CHfather

Welcome, Yan! Sorry for what you are going through, and hoping we can help you. That's a very tough thing, going from episodic to what seems more like chronic. I can assure you that most people here are not "into drugs," and most are able to arrange their busting strategies so there is little or no psychedelic effect--only a cessation of cluster attacks. And many are much older than you: "Hipshot" (Dan), for example, is about 97.  I think it's safe to say that seeds, such as rivea corymbosa seeds (RC), can almost always be used with virtually no psychedelic effects. You can learn more about how to use seeds here http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974 and also in other files by TommyD in the "Clusterbuster files" section of this board. Ask questions -- plenty of very kind and knowledgeable folks here will help answer them. I suppose your biggest challenge will be "detoxing" from your meds, some of which interfere with the effectiveness of "busting" with psychedelics. So let's be sure you're giving the vitamin D3 regimen it's best shot. You say "maybe the vitamin D I'm using is not the right one." Is it D3 -- that's what the regimen calls for. You can find it almost anyplace, but here's a list provided by "Batch" over at ch.com: >>>>>>>>>>>>I buy these items at Costco. Sam's Club has some of these vitamins and minerals under Member's Mark label. You can buy the Kirkland brand over the Internet from Amazon or go to Puritan's Pride web site. They carry the same items. Costco has the best deal on the 5,000 IU vitamin D3 softgels: $6.99 after $2 OFF Trunature® Vitamin D3 5000 IU Extra-strength 500 Softgels < 3 cents/day 20 cents/week Sam's Club: Member's Mark® Vitamin D-3 5000 IU - 400 softgels $10.68 < 6 cents/day, <38 cents/week Puritan's Pride SUNVITE™ MAXIMUM STRENGTH VITAMIN D (D-3) 5000 IU: 500 softgels for $14 <6 cents/day, <40 cents/week<<<<< And of course the D3 protocol also calls for calcium citrate, Omega-3 fish oil, and maybe a couple of glasses of lemonade or limeade each day. I trust you've also done that. Also, in terms of being able to detox, there are some oxygen strategies, sometimes referred to as "power using," that seem to work quicker and more lastingly than the 15lpm flow rate and the standard non-rebreather mask. If you're interested, ask about these and someone will advise you. Even at 15, many people say that the O2ptimask is more effective: http://www.clusterheadaches.com/khxc/index.php?app=ccp0&ns=catshow&ref=LifeGas As I say -- ask questions. In one way or another, we're all in this together, we all learn from each other, and we all care about each other.

enjoy, wade, and congratulations for taking control. some people suggest a bust between cycles, maybe three months from now if you're on the fairly typical twice-a-year schedule, and also to be sure to bust at the first sign of a new cycle (some people here have regretted waiting too long). i would also recommend that you do the maintenance-level D3 program: 5 IU of D3; couple of calcium citrate tablets; and 2-4 mg of fish oil. probably can't hurt, and lots of evidence that it helps.

Jeff/Lynn, a relatively easy solution to the falling-asleep-and-still-inhaling-O2 problem is to cut the strap off the back of your mask and hold it on with your hand while you're using it.

I hope you're not going to wait too long to get oxygen--can't be repeated often enough that it's a complete game-changer for most people with CH.

Lynn, I notice that you asked before about whether shrooms are legal. No. Unlike RC seeds, shrooms are illegal to buy, sell, or possess. There's a lot of frustration and anger here about that, properly so, but it's the case.

You can order a new regulator from eBay for about $25: http://shop.ebay.com/i.html?_nkw=regulator+15lpm&_sacat=0&_odkw=non-rebreather+mask&_osacat=0&_trksid=p3286.c0.m270.l1313 And a non-rebreather mask for about $15: http://shop.ebay.com/i.html?_nkw=non-rebreather+mask&_sacat=0&_odkw=nonrebreather+mask&_osacat=0&_trksid=p3286.c0.m270.l1313 Maybe there are lower prices elsewhere, but probably not significantly lower. THERE ARE DIFFERENT TYPES OF REGULATORS FOR DIFFERENT TYPES OF OXYGEN TANKS (basically, two different types), so you have to know what type of tank you are getting before you buy your regulator. You want at least one large tank, and maybe one smaller one for portability (the big ones are heavy). You might go through a lot of O2, so you have to weigh the trade-off between what you're paying (one tank or two, plus the smaller one) and not being stuck without oxygen. Also, while the basic non-rebreather mask will probably work for you, many people think the O2ptimask is well worth the higher cost ($27.50). You can also buy these in different sizes to be sure it fits your face properly (not sure if size options are available at eBay). http://www.clusterheadaches.com/khxc/ Â

Another of your usual great reminders, Ting. Thank you. Has your daughter returned yet, and seen her new room? And I have the same problem with uploading images--would love to hear any advice about that.

Thanks, Kyle!

Seeds are relatively inexpensive. You'd want to buy 200, I think, which would probably be about $25, plus shipping. I'd recommend getting them fast and (unless others suggest otherwise because of the Zoloft) trying them quickly. As you have probably read, seeds are legal to buy and possess (drinking the LSA mix is the unlawful part). You can order them at these places, among others: http://www.ethnobotanicals.com http://www.iamshaman.com www.psychoactiveherbs.com www.shamansgarden.com

Lynn, you want to get the oxygen ASAP. I don't know what the cost difference without insurance would be between getting a prescription and getting O2 from an oxygen supplier versus creating your own system with welding oxygen. This could make a huge difference. Everyone here will tell you it's an absolute must -- I'm shocked that it's never been prescribed to you (though I shouldn't be; it happens so often; but it's still shocking to me every time). Sorry the D3 hasn't worked for you. You could try the licorice root approach that's also helped a lot of people, but I'm not sure how it would interact with your Zoloft and your blood pressure issue. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068 You might find different opinions here about seeds vs. shrooms. They both work. Some very well-informed people say that LSA (the ingredient in seeds) is actually more effective than psilocybin. The problem is that it's hard to precisely measure the amount of LSA you're getting from seeds, because their strength varies--but if you take enough, that's not really a problem. RC Seeds plus oxygen saved my daughter's life, and she was very close to being in the place you are. You are less likely to experience psychedelic effects with seeds than with shrooms. Others will add more opinions, and some will tell you to try one or the other even as you are cutting down from the Zoloft (very carefully, as everyone has said). I don't have any experience with that. Things could get a lot better for you fast with oxygen and busting. My daughter had gone so long with so many misdiagnoses and mistreatments and failed treatments that she was not willing to get her hopes up about either O2 or busting, so she went through cycle after cycle just having all the pain and all the distress. Once we got her set up with the oxygen and busting, everything changed. No reason that can't happen for you, too.

Lynn, I'm so sorry for what you are going through. It's not clear to me whether you have a diagnosis of cluster headaches, or have concluded that CH is what you have. Certainly the pain is terrible enough to be CH, but do you have other typical CH symptoms (intense "drilling" red-hot-poker pain around the eye or temple; eye symptoms such as drooping eyelid; running nose or tearing from the eyes; etc? http://en.wikipedia.org/wiki/Cluster_headaches I'm not saying that seeds are not worth trying regardless of what you have, since pharma meds aren't helping you, but some approaches, such as oxygen, are first-line treatments for CH but not particularly effective for other kinds of headaches. You can get an oxygen set-up without a prescription, using welding-oxygen tanks and other equipment you can buy separately. Even without insurance, it's not hugely costly and is a lifesaver for aborting CH attacks. You might want to look at this file: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790 You might also begin the simple, inexpensive vitamin D3 protocol that has helped many, many people with CH quickly and also lastingly (again, I can't say how it might help other kinds of headaches, but it's basically safe and, I would think, worth trying). Take about 10,000 international units per day of vitamin D3, taken with food; 2 or 3 calcium citrate tablets per day, with or without food (ideally, these tablets should also contain magnesium and zinc); and 3,000-5,000 mg per day of Omega 3 fish oil, with food. That's it, except that many people find that a glass or two of lemonade or limeade per day with meals increases the effectiveness. Many people start getting significant relief from CH within a day or two. The levels I listed above are the "default" levels--you might wish to adjust according to your own tolerance. These are not "megadoses"--all are within standard recommended daily allowances except the D3, which is high but not inordinately so. To read a great deal more about the D3 regimen, you could wade through the following thread: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/0 You mention that you've read the FAQ about LSA. Have you also looked at the very valuable files in the "Clusterbuster files" section of this board, particularly those by tommyd, detailing ins and outs of busting principles and methodology? Here's the one on seeds, but there are several others there that you might want to look at: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974 Keep us informed, please, and we'll keep doing our best to help you.

Chuck, here are some places that folks here have used and recommended. I can't really speak for their storage policies. We've used a few of them and they worked fine. www.ethnobotanicals.com www.iamshaman.com www.psychoactiveherbs.com www.shamansgarden.com www.tranceplants.net (Canada)

Thanks, Anne-Marie!

Rob, this is great news. So glad the licorice is working for you. Note that Les favors cutting down the amounts you are taking over a fairly short time period (because of its effects on blood pressure, as I recall). I don't know whether you want or need to follow that advice. Here's a summary of what he said: >>>For preventive purposes, Genser began by taking 2 milliliters of licorice tincture (about thirty drops) three times per day. He advised, “You needn’t count drops or anything. Two squeezes of the dropper should be a little over 30 drops, about 2 milliliters." After two weeks, he cut it to 1 milliliter three times a day. He stated that his aim was to be “completely off it” after three weeks.<<< http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068 Keep up the great work. We're all happy for you.

Agreed! Very good to see Denny again.

Here's something Ricardo posted recently at another thread about seeds no longer working. Can't vouch for it myself . . . >>>The real thing I want to throw out there though, is something I've said over and over and kinda surprised no one else seems to have tried it. Once you seem to be getting tolerance to the seeds, get a new batch, grind em up and soak them in cold peppermint tea for a few hours. The peppermint tea is high in acetaldehyde, and according to our good friend (and my avatar) Albert Hoffman, the combination of LSA and acetaldehyde will make LSH--Which he said at low doses is indistinguishable from LSD. Higher doses tend to give some people anxiety so I would start with a small amount and work you're way up (especially if you are an axious person to start with, I am not, and have taken damn high doses without any anxiety) I can not attest to the chemistry behind all this, but what I can say is that it is a different drug (LSA makes me sleepy and kinda narcoticized, This stuff definitely did not make me sleepy--if anything got a slight stimulant effect from it, and it kept me up for 12 hours) and it seems to help my headaches.<<<

t'boy, you might also mention to her that for lots of people, beer is a "trigger" -- it brings on CH attacks! other kinds of alcohol, too -- but beer's definitely a big one. of course, i imagine that she would already have noticed the connection if beer is a trigger for her (thing is, it's generally not a trigger for an episodic like her when she's not in a ch period, but it might be when she is).

Rob, have you done this yet? As the other folks have told you, it's essential, a lifesaver. You can read more (including some major journal articles you might want to show your doctor) here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790 Even as you're getting relief from using other strategies, oxygen is at the core of any CH sufferer's arsenal. Incidentally, regarding your question about cycles, if you're chronic, then you don't have the same kinds of cycles as people who are episodic. Episodics have periods when they have CH and periods when they don't, and those periods are often referred to as "cycles." Often these periods start up kind of slowly, or with some kind of warning as Jeff says, then things get worse, then the kind of wind down again. Chronics generally don't have the "periods when they don't have CH" part, although there do seem to also be "cycles" within the experiences of chronics: http://www.clusterattack.com/blog/do-chronic-patients-cycle/

t'boy, a lot of people have oxygen tanks but they don't have proper equipment. they don't have regulators with high-enough flow rates; they don't have non-rebreather masks or they don't use the masks properly. these days a lot of people are getting great results with higher flow rates than what i describe in my file (25-plus liters per minute) and with specially-designed masks and improved breathing techniques you can see pictures of some of the items, and read more about the "advanced" or "power user" techniques at this very helpful file: http://www.clusterheadaches.com/O2/index.html if you can't get them to come on here and talk with us, can you take a look at their setups and see if they have regulators that go up to 15 or more and if they have the kinds of masks pictured in that file i just mentioned? getting proper oxygen setups can make a huge difference. in case they already have the basic equipment and are using it properly but not getting good results, they might want to try the "power user" approach. i'm not a power user -- i'm not an oxygen user at all; it's my daughter who has CH, and the "regular" methods have worked very well for her -- but there are power users here who can talk them through how to use oxygen more effectively.

thanks, wade. for most people, what you have is sufficient. some people suggest cutting off the strap on the back of your mask, so you don't keep breathing in O2 (and wasting it) if you fall asleep. also, be sure that any open holes without valves on the sides of the mask are blocked when you breathe in, so you get only O2 and not air from the room. Here's what it says at the ch.com oxygen page (there's a photo there, too). You can read the whole thing at http://www.clusterheadaches.com/O2/index.html >>>Notice the little round white disks on the side of the mask. These control the exhaled air, and the outside air. If there is not one on each side, either tape over the other one, or (as I do) place your thumb over the holes, during an inhalation, and then remove the thumb during an exhalation. If these valves are not present, or in good flexible condition, you will not get the full 100% oxygen that is required.<<<

Chris, please notice that I have started a new thread, titled TO CHRIS1331, with a response to you, in this section of the site. It will be better for this to have its own thread, I think.

Chris1331 posted on another thread (see that post at end of this message), but I think a new thread is a good idea, so I'm starting one. Chris, there are many, many people here who have been through what you're going through, and they're now living normal lives that are relatively pain free, where CH might be an occasional reality but the beast has been greatly diminished in its ferocity. You've shown great courage. Now it's time to start getting better. I'm going to re-post parts of a message I just posted, because it's faster and it contains some essentials. You can go from there with questions. You meds do not all sound wise to me (is the imitrex injectable??), but others will comment on that. Most importantly, it doesn't sound like you have oxygen. For 90-plus percent of people, a proper oxygen setup, properly used, will stop CH attacks within 15 minutes. You can read more about oxygen here -- http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790 -- but the main thing is for you to get a prescription for oxygen, or to get it on your own through a welding-supply company. You need to contact your neuro immediately about this (preferably after reading the file I have linked to). Since it's Friday, I'd recommend making the call today . . . but we're here to discuss it with you. Except in very, very rare cases, oxygen therapy for CH has no side effects. You could also start right now trying something that has helped many, many people with CH, is inexpensive, and uses ingredients that can be found at any decent drug store or place that sells nutritional supplements -- probably in a grocery store. Take the following every day: 10,000 International Units per day of vitamin D3, taken with food; 2 or 3 calcium citrate tablets per day, with or without food (ideally, these tablets should also contain magnesium and zinc); and 3,000-5,000 mg per day of Omega 3 fish oil, with food. That's it, except that many people find that a glass or two of lemonade or limeade per day with meals increases the effectiveness. Many people start getting significant relief within a few days. The levels I listed above are the "default" levels--they might wish to adjust according to their tolerance. These are not "megadoses"--all are within standard recommended daily allowances except the D3, which is high but not inordinately so. To read a great deal more about the D3 regimen, you could wade through the following thread: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/0 This D3 approach is almost certainly harmless, but given all your meds maybe you'd want to check with your doctor. It's inexpensive and effective for many people; you really should start it ASAP, in my opinion. In the short run, you can also try using "energy drinks" at the first sign of a headache. RedBull and Monster are two popular brands: the main thing is to get plenty of caffeine and taurine, which those drinks contain. For some people, catching a headache early and chugging down one of these drinks can stop a headache or keep it from getting as bad as it might have. Lots of folks with CH have success with this. Again, because of your existing heart-rate issues, it would be wise to check with your doctor about the effects of the caffeine and taurine. The major anti-CH strategy here, after oxygen, is "busting" with mushrooms, seeds, or other substances. You can't really start that without "detoxing" from some of your meds (which don't seem to be that helpful, anyway). The oxygen, D3, and energy drinks you can all do without detoxing. Lives -- including the life of my daughter and of many people here -- have been saved by this method, and by oxygen and D3. If you want to know more about it, you could read the series of posts by TommyD in the "Clusterbuster files" section of this board, probably beginning here -- http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865 -- and then going on to other posts of his. Keep talking to us. Things are going to get better for you. ORIGINAL MESSAGE FROM CHRIS1331: I DON'T KNOW WHAT TO DO!! I now have been up for 48 hours straight with this latest CH. The hospital can do nothing. I am already on 8 different meds just to control them-neurontin,1600mg daily. Depakote 1000 mg daily. The CH's also affect my BP so I'm on propranolol which is also a beta blocker known to help with CH. Nadolol for my BP and chest pains because the CH's give me panick attacks. Xanax and Lexapro for the panic attacks, the neurologist also claims those meds are good for clusters too. And the imitrex which upsets my stomach so they give me phenigren to take for that. Sometimes I just want to give up but my family keeps me going. Â

wonderful news, wade. i think in some ways we all are not just gladdened by your success, but many of us actually feel your relief. Wade, we hear this so much that I've come to think it's surely at least somewhat related to the busting . . . not that it really matters, as long as you're getting relief . . . and because we know that busting will stop or even prevent or delay your next cycle. re your wife: some people find that washing down the seed potion with cranberry juice or orange juice will relieve the bad taste. the question about oxygen is still in the air. even if your cycle is ending, you might really want to get it now, or soon. if you get a strong hit and you experience how smoothly oxygen erases it, you'll have less fear about future cycles, which is a big psychological boost.

tomboy, that's a terrible, terrible story to which everyone here can completely relate. and we know how to change it, pretty quickly, to a very different story of wellbeing and hope. none of this kind of pain, maybe never again. i'm not saying they'll be cured, but life will be completely different. i guess i should say that it definitely sounds like cluster headaches, and you say they have it . . . do they have a firm diagnosis from a doctor? first thing is that they don't seem to have an oxygen setup, which is the #1 treatment for cluster headaches. for 90-plus percent of people, oxygen will stop CH attacks within 15 minutes. you can read more about oxygen here -- http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790 -- but the main thing is for them to get prescriptions for oxygen, or to get it on their own. so you need to get back to us -- or get them on this board themselves -- about why they don't have oxygen (never been prescribed for them? "tried it" but don't think it works?). do they have confidence in their doctors, so that they could go back to the doctor and request -- demand -- oxygen. do they have medical insurance (this is not necessary--oxygen can be obtained without a prescription -- but it's good to know)? like i say, if you could get one of them on this board, it would be good. you have done a great deed for them by coming here. they could also start right now trying something that has helped many, many people with CH, is inexpensive, and uses ingredients that can be found at any decent drug store or place that sells nutritional supplements -- probably in a grocery store. Take the following every day: 10,000 International Units per day of vitamin D3, taken with food; 2 or 3 calcium citrate tablets per day, with or without food (ideally, these tablets should also contain magnesium and zinc); and 3,000-5,000 mg per day of Omega 3 fish oil, with food. That's it, except that many people find that a glass or two of lemonade or limeade per day with meals increases the effectiveness. Many people start getting significant relief within a few days. The levels I listed above are the "default" levels--they might wish to adjust according to their tolerance. These are not "megadoses"--all are within standard recommended daily allowances except the D3, which is high but not inordinately so. To read a great deal more about the D3 regimen, you could wade through the following thread: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/0 Since doing this D3 approach is almost certainly harmless (though they could check with a doctor) and inexpensive and effective for many people, they really should start it right away. In the short run, they can also try using "energy drinks" at the first sign of a headache. RedBull and Monster are two popular brands: the main thing is to get plenty of caffeine and taurine, which those drinks contain. For some people, catching a headache early and chugging down one of these drinks can stop a headache or keep it from getting worse. The major anti-CH strategy here, after oxygen, is "busting" with mushrooms, seeds, or other substances. They should come on here themselves if they want to try that kind of treatment. Lives -- including the life of my daughter and of many people here -- have been saved by this method. If you want to know more about it, you/they could read the series of posts by TommyD in the "Clusterbuster files" section of this board, probably beginning here -- http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865 -- and then going on to posts of his. We are here to help them, and if necessary to help you help them.

agreed -- great news. and thanks for letting us know. do you mind saying how much rc you used (how many seeds)? and so far, i take it, you have busted just one time?