a potential new option

[les genser]

TO ANYONE VISITING THIS THREAD FOR THE FIRST TIME: After a year of development, a finalized (to date) version of this herbal protocol is available which will save you a lot of reading. Here is the link: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1322547210

The file is also available on the general board as 'new big licorice root file from Les Genser'.

To begin with, let me first salute all of you for being proactive in your response to CH. Anyone who is waiting for the mainstream medical establishment or big pharm to come up with a ‘cure’ is waiting for Santa Claus. There simply are too few of us for them to care, and anyway they are very busy working on a better boner pill. Every current med used for cluster was developed for other purposes, but you  probably know that.  If only white millionaires suffered from CH you  can safely bet they would have something on hand by now. Most medications prescribed now are of limited effectiveness, have absolutely  horrific side effects and are hard for the body to tolerate.  Few of them actually target primary causatives. There are actually people now who are having holes drilled in their heads, getting their hypothalamus wired up like a Borg, and that is the best the medical establishment can do??  I don’t blame the patient; I understand completely, but WTF?

In any event, this post is intended as a rather long-winded introduction regarding what I believe to be a new  specific therapeutic approach . I originally posted it about a week ago on the CH.com board, but they do not seem highly amenable to alternative approaches. I'm glad I thought to look here.

I would like to talk a bit first about causation .

Clusters are not vascular headaches as they are usually defined, in that the pain of a CH does not arise due to thrombosis or edema of cerebral (or peripheral) blood vessels. This does occur (sometimes) but it is secondary, not causative.

Cluster headaches have a single, demonstrable cause.  A periodic energetic disturbance in the hypothalamus (think of it as similar to trying to tune two radio stations in at once) results in a cascade of  hormone release and/or  depletion (nobody really knows which, for sure) which is slightly different for every sufferer, although the generalities are the same. The trigeminal nerve and  the oculomotor nerve pass directly through the hypothalamus, and they are right in the path of this shit storm. The disturbance in the hypothalamus  (which synthesizes and controls the most powerful chemicals in the human body and is responsible for more things, physical and emotional, than anyone has time for here) is translated into frantic signaling by the nerves, resulting in the skullcrappity smacking pain we all know and love, again different in minor ways from person to person depending on where the disturbance is in the hypo. and which nerves are most directly affected.

There is, by the way , nothing wrong with your hypothalamus. You can look at it side by side with that of a non-sufferer, you can scramble them and spectrographically analyze the chemical content and they will be no different in any significant way. This is because even though the hypothalamus is the most direct proximate cause of CH that you can  actually see, the actual cause is energetic.

This may be going off the reservation for some folks, but the hypothalamus is physically situated  at the exact juncture of the fifth and sixth Chakras. The fifth Chakra is considered to be the channel of communication between the body and the greater environment, and the sixth and seventh Chakras are a person’s connection to that environment. Oddly coincidental for a several thousand year old system, isn’t it, considering what the hypothalamus actually does?  The disturbance in the hypothalamus, by the way, is well documented. The actual cause of it is not.

Chronic, or frequently repeated pain does funny things. It affects cellular memory and behavior  ‘downstream’ from the source. An increase in mast cell (histamine) mediated activity (allergic-type reactions)  results; muscles swell up and tense, causing pressure on blood vessels which attempt to swell up themselves to maintain flow rate. Nerves in all these areas become feedback loops;  these are your secondaries.  Because there are no pain receptors in the hypothalamus and the progress of the attack is so rapid it is sometimes exceptionally difficult to discern cause and effect . Thus, thermal disturbances (hot flashes etc.) and possibly auric events (due I believe to the direct coupling of the optic chiasm to the hypothalamus) are frequently perceived after secondaries set in. It is necessary to decouple the pain response from the actual event in the hypothalamus to experience the actual sequence, but I have been able to do this.

Now most of you probably know that no analgesic known has any effect on cluster headaches, up to and including opiates (morphine and yes heroin HCL included;- personal experience). This is not hard to understand if you accept that the hypothalamus is the sole actual culprit in initializing CH; there are of course no pain receptors in the brain and the hypothalamus in particular as the brain’s chemistry set  would have to be virtually immune to outside chemical influence with a few IMPORTANT exceptions; also since the pain signals are going mostly out, analgesics at remote receptor sites would likely not do shit. And, they can cause serious rebound events.

I don’t propose to even discuss individual drugs, most of which are highly toxic and dependency causing crap with no business in a human body except to say this: No drug or substance which does not act directly on the serotonergic neurotransmission  mechanism of the hypothalamus has a snowballs’ chance of  affecting CH.

Enter the psychedelics; LSD, LSA and mushrooms all, of course, do what they do because they metabolize into indoles which are almost exact mimics for serotonin, and they bind to serotonin receptors more readily and tenaciously  preventing  reuptake of the real thing. And of course, as you all know or you wouldn’t be on this board, they work. Central and South American shamans have prescribed mushrooms for probably thousands of years.  I have personally used both mushrooms and LSD to abort clusters.

There are only two pesky problems: Such substances are illegal to buy or possess (as an herbalist I am incensed  at the very  notion of making plants ‘illegal’; what crappity smacking arrogance, implying that  god makes mistakes) and second they are also expensive.

I believe I have finally found something  cheap and legal that works as effectively on the serotonergic system as mushrooms; extract of licorice root.

I have to pause for one minute to explain that I have had cluster headaches for 37 years; they have been episodic and borderline chronic; then in 2003 I achieved remission of sorts with trigger point acupuncture. Then, two years later they came back on the other side, and since that time they have gotten progressively worse. For the last three years they have been chronic, with remission periods of no more than a week or two. Until I broke this cycle, I had been experiencing between three and six hits a day, with usually three at night at two hour intervals. When seriously triggered, I would have the 24 hour marathons with short breaks. I do not use pharmaceuticals anymore (used to take lots back in the day) ; I was treating with ice, acupressure, relaxation techniques & breathing.

To cut to the chase:  Using a licorice root tincture I have completely aborted my chronic CH. I have been free for three weeks; during this period I have experienced exactly one quasi-headache which lasted  about eight minutes and disappeared (I had been exposed to heavy environmental triggers all day previously).

Do the research yourselves; just google licorice root. It is a very effective serotonin reuptake inhibitor; it has a balancing effect on many other hormones, it stops cortisol depletion and it reduces mast cell activity. It also is a fine and gentle antidepressant. An Israeli University study in 2003 found that licorice root is a more efficient serotonin reup inhibitor than virtually any prescription drug then available (still, actually).

To be completely thorough, the headaches disappeared instantly, metabolic disturbances continued for about a week and a half (hot flashes, etc, duration usually about ten minutes) mostly at night  and these are now almost completely faded.

Anyway, I have gone on far too long and I beg your indulgence(s), so here are the particulars:

PLEASE: this is NOT an attempt to give anybody medical advice. This herb, as herbs go, is powerful and should NOT be taken by people with certain preexisting conditions, among them hypertension , osteoporosis, renal disease, cirrhosis, or by pregnant women. People taking MAO inhibitors or certain other antidepressants should also not take it as it vastly increases their effect. In other words, ask your Doctor.

I could find nothing in the literature that indicated it was harmful in the amounts I am using.

1. Use ONLY a whole plant extract ( tincture) of licorice root,{Glycyrrhiza glabra}. I use  one I made myself, but good high quality tincture is available at any health food store and many pharmacies, Whole Foods, Mom’s , etc. . Get the best one you can find; it should be about $20 for 2 oz. . Label should say 1:5 (that’s the potency) and 30%-40% alcohol by volume. Do NOT use teas, candy (which isn’t real licorice anyway, its anise) or anything other than  a whole plant extract. This is very important.

2. I took a standard dose for the first two weeks, that is 2 milliliters (about thirty drops)  three times a day. After two weeks, I cut it to 1 milliliter three times a day  and I will continue to titre it down with the aim of being off it completely after four weeks.

3. I am taking it in conjunction with a Skullcap tincture. (Same dosage as the licorice). This is not completely necessary, but Skullcap is a beautiful and gentle nervine/anti stress tonic for a frayed nervous system ; very relaxing.

Let me emphasize three things: 1. I am not interested in selling anybody anything. I have to say that because people on the CH site jumped instantly in my shit when I posted this there which I found strange and off-putting. Do I sound like I’m selling something?  2. I am really not interested in having chemistry set / reductionist / organic chem .201 discussions about this stuff, though I am quite capable of it. Nature made it, I don’t need to defend it . I am merely reporting that it works, and works well. 3. That having been said, I will be more than happy to answer any questions I can about what I did and why. As I’m sure all of you will understand immediately, I was so excited when this stuff actually worked I was beside myself. I’m so used to disappointment, I kept waiting for it to stop working.  I share it in the hope it will help someone else.

[Bonkers]

Hello Les,

I, for one, will try your tincture (if I can find it). My son is an extremely difficult case but we'll give it a try and report back after we do.

Thanks and welcome to ClusterBusters.

Ron

[TakinitEZ]

Les, I enjoyed reading every bit of your message. I found no fault in any of what you had to say, and I actually also enjoy your writing style. I especially appreciated your explanation of cause, which to me makes a lot of sense (other than the chakras which I know little of).

Thank you for posting. I will definitely head out today to get the materials to give this a try.

-T

p.s. I would advise you to delete material from the CH site, as I have, if you feel the negativity taints good information that others will benefit from. Many visit and only read.

[Potter]

I think you're full of shit.  I saw no one blasting you and in fact they seemed darned willing to try the licorice root.

        Potter

[TakinitEZ]

Potter, Do you really need to bring your negative crap over here? Everything in that post is positive, sound, and well meaning. -T

[Potter]

It's not negative.  It's the truth.  Read the thread.  Hell I'm gonna give it a whack if I ever am in cycle again.   

             Potter

[TakinitEZ]

OK, I read the thread and agree there were only two posts that were negative, all others were positive. I don't think he's full of shit, though, about the sense of negativity from your post there or here. Maybe you meant well. -T

[Potter]

I wouldn't call red twizzlers a negative comment. I believe it's called humor.

         Potter

[TakinitEZ]

OK, I read it more as making fun of his presentation of a serious topic. My apologies for that. Still, would rather not call anyone on this site "full of shit". Everyone is here to the benefit of others and for themselves. There's no call for being nasty like that. -T

[FunGuy]

Please.

Lets play nice.

FG

[tingeling]

Licorice lower the Testosteron levels,  allot. It lower BP. Real licorice is nothing to laugh at actually. I get hit almost immidietaly eating real licorice. i love it, and i like chewing licorice roots for the taste, but i can`t do it.

[CHfather]

Les, thank you for taking the time to share this so thoroughly with us. Any cause for hope is worth exploring, and you are quite persuasive about this one. I hope you don't find posts like Tingeling's to be negative -- for someone like me, always looking for ideas for my daughter, the potential blood pressure issue could be a deal-breaker, since my daughter's "normal" resting bp is 90/60. (That made her, for example, ineligible for verapamil -- probably a good thing, from what I've read here.)

I'd also like to suggest that somehow the efficacy of this be tracked -- a separate "licorice" thread or something.  I know that for me, Dr. Sewell's articles about various treatments were very helpful in many ways (including leading me to Clusterbusters), and I feel pretty confident that if this is shown to work, he would write about it, which could get the word to a lot more people.  Cart before the horse, I know . . . Just saying.

[Bonkers]

Hi TakinitEZ,

Potter has been PF for a long time and still posts daily on both forums. He knows a whole bunch. He just has a "different" sort of humor. He'll grow on ya. I promise. Thanks just the same for trying to protect us.

Ron

[Bonkers]

Hi Les,

I just sent an email to the Iamshaman shop asking if their extract (http://www.iamshaman.com/eshop/10Expand.asp?ProductUID=1311&ProductCode=LYC-1OZ) meets your specifications. I'll return to this thread with their reply.

Ron

[weatherman]

Les,

Your message is beautifully written, honest and a real down-to-earth piece of knowledge.  You have obviously put a great deal of effort into researching and compiling a healthy dose of information.  I thought I'd read everything about CH that was out there, and your narative tops them all.  THANK YOU Sir !!!  And BTW, I find your prose refreshing, to say the least.

Most interesting about the connection between the hypothalamus and Chakras.  We are certainly a very complex system of physical and emotional aspects that relates to our environment in ways that have yet to be all explored.  Someday, probably well into the future, the exact cause of CH will be determined and it will surely blow all our minds.

Personally, I've been Chronic for several years and have recently enjoyed the wondrous benefits of O2 at 15 lpm.  My health care provider (Apria) was unable to furnish the proper regulator or mask, and 3 weeks later now, have still not obtained them.  Screw them, I bought the Optimask from Clusterbusters and my own regulator (Amazon, about $22).  Life has been glorious since Dec 14 after trying it for the first time.  K7-8's are hopefully gone forever!

If the day ever comes, I'll take your advice and try the Licorice Root.  It seems better than any chemicals or surgery that is available.

Thanks Again for all the info.... HAPPY HOLIDAYS 

Weatherman

[Psiloscribe]

Sounds interesting.

It does also come with some strong warnings and isn't something to mess with carelessly.

It seems it raises blood pressure, not lowers it.

Its effects on serotonin receptors, cortisol levels, mast cells sounds good. The fact that it lowers testosterone is a bit baffling considering recent studies but that doesn't make it a deal breaker.

Interesting stuff

Bob

BTW I also agree that Skullcap works well and can help reduce anxiety. People that have added it to their psilocybin dosing have reported being much more relaxed.

[les genser]

Hi folks. Thank you for all of the responses. First, I must apologize if my comments re: the sister site were misinterpreted. When I said they did not seem amenable to alternatives, it was potentially my own prejudices about relying on the good will of pharmaceutical companies and my own frustrations surfacing. It was not my intent to offend anyone, and I'm sorry for that. I certainly didn't mean to incite a shitstorm. And yes, I certainly appreciate humor and strawberry twizzlers though I have no idea what they are actually made of. I would venture to say that we all have seemingly been crapped on enough by circumstance and we don't need to do it to each other.

There; well anyway to address a few points raised:

regarding the testosterone, bear this in mind: most of the (admittedly) few serious studies I have been able to access regarding licorice root have used dosage levels ranging from 700 milligrams to 2 ounces (!!!) and most have isolated certain presumed 'active' constituents of the herb rather than use the whole plant. Needless to say, this is far in excess of what I am using. Most herbal authorities I tend to trust believe that whole plant extracts contain properties that tend to counterract negatives; from the Lippincott Herbal Therapy manual: "Most cases of hyperaldosteronism have occurred with overconsumption of real licorice candies; there are fewer reports of adverse reactions in patients who take recommended therapeutic doses of whole licorice extracts".

Also, just for general FYI, there is an article in the latest New Yorker regarding the scientific method which bears on all the studies we see; it is really interesting reading. The gist of it: take all such pronouncements (including mine) with a giant grain of salt.

Licorice will RAISE blood pressure; it is contraindicated in people with hypertension and can cause sodium retention which further aggravates this. Again, this in in higher dosages.

Licorice products labelled "DGL" have the glycyrrhizin removed. DGL Licorice root products have NONE of these side effects. I honestly don't know, and neither does anyone else, whether removing the glycyrrizin effects the efficacy of the herb... results were 'inconclusive'; but if anyone has any of the contraindications and still wishes to try it, that would be the way to go.

I was asked a question on an email that bears mention here, cause its important: Do not use this herb if you are taking anything classed as an SSRI or a MAO inhibitor. As I think I mentioned at some point, this herb is pretty damn potent. Ask your Doctor. He or she may not be that familiar with herbs, but there are good online databases. Here is an expanded listing of interactions:

diuretics, digitalis, antihypertensives, corticosteroids, some laxatives.

I am currently slowly lowering the dose I am taking in the hope of finding an effective minimum since I am very conscious of the potential negatives. I also believe this is probably going to be different for different people.

A little anecdote before crashing: I intentionally exposed myself tonight to an environment containing a hot and smoky wood stove and half a dozen people smoking like Pittsburgh in the 60's (I'm not a puritan I just recently quit myself). The last time I was there, just prior to 'discovering' the licorice root, that same atmosphere triggered a 24 hour marathon of more or less constant recurring K7-8s. The only thing missing was a midget calling me into the light. I spent four hours there and I am happy to report I emerged unscathed.

Be certain that I will report any setbacks just as readily, notwithstanding the fact that I desperately want this stuff to work reliably, and not just for me.

The solstice has just passed; renewal is coming. May we all have a better year in a better world. Merry Christmas & love to all of you. Les G.

[tingeling]

Sorry, i didn`t mean to be negative about licorice. I just ment telling my experience with licorice, when eaten as roots. I have no clue what the other thing is.

[TakinitEZ]

And to you, Les.

Ting, Do you realize what time it is that you're still posting?!?

[Bonkers]

Busted.

[Bonkers]

Thanks, Les. You've certainly aroused a lot of interest in the last couple of days. Good on you. We are definitely going to beat this S.O.B. -  one way or another. I'm absolutely certain.

[TakinitEZ]

sure hope so cause I'm still up. and it's Christmas eve! -T

[tingeling]

I posted early in the morning where i am

But i looked at what i wrote and the way i wrote it, it just kind of... i just, i wrote shortly and it looked negative so i had to do something about that. And that`s not what i ment, and i`m always interested in what isn`t a Pharmacutical med. thank you for sharing

Welcome le genser, i hope you have a PF day today at Cbristmas Eve

tingeling

[Guiseppi]

I welcome anyone's continued research, especially when it's done as methodically and intelligently as yours. You should have seen the ridicule you "drug crazed mushroom nuts" first faced when it was suggested as a remedy for CH. And the crazies who said just huffing oxygen would stop an attack. ;D

On one hand, we are always on the look out for charlatans, stopping by to sell us an instant cure on their first visit to a site. It's critical we not let that concern blind us to the potential for new weapons against CH. Good luck on your experiment, please continue to post your results here and on CH.COM. There are a few difficult people over there, the value of this type of information far outweighs the annoyance of these people. Thanks for taking the time you have to post this.

Joe

[Dallas Denny]

I welcome anyone's continued research, especially when it's done as methodically and intelligently as yours. You should have seen the ridicule you "drug crazed mushroom nuts" first faced when it was suggested as a remedy for CH. And the crazies who said just huffing oxygen would stop an attack. ;D

On one hand, we are always on the look out for charlatans, stopping by to sell us an instant cure on their first visit to a site. It's critical we not let that concern blind us to the potential for new weapons against CH. Good luck on your experiment, please continue to post your results here and on CH.COM. There are a few difficult people over there, the value of this type of information far outweighs the annoyance of these people. Thanks for taking the time you have to post this.

Joe

Very well said Sarge!!  I wholeheartedly agree!!  Welcome to the community Les!!

On a positive note for me, I love licorice candy!!!  lol!!!

Hell, we're gonna keep findin all these different natural remedies for CH.......one of these days we'll all be wearin little leather medicine pouches around our necks......a little licorice root, a few SPUTS, a few RC seeds......

Dallas Denny