CHfather

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Not to mention  [smiley=vrolijk_26.gif], [smiley=dankk2.gif], and [smiley=tekst-toppie.gif]

Beautiful!

Jeebs dancing the habenula

Posting this mostly because there's been interest expressed in some brain science stuff here. This isn't directly related to CH, or at least to CH causes and treatments (though I suppose maybe it is). So, here's a study that shows a tiny brain part directly involved in anticipating bad events -- the habenula. (Sounds so cute, doesn't it?) https://www.ucl.ac.uk/news/news-articles/0714/290714-Bit-of-brain-signals-how-bad/ The two parts that interested me regarding CH were: >>“Fascinatingly, people were slower to press the button when the picture was associated with getting shocked, even though their response had no bearing on the outcome.” says lead author Dr Rebecca Lawson, also at the UCL Institute of Cognitive Neuroscience. “Furthermore, the slower people responded, the more reliably their habenula tracked associations with shocks. This demonstrates a crucial link between the habenula and motivated behaviour, which may be the result of dopamine suppression.”<< I don't know -- I was just thinking of how often people with CH wait even when they know they probably shouldn't -- hesitating to get on O2 at the first sign of an attack, or hesitating to bust at the first sign of a cycle, for example. >>“Other work shows that ketamine, which has profound and immediate benefits in patients who failed to respond to standard antidepressant medication, specifically dampens down habenula activity,” says Dr Roiser. “Therefore, understanding the habenula could help us to develop better treatments for treatment-resistant depression.”<< Just thinking here about the positive effects that some people who are taking ketamine have reported related to their mood. . . . Like I say, not a huge amount here, but the thing in itself is pretty interesting, I thought.

I'm pretty sure you can drop or very substantially lower the melatonin when you're out of cycle. 30 mg is a lot. Most folks maintain the D3 thing all the time. Blood tests will tell you when you can drop the D3 itself down to 10,000IU. You're not taking the Omega-3, either, or all the recommended minerals? There are many people who will say that the full D3 regimen seems to have kept them PF, or helped keep them PF (along with preventive busting -- or not, in some cases) for very extended periods.

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.