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Posts posted by CHfather

  1. Crystal, I do understand why you don't want to keep shoving more stuff into your system.  Maybe the water will work -- I know it has for some people.  But here are a few thoughts.

    It's my impression that some people take more melatonin than 9 mg when they're in high cycle.  I've read of 12 - 15 mg. not being an uncommon dose.

    Based on experiences reported here and even more so at ch.com, I still think the D3 approach is worth serious consideration.  Here's the kind of comment that keeps me recommending it, even though for some people it has not been effective: >>>I have been headache free pretty much since starting the D3 regimen. I'm also taking melatonin at night. I'm convinced the D3 regimen. followed exactly as the directions indicate have ended my cycle.<<<     I do think that following the directions exactly is important.  (Ah! I just realized that the "123 days thing" you referred to is the D3!  Good.)

    In order to take the seeds, as Bejeeber has written, you want to be off the prednisone and the imitrex for several days.  Verapamil seems to be less of an obstacle to busting.  Getting a working oxygen system is pretty essential to being able to drop those meds. You haven't said whether the oxygen that didn't work for you was at least 15 liters per minute using a non-rebreather mask.  It's true that there are a small number of people for whom oxygen just doesn't work, period, but for most people, it's just a matter of getting a proper setup.  (If you have not had a proper setup in the past -- my daughter, for example, was given an oxygen "concentrator" that could only put out a maximum of 8 liters per minute and she was given nasal "cannula" -- those things you stick into your nose -- and so she and her doctor believed, falsely that oxygen "didn't work for her -- then maybe your doctor would be willing to prescribe a proper one.  In that file I directed you to, there are links to official medical journals showing that 12-15 lpm and a non-rebreather mask are essential; you could show those to your doctor.)

  2. crystal, that's an awful situation.  my heart is hurting for you, and i know that's true of everyone who reads you post.  my daughter is also 34 and in cycle right now, so it's particularly poignant for me. (she's a lot better off since she got a good oxygen system and started busting with RC seeds, but it's never a picnic.)

    there are a lot of things you can do, and they all are likely to help you (and help you manage future cycles much better) but none of them is likely to be an immediate magic bullet.  you can create your own oxygen system using welding oxygen and regulators and masks that you can buy on the internet.  i'm not sure why your previous oxygen system didn't work for you, but our usual guess here is that the flow was too low or the mask was not right.  you could start by reading this file and then asking any questions you have: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790

    there are some harbor freight stores near pittsburgh where you can get oxygen and a regulator.  you'll be able to find them here: http://www.harborfreight.com/store-finder/

    you can take rivea corymbosa seeds instead of mushrooms.  seeds are just as effective and can be purchased and possessed legally (preparing and drinking them is illegal).  i'd recommend that you seriously consider ordering some today and having them overnighted to you. among the many places on the internet where they can be purchased are www.iamshaman.com and www.psychoactiveherbs.com

    read more about seeds here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974

    you'd probably want to order 150-200.

    you could start today the vitamin D3 approach that has helped many people, some of them quite quickly.  it's relatively inexpensive, safe, and all the ingredients can be purchased at a decent pharmacy.  read about it here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

    have you tried melatonin?  are you using RedBull or Monster drinks taken at the onset of an attack to try to abort them?

    our best wishes to you . . . hang in there and the good folks here will hang with you.

  3. Brad, I see on another thread that you've been having some good days.  So happy to see that!  Any explanations?  Doesn't seem that you've done any busting (?), but you did say you were about to start the D3.  Have you set up your oxygen yet?  (Not that O2 would explain the PF days, but it's important for you to move forward on that.)

  4. if i can say so, heilette, this sure seems like a lot of questionable medical advice. i'm not a doctor or even one of the clever guys, but . . . try two things and you're "snookered"?  nah.  and i'd say that it's quite unlikely that something you started or stopped doing two years ago caused your attacks.  possible, i suppose, but unlikely.  (of course, as ricardo says, if beer works, then beer works, and it's good you've found it.)

    no imitrex?  the oxygen is helping, or no?  (if no, then maybe, given all your other information, you don't have CH and you need a better diagnosis.)

    do you have access to "energy drinks" such as RedBull or Monster brands -- it's generally believed that the taurine in those drinks (which also contain a lot of caffeine, as with your coffee) helps with CH.  some people take taurine capsules.

    have you tried melatonin?

    hard to guess why the licorice root would cause that shift.  maybe you could send a private message (a PM) to les genser (who developed the licorice root regimen) and ask him about it -- though he hasn't been here much lately.  you can pm him from here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?action=viewprofile;username=41485E724A48435E485F2D0

    be careful with the licorice root (maybe especially in light of your raynaud's).  les cautioned that it shouldn't be taken in high doses for extended periods of time.  here's some information about all that: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068

    it's not clear, from the very small amount that i know about raynaud's, how the raynaud's would interact with psychedelics, and the reasons for your concern.  can you say a little more about that?  if certain kinds of seeds (rivea corymbosa or hawaiian baby woodrose, particularly) can be purchased there, then your lack of growing skill might not be an obstacle to busting.

    and, broken record that i am on this topic, i'd just like you to be sure that you were doing correct dosages of the vitamin D3, and that you gave it enough time.  dosages are listed here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

    hopefully, the truly clever folks will be here with more, and better.

  5. that's an interesting board you linked to, steve.  thank you.

    i'm sorry to say that i can't tell you anything about cymbalta and busting, for a variety of complicated reasons.  it's not that i don't want to; it's just that i don't really know anything.


  6. Brad, your tough decision about the legalities is of course yours alone to make. Psilocybin and LSD are "Schedule I" drugs, so even obtaining them is not without risk, whereas  Seeds/LSA are "Schedule III."   Since the seeds are lawful to buy and possess, as someone here once said you would have to go pretty darn far to be apprehended for preparing and drinking them in your own home -- maybe inviting a law enforcement official in to watch you doing it would be the only secure way to get arrested.

  7. my daughter also typically gets relief from ch when she has any kind of cold/virusy thing.  there was a thread about that some time back, with some people saying yes and some people saying no to having experienced that kind of connection.

  8. brad, maybe some of the information here about oxygen (O2), including a study reported in the Journal of the American Medical Association, will help your neighbor doctor reach a quick and helpful decision.  virtually every single person here will tell you that oxygen is an essential, probably the essential, part of their anti-CH arsenal.  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790

    here's the report about busting with seeds that got us off the dime to try it: http://www.maps.org/research/sewell_2008_aha_lsa_poster.pdf

    although that poster is about HBWR seeds (Hawaiian baby woodrose), most people here prefer RC (rivea corymbosa), for a variety of reasons.  RC is legal to buy and to possess; it's just unlawful to prepare and drink it.  you're in a perfect position to bust right now, not having used any meds lately.  strongly recommend you order some seeds now.  if you don't use 'em, you're out maybe $25; if you do decide to, you're ready.  plenty of places on the internet sell them, including www.iamshaman.com and www.psychoactiveherbs.com.

    and i'll repeat my strong recommendation that you start the D3 regimen.

  9. anthony, i was hoping that someone more knowledgeable than me might answer this.  hopefully, that will still happen.  what i can tell you is that some people here have reported some success with busting while still on verapamil.  but i don't recall (a) what level of verap they were on while busting or (B) what busting agent they were using (since you are asking specifically about seeds).  i do recall that when people reported that success, they were achieving a reduction in attacks and the severity of the attacks, but not complete remission.  not much help, i know -- best i can do and i figured some kind of reply might be better than none.

  10. welcome, brad. as bejeeber says, a "cure" of some sort is coming pretty soon, between goadsby's work and the likely release of BOL-148 in the next year or two.  there's no way your kids are going to have to deal with what generations (centuries) of people have had to suffer.  and, as ting and jeebs say, busting will probably get you through until then.

    can you tell us a little more about what you're now doing?  is oxygen helping you?  are you using meds (imitrex, verap, etc.)?

    right away, you might want to consider starting the vitamin D3 approach that has helped a lot of people.  it's simple, inexpensive, and safe, and seems to provide some significant relief for many and even full relief for some.  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

    and, hey, you can look forward to next year's clusterbusters conference, where you'll get to meet a whole bunch of wonderful people who share your condition.

  11. the last two is both times he ate asian food

    Well . . . in general, people don't find much correlation between food intake and the overall presence of CH, although some foods can be triggers (e.g., chocolate for some people).  And some people have said that very strict additive-free diets have put their CH into remission.  But in general, as Bob Wold often reminds us, CH has been around a lot longer than some of the things that we look to as possible causes.

    HOWEVER, since your son's "CH" is so unusually sporadic, and you have these two data points, you might take a second look at that "Asian food."  MSG (monosodium glutamate--often found in many Asian cuisines (and elsewhere, of course)) gave me severe pancreatitis. It took almost five very painful years to figure out that connection, because it was (and generally still is) unknown to doctors. So there's an off chance that his CH-like symptoms just might be caused by MSG (which is why I put the CH in quotes up there).  You have to look closely for MSG, since it's in a lot of things, but maybe that would be worthwhile.  A lot of college kids eat a lot of ramen noodles (cup o' noodles-type stuff), and that is laced with MSG, and so are some pizza toppings (the sauce and things like pepperoni and Italian sausage).  In my case, for many years I had minor gut pain after eating MSG (as I later figured out) in things like ramen noodles and Roundtable pizza sauce, and then one day I guess I just had had too much and the pancreas couldn't take it any more. So it was kind of a cumulative thing and then it became full-blown.

    If your son had more "typical" CH I wouldn't be suggesting this, but in his unusual case it might be, as I say, worth looking into.  MSG is a known cause of very severe, even excruciating headaches, and some specialists say it's a leading cause of migraines. Here's just one article about that: http://www.cbn.com/CBNnews/107774.aspx

  12. Doug (hope you can hear me), a kind of weird problem: When I click on the first entry here in the "board topics" part of the General Board, which is a reply from you to the "him 21 years (etc.)" thread, I get this message: >>You must be logged in to access this section. If you do not have a message board account, please click the 'Register' tab above and create one.<<  Makes no sense because I am logged in and can access everything else, including other messages in the General Board/Board Topics section; and of course because I don't have to be logged in to see anything on this General Board, anyway.

    Thanks for being on top of this.


  13. b.g., since this is your first dose, you can't expect too much, except maybe some post-dose hits (odd times and/or unusual strength) and then maybe a little gradual clearing.  this changing midwest weather isn't helping any, as you say.

    you really should give it the full five days before the next one.

    were you very nauseated when you first took it (since you mention leftover nausea in the morning and a bad night's sleep)?

  14. 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.

  15. 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.

  16. 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.

  17. 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.)

  18. 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.

  19. 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

  20. 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.

  21. 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.