CHfather

Haven't dealt with shadows -- but am I wrong in remembering that some people use the SPUT method (Small Pieces Under the Tongue) for shadows? 2-4 RC seeds or a small amount of psilo, kept under the tongue where it's easily absorbed. I know SPUT is discussed in TommyD's files, but I looked through a few and couldn't find it. Sorry if I'm dragging a red herring across the thread here.

Kika, sorry you're back. Yes, "post-dose hits" are very common. They usually are stronger than what you've been experiencing, and/or at different times of day than your usual HA. I mention this because you might not be having post-dose hits (or you might); you just might not be using enough seeds to get a busting-level dose of LSA. Prednisone is likely to block busting, according to TommyD's file, where he says >>There are many reports that prednisone will block the clusterbuster treatment.<< http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290130731 Hoping the ONB will work for you. No idea how that might interact with busting. As we have discussed, you've been using amounts of RC that many of us would consider quite small. Not telling you to take more . . . just sayin' that 15 RC seeds isn't many. Were these fresh, or leftovers from 3 months ago? Freshness matters.  But I'm gonna say this again . . . If a person uses enough seeds to be sure they're getting a reasonable amount of LSA from them, seeds are generally considered to be just as likely to work as shrooms are.

Rob, you could try PMing Les if you haven't already. He's always been very generous with his time. As I recall, you did not have oxygen, and it sounds like you still don't, so I'll repeat my/our earlier exhortation to you about that. Also, you could try the D3 regimen (which I'll be happy to describe to you again, if you want). According to Les, it's very unlikely to interfere with licorice root if you go back on that. And I guess you also haven't done any busting, and you're not using any pharma meds such as Imitrex, if I'm also remembering right. Depending on what you might hear from Les and how your HAs go, this could be a very good time to try some seeds or other busting methods. I remember Les saying that the licorice root is out of your system in 24 hours or less. So, maybe plenty of options to completely wipe this thing out. Jerry

Brad, thanks for joining in with this personal experience, which I have seen with others on 600 mg/day of lithium. I just wanted to comment on your remark about RC. It's important for people to know that RC is not any kind of second-class treatment for CH. RC works great for lots and lots of people, just as shrooms do. Bob Wold, who knows as much about this as anyone anywhere, has said the LSA might even be preferable to psilo as a CH treatment. The "problem" with RC is that because the LSA content of seeds varies, it's hard/impossible to precisely calibrate dosages. But, really, people take pretty high dosages (60 to even 100 seeds) without significant side-effects, whether those side-effects are psychedelic or internal (stomach upset, etc.). So the only real issue is to take enough to be sure you're overcoming the effects of any low-LSA seeds and getting enough LSA in the total dose. I'm not recommending 60-100 seeds as a first dose or even necessarily as a later dose --we've had people here knock out their HAs with doses as low as 11 and 15 seeds--just saying that RC is fully effectively for most people, as long as they're not getting too little LSA when they use the seeds.

i'm very glad the vitamins are helping, christina! i'm sorry to say that a 20 cubic foot tank is very small -- as always, others please correct me, but i think this would only be good for treating one or two attacks before you'd have to have it refilled. the larger tank that most people with ch have at home is about 125 cubic feet.

there are several harbor freight locations in and near phoenix, and i think oxygen tanks can also be rented there. this regulator is a bit more expensive than one bought on ebay (about $10-$15 more), but the advantage of getting and using it right away might very well be worth those extra bucks. as i remember from postings here by other folks, this regulator doesn't have a specific lpm gauge, but can be adjusted just based on consistently filling the bag attached to the mask. please correct me, racer (or anyone), if i'm wrong about any of this -- want to be sure christina is as fully informed and prepared as possible. do you recall whether you also need to have/buy a big wrench in order to fully tighten it?

britbike, maybe you've seen this abstract, from 1984: http://onlinelibrary.wiley.com/doi/10.1111/j.1526-4610.1981.hed2104132.x/abstract >>>>Nineteen male patients aged 26 to 67 years have been treated with lithium sulphate in the form of slow release tablets (Lithionit® Durules®) to prevent attacks of cluster headache. Treatment was given to a serum concentration between 0.7 and 1.2 mmolI. Eight of the patients had chronic symptoms and in all of them the treatment resulted in immediate partial remission of their headaches. The average headache index improved within 2 weeks by 85.3 per cent (75–100%). Three patients were treated for between 18 and 36 months. In one of them the treatment was still effective after 2 years, while the other two appeared in due course to become tolerant to the effects of the drug. Both of them, however, had long periods of remission after interruption of treatment, which may indicate that lithium alters the natural course of the disease in chronic cases. In 7 patients with periodic symptoms lithium had only a slight or no effect on the headaches. In four other cases lithium was given for, on average, 19.7 months (6-31), principally owing to psychiatric symptoms. This long-term prophylactic treatment resulted in an almost complete suppression of cluster periods. Two of these patients tried to discontinue the drug after one year. This produced extremely severe rebound headaches after 3 weeks. It is concluded that lithium is efficacious in chronic cluster headache. Lithium has only slight effects in acute periods of cluster headache but may prevent them in some patients when the drug is given in a free interval between two periods. In view of its potential serious side-effects, lithium should be given with caution to strictly selected patients.<<<<< So, if you're chronic, maybe this is something you'd want to try. Does your doc have good reason for thinking you might be chronic? The side effects of lithium can be quite unpleasant, as this says, and then there's the tolerance and the "extremely severe rebound headaches," and having to have your blood tested regularly. Could be that more is now known about lithium, positive and negative, since that old report. I researched it when two neuros recommended lithium to my daughter within the past year, and I pretty much stopped here, since busting seemed to be -- and I believe was -- a whole lot better choice. If you've been lurking, then you can't have missed my broken-record recommendation of the D3 protocol. If you have missed it, or if you'd like me to repeat it, let me know. Also, if you're having only limited success with oxygen, you could try the higher-flow method, and/or perhaps more sophisticated equipment (demand valve; O2ptimask). These things can be very important to get you to the place where you can use the shrooms, if you choose to. I understand it's a tough decision -- something that could help, but with possible/likely significant side-effects and long-term reduction in efficacy (or even severe rebound headaches). And of course, to get to the shrooms you have to detox from meds that are probably helping you. So I'm just providing this as information (which, to say it again, might be outdated).

christina, you're going to have to get advice from someone who has used welding tanks. i'm afraid, only as a suspicion, that the oxygen tanks you found on craigslist are for scuba diving, which would be of no use to you, i don't think. but i'm just not sure, and i don't know whether i'd trust someone's used tanks. you've been working so hard at this, i really hope some help will arrive. i know you had said you are in the phoenix area. there seem to be a lot of welding oxygen places there, which can be found by entering [welding supplies phoenix] (without the brackets) into google.  this link might take you there. http://www.google.com/#hl=en&sugexp=bvre&cp=24&gs_id=1x&xhr=t&q=welding+supplies+phoenix+az&qe=d2VsZGluZyBzdXBwbGllcyBwaG9lbml4&qesig=mTEPNtT7D_xNwxouBXZ3-w&pkc=AFgZ2tlBMQMTReTfAPzqX7MujLvHzE_gXQ0EUsYMeQuM4XeINgWuiGert7lHsEHv29YRSv2_kAfhNeqR6UgEHIuu_2zUagzEVw&pf=p&sclient=psy&safe=off&source=hp&pbx=1&oq=welding+supplies+phoenix&aq=0&aqi=g2g-v2&aql=f&gs_sm=&gs_upl=&bav=on.2,or.r_gc.r_pw.&fp=7caaed5eb0414d97&biw=991&bih=452 from what i have read, the answer to the question "what do you want it for" should be "welding" and the answer to "do you want acetelyne, too?" is "no." i completely screwed up when i was desperately trying to get welding O2 for my daughter. i asked for a 15lpm regulator, too, and the guy just told me to go away. yes, if you have a non-rebreather mask (with tubing), then all you'll need is the regulator (i just got a nice PM from a fellow who had been encouraged to try the D3. he said it had taken a while, but he was now PF (and he was chronic). so i hope you're sticking with that.)

Sorry -- we keep overlapping. Coffee might help. Maybe you could also look for taurine capsules or powder to take with it -- though I'm not sure that will work fast enough. In her early stages, my daughter just ate straight coffee beans, which seemed to help a little. Lots of things can, and sometimes do, go wrong between the writing of a prescription for O2 and getting a proper set-up. You have to have a high-flow regulator (at least up to 15lpm (liters per minute), a non-rebreather mask, and at least one large tank, if not more. In that oxygen file there are some tips about what to do regarding the prescription and the delivery and set-up. Keep us informed and we'll try to help you through the process.

Mysti, You shouldn't have a problem getting the D3 ingredients locally, at a pharmacy or even a grocery store that sells vitamins. Try to get calcium citrate if you can, but "regular" calcium (calcium carbonate) with magnesium and zinc is also fine (you just have to take it with food, whereas the citrate you can take without food). Energy drinks like RedBull are sold everywhere: you want to be sure that what you get is high in caffeine and taurine. In the file I linked to regarding oxygen, there are some articles from major medical journals that you can print out regarding oxygen. Show them to your doctor. You probably should try to find a headache specialist (not just a neurologist) for your next level of treatment. If you're in the US, here's a list of doctors by state who have been recommended by people with CH: www.ouch-us.org/chgeneral/doctors.htm  (Curious thing: Your doc recognizing CH and then apparently giving you nothing for it except "lifestyle" advice. Of course, s/he doesn't have the headaches, and has no real idea how terrible they are. If you're not going to use busting, it seems to me you might as well get Imitrex (the injectable kind), which is very effective at stopping attacks but has unpleasant short- and long-term side effects, and causes rebound headaches, that busting doesn't have. If D3 and O2 (oxygen) and other things don't fully work for you -- although they should and I think they will -- you'll have the Imitrex. Hopefully (and very probably) you're episodic and not chronic, so you can get through this episode and then decide on a longer-term strategy.) The exercise thing works for some people. Very vigorous exercise right as an attack begins. Others may have more to say about this. But oxygen is better, and the energy drinks are likely to work. You're not rambling--you're very clear. And even if you were rambling, everyone here knows what it's like, the fear and panic and shock of having something like this happen to you. It will get better.

There are some people here who say that stopping smoking made a big difference for them, and there many others who have quit and had no CH-related benefits from doing so. I suppose stopping smoking is always a good thing, but I would not say that it has to be a top priority in the short run, especially if it adds to your stress/distress. Much more important: Get oxygen. Try the energy drinks. Start the D3 or licorice root. Seriously consider busting.

Sorry, snuffy, but it definitely sounds like your doctor isn't wrong. But folks here have learned to manage this thing and make it a whole lot less terrifying. Plus, you picked a good time to get CH (), because a reliable treatment of some sort, whether it's BOL-148 or a chip implant or some other amazing product of modern science, is right on the horizon, and also because people with CH have developed some treatments that work very, very well. Thank goodness, too, that you had a competent doctor who recognized CH right away. As you may have read here, so many people have been misdiagnosed and mistreated for so many years, with so much related, unnecessary suffering. On to some things you can do . . .  Your doctor prescribed oxygen, I hope. It's the essential first-line abortive. If s/he didn't give you such a prescription, that's the very first thing you want to address. More info here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790 You might already have read that quickly drinking a RedBull or Monster or some other energy drink at the onset of a cluster headache can stop them or keep them from getting worse. I strongly recommend that you begin either the simple, inexpensive vitamin D3 protocol that has helped many, many people quickly and also lastingly, or the licorice root treatment that also has proven very beneficial for many. Regarding the D3: You take about 10,000 international units per day of vitamin D3, taken with food; 2 or 3 calcium citrate tablets per day, with or without food (ideally, these tablets should also contain magnesium and zinc); and 3,000-5,000 mg per day of Omega 3 fish oil, with food. That's it, except that many people find that a glass or two of lemonade or limeade per day with meals increases the effectiveness. Many people start getting significant relief within a day or two. The levels I listed above are the "default" levels--you might wish to adjust according to your own tolerance. These are not "megadoses"--all are within standard recommended daily allowances except the D3, which is high but not inordinately so. To read a great deal more about the D3 regimen, you could wade through the following thread: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/0  The discussion board where that thread is posted is a very good source of "non-busting" information. You can read about the licorice root method here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068 If you can't use the "busting" method, then you can't -- and I think the other things I've listed here will surely keep your CH in check for now, or even permanently. But it's kind of too bad that you can't bust, because with no history of taking the kinds of pharmaceutical drugs that impede busting you'd probably get very good results from it. As is often said here, if the ingredients used for busting weren't unlawful (in varying degrees) it would surely be the first recommended form of treatment (after or along with oxygen) for CH. Excellent outcomes, no side effects. People here have lots of other tips for coping with CH (for example, know what your "triggers" are -- alcohol, chocolate, and heat being some typical ones). Let us know what you're doing and how it's working and you'll get more advice.

Chris, how are you doing (hoping maybe the "miserable" is an old entry)??? Haven't heard from you since your post ten days ago, unless I've missed something. O2? D3? Anything good at all???

i hope it's the D3 helping, too, christina! that would be cool. (if you want to delete that re-post, there's a button to do so in the upper right corner of your post)

Sounds like you're doing the D3 regimen correctly, Christina -- I really hope it helps you! If the calcium is not "calcium citrate," then you should take all these pills with food (not necessarily all at once, just with food whenever you take them). And you might remember that the popularizer of this D3 method also recommends a glass of lemonade or limeade with meals once or twice a day. Here is a list of doctors in Arizona who have been recommended by people with CH. It's from the website www.ouch-us.org. I'm assuming that because these folks are reported to understand CH, they might be receptive to prescribing oxygen. I know it would mean more out-of-pocket $$, but maybe you could call and see whether they'll prescribe O2 for CH. The good thing about getting oxygen by prescription is that the oxygen supplier should have the right mask and regulator, so you don't have to wait to assemble the whole system the way you do if you're building it from welding-supply oxygen and buying your own regulator and mask (and maybe you avoid some initial out-of-pocket costs, too, but I'm not sure about that). If you do get a prescription, please be sure to read that oxygen page of mine that I've been referring you to, because there's still a lot that can go wrong . . . and often does, in terms of them bringing you the right equipment and setting it up properly. If you stay on top of the supplier from the beginning there's less chance of frustration. Mesa: Dr. George Wang Phoenix: Dr. Joseph R Cohen (DDS) Southwest Pain Management Associates Dr. James L. Frey Barrow Neurological Institute Dr. Alan Hamilton (PCP) Scottsdale: Dr. Constantine G. Moschonas Four Peaks Neurology Dr. Jeffrey D. Steier Tempe: Dr. Stephen D. Chakmakian PCP) Hoping for the very best for you, Jerry

Good for you, Christina! If I'm remembering right, sumatriptan is Imitrex. I'm a little out of my depth here, but I'll take a shot at an answer and let smarter people correct me if necessary. Yes, it will interfere with busting -- you're supposed to detox from meds like this for five days before busting. Is it injectable, or pill form? I think it's widely believed here that the pill form is not very effective. I guess that it would better for you not to use it if your seeds will be there in less than five days. If you don't mind, please tell us exactly what you're taking with the vitamins. Not everyone does this "right." You will want to move ahead with the oxygen, too. While busting works, it almost never works instantly, so you'll want to take several seed doses spaced five days apart. It's likely that you'll still get some headaches during that time -- in fact, what are called "post-dose hits" can be pretty severe (usually only once or twice). They're viewed here as a sign that you are shaking things up after a dose: often they also come at different times than your normal headaches. I'm hoping that the vitamin protocol might help you, but being able to abort attacks with oxygen helps you stay "detoxed" from things that block busting. I have some other thoughts, but gotta run right now. Again, congratulations on taking charge of this tough situation.

Christina, you can have seeds (rivea corymbosa) shipped overnight, or delivered within about 5 days or less. You can use them immediately. They're not expensive. Here are some vendors: http://www.iamshaman.com www.psychoactiveherbs.com www.shamansgarden.com If you do take zomig, though, you might have to "detox" from it for a few days, because it interferes with busting. In section 1 of the oxygen file (http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790) there are links to two articles about oxygen for cluster headaches. If you have to go to the ER again, maybe you should have them printed out to bring with you. Or, Can you go back and show them to the docs there? Chances are they've never seen a cluster headache before and who knows but they might be receptive to this information. (Believe me, I understand how exhausted and frazzled you are, so I'm not saying it's easy to do any of these things, at all. Just trying to think of what might help.) If you go the welding oxygen route, you'll also need to buy a regulator and a non-rebreather mask, which you can't get at the welding-oxygen place (many people order them new on eBay).  The total cost for the two of them would be about $60. We can show you in more detail how to do all this -- I just wanted you to know that there's more to it, practically and financially, than a trip to a welding-supply store. But since oxygen aborts a CH headache within 15 minutes for 90-plus percent of people, the investment and hassle would almost certainly be worth it for you. Nobody minds any questions you ask here, and as you can see there are lots of people who will do their best to help you.

Oxygen is essential. Busting works. RedBull or some other energy drink high in caffeine and taurine helps many people if it is drunk rapidly at the onset of an attack. Inhaling cold air from an air conditioner is a poor but sometimes effective short-term substitute for oxygen from tanks with a non-rebreather mask. Here's a more direct link about using LSA (seeds) as a busting method (the other files there by TommyD are also good): http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974 The link Jeff gave you is very good for finding seed suppliers and other resources. I'd urge you to consider beginning right now the simple, inexpensive vitamin D3 protocol that has helped many, many people quickly and also lastingly. Take about 10,000 international units per day of vitamin D3, taken with food; 2 or 3 calcium citrate tablets per day, with or without food (ideally, these tablets should also contain magnesium and zinc); and 3,000-5,000 mg per day of Omega 3 fish oil, with food. You can find these ingredients in a pharmacy or drug store. Many people find that a glass or two of lemonade or limeade per day with meals increases the effectiveness. Many people start getting significant relief within a day or two. The levels I listed above are the "default" levels--you might wish to adjust according to your own tolerance. These are not "megadoses"--all are within standard recommended daily allowances except the D3, which is high but not inordinately so. To read a great deal more about the D3 regimen, you could wade through the following thread: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/0 Or, you could try the licorice root method discussed here. Depending on where you live, the licorice root extract might be harder to find than the ingredients for the vitamin D3 protocol. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068 Everyone here has been where you are, Christina, or they've had a loved one who was suffering as you are. Today those same people are living lives without pain, or with far less frequent and far less severe pain. Stick in here with us and you'll be one of those people, too.

Wonderful!

Thanks, everyone! (Interesting, kaboom! The phrase "great minds" pops into my head, but I can only say that for your sake I sure hope yours is a lot greater than mine.)  Ting, would you mind saying a little more about what you do with the light therapy (how you use it; what you use)? I could ask you this in a PM, but maybe others will be interested, too. Thanks, Jerry

Gosh, I now see from some further research that there was a time, back in the 1990s, when Dr. Kudrow (CH sufferer, HA specialist, father (grandfather??) of Lisa) actually was thinking about light therapy/resetting circadian rhythms as a treatment for CH. Apparently it didn't go anywhere . . . so now I'm very curious to know whether that's because it just didn't really work to treat CH, or maybe (consistent with my fears) that it somehow made some CH worse, or maybe it was just supplanted by more effective things. I'm remembering that someone here knows Dr. Kudrow -- Do you think we could ask him?

My daughter has awful sleep problems, which we are attributing to her dysfunctional hypothalamus (though there might be other factors). I've been reading about "bright light" and "blue light" sleep therapies that are used to re-set a person's circadian rhythms. Apparently this is a legitimate therapy, since it's mentioned at sites like the Mayo Clinic's and the Chronobiology Lab at a big New York Hospital. Our fear about trying it is that messing with her brain's already-screwed-up (or maybe already CH-causing) relationship to daily and seasonal light patterns might trigger something bad for her. She's been PF for quite a while now (thank you!), but the sleep thing is really messing up her life. Any experiences or general cautions related to this type of therapy? (Yes, I saw that interesting recent study posted by Kyle, suggesting the hypothalamus might not be involved in CH after all, but that's not enough to make me throw caution to the winds in this regard.) Thanks!

Sandy, we're used to tales of Bob's exploits--and I can speak for myself to say I never get tired of hearing about them! He's an amazing inspiration for me and so many, many others. Glad "we" were able to share him with you.

  leslie, i did a small amount of research on the citrate/carbonate issue a while back. in general, i think "batch" is saying (over at ch.com), "this is what worked for me, so why not do it this way?" and that's pretty much the way i've approached it, too.  from my research, there doesn't seem to be a major difference in absorption of calcium whether it's in citrate form or carbonate form, but -- as you suggest -- it seems that the citrate is easier on the tummy and can be taken without accompanying food. it could be, also, that the citrate is more often blended with magnesium and zinc (and often a small amount of d3), and someone (batch, i guess) thinks those ingredients are also important -- but i don't know that for sure.

Yan, according to Batch's specifications, you want to be taking roughly 10,000 IU of D3 each day (with food), and I'd say the chocolate version is not a great idea, especially since chocolate is a CH trigger for a lot of folks. Here in the US, one can get D3 almost anywhere -- grocery stores, pharmacies, etc.--and I'm sure you can also find it on the internet. He suggests a glass of lemonade twice a day with meals. This thread is hard to wade through, but it might at least be worth it to you to skim it for any important information: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/0 Here's a site that I'm pretty sure is in Canada: http://www.tranceplants.net/ (One person here has said she did not think their seeds were very effective for her.) The cost is low enough that if they'll ship before 8/5 (which is the way it sounds) you might just order 100 or 200 now -- but you do still have the detoxing to go through, so maybe you can wait. Couldn't you order from a US-based supplier, such as iamshaman.com (I'm just asking -- don't know the technicalities)? I hope some of this is helpful--I'm sorry your situation is so tough. I take it there's some reason you can't have oxygen at work. Jerry