CHfather

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.

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.

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.

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

Thanks!

http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

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.

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.

 Yep.

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).

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

(Sorry -- I was just meaning to illustrate the DISS vs. non-DISS. I'm very glad you had the sense to know that those would not work with your bigger tanks!) Yes, since you dosed on Tuesday, Sunday would be five days. Some people might press their luck with four days and try on Saturday, but if you can hold out, Sunday is better. I'm sorry I didn't know that you had tanks but not a good regulator. If it's still an option for you, you could buy a regulator at a welding supply store and have something for right now, until you get the one you ordered from eBay (I remember waiting much longer than I thought we were going to have to for the one we ordered from eBay to actually arrive). This one http://www.harborfreight.com/catalogsearch/result?q=oxygen%20regulator, you can get from a Harbor Freight store (I think the closest one to your SI home might be about 8 miles away in Jersey, but maybe you go off the Island to work, or maybe there's a welding supply store out there). It doesn't have an lpm gauge, but you can just open the valve to get a very good flow (and it fits the M tank). If you follow that link above, there's a "store locator" bar that'll help you find the closest one.  Hoping for the best for you.Â

Well, of course you can get high-flow regulators in a lot of places, including eBay. But it is true (as far as I know) that the demand valve has to be ordered for you by a registered O2 provider. Maybe others have a different experience??? If you're going to get a higher-flow regulator now while you hassle with your O2 supplier (if you have one) for the demand valve, you want to be sure to get a regulator with a DISS fitting, which is what the demand valve attaches to, in addition to the barbed fitting that your mask's hose attaches to. Right at this moment at eBay, for example, the top regulator on this page has a DISS fitting, but the one below it doesn't: http://www.ebay.com/sch/i.html?_odkw=oxygen+regulator&_osacat=0&_from=R40&_trksid=p2045573.m570.l1313&_nkw=medical+oxygen+regulator+25&_sacat=0

m-k, i think i remember you saying that you have chronic CH. it does seem to require higher doses of LSA to impact chronic CH. the 60 seeds might be enough--it probably is enough. but if you feel that you are able to go to a higher dose, you might want to try that, just to be more certain that you are getting above the effectiveness threshold.  since 60 seeds probably is enough, you shouldn't do more if you're not comfortable with more (or maybe add just a few more (5?) this time, see how you react to that, and then keep adding in small increments). do you have your oxygen situation straightened out now?

b'man, I think a lot of people have had success with seeds from www.tranceplants.net and www.iamshaman.com.  Ricardo, whose judgment is much to be trusted, recommends this site, though I haven't heard much feedback from others about seeds bought there: http://www.ktbotanicals.com/viable-seeds-c-2.html?zenid=c4m6650jh1ckc01kapbfmjo5.

Red, if you don't have access to psilo, you can consider seeds, which work very well for most people: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974 Also . . . a lot of advances regarding O2 in the last few years. If you're getting that set up again, you should at least consider (a) higher-flow regulator (25lpm or more); ( O2ptimask (http://www.clusterheadaches.com/khxc/; © demand valve system (http://94.100.244.217/gas_devices_and_therapies/regulators%20and%20demand%20valves.asp) Sorry you're back here. Let's make it a short stay with a similarly long hiatus before your next visit.

Hey DG. A sad hello indeed. But you're more ready this time! Get those seeds today and get started, please. Since you've been away, there is more and more confirmation of the great value of a demand valve oxygen system. I know money doesn't grow on trees there, but it's something I'd suggest you guys should consider. '>http://94.100.244.217/gas_devices_and_therapies/regulators%20and%20demand%20valves.asp If not, maybe at least an O2ptimask? http://www.clusterheadaches.com/khxc/ Sorry to say that the news is not great about everyone you asked about. But I'd rather let them fill you in than speak for them.

Very happy to read your update POS, and hoping the good news continues. Here's a European vendor of demand valve systems. http://www.bprmedical.com/ultraflow/oxygen-demand-valve  It seems to me, without knowing too much about it, that they have demand valve systems for all the fittings that might exist in Europe. The company/number they give to call in the Netherlands is Medrott Medical T: +31 (0)181-419393.  Here's Medrott's website: http://www.medrott.nl/ Some small things regarding your mask. As Tucker says, >>It is important to try to not breathe any air other than the pure oxygen.<< This applies also when he is using the mask. The round white thing in the mask is supposed to close when he breathes in, keeping out room air. If it is old or frayed, it might not do that completely. Also, there is often (I can't see this well from your photo) a "hole" on the other side from the white thing, and that hole has no white thing in it. It is left open as a "safety valve." But when he breathes in, room air comes in through that hole. So you should close it off with tape, or put a thumb over it when breathing in. These are relatively minor things, but when you are already working with low flows, it is best to check everything. (He should of course also press the mask firmly against his face while inhaling to be sure he gets a tight seal--Don't rely only on the strap. Many people cut the strap off. Many people with CH love the O2ptimask, which can be ordered here. http://www.clusterheadaches.com/khxc/ But if you are getting a demand valve system, it will come with a mask. A final small thought. I see that the demand valve comes with 3 metres of tubing. I'm not sure that would be enough if he needs to keep walking (pacing) while using oxygen. You might check to see whether they would include longer tubing.

It's very painful to read about this experience, Pos. We've all been there, or close, as sufferers or as supporters. We can hope/pray that it's severe slapbacks, or that experienced shroom users here will notice something to do differently. I just have to comment about the oxygen. 10 lpm is at the very lowest edge of what might work. Many people here use 25 lpm and even more, and I think most would consider 15 lpm the minimum that's likely to be successful. Because it's 10 lpm, I'm wondering whether you have tanks of oxygen, or whether what you have is a "concentrator," which is a machine that makes oxygen out of room air. A concentrator is also not a good way to get oxygen; it's ineffective in many ways. I'm not sure what the inhaler means, but if it suggests that his lungs aren't really processing oxygen with full effectiveness, that would argue even more for the necessity of a much better way of getting oxygen. A better oxygen system might also help combat some of the later attacks (sometimes it's effective as a short-term preventive of attacks that occur the same day or night). Has he tried energy drinks (RedBull, Monster, etc.) to at least take some of the edge off some of his attacks? Many people find that an energy drink just before the oxygen helps it work faster. Some people here might have suggestions for how to make a 10 lpm system more effective, but I think you need to look into a better system, too. I remember that in some European countries the regulator is actually built in to the tank (if it's tanks that you have); in other places you can purchase a higher-flow regulator to replace the one you have, or even a "demand valve" system. Please let us know the details of the oxygen. If you can post a photo of the mask he is using, that might also be helpful. With very best wishes for better days, Jerry

Vickle, assuming that you can get off those meds sufficiently to bust (and we are increasingly hearing of people who have success busting while on verapamil, though probably at lower doses than yours), there's still the matter of growing your mushrooms. If you can successfully do that quickly enough, the timing might be great, but if you're ready to bust and you don't have home-grown mushrooms, are you considering other options, such as RC (rivea corymbosa) seeds? These seeds work very well for many people, including people with chronic CH. You can read more about them here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974 And, to be sure you're aware of at least some of the potential interactions between your meds and busting, you'd want to look over this file, if you haven't already: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290130731 As Jeebs says, I'd also recommend a google search such as [discontinuing lithium], to be sure you have this process well in hand. (A warning: When lithium has been used to treat CH, discontinuing it has sometimes led to fairly severe rebound "headaches.")

A side question to this thread: Jeebs (or anyone else), have you tried the chewable melatonin from Trader Joe's? Anything to report?

Smart guy, too, that Ricky (Desi Arnaz). When "I Love Lucy" started, he negotiated to buy every episode from CBS at a very low price, so that his and Lucy's company, Desilu, earned all the money for all the reruns. Desilu created and produced other series that included "Star Trek," "Mission Impossible," and "The Untouchables."

Jeff, there are a lot of posts about amitriptyline/elavil over at ch.com, and a pretty amazing range of experiences, from "didn't do squat" to "knocked out my CH for three years." Here's a thread from 2008 that has the whole range (including a post from our own Mystina): http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1225150917 Also, dosages varied very widely, and it often was prescribed along with something else, seemingly most often verap (and from my scan it seems to have been in combo with verap that it worked best). Seems like "made me a zombie" is also a fairly common complaint.  The overall sense that I got is that the more "standard" meds have been found to work better, with less drastic side effects. I'm pretty good at googling, and so I also did an internet search looking for any tests of amitrip for CH, or medical recommendations of it for CH, and didn't see anything. Didn't push it to the limits in terms of searching, but went pretty far. Migraine and tension headache, yes. Maybe there's enough good stuff over there at ch.com to suggest it's worth trying. Seems the effective dose is higher than 10 mg, though. Many strong recommendations to take it at night to reduce the side effects. Hope it gives you some good results. Jerry

Sorry, Jeff. You're such a hero here, I know lots and lots of people are sending you positive vibes.

You can read Oscar's posts by going here http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?action=viewprofile;username=714D5D5F4C3E0, scrolling down the page, and clicking on "See the last [40] posts by Oscar."Â Change the [40] to 120 if you want to see all his posts. If you go here http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?board=files and scroll down the page, you'll see the key files that Moxie mentions (including the file "Shutting the Door"), plus several others you should read, including the important one called "Playing Well Together."