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CHfather

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Posts posted by CHfather

  3. 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"   

  4. 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.

  6. 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

  10. 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.

  14. 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.

  15. 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.

  16. 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.

  17. 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.

  19. Posted

    the oxygen seems to take about 30/40 mins on a minor headache before he comes round and the pain has gone. is this too long??

    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.

  20. Posted

    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.

  21. Posted

    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=1314134804 

  23. Posted

    Anthony, this is what TommyD says in the Clusterbuster Files section of the board: >>Most reports seem to indicate verapamil will block the clusterbuster treatment, though a few say they successfully used tryptamines while on verapamil, and some reports seem to indicate that it impeded, but didnÂ’t completely block, the treatment.<<

    I think that's as close as you're going to get to an answer: a definite maybe.  So maybe you'd want to detox fully, to be sure.

  25. Posted

    One question, is flax seed oil with omega-3 equal to fish oils?

    ypu know, i think it is, but the guy who developed this regimen is pretty insistent that people should follow it as closely as possible.  i believe there are some vegetarians/vegans, for example, who have gone with a vegetable-based Omega-3 product.  it's hard for me to imagine that it would make a serious difference, though i guess the epa/dha proportions might be different(??).  maybe bejeeber, who has thought about this, will have something more useful to say.

    oxygen is crucial -- keep working on that!

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