CHfather

very sorry to read this, bundy. CH is tough enough without adding heartache to it. can i ask how you're treating your CH now? maybe someone here will have some ideas that you haven't tried yet.

Thanks to your inspiration, Jeff, I made a small edit (adding a link to Dan's part of the Nat Geo special), and I'll also try to stay on top of this. Thanks, Tony, for pointing this out.

Four 'cudas! THANKS!!!

In another thread,  During her last cycle, it seemed like melatonin was also a trigger for my daughter (not an issue when she's out of cycle). I'm wondering -- since we often recommend melatonin as a possible preventive -- whether anyone else has the sense that melatonin is or might be a trigger for them?

The website (Medscape) serves a whole lot of doctors and other medical professionals. This link is to a special year-end report on psychedelics: http://www.medscape.com/viewcollection/32994   You have to register, but it's free. At the home page, there's also a report of FDA approval for a device to treat certain kinds of migraine pain. I would imagine that it might work with CH, too.

Love it. Kinda like these guys?? :) :) :)

Nice!

Bryce, Following up on what Jeebs said . . . lots of people have eating problems during their cluster periods (I think that's what you probably mean -- when he's in a CH cycle, as opposed to when he's experiencing a single attack or "episode"). It's a function of the stress and distress, along with other things.  So it would be good if he could be managing the pain better in some way. Busting, which Jeebs pointed you to, is one very good way to end a cycle -- the best way, many of us would say. But, does your dad have the basics -- oxygen plus maybe some other kind of abortive (Imitrex) or preventive (Verapamil, for example)? Is he trying any of the other abortive/preventive strategies that help many people, such as the vitamin D3 regimen, or licorice root, or melatonin, or kudzu??? In the meantime, if his diet is really crummy, he should probably be taking some kind of serious supplement, like Ensure, to get the stuff he needs into his system. If you -- or, even better, he -- will tell us more about how he's treating his CH, we might be able to deal with the pain and stress that are probably causing at least some of his in-cycle eating issues. (Coming on here and talking to folks who understand what he's going through can be pretty good for stress in itself.)

Thanks, Bill! These lists are very helpful.

Speaking of BOL, I feeling depressed because of what I thought I heard Dr. Halpern say at the conference about Entheogen. What I thought I heard him saying was that if Entheogen didn't enlist some big-money support by the end of this year, the patent for BOL would revert back to the universities from which Entheogen was licensing the patent (and he was pessimistic about how quickly the university patent-holders would act to develop BOL). I might have heard that wrong, and I welcome any information that anyone has about the current status of BOL.

I have no doubt at all that you will be.

Happy for you, Vickle! Hoping for great results.

most of the common ones do. 5-hour energy, yes. 6-hour power -- looks to me like some varieties do, some don't. check the labels.

Tony Only just reported that he's had success aborting with licorice root. https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1385746613/7#7 As he says, you gotta be kinda careful: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1322547210

On this video -- -- starting at about 5:30, there's a potentially valuable suggestion about using the breathing tube with 25 lpm, and some suggestions for breathing strategies. A well-known CH expert also suggests looking toward your feet while you do the O2 (and some people say that helps).

please read the article about oxygen that tony linked to (you can also find it under the MENU tab on the left side of this page) and get back to your doctor and insist on oxygen. you can also create your own oxygen system using welding oxygen. oxygen is essential for aborting CH attacks. (also, most people consider energy drinks more effective than just coffee for aborting.)

Not much to add to Tony's great post . . . just a few additional things: (Here just reinforcing Tony). Your doctors should have prescribed oxygen. You should insist on it. It's treatment #1 for anyone with CH. Drinking an energy drink (such as Monster or Redbull), energy shot (such as 5-Hour Energy), or a strong cup of coffee at the first sign of an attack can reduce the severity of an attack or sometimes even abort one. Some people find that melatonin at bedtime helps. Many start at 9-12 mg. and work up, even as high as 20 mg or more. The pharmaceutical medication called Imitrex in the US (injectable sumatriptan) helps a lot of people abort attacks. As Tony said, a lot of the prescription meds can have bad side effects with long-term use, but you're not in a position yet to be busting, so at least for now you might try some prescription stuff. Prednisone tapers work well for some people, and verapamil also works for some. (Don't know what you have already tried.) When Tony describes RC seeds as the "featherweight" form of busting, I don't believe he's describing its effectiveness, but its psychedelic effects. RC seeds are a very effective way to bust cluster cycles -- but they can be taken with very little psychedelic effects. (I have a vague memory, however, that it might be illegal to import RC seeds into Australia. If you're interested, we can check.) So sorry that you're dealing with this now . . . oxygen plus busting will help a lot in the long run; maybe some of these other things will help soon.

Sandy, it's generally believed the RC seeds will lose their potency, no matter how they are kept, after six months or at most a year. Maybe your experience will contradict that belief.

>>>I guess DHS will report to the courts and shit will hit the fan I don't think I could survive jail With CH's Maybe I'll be one of the first through the courts. <<< b'up, Don't be a hero, please. Job #1 for you is to be safe. If some handful of people don't learn about busting, that's okay; you being under some kind of legal or personal threat is not okay. For heaven's sake, check with a lawyer. I have checked with a bunch of lawyer friends of mine, and the consensus is that while theoretically you could be subject to prosecution under some circumstances, it is very very very unlikely that you will be. Prosecutors are swamped with cases that are actually important and that would not have as sympathetic a defendant as you, and that wouldn't pit family members against each other. They say that very few prosecutors would take on a case like this, and their guess is that even if one did, it'd be settled without jail time. I stress that this is just what I have heard -- you need to find out for yourself -- and don't do anything that might make you more vulnerable. I tend to agree with Ricardo that maybe this thread ought to be deleted (and I also think that maybe you might want to remove your location from where it appears under your handle here -- I think that will remove it from all your posts).

This is terrific -- thanks to all!!!!

Maxalt is a triptan (rizatriptan). Triptans can help as abortives, though not as preventives. They work when they're injected; almost never work in oral form. Imitrex is the most common injectable form. (Triptans interfere with busting.) It seems pretty clear that your neurologist doesn't know much about CH. Maybe you'll want to try a headache center? Someone just posted at another thread here about how badly topiramate had messed him up. Thought of you -- but now I can't locate it. If busting works for you, it -- plus O2 (and D3 probably can't hurt) -- is the best way to go. No side effects, probably not even any "tripping," if you use RC. Modified 11/14: Ah, here it is: >>. . . the 200mg of topirimate my neuro had me on daily that turned me into a useless almost drooling bag of bones. (I am down to 100mg daily at the moment) . . . << https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1376797890/2#2

Yes, read that O2 material and insist on getting a prescription from your doctor. It will make a big difference. At the first sign of an attack, some people quickly drink an energy drink or strong cup of coffee. It can significantly lessen the severity of an attack. Depending on the reliability of your shroom supply, you might consider rivea corymbosa (RC) seeds as an alternative. Legal to purchase and possess, and easy to order, they're quite effective for many people and they have less psychedelic effects than shrooms. I guess many or most people here would tell you that shrooms or LSD are the preferred treatments if you can get them, but as I say, seeds have worked very well for lots of people. If you're interested in this alternative, read this file -- https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974 -- and then get back to us. (In general, you should read the numbered files in the "ClusterBuster Files" section of this board.) Many people get a lot of preventive benefit from the vitamin D3 protocol, which you can read about here: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804  HA! Most folks here would call BS on that (depending on what "a lot" means -- more than none, probably). Funny, when I saw your handle I thought of the Anvil Chorus, which was right around 1848. Not a bad accompaniment to a CH documentary.

Welcome, Anv. It's great that you're getting relief. Those anti-convulsants that you mention (or some of them, at least) are sometimes prescribed for CH, and they can be somewhat effective, although as you say, the side effects can be horrible. Since you're not really asking any questions here, and you're not certain that you have CH, I'll just (a) wonder a little why you might want to wait a few weeks to dose again (I can think of some possible reasons, but I can also think of reasons not to wait that long), and also ( wonder whether you have oxygen to abort your CH attacks. If you have CH and are still getting attacks, oxygen can be very helpful. If you're not familiar with O2 to treat CH attacks, you can read more at the oxygen page under the black and white MENU tab on the left side of the page. Please keep us informed of developments in your situation.

Hey, Keith -- good to hear from you, glad you're doing well.

Welcome, son! Your mom is a great and tireless advocate for you. That's one heck of a gift, for your birthday and beyond, and there are lots and lots of people here rooting for you and ready to help you.