CHfather
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Posts posted by CHfather
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Ya know, b'man, just sayin' here . . . You might also be responding positively to your three busts. The worst slapbacks are usually after the first two busts and maybe a little after the third one, and that's kinda exactly the timing of your recent break. I see davidj saying that your slapbacks have been rough in the past . . . maybe this is a similar pattern? Not sayin' it's not the zomig . . . just maybe something to consider?
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I'm also curious, lbh, about what problem you're trying to solve. It sounded from your first post like you have a tank but are frustrated with having it run out and then waiting for it to be replaced by an oxygen supply company. There are ways around that problem, including: (1) Get your O2 supplier to give you more than one large tank, which many will do; and (2) If your O2 supplier is completely unwilling to give you more than one tank, supplement your supply with welding oxygen. I don't think (could be wrong) that you can buy a concentrator without going through an O2 supplier, but even if you could, I'm puzzled about why you still seem to be considering this option.
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Elly, I'm sure everyone here, sufferer or supporter, knows where you are coming from. And that means we can celebrate with you and Jan for his recent better days, and commiserate with you for all you and he have been through. Now that you have an oxygen system that works and you know about busting, you and he can imagine a better future, at least.
If it wasn't for the people here and their kindness and courage, it's hard to imagine how much worse life would be, because, as you have said, even friends and relatives don't seem able to really understand CH or hold in their minds how painful it is; doctors, even though some of them might try, aren't really able to help much; and the dynamics between sufferers and supporters can sometimes be challenging.
It's been said here more than once how different the world would be if everyone in the world could just experience a week, or maybe even a day, of CH, and if they never knew whether they were going to get hit again or not. Researchers, politicians, doctors, friends, employers . . . everyone would be a lot more interested in a cure, or at least better treatment, than they are now.
Again -- thank heaven for ClusterBusters. For the brave and committed people who started it, for the good folks who stick around to share and support, and for its work toward understanding and treatment.
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ricardo,
yes (for me), when i try to go to clusterbusters.com through the address bar, i get those same messages. if i come here through my existing bookmark--no problem.
HEY Ricardo . . . I was waiting patiently for the correct day (yesterday) to send you birthday wishes, and then I forgot.
Hoping it was a good one, and very grateful for all you contribute here! -
Sorry Brad!!! From what I've read, topamax is preferable to carbamazepine/tegretol in terms of side effects . . . but far from side-effect free. I think in these situations it's a matter of which you like least, CH or topamax side effects (assuming that the topamax actually works, and assuming that you still don't want to consider busting).
While you're waiting for your O2 to come through, seems like you ought to at least consider ordering an O2ptimask (http://www.clusterheadaches.com/khxc/), and maybe a 25-lpm-or-higher regulator.
Hoping things get better fast!
Jerry
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Since spiny hasn't replied yet and it seems Jan is using the oxygen a lot, I will put in my two cents worth and hope that spiny or others will correct and expand. I do not think that with a 12-15 lpm flow rate (if that's what you still have), even with the larger bag on the O2ptimask, you can actually hyperventilate completely. But the principle of hyperventilation is to get as much stale out out of the lungs as possible, and as much O2 in as possible. So, a very full exhale at the beginning, followed immediately by some kind of action that forces even more air out (such as pulling in the stomach muscles and/or coughing), followed immediately by a deep inhale of the O2, is the general idea. Some people suggest that this is best done standing up -- but of course if he becomes dizzy or lightheaded at all (which would be expected), he should sit down. True hyperventilation, as practiced by many people with CH, generally causes a feeling of tingling or slight numbness around the lips or in the fingers or elsewhere. This can come on pretty quickly -- and it also goes away pretty quickly once the hyperventilating has stopped. But it can be kind of frightening . . . and I'm a little concerned that with the many kinds of meds Jan has taken, and all he's been through, and the large amounts of oxygen he is using, maybe it would not be a good idea. I'm not a doctor -- just speaking out of concern (and as I've said, I don't think you really can hyperventilate effectively at 15 lpm or less with the O2ptimask bag). My sense would that for now he should just follow the principle of forcing some additional air out of the lungs on the exhale, and then immediately breathing in deeply on the inhale. I would be a bit cautious about this (just me saying this), and, for now, keep trying to find a style of breathing that works well for him without overdoing it. As he feels better and stronger, he could try the more extreme forms of breathing if he is inclined to. Like I say, just my opinion.
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b'man,
spiny's advice is, as always, completely sound. I would only add that since you have used psilo, a high dose of RC is probably not going to cause a trip you can't handle. Really, the relatively low initial doses are based on making sure no one has any bad psychological side effects (possible stomach upset is also a consideration, but not one that's worth shortchanging yourself on LSA). So far, I have only read here of one person having any kind of significantly "trippy" experience with up to even 70 seeds. The vast majority of people have no psychedelic effects at all, even at those levels. So if you're okay with the remote possibility of some kind of trip that will still probably be nothing like the psilo experience, I'd go with 65 float-tested seeds. You know the float test? Put them in water, stir to release any that are stuck to the sides of the glass, and use the ones that SINK. Pat them dry before you crush them. Although some people use a coffee grinder for the grinding, I would personally recommend a mortar and pestle or a hand-turned spice grinder, if you have one of those things. If you use a coffee grinder, I'd recommend very quick pulses with some time in between. (Heat damages LSA.)
Very best wishes for success.
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If they're slapbacks, they should start decreasing with the third dose, probably regardless of size. I don't think anyone knows whether a lower dose would result in less severe slapbacks--but maybe someone does. My own opinion is that 45 tested seeds should be a large enough dose for someone like you, with episodic CH.
Just grabbing at straws here. . . . There's been some "heated" discussion here about the coffee grinder. There was a time when it was considered a bad idea, even a non-no, because of the heat it generates, since heat harms LSA. Other methods for grinding seemed to be preferred, like a mortar and pestle or a hand-operated spice mill. Some successful busters have said they use a coffee grinder, and you can't really argue with their success. Their position was that all you need is a couple of quick pulses, and that doesn't create much heat. You can make your own decision with that info in mind.
Gosh, I so hope it gets better for you.
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RedDog, really hoping that things settle down. Most likely, you are experiencing post-dose hits, which take a lot of forms, although I admit that the form you're describing is not one I have heard about before. Please do let us know how things are going. If you're feeling up to it, could you describe how you prepared the 65 seeds. I know you say "as per the directions," but there are so many "directions" out there. Mainly, hoping you are feeling better.
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Jeff, I remember that both kaboom and tingeling have recommended the taurine supplements. This is from a 2011 post by Ting:
>>>>I use Taurin capsules every day. Every morning i wake up having a hit, first thing i take one capsule Taurin along with 0.7 l of water, then i drink one cup black coffee and more water. On a bad day, i drink one Red Bull as well. This i do before i even dress. Then it`s O2. During the day i keep my blood sugar stabile,eating whole grain foods and vegetables, non refined. Somewhere beetween 12 and 15, i take one more capsule of Taurin. Everyday i do this, having one or two h of exercise as well. It doesn`t make it go away of course, but it helps too keep it under control. And you benefit from it as well.<<<
Hope this helps!
Jerry
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Now I'm thinking that he's not only chronic but periodic too, is that even possible or am I just desperately guessing?Â
POS, Yes, most people with chronic CH seem to also have cycles within the chronic pattern. There is an article about that by Dr. Andrew Sewell (a CH researcher), but for some reason his website is now blocked and I don't know where else to find it.
I really, really hope the morphine helps . . . for most people, it doesn't do much more, if anything, than take some of the edge off the pain. I don't know whether waiting just one day after taking it is sufficient for busting.
I wonder whether he would be a candidate for the procedure that is discussed at this thread: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1352734527
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There's no indication that the "D3" approach interferes with busting. Be sure that you do the whole thing, as laid out by Batch.
More than anything else, it seems to me that melatonin works very well for some people and not very well, or not at all, for others. Spiny, Jeebs, and others can give you better advice than me about melatonin.
I think I remember that you've been using RedBull. If that's not helping, or helping some but not enough, you could consider something, like Monster, that has more caffeine/more taurine. I know some people swear by their Monsters (the three ounce "Monster Hitman Sniper" has three times as much caffeine as an 8-ounce RedBull; and several Monsters have a lot more caffeine and taurine than RedBull). You might have to do some label-examining if you want to go this route: RedBull is typically 80 mg caffeine and 1000 mg taurine. Just a thought.
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Thought #1 is to write to Tranceplants right away and say your order hasn't arrived. You can just reply to the order confirmation they sent you. Tell them (if you want) that you're a member of ClusterBusters; in the past they have been interested in creating a good relationship here.
Thought #2 is maybe get some seeds overnighted from iamshaman or somewhere else.
#3. The "D3" has worked well, and even very quickly, for some people, but for most it takes a week or two or more to be effective, and for some (25%?) it doesn't seem to work at all, or at least not without major fiddling. So my thought about it is, no reason not to try (since it's probably good for you anyway), but not a substitute for busting. As for your research, I see that ch.com thread I linked to in my D3 file has now grown to 43 pages. Batch started a new thread (http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1324046404) about a year ago, and it begins with his "official" D3 method, so that might be a place to start. Â
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Many thanks to all the great-spirited, life-saving folks here.
Jeff, when you knock this ba$tard out, I'm going to hold a whole new day of thanksgiving. Your suffering is our suffering, and your happy relief will be ours, too.
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Thank you for the compliment, POS, although I can say with no false modesty that everything I know about O2 I learned from other people here.
I hope you get that O2ptimask soon and it helps. Meanwhile, please consider this advice from spiny from a previous page of this thread:
>>>Until you get a higher flow you could try this: Remove the bag from the mask. Close a trash bag, unscented, tightly with a rubber band or tape. Now cut a small hole in a corner and attach it where the original bag was attached, using tape. Turn on the O2 and let the bag fill up. During this time, hit the energy drink. Start breathing the O2. The larger reservoir will allow for deeper, faster breathing. When the bag gets low on O2, drink some more of the drink while it fills again. Repeat. If the original bag is easy to remove (it was on my unit) and reinstall, then you have not damaged the original and can reassemble with no loss of equipment. Might be worth a try for an attack. Just be sure to set it up in advance. And stay on it for several minutes after the attack ends! Just breath normally during that time.<<<
alleyoop said the same thing at another thread, with less detail:
>>>The inadequacy of a 15 lpm regulator is easily compensated for by using a larger reservoir bag. You can take a large freezer bag or turkey bag and tape it securely in place of the bag that is supplied. That way you have plenty of pure 02 to draw from.<<<<
It sounds as though the doctors might have frightened your sufferer a bit about oxygen. Be sure he understands that he'll get the best results if he inhales deeply and more rapidly than his normal breathing, and if he forces as much air out of his lungs as possible each time he breathes out. Not to the point of becoming dizzy, but as close as he can get. If possible, inhale through the nose and out through the mouth.
Aborting them is not as good as preventing them, of course, and we're all hoping that Saturday's dose will at least be the start of real prevention.
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wishing you lots of luck, b'man, and also just curious about whether your RC seeds have arrived yet, and wondering where you ordered them from. i know that tranceplants was one of your options, and i see that heilette has not received the seeds she ordered from them in over a month (and i know someone else, in New Jersey, who experienced a delay, which might have been a result of post-Sandy issues with the mails). would like to know if tranceplants is falling down on the job somehow.
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Wow, heilette, sorry about that problem with tranceplants! This might not be a great answer to your question, but here is a site in the UK that sells seeds: http://www.allsalvia.co.uk/cluster_headaches.htm There was a time when a European ClusterBusters poster said she liked the seeds she got from here.
There are other UK suppliers listed online, such as http://www.potseeds.co.uk/products/81/297/rivea_corymbosa_turbina_corymbosa/ and http://www.alternativemind.co.uk/lsa-rivea-corymbosa-seeds-virgin-p-351.html
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Thanks!
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Would I be a fool to throw in a "What is D3" question?
http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804
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BTW, b'man, if you don't mind saying, I'm curious about how you got your welding tanks (rented or bought), roughly how much they cost, and how much a refill will cost. Just trying to identify some cost parameters, since that's a question people commonly ask about welding O2 and it seems to vary pretty widely.
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Brad, regarding the D3, and just out of curiosity since you seem to have had such good results with it (NO JINX!), would you describe yourself (as I imagine you) as someone who basically eats a healthy diet? Because our experience with the D3 was that it enabled my daughter to quickly re-establish a highly alkaline pH level, which seems to be potentially a way in which the D3 is effective. I'm wondering whether people have better/quicker success are people whose diets are typically "healthy" and whose pH is already more in the alkaline direction.
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If a regulator doesn't have an lpm gauge, do you control the flow by how much you open the handle??
 Yep.
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I WANT A CURE!Not just pain management, but a REAL cure!
Brad, am I remembering correctly that you have resisted busting? Completely respecting your decision in that regard, I would say that most people here think that in terms of ending cycles and possibly preventing them with maintenance dosing, busting is the closest thing to a "cure" that currently exists (or that is currently available, anyway).
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Any advice you could give me on gardening would be weel appreciated.I am a menace to growing anything.
CH-HELL posted some great growing instructions in the ClusterBuster Files area. Here's a link to one part: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1351310098
Here I go again!!!
in General Board
Posted
Me, too, man. It's been hard as heck just watching. I know you are in many, many prayers.