CHfather

Well, it's unlikely that anything about the seeds in themselves is going to make him feel worse. There is always the possibility of one or two "post-dose hits" that are more severe, or that come at unusual times. Those are considered a good sign here that things are being shaken up in good ways. (Having oxygen to abort them helps, of course.) Cold water is fine, by the way, if that makes the drinking part more tolerable for him. In that poster I sent you a link to -- http://www.maps.org/research/sewell_2008_aha_lsa_poster.pdf -- a core finding is that when seeds didn't work, it was because people didn't get enough LSA. The strength of seeds varies unpredictably. Some people here have obtained good results from a very small number of seeds (10-15), but most would recommend a larger number to be sure there's enough LSA. 25 is probably fine as an initial "test" dose to see how he tolerates the seeds; I suspect some people here would recommend more (30, maybe) to be sure he's getting enough LSA. It's a very imprecise thing -- we all learn from others' experiences, and your caution has merit. Regarding possible nausea, a leading LSA researcher once wrote this to me: >>>Nausea is dose-related, and shouldn't be a problem at the doses needed to treat cluster headache. If it is, then there are a wide variety of over-the-counter nausea medications such as meclizine or dramamine that can be taken beforehand.<<<   I've never read of anyone needing those medications, but it might be good for you to know about this option if he does turn out to be unusually sensitive to RC.

You can find places to buy regulators and masks in Section 11 of my oxygen page. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790 The O2ptimask is a bit more expensive, but very highly recommended. Folks here are also strongly recommending a demand valve system, but that's about $350 retail and is probably not necessary right now, in my opinion (a good long-term investment if you have the $, but first it seems to good to know if a more standard system will work). Similarly, you might want to go right away with a 25-or-more lpm regulator, but 15 is probably going to work for him, given his history and the nature of his cycles. If there's a Harbor Freight store near you (there are a lot of them in a lot of places), you can probably get tanks and a regulator there. Here's a link to their "store finder": http://www.harborfreight.com/store-finder/ And here's the regulator you'd want: http://www.harborfreight.com/oxygen-regulator-94846.html This regulator does not have specific settings for the liters-per-minute flow rate, as medical oxygen regulators do -- you just turn it up (open the valve) enough that the bag attached to the mask fills quickly with air. Other welding-supply places probably sell a similar regulator. Regarding the seeds . . . You're talking about drinking down about two ounces of liquid. It's a quick thing and it's done. You can strain out the sludge with a coffee filter before drinking it (some people drink the sludge, but if you're worried about gagging, you can strain it). Some people can't bear the taste; others don't mind it nearly as much. If he doesn't breathe in the smell, it will be, like anything else, considerably less "flavorful." The peppermint tea method, if the tea is cooled per the directions, does seem to create more of a psychedelic effect, but whether it's more effective as a treatment has not been established. Maybe I'm alone and wrong here, but I'd go with the standard preparation: seeds ground with a mortar and pestle or crushed in a plastic bag with a hammer (not ground in anything heat-producing like a coffee grinder), soaked in an ounce or two of water (bottled, non-carbonated water, in my opinion) for an hour or two, and then chugged down (with or without the coffee-filter straining). Some people wash it down right away with a cranberry juice to get rid of any aftertaste. How many seeds are you thinking of using?

:) :) :) :) Wonderful news. Keep us informed, please. People here can walk you through almost anything you decide to do so it goes as smoothly and effectively as possible, which might be important for keeping hubby in the game.

ting, you could fly to texas and drive with dan and lee ann! or florida, and drive with jeff! or something. what would a conference be without you?

ditto.

Your message is posted, Giselle. Great to have you here.

for the record, there are a couple of photos of a demand valve, along with discussion about it, at the ch.com oxygen page, and demand valve is also discussed in my little page here in the clusterbuster files, with a link to the ch.com page. i suspect that those pages are most often looked at by people who are new to oxygen, maybe considering an O2 system for the first time. it's hard to know how much to push demand valve there since, as was said at the conference and in this thread, they're not cheap and maybe not an advisable early expenditure for people who haven't even tried O2 yet. i don't know how common it is for people to go back to those pages after they've set up O2 and started using it. the search engine at the ch.com site quickly leads to some good pages, with photos, about how the dv works and why it's so good: e.g., http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1226213955 not saying it shouldn't be highlighted more somehow, but i'm just not sure how to do that beyond mentioning dvs to everyone who says something along the lines of "oxygen doesn't work for me" Â

Yes, Maxx, I sat with my daughter (who's older than your husband) through night after agonizing night when she was using nothing to treat her headaches, because doctors had led her down so many blind alleys that she had given up hope. Like so many others here, I completely understand how truly heavy it makes the heart to experience that--and to fear that it will be something that will worsen over time (which, to be honest, it probably will, which is why he has to act now or very soon) and that will have to be endured time after time. But you can change everything by doing things that have been recommended by the good folks here (and, as another source of hope, it seems very possible that it might only be a couple more years before a true long-term "cure" for CH is available). With my daughter, we finally got her a solid oxygen setup (which is what you should do first, or at least very quickly, if you can) and it drained away her terrible multi-hour attacks in under 15 minutes--like magic. Here's more information about oxygen: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790 She also started chugging down an energy drink at the first sign of an attack, and that helped her quite a bit, especially when followed directly by using the oxygen. RedBull, Monster, or another brand with high caffeine and taurine content are what you want. Busting will stop a cycle and lessen the severity of attacks during a cycle. As Matt (Bejeeber) said, you ought to order RC seeds right now. They're legal to purchase and have in your home, so you're spending a pretty small amount of money for a lawful "insurance policy" if he decides to bust (not legal to prepare and drink). You can get rivea corymbosa seeds from a lot of places on the internet. Two that are commonly used here are www.iamshaman.com and www.psychoactiveherbs.com. You'd probably want to order 100 seeds. More information about the (very simple) method of preparing seeds, and a lot of related info, can be found at http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974 If you can get him to try a healthy regimen of vitamins and other supplements that has helped a lot of people, often quite quickly, please consider the simple steps described in this file: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 If you can get him to a doctor -- if only to get a prescription for oxygen -- that would be good. You can find a list by state of doctors who have been recommended by people with CH here: http://www.ouch-us.org/chgeneral/OUCH%20DOCS%20-%20US%208-16-2011.pdf. If there are any near you, you might call and ask whether they will prescribe oxygen for someone with cluster headaches, and of course if so -- and if he can be persuaded to go -- whether you can get an appointment quickly because he's in cycle now. Otherwise, welding oxygen will work just as well. Finally, I just wanted to give you a link to this chart, prepared by a doctor from a major medical school, about the effectiveness of seeds in dealing with CH. This chart is what led me to pursue busting with my daughter; maybe it will be valuable for your husband to see it. It's about another kind of seed, HBWR, but these seeds contain the same active ingredient (LSA) as RC seeds, and many here prefer RC seeds because they're much easier to work with. http://www.maps.org/research/sewell_2008_aha_lsa_poster.pdf It's not uncommon for people with CH, who have been so misused by the medical system, to give up and think they have to just try to figure out how to endure the pain. Maybe they can do that this cycle or the next cycle, but the cycle after that and the one after that are going to hit them harder, and they get older and become less resilient, and no matter how "tough" they are, it just can't be endured, and then the dread of the next cycle also starts to take over their lives. There's no reason at all for your husband (or you) to live like that when simple, effective treatments are available to him. If one doesn't work (though it probably will), another will. He has to keep trying, starting now. Thank you for making sure he does.

Woot!

Thanks for checking back in Stephen -- it's frustrating here when people "disappear." So glad your cycle's ended! If it ever returns, you are well armed with information, and presumably you'll be out of school so that busting will a better possibility for you. You can do a lot of educating in your new line of work! Best wishes, Jerry

Noooooooo! I'm down (I'm really down). That's the only Beatles lyric I can think of at the moment to counterpose to your "in!/out," which I'm sure is inspired by the "dontcha know that you can count me out/in" line from "Revolution." Or maybe not, but that doesn't mean I'm not down, 'cause I am. Really down. Next year's too long. Bummer. Jerry

pretty clear she doesn't need any help from me!

takes me right to the correct page (using firefox)

it took me a while to locate the site that ting is referring to. it's in the uk, and the website is www.allsalvia.co.uk i've mentioned in other posts that people here seem to get seeds from many different places, and while there is sometimes speculation about whether seeds from such-and-such a place were high quality (including about seeds from iamshaman), generally the seeds seems to work. we have ordered from several different places, and have had no complaints.

ron, i'd suggest that a quick google search would enlighten you and save mystina some potential discomfort. Â

Ting, the current forecast for the conference weekend is sunny with highs around 70 (high of 62 on Thursday) and lows in the mid-50s. 70 Farenheit is about 21 Celsius; 55 is 12.8 This link might be easier: http://www.weather.com/weather/tenday/Chicago+IL+USIL0225?from=36hr_topnav_business

Feels a lot more like home with Mystina, Dan, and Ron back in the fold. Nope, not gonna say anything sarcastic about what kind of "home." Just glad you're all here.

Dave, people report different experiences with seed vendors, and there's no consistent theme. I'd say 95-plus percent of the time, what you get from any vendor will be fine. It seems that www.iamshaman.com is often recommended here; I kinda like www.psychoactiveherbs.com, but again for no good reason except that they worked. Unless for some reason you think you'd prefer HBWR (Hawaiian baby woodrose), I recommend RC (rivea corymbosa) for ease of preparation, dose management, and minimization of psychedelic potency. In the US, it's legal to purchase and possess seeds, just not to prepare/consume them. You'll want at least 100, I would think.

most people here say that generally three treatments (at least) are required to do the full magic. so it seems you're doing it right, especially since you've seen good results. in terms of starting before your cycle (for future reference), i think most people recommend "maintenance dosing" every three months or so, and being sure to bust at the first sign that a new cycle is starting. when you ask, >>if I need more how the heck am I going to get any?<<, you raise a question that also came up for me in moto252o's current thread, to which i don't know the answer. i am thinking that two doses of one modality (shrooms, let's say) followed by subsequent doses of another type (seeds, let's say), will probably work almost as well as three or more doses all of the same thing. even though their psychoactive properties are different, it's my understanding that they all work in essentially the same way. so i'm saying that if i were you and i didn't have more psilo, i'd definitely start on seeds and expect good results. but i'm also asking whether others who know more than i do might want to correct me about that.

well, i don't want to overcomplicate this, but i'm sure i remember reading that distilled water is not recommended (something about not having the minerals to do something with the electrolytes). i think the what-kind-of-water question might be overemphasized, since people seem to get good results with all types, but the most common advice i've seen is that it should not be any kind of sparkling water, and should not be heavily fluoridated water, which tap water is, in some places. so any non-carbonated bottled water (so that it's fluoride free, which they all are) seems like the safest bet, from all that i've read. again, i don't want to be hysterical about this, because as i say people have had good results with all types. just telling you what i've read and what worked for us.

It does say something like that in the conference syllabus (LifeGas has "generously agreed to supply oxygen tanks for use during the conference.") I have a 15lpm e-tank regulator that I can make available. No mask, though.

Yes, deep breaths. There are some people for whom O2 just doesn't work, but that's pretty rare. Did it ever work for him, more quickly/more effectively than it does now? I'm over my head, so hopefully others will step in.

Waaay too long! Maybe even dangerously long. You say the flow rate is 15lpm and he's using a non-rebreather mask, so I'm kind of stumped. He either needs to switch to higher flows with a new regulator as Bejeeber has mentioned (about which Jeebs and others here are considerably more expert than I am, and which you can also read about at the two oxygen files I've referred you to), or maybe he's doing something wrong with what he has. It's a tank, right, not a "concentrator" (a concentrator is typically a squat, gray, noisy machine that makes O2 from room air--practically useless for CH)? And is there a hole on the side of his mask that lets room air in as he breathes in? That needs to be covered so he's getting only O2. (There's an illustration of this at http://www.clusterheadaches.com/O2/index.html and here's what it says there: >>>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. If you are male, and have facial hair, you may have trouble getting a full seal around the mask. You may want to just remove the mask, itself, and breathe straight from the plastic valve mechanism.<<< He could try the O2ptimask, which which a lot of people get much better results. Maybe others will chime in here with things I'm missing. And we'll hope for the best from busting/D3.

Is the oxygen helping him??? If not, he might want to try a higher flow rate and deeper inhalation/hyperventilation. Also, as you can see from the oxygen file I referred you to, there is some equipment, such as the O2ptimask and a demand valve, that make the use of O2 considerably more effective. And also also, I wonder whether, if the oxygen is helping him, he's staying on it long enough to completely abort his HAs -- it's recommended to keep using it for at least several minutes after the headache has gone away. If you haven't looked this this file, it might help: http://www.clusterheadaches.com/O2/index.html Regarding the seeds, people start at all different levels. Some start with what we would consider a very small dose (10-20 seeds), to see how it affects them. The problem is that generally that's not a high enough dose to have much effect, but you still have to wait five days before dosing again. This is not a science: not only are people affected differently, the seeds vary in potency, so a lot is done by testing to see what works without undesired side effects. I would say that many people, if not most, work their way up to a dose of 50-60 seeds or more . . . but some get relief at 30-40, and some have reported at least short-term remissions with as few as 15. I think most people take them around bedtime. Many/most people get a very good night's sleep after dosing, which is quite a blessing in itself. Regarding the pain, I'll let others speak. You could read this: http://en.wikipedia.org/wiki/Cluster_headaches    I always remember a doctor saying it was equivalent to the pain of having an arm or leg amputated with no anesthetic. Others may also have advice about what you can do to help during an attack. I'm afraid that "not much" is the answer, but maybe I'm wrong about that. When my daughter was on the downside of an attack, it seemed that I could sometimes help by circling her arm with my hands and pulling down toward her wrist, as though I was getting the blood to flow in that direction. But there were also times when any touching was unbearable for her.

Jo, it's great that you're stepping in here to help. Sometimes folks with CH can get so caught up by the pain and frustration that they stop trying to get better. Maybe they've been to doctors who have not given them proper treatment -- almost everyone here has many stories about that. But people here have been able to hang in there, often with the help of someone who cares like you do, and their lives are 100% better -- even pain-free in many cases -- because of it. Everyone here will tell you that oxygen is essential. Does he have that (a tank with a regulator that goes up to at least 15 liters per minute, and a non-rebreather mask)? You (and he) can read more here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790 Can't overemphasize the oxygen. It can stop an attack in 15 minutes. It saves lives. Do you think he'd be willing to try the "busting" elements mentioned here? As you might have read, they are taken at levels that cause little or no psychedelic effects -- and they work for a very large percentage of people. You could start by reading this file (and there are many others on specific related topics in the "Clusterbuster files" section of this board): http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865 Is he taking some kind of prescription medicine now? He might have to "detox" from that for five days before trying "busting." Let us know; ask any questions you have; and answers will appear from people who have beaten this terrible thing, CH, and want to help others do so. If you can get him to participate himself here, he will be sure to find many brothers and sisters who are "just like him" in many ways, and who will help restore his hope and determination. I would also recommend that in my opinion he should start right now on the simple, inexpensive, easy, and safe vitamin D3 protocol that seems to have helped many, many people quickly and also lastingly. You can read about it here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804Â