CHfather

t2b, I hope you are following up on DrTy's recommendations, including his offer to look at your case history. If you don't actually have CH, there's not much point in pursuing CH remedies, though I hear you saying you're willing to try almost anything that might help. However, if you want to keep trying the D3 in a way that is consistent with treating CH, you should look at this file: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804. You will quickly see that you are not taking nearly as much D3 as the protocol recommends (neither is w7, but it seems to be working for him/her), and it appears that you probably are also not taking enough of the other recommended elements. Again -- this might not help your head pain, but since you say it seems to be helping a little, maybe doing it "right" (from a CH perspective) might help a little more. It would be good if you could get a blood test to determine what your current D level is. Wishing you the best -- and again urging you to follow up on what DrTy recommended.

Robert, thank you for sharing this. Imigram is inhalable sumatriptan. Most people with CH get even better results with injectable sumatriptan, known as Imitrex in the US. If you do have cluster headaches, you really want to have oxygen. You inhale it at the first sign of an attack. It's important to get oxygen with a flow rate of at least 15 liters per minute and a non-rebreather mask. Your doctor should prescribe that. You can read more about that at the CB oxygen page, which you can find under the black and white MENU tab on the left side of the page. Many people here would tell you that oxygen is the most important thing you can have. There are many, many other things you can do. Some are relatively small, such as drinking an "energy drink" such as RedBull or Monster at the first sign of an attack. Some are larger but relatively inexpensive, such as the "vitamin D3" protocol that you can read about here: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804.  There are many other pharmaceutical medications used to treat CH. And you should also consider the methods used by many people here, known as "busting." You can read more about that here: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865. If you have questions or further observations, please visit us again.

https://clusterbusters.org/?page_id=77 non-rebreather mask (best is O2ptimask: in Europe: http://headachemasters.com/product.asp?product=3); flow rate of at least 15 liters per minute.      :)Nice catch, Potter. In the short run, while you're getting a proper oxygen setup, try quickly drinking an "energy drink" at the first sign of an attack coming. In the US, energy drinks include RedBull, Monster, and 5-Hour Energy.

Hello Oren, Many people here have had success using truffles. I hope one or more of them will be here soon to tell you what they know. If not, we'll try to go back in the files and see what there is there. After detoxing, you will want to try at least three times before you give up. Some people get results sooner, and for some it could take longer. There is at least one person here who gets very good relief from her migraines, as well as from her cluster attacks, from using psilocybin. (In case it isn't clear, I think Potter is suggesting that if you do not have oxygen to treat your headaches, you should get it. In addition to the link he gave you, you can read the ClusterBusters oxygen file under the black and white menu tab on the left side of the page.)

Many people (not all, of course -- there doesn't seem to be any "all" when it comes to CH) find that they get a good night's sleep for the first time when they start with RC. Have you tried melatonin at night -- some people get some good prevention results, and some better sleep, from that. The standard advice is to start at maybe 9-12 mg and then work up. At least one person here gets into the 20-plus mg range during a cycle. (I know of one person who uses a lot less, taking chewable melatonin that comes in small (.5 mg) tablets.) A lot of people experience severe aftereffects from the anesthetics used in dental work. Late for you to learn that now, but it might help explain what's going on at this moment. (Might even be the effects of that, not the meds, that are making things worse for you.) RC ---- makes sense. You'll have to be off opiates and other meds (not verapamil, probably) for five days before you start. People seem to find www.tranceplants.net (which is in Montreal) and www.iamshaman.com (in the midwestern US) to be reliable sources for RC.  You'll probably want to buy at least 250 seeds. They are, of course, legal to buy and possess but not legal to process for LSA and consume. The method for processing is very simple: grind/soak/drink. When/if you get to that stage, get back to us. Have you tried energy drinks? Drunk at the the first sign of an attack, they can reduce the severity of the attack, and sometimes even abort it. (They don't seem to add to sleeplessness, for some reason.) It also might be time to revisit your O2 setup. Higher flow, O2ptimask, and other things can return some effectiveness that you seem to be losing. You might look at the CB oxygen page under the black and white MENU tab on the left side of the page.

I received the following today by email. I am assuming that it's legitimate since the link takes to me a government website to provide my comment. Maybe a little further investigation of the specifics would be warranted, or maybe you want to act now. Dear friends of the Alliance for Headache Disorders Advocacy, People with severe and disabling headache disorders urgently need your help. Migraine is the 7th leading cause of all disability. Yet, the US Social Security Administration does not list headache disorders as disabilities in their Blue Book – the official list of criteria for how to qualify for Social Security benefits. Consequently, people disabled by headache disorders struggle unfairly to prove their legitimate disabilities. This situation is baffling, baseless, and grossly unjust. The Social Security Administration has recently been revising the neurological disorders Blue Book listings for the first time since 1985. Accordingly, the AHDA and certain members of Congress proposed that they finally add a headache disorders listing. Unfortunately and without explanation, they have just refused to do, perpetuating a huge mistake. But there is still a brief window of time until April 28, 2014 for you to tell the Social Security Administration to change course. Write Social Security today supporting inclusion of a headache disorders listing for fair determination of Social Security benefits for Americans truly disabled by headache disorders. Please submit your comment to them here: http://1.usa.gov/1gQS89a. Once you submit your comment, you will be issued a confirmation tracking number, though it may take up to a week for your comment to appear on-line. Please don’t submit the same comment multiple times. Also, please forward this email immediately to everyone you know that cares about someone disabled by migraine, cluster headache, concussion headache, or other headache disorders. Thank you very much, William B. Young, MD, FAHS President, Alliance for Headache Disorders Advocacy

Maybe others are curious about this, too, although I realize it's probably a question for the board's moderators/admins. I notice that every day there are more than a hundred visitors to the board. Do we know whether there's any kind of pattern to their activity? I'm just wondering whether there's any way we could be sure that we're making it as easy as possible for them to get what they are looking for. Do we know whether it's mostly the same people coming back, or is it mostly new visitors every day? (I figure maybe IP addresses would tell something about that(???).) Just asking primarily out of curiosity, and partly from a desire to be sure they're as likely as possible to find what they need. I have no idea what kinds of analytics are available/in use for this board. If there's any kind of useful analysis that could be done but for which "manpower" is lacking to conduct it, I'd be happy to volunteer.

We got ours on eBay. It was used, so buying it was a gamble, but it worked well. I see there seem to be some new ones on sale at eBay now. For example, http://www.ebay.com/itm/Life-Support-Products-Demand-Valve-NEW-L063-050-/141096734246?pt=LH_DefaultDomain_0&hash=item20da054e26  Not cheap, but considerably less than the one at boundtree . . . and no script/provider required. Hope you're doing okay, 1i. Think of you often.

Heck, I'll post it. http://www.clusterheadaches.com/wwwboard2/index.html

 Nothing's as good as a fresh caprese salad, if you ask me! Well, then we've eliminated one element from the test -- assuming that the root or stick or whatever part is in mamajuana, when treated with alcohol, has the same effect as the untreated leaves you're typically eating (an assumption I'm not willing to make and am unable to evaluate). If we assume that Ayurvedic and other medicine traditions might know something that we don't (and what buster could assume otherwise?), then we have to pay attention, if we would want to pursue this with true discipline. Here's what one site says about basil: >>Often referred to as holy basil, Tulsi [basil] is a potent herb that has been used in India for thousands of years to treat colds, coughs, and flu. According to Ayurveda, tulsi promotes purity and lightness in the body, cleansing the respiratory tract of toxins and relieving digestive gas and bloating. Tulsi leaves offer a rich source of essential oil, containing eugenol, nerol, camphor, and a variety of terpenes and flavonoids. The oil is a strong antiseptic against many kinds of disease-causing organisms, including bacteria, fungi, and parasites.<<  Do we actually even know this for sure? It's sold in alcohol, but maybe that's just because people prefer drinking funny-tasting alcohol as opposed to weird-tasting water. I got no chemistry knowledge to help me here, and of course I know that the licorice root and many homeopathic items are alcohol extracts . . . just wondering whether other mediums (like water, or boiling water, or Pepsi-Cola) might also work for extraction.

 Well, I figure it's either possibly considerably easier than that, or considerably harder. On the potentially easier side, there really are people who know the likely, or most common, effects of many, or even most, herbs. (Again, Les Genser comes to mind.) So you could look at the properties of the stated ingredients and make a hypothesis about which might be affecting CH, based on what we know about other things that affect CH, from triptans to tryptamines. (For those of you who don't know, Les Genser is a homeopathic practitioner who developed the licorice root protocol for CH that has been used successfully by many people. S/he used to be active at this board, and wonderfully helpful, but has subsequently pretty much disappeared.) For example, I just looked up one of the ingredients, listed as "ocimum basilicum." Here's what Wikipedia says about it: >>>Basil, Thai basil, or sweet basil, is a common name for the culinary herb ocimum basilicum ... Basil is used for their medicinal properties in Ayurveda, the traditional medicinal system of India and Siddha medicine, a traditional Tamil system of medicine.<<< At a purely superficial level, I say "Hmmmm, might be interesting." I'd have to know a lot more, which I don't, to say more than that ... I'm just saying here that maybe some likely positive agents could be identified by a truly knowledgeable person, and the search might be quickly narrowed. (And we might say, "Who cares!?! If mamajuana proves that it works, people can just drink that." But the possibility of an actual medicine derived from the specific element(s) that do work is pretty darn appealing to me.) On the more complicated side [edit -- which I see Jeebs has already addressed], it could be that it's not an individual ingredient that makes mamajuana work (if it continues to show that it does work), but some combination of the ingredients, in which case you'd be looking at a very, very vast number of things that you would have to test. Again, herbal science might be able to narrow down the most likely combinations, but it'd still be a lot of testing. And of course given the vastness of the testing, no person/no group is actually likely to undertake that. I've written here before about my friend who has developed a spectacularly effective new antidepressant that's likely to come on the market in 2016. (You can read about it in many places, including here: http://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&ved=0CDMQFjAA&url=http%3A%2F%2Fnaurex.com%2Fwp-content%2Fuploads%2F2014%2F01%2FNaurex_GLYX-13_ACNP_2013_poster_news_release_FINAL2.pdf&ei=F-chU-XiKsPuoASS7ILACg&usg=AFQjCNGj0qs3dsRtC-_Skyr42nOna3JEjQ&sig2=TrrDJT0kjDat9-5rKBzT7A&bvm=bv.62922401,d.cGU.) On one hand, what he said to me once is the bad news: "Too bad you can't give lab rats cluster headaches, because then you could just do what pharma does and test everything you can think of until you find something that stops CH."  On the other hand, his example, in which he figured out a different mechanism for treating depression and now it's just a matter of implementing that mechanism, is an inspiration to me about what might possibly happen with CH if the key mamajuana ingredient(s) could be isolated.

BTW, has anyone posted about this over at ch.com? The more the merrier, it seems, with regard to folks trying it out.

Hey doc -- A couple of folks here, both with chronic CH, have found great results from an herbal concoction. Long story, which can be shared with you if you are interested. This thing contains something like 17 different natural ingredients, and we have no idea what might be causing the very positive results. The sample size is presently very small, but more people will be trying it. If it continues to be successful, do you think you might be able to look at the ingredients and form some ideas about which might be helping? Or maybe if it's worth it you could get some researchers interested in it? Just wondering . . .

Agreed. Or someone else smart, knowledgeable, and highly curious -- Les Genser might be a perfect candidate. Maybe I'll try emailing Les and see if s/he can be reached. Or maybe the Italian doc who's new to the board might be curious. I'm also wondering whether a blood test (of you) might reveal anything. Elevated or decreased levels of such-and-such, as compared to your last blood test (if that was fairly recent), or something? Again, thanks so much for your diligent reporting and your thinking about this!

WELCOME!!! A pleasure to have you here! And a pleasure to read of your busting success.

Big prayers to you and Michael, Ron. Jerry

If 17 minutes beats his abort time using O2, he might not be -- probably isn't -- using O2 as effectively as possible. Check the "oxygen page" under the MENU tab on the left side of the page.

It's apparently now called the "ClusterO2 Kit" http://www.clusterheadaches.com/khxc

ruff, your method works for you, and I confess that my only experiences trying to prepare HBWR ended in frustration. But I'm pretty confident that you don't want to be consuming the husks in any way, including soaking them. Here's what TommyD writes over in the ClusterBuster Files section: >>HBWR have an outer hull that contains some unfriendly chemicals. The idea is to pick the softer inner parts out of the tougher, outer hull. Dump the hulls. Soak the inner parts for an hour in water.<< https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974 Note that he says to soak the insides in water for about an hour. Testing has shown that an hour in water extracts (hydrolizes) practically all of the LSA in the seeds. Your longer soak time and different soaking substance (lemon juice) might result in a stronger concoction--some people think so. So after snipping the seeds open (another task I found very frustrating), you can scrape out the insides and just soak them. It might even be that your nighttime symptoms would be eliminated if you're not soaking the husks, too. For the shorter soak, even if it's a couple of hours, the refrigeration and the aluminum foil are not necessary -- room temperature is fine. Enough people here have had good results with RC seeds that I prefer them -- they're so much easier to prepare. But some people make good arguments for HBWR over seeds, too.

markd, what spiny said -- O2 is essential and energy drinks can help a lot -- and what g-man said: if you're going to try a psychedelic and you can't confidently/safely get shrooms or lsd, you can try seeds, either HBWR (Hawaiian Baby Woodrose) or RC (rivea corymbosa). You will have to be off the triptans (are these injections you're using, or pills?-- injections are typically much more effective), off the pred, and off the lithium for at least five days. the verap isn't so great, either, but many people do have decent results busting while taking moderate levels of verapamil. those are big steps, and can take some time, because you might have to taper off the lithium. if you decide that you want to try the seeds, you could order them now so you're ready when you're "detoxed" from the meds. some people prefer the rivea corymbosa because it's easier to prepare; some people think HBWR is more potent. Since busting often requires three or more dosings (spaced five days apart), you might want to have at least 200 RC seeds and/or at least 12 HBWR seeds. A lot of people feel that the quality is good at www.tranceplants.net. They're in Canada, but no so far from you in NJ, so delivery time might not be a problem. Some people like www.shamansgarden.com. You should read the numbered files at the top of the ClusterBuster Files section of this board, particularly files #3, 1, and 5. Of course, check back here if you decide to proceed (or if you need further advice in deciding whether to proceed). You might want to try some other things (in addition to O2, which is essential, and energy drinks, which can help if you drink a strong one at the start of an attack). For example, the D3 regimen has helped a lot of folks, sometimes quite quickly: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804. Some people find that melatonin at bedtime has some good effects on nighttime attacks: start with maybe 9 mg and increase in 3 mg increments. Some people go as high as 20 - 30 mg. You can apparently obtain and imbibe mushrooms legally in the British Virgin Islands, which isn't such a long trip from Newark or NYC (but could be awful if flying is a trigger for you as it is for many people). Here's a thread about that: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1297450426/17

i am happy, but also kind of sorry, to report that we won't be testing mamajuana soon, since my daughter's cycle has ended. it's ready for next time, though.

European Medicines Agency Recommends Restricting the Use of Methysergide-Containing Medicines LONDON -- February 21, 2014 -- The European Medicines Agency has recommended restricting the use of methysergide due to concerns that it could cause fibrosis, a condition in which fibrous tissue accumulates in the bodyÂ’s organs potentially damaging them. Methysergide medicines are now only to be used for preventing severe intractable migraines and cluster headaches when standard medicines have failed. More at http://www.docguide.com/european-medicines-agency-recommends-restricting-use-methysergide-containing-medicines?tsid=5

Seems nice that someone is studying this. Molecular Analysis of Cluster Headache; Zarrilli F, Tomaiuolo R, Ceglia C, Lombardo B, Izzo B, Castaldo G, Pastore L, Simone R; Clinical Journal of Pain (Jan 2014) OBJECTIVES: Cluster headache (CH) is characterized by severe, recurrent, unilateral attacks of extreme intensity and brief duration. Variants in a myriad of genes were studied in sporadic CH patients, often with conflicting results. METHODS: We studied gene mutations in some candidate genes, i.e., hypocretin-receptor 2, Clock and alcohol-dehydrogenase (ADH) 4 in 54 unrelated sporadic CH subjects and in 200 controls and, for the first time, in 8 kindreds/families that included more affected and non-affected cases. Furthermore, we performed the whole genome scanning by comparative genomic hybridization (CGH), searching for rearrangements associated to DNA gain or loss in a subset of sporadic and familial CH and control subjects. RESULTS: The analysis of candidate genes revealed that only allele and genotype frequency of the two ADH4 mutations resulted significantly between sporadic CH and controls; the same mutations were homozygous in CH patients from two families. The CGH analysis revealed two novel rearrangements that involved the intron regions of thyrotropin-releasing hormone degrading enzyme and neurexin (NRXN) 3 genes, respectively. The first one was present either in CH and in control subjects; the second was specifically found in some sporadic and familial CH cases. CONCLUSIONS: our data (although obtained on a small number of cases) confirm the genetic heterogeneity of CH suggesting that mutations in the ADH4 gene and a novel rearrangement involving neurexin 3 gene might be related to CH in a subset of cases. http://www.docguide.com/molecular-analysis-cluster-headache?tsid=5

There is a "trustworthy" rating here, but it might just mean that the site is not a scam. http://www.scamadviser.com/is-natural-safe-hormones.com-a-fake-site.html Maybe noteworthy, though is that this version seems to use just seven herbs, whereas the Don Ramon brand at eBay seems to use more than twice that number -- and if the Mamajuana continues working, we don't know which herb(s) might be responsible for that. If a person chooses to do as Razor did, and drink the first concoction, the wait isn't so long (I'm not sure I'd recommend that, but it seems to have worked for Razor). And of course people whose CH is episodic can make it now and have it when they need it.

YAY!!! [smiley=vrolijk_26.gif] [smiley=vrolijk_26.gif] [smiley=vrolijk_26.gif]  'Cuz if it works, you'll be one of the very, very best people to figure out why.Â