CHfather

What they said, Elly. What a joy to read this!!!!!!!!!!!

well, jgb, you can see you've come to the right place. the people here are so great that i am touched every time -- whenever someone needs help, they're right there. read the advice you've received, and ask questions. get the seeds. get the oxygen if he doesn't have it (or upgrade his system if it's not working as well as it once did -- see the oxygen page under the MENU tab on the left side of the page). use the energy drinks (or strong coffee). start the D3 regimen (see http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804). read what's in the "clusterbuster files" section of the board. only general thing i can think of that hasn't been mentioned is melatonin at night, starting with maybe 6-9 mg and working up to where it's helping (some people go as high as 20-30 mg). i don't happen to be a big melatonin fan, but there are folks here who swear by it. ask, ask, ask. these great folks will be right there for you, and it will get better for your husband (and you). he's lucky he has you.

Ann -- they prescribed nothing??? First thing you want is oxygen (read the file under the MENU tab on the left side of the page). You should demand that, immediately. Once you've looked at some of the files Bob mentions, particularly the numbered ones about the ClusterBusters method, let us know whether you're interested in busting. (You don't have to be to stay here and get great advice, but if you are, we can advise you). You're probably right at some level that "no doctor can fix this," at least not right now, but there are treatments, pharmaceutical and alternative, that can help. I'd suggest that you read about the "vitamin D3" regimen that has helped a lot of people: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804)

She's in her thirties. They started when she was in college, or maybe sooner, but she didn't seek treatment for them until considerably later (and then had a misdiagnosis for several years). They have some patterns that seem related to the time of year, but they're not "like clockwork" in that regard.

glad you've got kudrow on your side. my daughter's okay, thanks . . . but it's been a rough cycle. jerry

how is your son doing, didg?

Crap. I think you might consider ordering 100 (or even 50) from another site and hoping you get them sooner. www.ktbotanicals.com and www.psychoactiveherbs.com both are considered reliable here. I'm not sure whether either has a quick shipping method. Here's a place that seems to offer priority mail, which could mean that if they ship 'em tomorrow, you could get them on Saturday, or Monday at the latest: http://www.shamanic-extracts.com/xcart/shamanic-ethnobotanicals/rivea-corymbosa/

Denali, if you're going to be in the US for a while and you want to bust, you could order some rivea corymbosa (RC) seeds. They're legal to order and possess (not legal to prepare and drink), and the effects are almost always mild enough that you wouldn't have to worry about any kind of trip, which I suppose for some people could be an issue while staying with family. You'd have to stop the trex, though, and that's another reason why oxygen would be important.

Norm, since you've busted before and been in touch with one of the greats (no matter which Bob it was), these questions are just cautionary, since you don't mention them: (1) You're not on any meds, for CH or anything else, that will block busting? (2) You're aware that you might experience "slapbacks" or "post-dose hits" after your first couple of busts--attacks that are more severe, or more frequent, or at unusual hours? Also: I think you've ordered from Tranceplants, or you are about to order from them. A few times in the past they've been kind of slow with deliveries (usually they're right on it). Since you seem to be ready to bust, you might consider, if you haven't ordered yet, using one of the quicker shipping methods they offer.

Norm, the only suggestion I would make regarding MoxieGirl's excellent file is that 10-30 seeds, or at least the lower end of that scale, is a relatively small dose (MG herself suggests this when she says that she uses 40-50). I think most of us would recommend starting with 30, and if you are okay with the slight possibility of a mild trip, 35 or 40 or more. (As Tony says, 95% of people get no trip effects from those kinds of doses.) Yes, you can work your way up from a lower dose, but since waiting five days between doses is pretty much mandatory, you might be wasting some time with a smaller dose.

with the name denali, i can see why you're drawn to mountains! have you considered getting welding oxygen as the basis for an O2 setup? i know of some places (via google) that are about 20 miles away from harper's ferry, but there might be ones that are closer.

Thanks very much, TO. I've known people with Bell's palsy, but never really thought about it in this situation. Another reason for her to get oxygen and stop messing around.

Appreciate your whole post, Purp. Thank you. About this specific thing I just want to say that for her, when she had it, O2 was a very quick, very effective abortive. I've mentioned at this forum before that it was seeing that "miracle" happen -- seeing the look on her face as the pain melted away the first time she used O2 -- that made me want to be sure that everyone who should have oxygen gets it. People who choose not to, of course that's up to them. I don't believe, though, that any abortive, just in terms of practical effectiveness without side effects (setting aside any other aspects, such as the important "psychological" one you mention), is as effective as O2. Â

Yes, it does. Great to read this.

Thanks, b.g. Nice to see your Tigers doing so well.  As for her and O2: I love her and admire her 100 percent, but still . . . .  :-[ :-[ > > :( :'( :'( :-/ :-/ :-[ :-[

Thanks, Jeebs! That makes sense. Hoping it's something like that. Someone else suggested that maybe her face is chapped from being wet and then having cold/cool air blowing at it for an extended period. While it makes me nuts that she won't get or accept O2 (which she once had and which worked great for her), she started this cool-air thing after I suggested the air-conditioner trick that you often recommend to people in an O2 pinch. She says it's surprising how much it helps her (ice pack burns, chapped face, or whatever aside, I guess).

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.