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Posts posted by CHfather

  1. Good on you for starting this new thread, M'k!  Re-posting below the relevant parts of my answer on the other thread to your similar questions (just to keep the thread clear).  Before that . . . When you say oxygen doesn't work for you, have you tried it at higher flow rates (25 lpm or more)? Have you tried an O2ptimask?  Using a "hyperventilating" style of breathing?  All of those things have made O2 effective for people who thought it didn't work (or had stopped working) for them.  For that matter, when you tried it and it didn't work, did you have a flow rate of at least 12-15 lpm and a non-rebreather mask??

    If your question is whether it's okay to dose with RC seeds while taking prednisone, just in case the seeds might somehow work, I don't know the answer to that.  Have you experienced any effects from the seeds on your attacks, even a temporary worsening of the attacks, or them coming at odd times?  That might indicate that you're getting what are called "post-dose hits," and post-dose hits suggest that the RC might be working.

    But of course most people here would urge you to try to get off all meds that can block busting and then give busting a fair test.

    [My previous post at the other thread] >>>Michelek, it is generally thought here that prednisone will block the effects of seeds. 

    Do you have oxygen as an abortive (that might help you get off the prednisone)?

    If you're talking about RC seeds, I think most people here would consider 20 a pretty small dose. . . but, again, that's probably not relevant if the prednisone is blocking busting anyway.

    PS: If you're planning on staying in touch with this forum, you might be better off to start a new thread.<<<<

  2. Before someone else mention this, I'll point out that EF Hutton nearly collapsed over 20 years ago, had to be propped up by other entities (sounds like me so far), and eventually disappeared (sounds like me, eventually).  Great commercial, though. 

  3. Michelek, it is generally thought here that prednisone will block with the effects of seeds.  That has also been believed about kudzu, but at least one person here found that kudzu did not interfere with his busting. (Of course, if prednisone does interfere and you're still taking it, then it doesn't much matter whether the kudzu also interferes or not.)

    Do you have oxygen as an abortive (that might help you get off the prednisone)?

    If you're talking about RC seeds, I think most people here would consider 20 a pretty small dose. . . but, again, that's probably not relevant if the prednisone is blocking busting anyway.

    PS: If you're planning on staying in touch with this forum, you might be better off to start a new thread.

  4. This is another thing I know practically nothing about, but as part of the O2 research I'm doing lately I came across the following passage in the OUCH oxygen document. No idea how valid it is.

    >>Unless you provide a portable O2 system to the air carrier 48 hours in advance of the flight for inspection and approval, travel with private O2 cylinders is prohibited even as checked baggage. Although not required by law, some air carriers may provide O2 systems for passengers at a cost, and it must be arranged days in advance of the flight. ItÂ’s always best to plan ahead by checking with carriers well in advance of travel. If you must travel by air, take your regulator, mask, and prescription for medical O2 with you and order O2 cylinders at your destination.<<<

    In that document, on page 24, they show a couple of ways of creating a portable oxygen system. http://www.ouch-us.org/medications/oxygen/O2_CH_Abortive_v2r7_Final.pdf

    I also noticed that AirGas/Linde Group provides a travel-related O2 service: http://www.linde-healthcare.com/en/about_linde_healthcare/Patient-focused_care/oxytravel/index.html

    When my daughter is traveling to someplace where we know people, we ask them to make arrangements to rent welding O2 if she needs it.  I can also say that the good folks from this site have sometimes agreed to make an oxygen tank available if she needs one.

  5. I was just looking up information today about cleaning masks.  Here's what the OUCH oxygen guide says (I'm only reporting what those "experts" say; I don't know anything myself):

    >>>O2 masks will start accumulating oil and other contaminants each time itÂ’s used. The build up of dust, facial oil, or makeup can serve as a breeding ground for bacteria. This can taint the mask with bacteria and odors you might find offensive in the middle of an attack and after. It is equally important to keep the flapper valves clean and free of any foreign matter to ensure they operate properly. A good rule of thumb is to clean and test your O2 mask and system at least once a week. If you are using it several times a day, clean and check it more frequently.

    A good method of cleaning your O2 mask is to use a Benzalkonium Chloride antiseptic towelette. Benzalkonium chloride is a mixture of alkylbenzyl dimethylammonium chlorides. It is a rapid acting surface disinfectant and detergent that is active against both gram-negative and gram-positive bacteria, certain viruses, fungi, yeasts, and protozoa. It can be applied topically to the skin and mucous membranes and is tolerated well by most people. Benzalkonium chloride towelettes come in packets available over the counter at any drug store or chemist.

    If you are hypersensitive to cleaning agents, dipping a clean paper towel or tissue in a mild solution of a hypoallergenic soap will work equally well in keeping your mask clean. Once youÂ’ve cleaned your O2 mask, place it inside a ziploc bag to keep it free of dust and lint when not in use.<<<<

    Source: http://www.ouch-us.org/medications/oxygen/O2_CH_Abortive_v2r7_Final.pdf

  6. Keeping an eye on you all!  Still too doggone busy to really get involved, but how could I not respond to clusterdad, clustermom?

    And 'dad, you need to tell us more about how you have tried RC and how you know it doesn't work. Like others have said, RC will usually (though not always) work, if you're using good seeds and taking them right. The "float test" that Mystina mentioned ties in with Jeff's question: in general, bad seeds will float and good ones will sink.  You probably want to take about 50 or 60 good ones, ground to a powder and soaked for an hour or two in water.  No trex, of course, because that interferes with busting, but I'm assuming you're not using that now.

  7. if CHfather could jump in ... what made us think tucker's first bust was good?
    Hard to resist an opportunity to quote myself . . . .

    I think we can typically guess pretty well when a dose has worked, after the fact, by the effects: often a good night's sleep, maybe some short-term decrease in attacks or severity of attacks, and some post-dose hits. In tucker's case, he took 54 viable (float-tested) seeds and had fairly typical post-dose reactions. That's why I consider that his seeds were okay and he took enough of them. Now that he knows the effects, he may decide to go higher.

    Tucker's pretty much chronic. He's in a 7-month episode right now, and his last one was 11 months.  It sounds to me from what he's said that things are at least a bit better for him. For a person with chronic CH, shortly after the second bust, that sounds pretty good to me as evidence that busting is probably working. "Probably" is all we ever have here for evidence.  Also, he took enough seeds both times, assuming that they were actually non-floaters (--and assuming he didn't burn them up by using a coffee grinder. KIDDING!!! Grind 'em if you've got 'em, that's my new motto. Body language and vocal tone are friendly here, not hostile.)  In my opinion, if he could jump to psilo, I'd also say why not, but I don't see a reason right now to think the seeds aren't working. Your questions, Purp, seem to me like the right ones for digging deeper.

    If I'm reading Tucker right, part of his concern about the effectiveness of his seeds is related to his not feeling any psychedelic effects.  Tucker -- to be clear (and to reiterate what Purp just said), with RC seeds, most people who have treated successfully have had no effects at all, aside from maybe a slight "two-beer buzz" in a couple of cases.  As long as you're using the non-floaters and getting a good grind, the numbers you are using are plenty.  If you want to step it up more, I guess you could, but unless your seeds are worthless, really, you're almost certainly taking plenty.

  8. But since I am the one whom most will think you are referring to when you mention people PM'ing you with harsh messages, I would greatly appreciate it if you would clear this up.

    Gosh, I wouldn't even imagine you doing that, and I'm sorry that I would have given that impression or allowed anyone to gather that impression. Definitely not you. Sorry.

  9. I suddenly feel I'm confusing everyone... maybe I ought to just read this board for a while and not post

    Purp, in my opinion you're not confusing anyone. 95-plus percent of people are going to go, completely rationally, with the tried-and-tested advice -- because it works, 95-plus percent of the time.  You, and some others, are going to examine that advice, for whatever reasons -- to see if it can be made better, or out of intellectual curiosity . . . whatever reasons.  People who want to engage with that can do so.  Nobody has to.  I think it's important to remember that this whole site, and virtually all the knowledge within it, was built by people experimenting and asking questions--"citizen scientists" taking responsibility for their own treatments.  If you look at some of the old LSA FAQs (if they're still here somewhere), you'll see how much the knowledge has grown.  When I first came here, no so long ago (fall, 2010), standard advice was to start with 10 or maybe 20 RC seeds.  10 would now be completely ridiculously low, and 20 would also be considered too low by most people.  The number has crept up as more and more people reported taking larger and larger numbers of seeds without psychedelic effects.  I could see it heading closer to 50 as a recommended first dose, as more data come in. I love the way you put your mind to these things, and value it greatly.  I guess if enough people PM you with harsh messages telling you to shut up (as has happened with me), you'll have to decide who to listen to.  I hope you'll listen to yourself.

    As for your questions on the Sewell chart, there I agree that you shouldn't worry it too much.  It was early (2008!!) research (funded in part by Clusterbusters).  I would say, though, partly in agreement with Jeff and partly from the chart itself, that the .8mg/gram statistic is just an average, and the median seems to be closer to 1mg/gram, with the average being pulled down by one or two very bad batches.  And who knows how old the seeds were, how they were stored, all that stuff?  Again, this was early days. (I remember trying to prepare LSA from HBWR seeds using the method described there and practically going nuts at every step, to the point that I just gave up and ate the doggone seeds, husks and all! (I was doing this to try to figure out how to do it for my daughter.) Thank God for RC, I say--and of course, for Clusterbusters -- at least for a completely inept "chemist" like me.)

    Similarly, I can't quite figure out the effective/ineffective data, but we know some were ineffective because of not getting LSA, and I don't think we know how these people treated themselves: Did they take multiple doses five days apart, for example?  So, like you, I'm inclined to trust the higher success rate here at CB, as people do the right thing in the right way (as we presently understand what the "right thing" and the "right way" are).

  10. Shouldn't your weight figure into this as well? At 160lbs you might need 60-70. At 100lbs, that could be too many, right?
      As Purp said, there's a danger of adding confusion on confusion here, but somebody who knows can always step in.  I can only say regarding this question of yours that I have always heard that since psychedelics work on your brain, body size is not a key dosage issue. 

  11. Use a high speed coffee grinder to bust up those seeds.
    Okay, well, here I go again. I had learned, straight from the horse's mouth, that using a coffee grinder was a bad idea. Alleyoop posted on 8/29/10: >>The blender is out, as is the coffee grinder.  Heat is the enemy, and both of these appliances produce a lot of heat.<<

    I'm happy, as always, to be corrected if this info is now outdated.  I understand that it's just a recommendation, not a rule -- and obviously the coffee grinder works for bb and others.  But if "better safe than sorry" is in play here also and you want to avoid heat just in case, a mortar and pestle is a good way to go.  Makes a nice powder with minimal effort, except to keep the seeds from flying out of the mortar.

  12. my best to mystina.  hoping for a quick recovery and a return to her irreplacable, irrepressible form.  (irrepressible might seem like a big word, but i just learned it from watching "ozzie and harriet" in my long-ago youth, when ricky (later rick) nelson was always referred to in the show's intro as "the irrepressible ricky."

  13. Jeff was posting about the 1mg threshold for LSA needs to be broken in order for 100% success, i am assuming that is a weight measure? Does anyone know about how many seeds that is? 
    1 mg is a measure of the total LSA content.  Unfortunately, no one knows how many seeds it will take to reach that 1 mg level, because the LSA content of seeds varies so much.  I think someone once took a stab at some mg/seeds relationship, but I'd say there are too many variables to try to forecast.   However, 54 or 80 fresh, viable seeds are almost certain to get you there.  According to Sewell's poster that Jeff mentioned and I provided a link to, at least as I read it, the average LSA content in RC seeds is .8 mg per gram of seeds -- but, as he says there and shows there, the actual ratio varies so greatly that you can't rely on the average to mean anything in a particular case.  You could get a lot more or a lot less. Freshness and float-tested viability probably up your odds of being on the "more" side rather than the "less" side.

    To comment briefly on the 1 mg thing: For people with episodic CH, the effectiveness threshold seemed to be getting at least .5 mg of LSA (from "average" seeds, this would be less than a gram of seeds).  As far as I can tell, the seeds of only three people who were chronic were tested, and those whose seeds tested at .5 mg and 1.0 mg were "treatment nonresponders."  I agree with Jeff that if you're chronic (which you seem like you might be from what you've said) it seems as though you'll need more LSA, and you probably ought to dose that way, but the data on which that conclusion is based are very skimpy.  I can recall only a couple of people who were "treatment nonresponders" here who used 50 or more seeds, and for the most part they were people who also were "non-responders" even as they went up to considerably higher numbers of seeds -- it seems LSA just didn't work for them.   As a person who likely has chronic or close-to-chronic CH, you have to expect that it will likely take several doses to lick your CH, but right now, from my perspective, it doesn't seem that seeds are not working for you.

  14. Thanks for the information about your time between busts, Jeff.  Very interesting. I have read every post at this board since I joined (except the ones about growing shrooms), and I don't remember anyone, except maybe defectiv, saying they had consistently busted with success while waiting less than five days, and certainly not with waiting less than four days.

    I don't have the link anymore but there's a poster PDF on this website that shows in the details that 100% of people that took over 1mg LSA had success.That's pretty powerful information!
    I believe this is the poster you're referring to, Jeff:


    Note that the data you cite are different from people who are chronic vs. people who are episodic (and the sample sizes are tiny). The person who created this poster, Dr. Sewell, once wrote to me saying that in his studies he had seen a tenfold difference in the LSA content of seeds.  And you can see from the poster that some people got a whole lot more than 1 mg; but there's no indication of how much HBWR they took.  So I don't think we can have any reliable idea how many RC or HBWR seeds will effectively create the required amount of LSA for a chronic or episodic person, which I think is why Bob Wold has said that while he thinks LSA is probably more effective against CH than psilo, the problem is with getting the right dosage of LSA.  All we know is that from experience most people who take 30, 35, or more seeds seem to have busting effects from that dosage, and many people who take less (as few as 10 or 20 in two cases I know of) also have effects.  Because we generally have the goal -- or at least keep in mind the goal -- of helping people minimize tripping, we don't recommend that people should start with 90 or 100 RC seeds: A lower dose has consistently done the job for the vast majority of people (or at least starting at a lower dose has started the job; it seems most people go up from their first dose once they realize they're not gonna trip). 

    I think we can typically guess pretty well when a dose has worked, after the fact, by the effects: often a good night's sleep, maybe some short-term decrease in attacks or severity of attacks, and some post-dose hits. (In tucker's case, he took 54 viable (float-tested) seeds and had fairly typical post-dose reactions. That's why I consider that his seeds were okay and he took enough of them. Now that he knows the effects, he may decide to go higher.)

    But as I'm reading all this (your post, Bob's, and others), I guess I'm wondering why it isn't just as good advice to say "An alternative to waiting five days is to wait three days and take a much bigger dose if you can handle it"?

    I'm just trying to be a good "citizen scientist" here. I know that some of us (including me) don't particularly like to have our preconceptions and traditional ways of doing things challenged, but that's the only way that science actually advances. "Wait five days" is the safe advice, but maybe it's not the best or only advice?  Is that where this discussion is leading us?

  15. While it's recommended to wait 5 days, it's not critical to wait. Waiting 2 to 3 days is fine if you're not doing well. Also likely need to up the dose if the seeds are weak (which sounds like they may be).Another reason not to wait the full 5 days, if your first dose was with weak seeds the wait period isn't as critical.
      Gosh, I really need help understanding this advice, Jeff.  At another thread, we just had a discussion about whether waiting four days might be okay, and the consensus was that taking seeds within 4 days might work, but it also might not work, and would then set you back considerably in your busting.  I also recently posted advice I received from a top LSA/CH researcher (whose name many people would recognize but I don't feel comfortable giving here), who wrote to me >>Generally five days between successive administrations seems to be necessary.<<

    Here tucker used 54 viable seeds that, as I understand it, were fresh. He had very good results the first night.  It was his first bust, as I understand it, so slapbacks are predictable, and that could be what he had last night (plus, it's just his first bust).  Of course, it could be that his seeds were "weak," but 54 viable ones seems to me like enough to compensate for that, unless they were really, really weak. So far, he's managing okay with O2.

    Your advice is always good, Jeff.  You have helped me and others a lot. I'm assuming that you have personally busted successfully waiting only two or three days between doses. If so, this seems like very important information . . . and I'm quite sure I've never read anything like it at this board.  To help me (and maybe others) get smarter and give the best possible advice, can you say more about a 2-3 day wait?

  16. welcome! 

    hubby is lucky he has me to fight w insurance companies and threaten the ER that we are walking if they don't give him a shot after 4 hours of questions.
    i know you're not boasting here -- someone to advocate for you when you're suffering so much for so long is a great thing!

    stay in touch.  (maybe start a new thread)

    i suspect that you have read these files, but if not, please do:

    "detox" and interactions: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290130731

    seeds and preparation: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974

  17. mrsg, another one here with all fingers and toes crossed hoping that this is the beginning of the end of all you've been through.  your O2 prescription ought to permit you to have more than one tank: ask your provider about that.