CHfather
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Posts posted by CHfather
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BTW, has anyone posted about this over at ch.com? The more the merrier, it seems, with regard to folks trying it out.
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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 . . .
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We need the good Dr. H to take a look at why Mamajuana has the ability to turn the CH pain receptors off.
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!
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WELCOME!!! A pleasure to have you here! And a pleasure to read of your busting success.
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Big prayers to you and Michael, Ron.
Jerry
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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.
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It's apparently now called the "ClusterO2 Kit" http://www.clusterheadaches.com/khxc
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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.<<Â 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.Â
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.Â
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.
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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.Â
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
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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.
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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.
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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
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The one liquid version I've found online is here: http://www.natural-safe-hormones.com/mama_juana.html
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.
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I've bought the Mama Juana mix.Too interesting not to SmileyÂ
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
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I've also done the mixing, but "we" haven't had a chance to try it out yet. It'll be about a week before that happens. Anyone else trying it, or preparing to try it?
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Hi guys - it's been 7 years but last night the beast came a-knockin' again. I used HBWR's with great success, and can again, but since I've been out of touch so long, maybe there is new info you could share. Bob W, if you see this, hello and I lost yer ph# or I'd call you. PFDAN everyone! MJÂ
People are still using HBWR. I don't know if this is new in the past 7 years --probably not -- but many use rivea corymbosa (RC) seeds, too. RC is easier to work with, but some say that HBWR might be more potent somehow. Maybe preparation has changed since then(?) -- grinding and soaking in water for an hour or two is all that's needed.
The vitamin D3 protocol has helped a lot of folks: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804
Some people are very fond of licorice root to abort attacks and break cycles: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068
Maybe some better ways to use O2 (higher flow rates, O2ptimask, etc.) -- see the CB Oxygen file under the black and white MENU tab on the left.
Energy drinks? Melatonin? I don't really know what's "new" among the things folks are doing.
Here's to seven more years!!!!!!!!!!!!
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psilocybin is the compound in some mushrooms that makes them psychedelic. the various kinds of mushrooms that have psilocybin in them are called "psilocybin mushrooms."
if a person buys spores, they are not buying mushrooms -- they are buying the "seeds" that they need in order to grow mushrooms. in most countries, you can't buy mushrooms because they are illegal. in some places it is legal to buy spores, but it is not legal in most countries to grow mushrooms from the spores.
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if there is online store sell the seeds please tell me
mjit, assuming that you are asking about spores . . .
If you type the word spores into the search box on the top left side of this page, you will see two things: (1) advertisements from online entities that sell spores, and (2) previous posts from people about buying spores. The online site that seems to be most favored here is www.ralphstersspores.com.
Of course, I have no idea whether anyone would, or could, ship to Egypt (even though there is of course strong evidence that ancient Egyptians used psilocybin for sacred rituals -- and maybe also just for fun).
If you are looking for RC seeds, you could go back to www.tranceplants.net.
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"Busting" is ingesting substances with psychedelic properties (certain kinds of mushrooms, or LSD, or seeds containing LSA), usually to prevent future CH attacks (but sometimes to abort individual attacks). Consuming any of these substances is illegal; possessing some of them is illegal. When you ask "how I can get it," that's a problem, since they are illegal (in almost all countries). There is a way, in some countries, to get the seeds that can be made into LSA -- the seeds are legal to buy and to possess, but it is not legal to make them into the substance used to treat cluster headaches. People often find ways to get what they need.
These substances are taken roughly every five days. Many people (but not all) try to take the minimum amount that will treat their CH without too much of a "trip." Many find that after a few doses their CH symptoms are reduced or they go into remission and don't have more attacks for some period of time.
If you are thinking about doing this -- "busting" -- you should tell us what your specific questions are and they can be answered.
There are other strategies that help people with CH. Most important is having oxygen to inhale in order to abort an attack, but there are many, many other things you can do. If you tell us more about how you are now treating your CH, we might have some helpful ideas for you.
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Such beautiful people.
Thank you.
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Yes, spiny is old. But not in heart or mind
That's where it counts (I keep telling myself)!
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Melatonin's a tricky thing. The reason that it's believed to help people with CH is that melatonin is depleted in the blood of people with CH (and of course it's related to the circadian rhythms that are related to CH). Some studies have shown it to be somewhat effective for people with episodic CH, not so much for people with chronic CH. Â
Some factors for you in terms of dosage:
The quality of melatonin supplements varies greatly in the US, where it can be bought over the counter (without a prescription). European melatonin is considered to have more reliable quality, so you might have better results with less.
General (non-CH-related) studies show that younger people need less melatonin as a sleep aid than older people do (natural melatonin levels go down with age). If I guess that you're somewhat younger than spiny, you might have good results with less. (Not that spiny is old. I'm old. The rest of you are all spring chickens to me.)
I don't know how melatonin is administered over there where you are--whether it's a tablet that you swallow, or something that you put under your tongue or in your cheek and allow to dissolve, or whether it's in chewable form. My daughter (who is the person in my family with CH) gets very good results for sleep with .5mg (yes, .5mg) of chewable melatonin, which I bought for her after a researcher told me it was by far the most effective form of melatonin. (However, it seems like maybe melatonin is actually a CH trigger for her when she's in cycle. One or two other people with CH have said that it seems to be a trigger for them, too.)
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anxious about getting a bad trip.
Have we talked at all about busting with rivea corymbpsa (RC) seeds? With RC, you could get a potentially therapeutic dose without any risk at all of any kind of significant trip. Lots of people have successfully used RC to bust a cycle. No one here has ever reported anything more than a mildly "buzzed" feeling, even at what seem like very big doses, and you wouldn't have to even try a big dose. You could start relatively small and work your way up if you wanted to. At the smaller doses that still can be effective, I could practically guarantee you that you would have no trip. (I would absolutely guarantee that based on all we've seen here, but I suppose there's some one-in-a-million chance that you would react differently.)
I don't know what RC availability is in the Netherlands, but since in most countries the seeds are legal to buy and legal to possess, it's hard to imagine that law in the Netherlands would be more strict than that.  There's a UK supplier that some people have recommended --www.allsalvia.co.uk -- if you can't buy them more conveniently right where you are.
Really -- they're an effective busting agent (more effective than shrooms for some people) with no trip.
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 Happy to hear this!!ÂThe optimask does a better job than the old mask in acute treatment of attacks
:) :)
The lengths to which CH'ers are willing to go.....
in General Board
Posted
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."Â 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.