CHfather

My daughter is in her cycle right now (3-4 weeks into it), and she experiencing some symptoms that I haven't heard/read about. She's having stronger shadows than she's had in the past, and today the CH side of her face is very red and feels sunburned. She also gets occasional "lightning-bolt" pain, lasting just a very brief time (less than a second)-- the kind of pain that I think of as being typical of trigeminal neuralgia. She doesn't have oxygen (I know, believe me, I know!!) and she treats her CH attacks by blowing cool air from a fan onto her CH side, or using ice packs. She says that it works really well for her . . . but I guess I'm wondering whether maybe she's somehow irritating the trigeminal nerve by doing that, and that's what her symptoms are about. Anyone get those symptoms? Any comments? Thanks, as always.

Thanks so much, Cindy. Powerful stuff. And, as d'maker says, a powerful doc. How'd you find him? Is he someone that other people with CH in the Northwest (or anywhere) should consider seeing? (And, yeah, as Bob asks, how'd that drip work out?) I guess this is the kind of thing I was wondering about yesterday in a post at another thread, where I was speculating that maybe busting takes longer (more doses) for people who don't have oxygen (or some other effective non-blocking abortive) than for those who do. It kind of makes sense to me that maybe the neuronal pain pathways become "facilitated" (work faster and "better"--better in a bad way, in this case) each time there's an attack, and so it's harder for busting to negate those pathways. This might be crazy talk on my part-- they might be completely different things, what happens in the brain's receptors and what happens along those neuronal pathways. Just throwing out a thought if anyone wants to chew on it.

TO, I'm sure many people have read this and, like me, have just thrown up their hands without having any idea what to do, particularly since real detox for busting seems so improbable. So I'm just throwing out some thoughts here. I suppose the D3 is the best possibility. I suppose you have noticed that Batch is now recommending a very heavy early dosing of D3 for people who are quite low -- a supplement of as much as 100,000IU per week, as I recall. Makes sense to me for a relatively healthy person (heck, the woman who cuts my hair takes 50,000IU per day all the time), but who knows what effects there might be for this fellow. Cortisone daily since 1999!!! (I guess we all might think that at some point that started hurting the CH as much as it helped, but it seems his withdrawal from it has been tough.) Looking at this as carefully as I'm able, it seems like the pred and the Relert are the only things he's taking that would definitely block busting, since some people have been able to bust with some success while on verap. I wonder whether the intranasal ketamine that Ricardo and someone else (diamondmaker, I think) have discussed, might be tried in place of the Relert. Might work better and, if I remember correctly, doesn't seem to block busting. I know you're a fan of licorice root, and so I assume you considered that and decided it might be risky given all his other symptoms. Sorry -- that's all I've got.

It makes me really sad to see you guys, Serg and Purp(s), having such a hard time. If I'm correct, neither of you has O2. I'm sure that Purp doesn't, and what I remember from Serg's threads is that you were close to it a couple of times but didn't ever report that you had obtained it. I'm not going to recommend it again, because you both know how important I and virtually everyone here think it is. I wanted to mention that I have heard two other accounts now of folks who had good success busting while they were on O2, and then, when they didn't have O2 (lost insurance), found that busting took a lot longer to take hold (4 or 5 doses instead of two or three).  This is nothing but the anecdotal kind of stuff that we come up with here that makes one wonder whether there's a larger pattern, so I'm just wondering "aloud" whether there might be anything about having O2 that somehow accelerates busting (or about the lack of it that decelerates busting). In any event, I so hope that whatever each of you does next will work for you.

The first thing I ever saw about busting, before I found ClusterBusters, was Dr. Sewell's poster about the effectiveness of RC and HBWR. I emailed him to ask for more information, and I probably contacted him ten more times over the course of a year asking for additional help, guidance, or information. He always wrote back to me, always gave me his best shot about whatever I was asking about, always CARED. I had so much respect and admiration for him. I feel like I have lost a friend -- and I know that everyone with CH has lost a friend, whether they knew him or not. What a tragedy. What a tragedy. Jerry

Over at ch.com, there's a post about a guy who has been in long-term remission since taking an antipsychotic, Latuda. I mention this for two reasons: (1) the characteristics of his initial remission are much like the "slapbacks" associated with busting (see pasted part from that post below); and so (2) I figured maybe the interested folks here, like Ricardo and Purple, might be able to see whether there's anything about the mechanisms of action of this particular med that would possibly either make it emulate busting or that might shed light on why busting works (what receptors, etc.) I fully realize that it could be coincidence or it could even be BS . . . just thought I'd mention it. The post is at http://www.clusterheadaches.com/wwwboard2/index.html, and here's the main substance of it: >>>>My husband, 46 and otherwise physically healthy, has suffered from cluster headaches since age 11. He's seen all the specialists and been prescribed all the typical (and some atypical) medications, to no avail. - We'd even considered the 'magic mushroom' article we read as a possible treatment for his severe clusters, some 'mega-clusters' lasting six weeks. Then a new doctor prescribed him Latuda for mood disorder. He was about two weeks into a mild cluster when he began taking the Latuda (40mg at first, eventually dosed up to 80mg). The headaches started acting funny - coming at different times of the day and in different waves than before...wobbling - within about a week of beginning the Latuda, and within two weeks had disappeared altogether. We were uncertain whether the medication was the cause of this, as maybe the cluster was just a mild one to begin with, and would be back promptly as always. That was nineteen months ago. He has not had a single twinge of headache in 19 months - the first time in more than thirty years he's gone more than 6months without a cluster. As this is the only thing he changed/added/supplemented during that time, we are convinced that this medication has somehow blocked his headaches. The doctor says he doesn't understand why it's working in this way, but it seems to be a 'happy bi-product' of the mood stabilization.<<<

jimmy, more on intranasal ketamine from Ricardo and diamondmaker here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1374121712/3#3

RC seeds in the UK: http://www.allsalvia.co.uk/

Karen, in response to your previous post, Purple listed a number of things. I summarized and slightly expanded on some of them (with some further additions here): >>OXYGEN, if you don't have it, is a MUST. If it once worked for you but now doesn't, there are many things you can do to get it helping again. Let us know where you're at regarding oxygen (O2). The energy drinks Purp mentions are taken at the first sign of an attack. For some people "energy shots" are preferred (5 Hour Energy, 6 Hour Power, etc.). Some people use just strong coffee. Many people find that melatonin at night (assuming your attacks come at night) reduces severity of attacks. Starting with 6-9 mg, some people work their way up to 20 or even 30 mg. I am partial to Trader Joe's brand chewable melatonin, which comes in much smaller dosages but is absorbed more effectively than tablets. (Other places sell them, too.) With those, a person might start with 1 mg. But that's a personal preference of mine based on very limited experience. <<< In terms of vitamins, many people eventually get a lot of help from the "vitamin D3" approach, and you probably should try it, but if you've already started your detox it probably won't kick in fast enough to help you in the next few days. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 K'D, you're going to need help from some or all of these things. It's not likely that one bust will work any miracles, so you're looking out at 10-15 days. Oxygen is most important, but the other things can also help.

 Ricardo, I'm sorry that I seem to have missed--or not paid enough attention to--discussions of this before. You find this preferable to trex as an abortive? Works faster? Less side effects? Or just easier to administer? Is it on the "approved" list of CH treatments, so that a doctor could comfortably prescribe it? Thanks.

I am so completely filled with admiration and awe for the person in my life that I support that I can't imagine anyone feeling differently. It can be very tough being a supporter and watching someone you love go through what they go through, and I can see how that could sometimes get manifested in negative ways (frustration or even anger). But if being a supporter doesn't put your own "problems" into a whole different perspective, then I gotta say there's something wrong with you.

Great stuff! I am sooooo envious of this skill! To the moon, Alice.

No need for me to say much more than Purple already has said -- and I'm also not a shrooms expert. Dallas Denny, who is an expert, recommends these videos (and, as Purp says, you'll get lots of advice here): The preferred site for spores is Ralphster's: http://www.ralphstersspores.com/ Since growing takes time, many people (as Purp says) use RC seeds, which are generally very effective. In addition to Tranceplants, some folks are very fond of KT Botanicals: www.ktbotanicals.com If you're in Europe, allsalvia.co.uk is considered a good supplier. OXYGEN, if you don't have it, is a MUST. If it once worked for you but now doesn't, there are many things you can do to get it helping again. Let us know where you're at regarding oxygen (O2). The energy drinks Purp mentions are taken at the first sign of an attack. Many people find that melatonin at night (assuming your attacks come at night) reduces severity of attacks. Starting with 6-9 mg, some people work their way up to 20 or even 30 mg. I am partial to Trader Joe's brand chewable melatonin, which comes in much smaller dosages but is absorbed more effectively than tablets. (Other places sell them, too.) With those, a person might start with 1 mg. But that's a personal preference of mine based on very limited experience. Finally, the search bar at the upper left on the page can help you find good info pretty quickly. That doesn't mean don't ask -- PLEASE DO! -- but it can also help you.

Did your doc fax the prescription to a specific O2 supplier? If so, it could be that if you contact the supplier and tell them you have CH, maybe they'll know enough to realize what you need. In our case, we sure got more empathetic treatment from the O2 supplier staff than from the doctor. We had to educate the staff, but at least they cared.

Wow. Big step for you, Brad. Wishing you the very, very best success.

didg, if you type sphenopalatine ganglion into the search bar at the top left of the page, you'll find some threads where this procedure is discussed. here's one: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1295122470

But you have it. That's a terrible loss.

 For absolutely no good reason that I can think of, except that I completely love the song, dt's tag reminds me of the great Warren Zevon's swell song, "Monkey Wash Donkey Rinse," covered here by the also-great David Lindley and Ry Cooder. '>http://www.youtube.com/watch?v=XY2CZ0GYUHY

I don't have CH myself, d. Like you, I'm the parent of someone who has it. All I know about melatonin and licorice root is what I've read here and heard first-hand from sufferers. Plenty of reports of both licorice root and melatonin helping . . . but not always, of course.

A lot of people with CH have had teeth removed and other jaw procedures done without any benefit. So that's a caution. But apparently in some cases (or that one case, anyway), it might have been the answer. If he decides to have any dental surgery, check back here, if only to be sure that the anesthetic that's used on him is not of the type that worsens CH pain.

just to be clear, didg, what you want is licorice root. it's a liquid, sold in natural food stores and places like that. homeopathic. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068 dr. kudrow is pretty well known here. he seems like a good, caring, imaginative, knowledgeable guy. if he has anything new to offer, i'm sure you'll let us know. at least, i suppose, he will prescribe oxygen, which is a good thing, and maybe he'll convince your son to try some other things.

This is just a thought based on one person with CH who uses Trader Joe's brand (Trader Darwin) chewable melatonin. That person takes one pill at night when out of cycle and two when in cycle, and sleeps very well. Each pill is .5 mg (yes, .5 mg). A lot of studies have shown that melatonin is very poorly absorbed in tablet form, which apparently is, or might be, what makes the chewable form more effective. As we all know, what seems to work for a while doesn't always have lasting efficacy, or doesn't apply to everyone, but I pass this experience along in case it's worth anything. I see that chewable forms are available in higher dosages at several places now (Walmart, Walgreen's, etc.)

There's always discussion here about best suppliers, and I don't think there's common agreement, but I would say the two most recommended have been www.tranceplants.net and www.psychoactiveherbs.com. (It seems that the third place that used to be most recommended, iamshaman.com, no longer carries RC seeds.) Dosage recommendations have also evolved over time. It used to be that a small dose of 10-20 seeds was recommended to start with, in order to check for stomach upset and to be careful about tripping. These days, we have seen plenty of evidence that at least 35 seeds can be taken by 90-plus percent of people with neither of those effects. Most people jump up pretty quick to about 60 seeds on a second dose, still without psychedelic effects or nausea, and some go higher still. The key thing is to get above a threshold level of the ingredients in the seeds, which is LSA, and I believe that 35 good seeds will do that for people who are episodic, but more is of course more certain to do that. Point of this being that you would want to buy at least 150 seeds to have enough for three "standard" doses, and 200 or more would be better. Preparation is simple. (Drinking the preparation is unlawful.) You grind 'em up in a mortar and pestle and soak them in a couple of ounces room-temp tap water or bottled water for an hour or two, then drink. There are variations on the preparation and consumption, in part because many people find the taste horrible, but those basics will extract all the LSA. Many people "float test" them first, to be sure the seeds they are using are viable. Simple test that takes a couple of minutes at most. We can tell you about that when you get there. Not entirely sure what you're asking here. Most people wouldn't recommend taking them at the same time, but otherwise there are no incompatibilities in terms of busting. RC seeds are an excellent busting agent. If you go this route, let us know and we'll be sure you do it right. Five-day wait between doses is required, just as it is for paper and psilo.

didgens, I hope this method will work for your son and for anyone with CH, or even for the 4 out of 5 that Dr. Shevel is reporting. In the meantime . . . It is a little disconcerting that nasal imitrex didn't help him at all. I've read back through your posts, and I'm perplexed . . . Does he have oxygen? Is he trying energy drinks and/or melatonin? Is he doing the D3 regimen, or licorice root? You talk about planting RC, and you ask about busting advice, but I don't see it indicated that he has actually tried busting. For that matter, why not step up to injectable imitrex, which seems to work for practically everyone and seems less objectionable in your son's case because he has so few attacks to abort? Or another medical pharmaceutical treatment -- verap, pred, etc? I'm not proposing any of these things instead of the surgery. That's up to him and you. Like I say, just talking about things you/he might consider while he's suffering right now. I can see why, with so few attacks per cycle, he might not have acquired oxygen (though it seems like a good idea now, as the frequency of his attacks has increased) or tried busting. Energy drinks are a quick and easy go-to for aborting (if they work for him), and supplementing with melatonin is easy enough to try. Licorice root (which you mentioned in a post or two) could perhaps be an effective short-term abortive/preventive, and the D3 regimen could be an ongoing thing for him and perhaps prevent or reduce the severity of future attacks (as preventive busting might also do). (It's rare for people with just CH to experience auras -- very few do; it's mostly a characteristic of migraine. But that might not be what your son was describing . . . or, he might be one of the few.) Â

DT, you can also use easy-and-legal-to-buy, easy-to-process, inexpensive, usually-non-psychedelic rivea corymbosa seeds if you can't get shrooms or paper. RC seeds work for most people, and for some, they work even better than the other two substances. If this is a route you might want to go, feel free to ask.