CHfather

Your freakin' doctor ought to be prescribing it, man, instead of just using you as a guinea pig for f-you-up drugs! Good grief! But, yes, you can also set up the whole thing, easily and relatively inexpensively, without a prescription--lots and lots of people do, using welding oxygen as the basis. Please click on this link and read it: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790 It tells you why your doc should be prescribing it, and it also tells you how to set it up on your own if your doc is such an ignorant a-hole that s/he won't prescribe it. Or call the one of those Louisiana docs in the OUCH list who's closest to you and get an appointment--I assume that if Clusterheads have recommended them, they know that oxygen is the first thing that should be prescribed. There is practically no one here who won't tell you that oxygen is essential for coping with CH. Plenty of folks here to walk you through the step-by-step of setting up your own, too, if it's not clear from that file. One thing that happens here is that people understand what you're going through, because they've been through it or a loved one has. That also means that we freakin' CARE about what happens to you -- you're in the family, brother. I don't want anyone going through what my daughter went through before she got oxygen. Probably nobody here can really help you regarding the various drug cocktails you're taking, in part because most folks here gave them up a long time ago. But oxygen is a fundamental source of relief for 9 out of 10 people who have tried it, and a combination of oxygen and busting (or oxygen and something else like licorice root and/or vitamin D3) is what has worked for most people here. Maybe the oxygen would give you the space to detox and try busting or licorice root or something that doesn't cause you to spend all day noticing awful symptoms and wondering what life-destroying drug you should take more of or less of.

Glenn, OUCH just fixed the link to its list of headache specialists who are recommended by folks with CH. Here are the five from Louisiana: Baton Rouge: Dr. Steven Zuckerman Covington: Dr. Srinivas Ganji Lafayette: Dr.Steven J. Snatic Metairie: Dr. Daniel J. Trahant New Iberia: Dr. Timothy F. Himel I guess I'm going to give up wondering whether you're using oxygen; and if not, why in the world not. . . . Jerry

Kika, others here are much more knowledgeable than I am. I can say that it's not hard to procure rivea corymbosa seeds. Here's the website of a place in Canada, in addition to the one Fun Guy suggested, that offers them very inexpensively: http://tranceplants.net/ (They're under "Shamanic Herbs" (the search function isn't currently working there).) Preparing RC seeds is also very easy, and when used at the levels commonly taken to deal with CH, I think it's very rare to experience any kind of psychedelic effect at all from RC seeds. I have been corrected by experts when using the word "hallucinogenic," being told in particular that LSA does not create hallucinations. I don't know if this distinction makes a difference for you, but as I said, it would be surprising if you experienced much more than a slight "buzz" from treatment-level doses of RC. It's wise to be prepared, of course -- set and setting. As you have probably read, it's strongly advised to be off all typical CH meds -- to be "detoxed" -- for at least five days before taking any busting materials. For some folks, that's a tough hurdle. There are other things important to know about -- typical "post-dose hits," for example -- but that advice can evolve if you decide to go this route. Although some people, maybe many people, find that LSD or psilocybin are stronger medicine than seeds, I know that many people have achieved very good results with RC. Hawaiian baby woodrose (HBWR) seeds are also effective -- they're just much more of a pain to prepare, and some people find them more psychedelic in their effect. If you were to order RC seeds now, you would probably have them by the time your detox period is over. I believe that RC, and oxygen, probably saved my daughter's life. I know that those things have made it livable. For maximum responses, I think you'd be best off re-starting a thread somewhere more noticeable (not tacked on to this RC seeds thread), like as a new thread at this "General Board."

kika, in order to know about more options, you might also want to read about licorice root treatment (here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068) and about vitamin D3, which you can read some about here http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1300245052 You should probably look at the long, somewhat complicated thread over at ch.com that is mentioned in Bejeeber's first post there. Licorice root and D3 have been very effective for some people, and they're things you might be able to try even if you decide to go with seeds or another busting method, while you're waiting for busting materials. I say "might be able to try" because some conventional CH pharmaceuticals interfere with the licorice root treatment. I don't think it's clear yet whether they also interfere with the D3 treatment. Let us know (if you wish) more about you and what you are currently doing re CH, so we can be as helpful as possible.

kika, RC seeds are from the rivea corymbosa plant. When ground up and mixed with water they provide LSA, which helps many people with CH. Spores, on the other hand, are the "seeds" from which mushrooms are grown--in this case, psilocybin mushrooms. A good place to read about RC and other seeds is here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974 That's in the "Clusterbuster files" here. There's a lot more very clear information, courtesy of TommyD, in those files. You might also want to read this for an overview: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865 I know that RC seeds are sold by companies that operate in Canada, so I presume you can legally buy and hold them. Preparing and drinking them is of course a different matter. Others will know more about Canadian laws in general. There are no PsITA here -- only people looking for something to help them or someone they care about. Ask all the questions you have. My first question always is, Are you using oxygen?

too late.

old? heck, i saw ray charles in '63 and dylan in '64. that's . . . gosh, i forgot what i was going to say . . . hold on a second, it'll come to me . . . wait, where am i? where's the bathroom?Â

Thanks, John.

Thank you, sir. Very much appreciated.

i saw steve miller, miles davis, and neil young on the same bill at fillmore east in 1969(!)

I apologize, Jl. I appreciate your concerns about bar status, and therefore very much appreciate your willingness to participate here at all. As I recall, there was a "church" in the 1960s, referred to as the Boo-Hoos as I recall, that declared the taking of LSD as one of its sacraments. A District Court judge rejected its claim to the religious exemption. Long time ago, but then, I was roughly your age back then. I'll bet if one were to read the case, what one would see is that the judge didn't like this "church" (one of whose tenets had something to do with the need to blow up Saturn before it was too late) or its nasty drug practices (big on marijuana, too), and so he found a way to reject an exemption claim that perhaps should have held up. Just as an additional point, it would seem from what you say (which I don't doubt) that "we" wouldn't actually have to form a "church" at all, but each person could just assert his/her private religious commitment to psilo or acid as part of a religious belief system. Probably get the Boo Hoo outcome either way, though.

Jl, may your CH always be so manageable that you can maintain your legal purity! The seeds are not illegal. Compounding and drinking them is a Schedule III offense. If I joined the CH religion, would I have to give up my current religion, which allows me to drive 95 miles per hour whenever I feel like it? Congratulations on being nearly through the law school ordeal, and good luck with the bar exam!

Thanks for the update John! All information -- especially good news like this -- is much appreciated. And of course it's great that it's worked so well for you. I have three questions. When you say you take 3 D3s at 10AM and 3 with dinner . . . (1) What's the strength of each of the D3s you take (1 IU? 5 IU?)? (2) Do you take your 10AM D3 with food (I've read that one should take them with food, since they're fat soluble)? (3) Are you also taking the cal-mag-citrate that's recommended, or maybe a strong multi vitamin that has those ingredients?

I had meant to give you this link to the OUCH doctors page, so you can check it for an LA doc when it's working properly: http://www.ouch-us.org/chgeneral/doctors.htm You didn't answer my question about oxygen, though. I keep thinking that you're missing an important piece of CH-fighting equipment.

I just spelled this mushroom's name with only one "i" and had a fun experience with the subject line, not unlike kaboom's with Dan's moniker. But seriously, folks . . . I just read this elsewhere, and figured I'd ask, silly as the question seems, whether anyone here has tried it or something similar:    >>>I also noticed that since I started eating shiitake mushrooms with a meal at least three times a week, it's been nearly a year since I've had a cluster headache outbreak.<<< http://www.shroomery.org/forums/showflat.php/Number/13806167

Glenn, glad to have a name for you. Mine's Jerry. I remember your vivid early posts, but what I don't remember is whether we ever convinced you to get oxygen and use it. That's one way to potentially test whether it's CH or migraine or something else that you have, since oxygen works with CH but not migraine. Better, of course, to see a knowledgeable doctor at a headache center. I just looked at the place at ouch.com (another CH site) where they list recommended doctors, to see what there might be there in the Pelican State/Sportsman's Paradise -- but they just "updated" that page and it's not showing Louisiana at all. You might check there in a day or two to see if they've fixed that -- or maybe there's someone here who could help you locate a skilled doctor near you.

Les, you devote so much time so helpfully here that I hate to be a nag, but I'm wondering whether you might be able to get around to the question of using D3 and LR simultaneously toward treating CH. Each has proven beneficial for many but not universally for everyone. If they're not contraindicated somehow, it seems potentially advisable to me to use both. Thanks!

Having been away from my computer for a few days, it's all I can do to catch up with so many posts here, so I just wanted to say thanks, t'asian, and to say again that it would be lovely if we could all come together around something, or some things, to put concerted energy behind. I will raise this topic again, probably (again) in relation to the forthcoming conference.

Mystina, some folks over at the ch.com thread seem to be using D3 while using seeds. That's the best I can discern.

How could I resist signing up: It sounds like Surf City -- two girls for every/two girls for every/two girls for every guy!

Les, the basics of the D3 therapy are 10,000 international units of D3/day, 2000-4000 mg of Omega3 fish oil/day, and two calcium citrate tablets formulated with D3, magnesium, and zinc/day. It seems generally agreed as people feel their way through it that (a) the D3 is the essential component, and ( people will find somewhat different dosages more suitable, based on experience. As I read it, I think the 10Kish is recommended during cycle and 5Kish is recommended for maintenance. It's a long and convoluted thread, which can be found here: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/0 Your insight would be much appreciated.Â

Davy, another thing about steroids is that they are a known cause of a very unpleasant condition, called avascular necrosis, in which bone dies from lack of blood flow (often in the knees or hips, requiring replacement of those joints). It's not something you have to worry about, probably, from a few uses, but I believe there are people at this site who have experienced it and would attribute it to long-term use of steroids to treat CH. I had it in my knee. Not fun.

Having guys like Dan and Jeff -- and so many others at this site -- on your side is like going to the Mayo Clinic, rascleo. Great advice, great wisdom, genuine compassion -- only better, because they'll stay with you until your situation improves. I would suggest that you order some RC (rivea corymbosa) seeds right away. It's completely legal to buy them and have them in your home, and they're not expensive. Then you'd have them if you decide to "detox" and try them. Here are some sources: http://www.ethnobotanicals.com http://www.iamshaman.com www.psychoactiveherbs.com www.shamansgarden.com Also, if you decide to move up to a regulator with a higher flow rate, maybe along with an O2ptimask, both of which many people swear by, you can get those at these places. 25 lpm regulator, O2ptimask, demand valve: http://www.lifegas.com/gas_devices_and_therapies/special_oxygen_needs.asp 25 lpm regulator: http://www.madamedical.com/merchant.mv?Screen=PROD&Store_Code=MM&Product_Code=R1... Regular and higher-flow regulators: http://www.floteco2.com/htm/Products/Regulator_Page_&_Images/B-Regulators.htm. A Clusterbusters member writes, "They have ones that go way high (I think mine goes to 60 LPM), and last time I checked they will overnight ship. I had to call them to figure out what would be the best of their regulators to order for my O2 tanks though -- it wasn't clear to me online."

Totally get it. You've done a great job of preparing yourself with knowledge and options. Keep in touch. Let us know how it's going.

Christinauj, so sorry to hear about your suffering, and your mom's! Everyone here can relate to your pain and your fear, and they will help you at least make it manageable, if not defeat it altogether. Yes, as Arcan says, please go back up this thread to my post to Arcan (and read all the posts in this thread, which suggest some other things to do until you get oxygen, such as chugging RedBull). The advil probably won't help a bit -- and neither, unhappily, will any other pharmaceutical pain reliever. You gotta get oxygen, fast! Please read this: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790  I strongly recommend that you start a new thread so that more people will see it and you will be easier to find. But however you do it, post your questions and they will be answered. In the short run, you need to get in touch with your doctor and get oxygen prescriptions for you and your mom. But first, read that file I linked you to, so you know what to ask for--what to demand. Even when a doctor, such as Arcan's, is on the ball enough to prescribe oxygen, they still can mess up the prescription (as Arcan's doc did). The sooner you do all this, the less time you will be spending pleading with God (an experience very familiar to many people with CH).