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CHfather

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    A doctor to recommend?

    in General Board

    Posted

    Do you have a doctor youÂ’d like to recommend to others with CH?

    At its website, OUCH provides lists of doctors recommended by people with CH. ThereÂ’s a US list and an international list. You can see them here: www.ouch-us.org/chgeneral/doctors.htm

    This reference has been valuable here when someone is stuck without a doctor who is willing to prescribe oxygen, and we sometimes hear from people who think they have CH but have not yet been professionally diagnosed.

    At our recent conference, I talked with the good folks from OUCH about the possibility that our members might have some names to add to OUCHÂ’s lists. ClusterbustersÂ’ leadership agrees that this would be a helpful service.

    So . . . Do you have a doctor to recommend? Just the name, the city and state, and the name of the practice are sufficient.  If so, would you kindly post it here, or PM it to me or to Racer1_NC (that’s Bill, from OUCH).

    Many of us have had awful experiences with docs; maybe we can save some others from that same fate.

    Thanks!

    Jerry

    New Here But Not To CH

    in General Board

    Posted

    well, 100 is fine, particularly since, as Jeebs says, you usually get more than 100.  but figure a minimum of 3 doses at pretty typical levels of say 30, 50, and 50, and you're clearly over 100.  it's my understanding that they keep quite well when frozen.  so 100 + 50 at www.iamshaman.com, or 200 at www.psychoactiveherbs.com, might be a little safer in terms of a third dose, and it won't set you back too much more than 100.  (if you start at 50, which has also been recommended to you, of course the numbers add up faster.)

    and i'd also second Jeebs's recommendation that since you have some detox time to kill anyway, you should consider hopping onto the D3 regimen right away.  might not/probably won't work that fast, but for some people it has.

    New Here But Not To CH

    in General Board

    Posted

    Look at the top of this board under important topics *Busting Instructions*.

    http://www.clusterheadaches.com/cb/yabbfiles/Attachments/FAQ_LSA.htm

      Personally, I think the LSA file in the Clusterbuster files section here is more useful.  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974

    The author of the one you were referred to says, >>>I suspect that soaking them in wine for 24 hours produces a lot more LSA than those same seeds would have produced if they were soaked in water for 2 hours.<<<   But there is no evidence now that that is true.  Soaking in water works fine.

    Grind the seeds with a mortar and pestle (or smash them in a plastic bag with a hammer -- just don't use something like a coffee grinder that creates a lot of heat).  Soak 'em for 1-2 hours in cold or room-temperature water.  Drink.  Many people drink the sludge, some strain it out, using a coffee filter.  It is highly unlikely that you will experience any psychedelic effects at all with an initial dose of 30 seeds, so that might be where you'd start.  Less if you're particularly wary.

    Re oxygen:  A lot of people love the demand valve system, which lets you breathe in O2 as soon as you're ready, without waiting for a bag to fill.  Or at least a 25 lpm regulator.  Also, the O2ptimask is very highly recommended.  In section 11 of this file you can find places to get those things. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790

    Conference Photos

    in Advocacy, Events and Conferences

    Posted

    That conference was my first time to meet other clusterheads and their supporters and it was amazing to meet all you fine folks. Mj and I had a great time. 

    It was a pleasure to meet you and Mj, also, Lee.  I hope your drive home was enjoyable.  Be sure to check in here from time to time.

    Jerry

    Beginnings

    in General Board

    Posted

    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.

    Beginnings

    in General Board

    Posted

    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?

    Thankful

    in General Board

    Posted

    :) :) :) :) :) :) :) :)  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.

    O2 Demand Valve

    in General Board

    Posted

    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"   

    Thankful

    in General Board

    Posted

    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.

    Same questions, new guy

    in General Board

    Posted

    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

    Best place to buy RC seeds?

    in General Board

    Posted

    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.

    Discouraged but hopeful

    in General Board

    Posted

    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.

    Discouraged but hopeful

    in General Board

    Posted

    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.

    gonna try seeds for 1st time

    in General Board

    Posted

    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.

    O2 bummer

    in General Board

    Posted

    I believe LifeGas is supplying all the O2 we need for the duration of the convention (somebody correct me if I'm wrong). Bring a regulator and mask if you can. 

    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.

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