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Posts posted by CHfather

  1. so, you're all (or mostly) detoxed -- congratulations!!  and great going on the demand valve!!

    you were thinking 35-50 seeds back when you were mulling this over.  i've always been reluctant to give specific dosage advice, but the more i see, the more i think 50 is the better of those two numbers, especially since you've said you're not troubled by the possibility of a light trip -- although even that seems quite unlikely at that dosage level.

    it's such a pleasure to see you taking charge of this, and making your way out of the really awful circumstances you described in your first post.

  2. A related thought . . . . I've never understood how well SPUT (small piece under the tongue) actually works.  Maybe it's not strong enough for you.  But you could presumably SPUT some good stuff all the way up to the time before you have to go through security.  And if none of my other ideas in the previous message make any sense, you could at least SPUT some seeds while flying.

  3. Mystina, since it's your first time, a clarification and a couple of thoughts.  You can surely buy energy drinks after you go through security, and even bring them on the plane with you (I wouldn't be surprised if they sell them on the plane). I don't know what airport you'd be flying from, but it feels certain to me that they'd have energy drinks in the stores that are past the security part.

    A few thoughts. Seeds are legal. You can bring as many of them as you want.  I wouldn't be surprised if you couldn't grind 'em up in advance and carry them on as a powder, to which you could add some water during the flight. An hour later . . . .  For that matter, you could buy a beverage from a fast-food place before you board, dump whatever was in there and replace it with the powder and water, and carry it on with you. (Or get to the airport early enough that you could put together this beverage while waiting to board and drink it before boarding.)

    (In fact, since the limit for liquid carry-ons is 3 ounces, you might be able to prepare your own medicine in advance and carry it on, in some kind of opaque bottle.  I suppose this might make you nervous. But maybe there's something here to consider.)

    I have another suggestion, which I will PM you about.

  4. i did notice in sewell's poster that the effectiveness threshold of LSA for people who are chronic seems to be higher than for people who are episodic.  (that is, you gotta get more of it to avoid it being ineffective if you're chronic than if you're episodic: .5 mg. of alkaloid was the dividing line for people who are episodic; 1 mg. for people who are chronic).    however, (1) this is based on a small, erratic sample, and could be just a statistical blip; (2) it doesn't mean a lot is better, just that the amount that's too little seems to be different; and (3) i have no idea (this was bob wold's point, of course) how to assure yourself that you get above the threshold, but i think the numbers we usually throw around as a recommended dose (50/60 seeds) are more than sufficient with decent seeds, still without creating any significant psychoactive effects.  (one person here busted successfully with two doses, one of 10 RC seeds and one of 12, and my daughter definitely shook things up with an initial dose of 20.)

  5. Don't want to hijack this thread.  So I'm going to delete the very long response that I just wrote to Ron's post and simply quote Bob Wold from a May 11 post at this board: >>Some people will have better luck with the seeds. They are a little closer to LSD than psilocybin.  The big thing is that its often a more reliable dose strength with mushrooms if you know what you have or can adjust a little. The strength of seeds is what has always been in question from batch to batch. I think that is the only reason that mushrooms may appear to be more effective. If we had pure LSA vs pure psilocybin, I doubt there would be much difference and maybe even a slight edge to the LSA.<<

    Since I think that the variabilities in dosing can be addressed 98% of the time by just making sure one takes enough seeds, I'm sticking with my position about LSA.

  6. well . . . 

    if you're around here long enough, b.g., you will recognize ron as one of the handful or two of the wisest, kindest, and most knowledgeable folks here.  he and his son michael are in the daily prayers and counted blessings of many, many people here.  there's even an award here named for him.  and you will also see that, since we're all figuring out a lot of it as we go along, not everything is nailed-down certain.  one example is how much some compounds, like verapamil, actually interfere with busting.  another is the relative effectiveness of the various busting agents.  so my two cents, in contrast to ron's three or four, is that i don't think there's much evidence, or much reason, to think that "psilocybin is a far better busting agent than seeds." i have heard from two sources that know more than most of the rest of us that seeds are actually preferable to psilo, aside from the fact that the LSA content of seeds is a lot more variable (admittedly, that's a potentially big aside).  and i feel very, very confident that seeds will work fine for you.  no major reason for you not to follow ron's growing advice, and people do find that switching up (or combining) their busting agents over time seems to have a positive effect. but seeds are plenty good for dealing right now with what you're dealing with.

    here's a poster from a medical conference, created by another CH hero, dr. richard sewell, showing the effectiveness of a different kind of seed with the same active ingredient (lsa) (pay no attention to the preparation method--a lot has been learned about that since then). what you notice is that it worked for almost everyone (with the added benefit of no psychoactive effects except for those who took very large doses), except for those whose seeds were, basically, "duds."  you are not likely to get duds, and even if you do, you can take enough of them to counteract that possibility (still without likely psychoactive effects).  http://www.maps.org/research/sewell_2008_aha_lsa_poster.pdf

  7. so just the oxygen for 5 days and no meds before the seeds?i think i can handle that!! 

    full disclosure, though: your headaches might become a little worse before they become better.  the phenomenon is known here as "post-dose hits."  not everyone experiences them, and they generally occur for only a day or two after a dose.  considered a good sign that the dose has shaken things up, it can still be unsettling to get higher-kip headaches, or headaches at different times, after a dose.  if you're like most people, you'll feel good results shortly after that, though you'll probably need to dose again a couple of times after additional five-day waits.

    also: there are quite a few meds (beyond just CH meds) that are believed to interfere with busting.  if you're taking anything else -- an antidepressant, for example -- you should look over this list: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290130731

    finally, to be sure you're maximizing your current oxygen system -- did doc tepper, or someone, show you to block up any holes in your mask that do not have valves in them? if there's just an open hole in one side, you should block it off by holding a thumb over it when you breathe in (so you're getting pure O2 and no room air). or, you can just tape up the hole.

    the D3 is also likely to make detoxing easier.

  8. don't neglect the D3, either, b.g. (as you saw from that other thread you were reading, it can sometimes be (or at least seem to be) pretty miraculous).

    i see tepper's already on the list of recommended CH docs--glad you found him!  it does feel like meeting god, to find a doctor who understands after all the rest.  (i hope at some point you might get back to those other ones and let them know what you have, so they might understand CH better and perhaps save some others from needless torment.)

    did tepper recommend a 15 lpm regulator and a standard non-rebreather mask?  is your setup working well for you?  many people here get even better results with the O2ptimask and a higher-flow regulator.  the O2ptimask in particular is very highly regarded.  you can find info about ordering those things in section 11 here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790

    looking forward to hearing more from you.

  9. b.g., so sorry for what you are going through, and so glad you've come here.

    if you decide to treat your headaches with psychedelics, you can do that faster (faster than waiting for your mushrooms to grow) by using seeds, most typically rivea corymbosa (RC) seeds.  you can buy the seeds (legally) today, and have them (legally) in your home, and take them (unlawfully) whenever you are ready, after (the hard part) having stopped taking the meds you're now taking for five days.  they work just as well as mushrooms.  you can order them from many places on the internet, including www.iamshaman.com and www.psychoactiveherbs.com

    you'd probably want to get 150 or 200 seeds (they're pretty inexpensive).  for more information about how they are used, see this file: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974

    of course, if you decide to do this, let us know if you want additional advice.  and if you're readier than i think to try psilocybin, others will answer your questions about that.

    if i were you, i'd start on the vitamin D3 regimen, too -- right away.  it's helped a lot of people, and "detoxing" from your current meds is not required.  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

    good news for you is that a very effective treatment for CH, called BOL-148, is on the horizon, and could be available as a pharmaceutical medicine within a year or two.  you might want to sign up on the patient registry here: http://www.entheogencorp.com/community/

    would you mind (if you do mind, it's okay) mentioning the name of your doctor at cleveland clinic?  there's a "sister organization" of clusterbusters that publishes a list of knowledgeable CH doctors, and i'd like to add that to the list.

    things will be a lot better for you soon.

  10. not much to add here to those beautiful messages from jeebs, mystina, and clustermom.

    thank you for checking back in.  i was wondering about you and your hubby, and i'm sure others were, too.

    gabapentin/neurontin, as mystina said, makes some people feel kind of dopey and/or uncoordinated. one thing about "memory loss" is that once you're told you're going to have it, then all the normal minor moments in the day when your forget something can come to feel like "i'm losing my memory!"  the effectiveness of neurontin for CH also varies quite a bit.  so he'll have to try to feel his way through this and try not to overreact. i doubt that long-term memory loss is a serious danger.

    that's a big bunch of meds he's on.  partial as i am to the D3 regimen, i don't think i'd add that into the mix, though it is just vitamins at generally "normal" dosages, so you could consider it.

    some studies have correlated sleep apnea with CH, so a sleep study isn't a bad idea.  won't learn anything about brain waves and CH, though, especially if he's out of cycle.

    so glad you're getting the O2.  i'd strongly recommend that you have the O2 supplier set up the equipment and show him how to use it.  it's simple, but a lot of mistakes are made, glitches that just add to the frustrations of CH when you least want them. (actually, i'd call the supplier ahead of time and make sure they're bringing the right stuff--sometimes they don't; many suppliers are not really familiar with CH. and you want at least two large tanks ("m" tanks) and at least one smaller, more portable tank (an "e" tank) that he can bring to work, have in the car, etc.  since the regulators are different for m tanks and e tanks, it'd be nice if the supplier would give you one of each kind of regulator. (what they'll give you depends in part on how the prescription is written.))  the mask that mystina mentions is called the O2ptimask; you'll find info about ordering it in section 11 of this file: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790

    be sure to note in that file the correct way to set up the mask -- cut off the strap at the back (so he doesn't fall asleep with the mask on) and cover up any holes in the side of the mask that do not have a valve in them. you can cover that hole (there should only be one, if there are any) with a thumb while breathing in and then let the thumb off while breathing out, or tape up the hole altogether.  point is to be breathing in only the air from the tank and not having it become mixed with room air.

    you'll also see some mention in that file of the "demand valve" system that most people say is great, though a bit costly (around $350 retail).  depending on your finances, that might be worth considering, though if his cycle's about to end, maybe you'd want to wait.

    finally, i'd be remiss, given your description of yourselves as a couple, if i didn't mention one other study of something that helps for CH, which you can find here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2077391/?tool=pmcentrez

  11. A hoping-against-hope question: Has anyone here ever busted successfully while on cymbalta?  It's a selective serotonin and norepinephrine reuptake inhibitor.  TommyD lists in among the blockers, and I suppose there's no reason to think it isn't--like I say, just hoping against hope here.

    Follow-up questions:

    1. Is it likely to be actively harmful in some way to bust while taking this medication: increasing HAs or doing some other kind of bad thing?

    2. If not, might taking high amounts of seeds somehow overcome or partially overcome the blocking effect of cymbalta?

    Do I sound desperate?

  12. jf' -- glad the D3 seems to be helping!

    there are Harbor Freight stores in a lot of locations that will rent you O2 tanks, and also sell regulators that will work.  check here: http://www.harborfreight.com/store-finder

    also, you can look up "welding supplies" for your area on the internet.

    apparently it's very straightforward to get the O2. say you want it for welding.  no, you don't need acetylene.  most people report that that's all it takes.  as you know from past experience, you need at least one big tank (an "m" tank).  two is better. they'll refill it/them there.

    you can find information about where to get a mask and a regulator at the end (section 11) of this file:  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790

    if you go to a harbor freight store, 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. 

    the O2ptimask is a bit more expensive, but very highly recommended.

    again -- glad things are a little better, and good on you for persisting with finding ways to make it so.  diet is relevant to the D3 regimen, since its goal is to shift your systemic pH balance from acidic to alkaline.  if you want, i can tell you more about that.  and i think some people find nitrites (like you'd get in hot dogs) to be a specific trigger for them.

  13. 21+, i know we're all so sorry to read of these ups and downs, and we know the terrible heartache.

    i just have a couple of observations.  when you say you "tried" D3, kudzu, mushrooms, i just wonder what those trials were like.  please don't think i'm criticizing -- everyone here has tried lots of stuff.  if the D3 regimen was turning his urine purple, as opposed to yellow, i'd say something was wrong there.  and it, and the shrooms, can take some time (at least a few weeks on the D3; multiple doses of shrooms), and the shrooms will generally not work if they're being blocked by other meds he's taking.  so i'm just asking whether your trials of those things were sufficient to decide they wouldn't work. most of us here have found that the psychedelics do work under the right conditions, so i'd like it if you/he didn't give up on them.  sometimes if shrooms don't work, seeds do.

    his crankiness and refusing to ask for anything is not surprising (and it ties in to my previous point). many, many people with CH tend to just give up at some point--they can't stand the cycles of hopefulness and pain, and their physical and psychological resilience is completely beaten down. often they suffer from a form of PTSD (post-traumatic stress disorder), like people who have been in a war.  it takes a lot to keep trying. i had to get past a huge amount of defeatism and crankiness from my daughter to get her to have a proper oxygen setup and try seeds.  i am saying again that it's highly likely that a proper treatment with a psychedelic, when it's not blocked by other meds, will work for him.  but you might have to help him keep trying.

    i'm puzzled by what you're saying about the oxygen.  a 4-liter flow will not help him.  he needs at least 12-15 liters per minute, with a properly used non-rebreather mask.  this is essential.  many doctors will know that "oxygen" is important, but then won't provide it in an effective way.  if he's getting 4 lpm with some kind of crappy mask or cannula (the things that stick into your nose), that needs to be corrected.  he has to be able to inhale only pure oxygen, and inhale it deeply and consistently -- that can only be done with high flows and a properly used non-rebreather mask.  the first article that's linked to in the file i'm about to direct you to is from a major medical journal and says all that clearly, based on research.  if he's not getting 12-15lpm with a non-rebreather mask, you should show this article to his doctors.  you will also see in this file what i mean by a "properly used" non-rebreather mask: you have to plug up any valves that let in air from the room when he inhales: he has to be getting pure O2.  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790

    i hope some of this is helpful.

  14. just to be clear--the energy drink right at the start of an attack can sometimes be a good abortive.  the taurine in energy drinks seems to be what makes them more effective that just coffee.

    you're enduring a lot with no oxygen and no meds.  i really hope the D3 helps you as it has helped others.  please be sure to take it in the recommended amounts, and to include the two glasses/day of lemonade/limeade.

    some people without oxygen breathe cold air from their cars' air conditioning at the beginning of an attack.  many here would tell you it's worth it to get oxygen, whatever the cost.  without insurance, you can still create your own system without a prescription, using oxygen from a welding-supply store, which many people have done.  if you should happen to still have your mask and regulator (and the regulator's the right type), you're not talking about a whole lot of money to rent oxygen tanks.

    stay in touch.

  15. I've never been able to get an oxygen set up.

    Good Lord!  This is the first thing you need!  If you can't get a prescription for oxygen from a doctor, you can create your own using welding oxygen.  Yes, it costs some money, by prescription or otherwise, but you really, really, really should no be without it.  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790

    In the short run, have you tried chugging down an energy drink--such as RedBull or Monster; anything high in caffeine and taurine--at the start of an attack?  That helps some folks quite a bit.

    You've got a lot of reading to do now--oxygen, seeds, D3--but it all will pay off for you.

  16. With RC seeds, you are very unlikely to experience even slight psychedelic effects.  You can start with a very low dose -- which, since your system is so clean of potential blocking meds, might work in itself -- and then slowly add more if you feel comfortable doing that.  You could start with 15 seeds to be almost 100% certain of no effects (I say "almost" because who knows, but I'd put the certainty of no psychedelic effects at about 99.756%) -- many people here take 50 and more and all they get from that, in terms of side effects, is a really good night's sleep (plus help for their CH).

    I recall a thread here about psychedelics and people in recovery, and I remember one fellow saying that seeds had no effect on his sobriety.  Can't say much beyond that, but others might chime in.

    While you're thinking it over, I'd strongly recommend that you start the vitamin D3 regimen that has helped a lot of people, sometimes very quickly.  It's cheap, safe, easy to put together, and probably good for you in itself. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

  17. Potamus, you're already in very good hands here with two of our heavy hitters, Ron and Jeebs.  I don't have much to add except hello, and we'll help you any way we can.  No question is inappropriate.  Here's the file about seeds in general (RC is preferred for ease of preparation and minimal psychedelic effects, if any): http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974

    Since you've been active at the other site, it may be silly for me to ask about your oxygen setup, but I'm asking anyway.  Many people have found that if the 15lpm, standard-nonrebreather-mask setup is no longer working for them, "upgrades" such as the O2ptimask and demand valve system or higher-flow regulators bring greatly increased effectiveness.

    And I'm gonna second Jeebs about the D3.  We just got another good report at another thread here about what seem to be good, quick results.  To repeat the link to that file: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

    You've been suffering too much for too long; let's put an end to that.