thought was about handedness, As you probably know, there was a time just a couple of decades ago when it was believed that CH and migraine were proportionally more common among left-handers than right-handers. I think that was shown not to be true (just as it wasn't true, as some believed, that people with hazel eyes were more prone to CH).

spiny, here's an article that answers your question -- and more. http://www.nature.com/news/the-split-brain-a-tale-of-two-halves-1.10213 My favorite part, not directly related to split-brain theory, is about the "interpreter": >>Gazzaniga developed what he calls the interpreter theory to explain why people — including split-brain patients — have a unified sense of self and mental life. It grew out of tasks in which he asked a split-brain person to explain in words, which uses the left hemisphere, an action that had been directed to and carried out only by the right one. “The left hemisphere made up a post hoc answer that fit the situation.” In one of Gazzaniga's favourite examples, he flashed the word 'smile' to a patient's right hemisphere and the word 'face' to the left hemisphere, and asked the patient to draw what he'd seen. “His right hand drew a smiling face,” Gazzaniga recalled. “'Why did you do that?' I asked. He said, 'What do you want, a sad face? Who wants a sad face around?'.” The left-brain interpreter, Gazzaniga says, is what everyone uses to seek explanations for events, triage the barrage of incoming information and construct narratives that help to make sense of the world.<<