a potential new option

[les genser]

Sam,, I did not see this post until now, and I'm afraid you didn't see the one I left on your your help thread before you went off line.

I did not know about the oxazepam and the propanalol. They are both doubtless interacting with the tincture, and not at all in a good way. Please stop taking it AT ONCE and do not even think about trying it unless you are off those meds.

You should stabilize, and please give yourself a break for a couple of days before you do anything else.

I cannot give anybody medical advice; but I will say that even though I know those two drugs are frequently prescribed for cluster patients I don't think they are worth a cup of warm piss. They come with too much baggage; unless you are hypertensive lowering your blood pressure is a stupid idea as your body will inevitably try to compensate. And the diazepams slow your brain down, for Christs sake. Your brain doesn't like that. Just my opinion, but I think thats the source of your nighttime unpleasantness. And the Oxazepam is addictive, on top of everything else.

Please, I am not in the least being critical of you. We will do anything to get away from the pain and too often we are victims of people who prescribe based on a sales reps' say so or drug company literature; or just to be perceived as doing something, even if its wrong. They seem to have forgotten that first line in the Hippocratic oath (Do no harm).

Stop the tincture, give yourself a couple of days and see how you feel.

[les genser]

Because I know that it is now buried deep I need to repeat this, so bear with me:

Anyone considering trying licorice root tincture, if you are under a Doctor's care check with him/her FIRST.

If you are taking prescription medications of ANY kind, check with the prescribing physician FIRST.

If you can't do that check with a pharmacist, they usually know even better.

Licorice root should NEVER be taken while using certain classes of drugs, including SSRI's, MAO inhibitors, corticosteroids, and many antidepressants, among others.

It should not be used by people with hypertension, or renal problems, or pregnant women unless supervised by a physician.

I cannot, should not, and will not give anyone medical advice, but I will tell you about this herb:

It ain't chamomile. Licorice root has a powerful and damn near immediate effect on several interrelated body systems. Interaction with other drugs, while almost definitely not long term harmful, would certainly be extremely unpleasant. The glycyrrhizin is 50 times sweeter than sucrose, and it metabolizes rapidly. The active flavonoids are shaking hands with your hypothalamus in about fifteen minutes.

I know all of us here are in the habit of self-medicating. That's why we're here, to help ourselves.

I do not doubt that this tincture works, and works well. But it can curse as well as cure, so please, everyone, mind the warnings and be careful.

Les G.

[prolosam]

I can't say I agree with all that you've said but to each their own.

I've stopped the tincture.

Best of luck to anyone else trying it.

Hope you stay pain free les.

[swiftlaw]

Les - read all the threads down to here. I am 61 - 23 or so years into my CH - like a clock from the Vernal Equinox to the Summer Solstace every year. 2 good years busting with shrooms - last year no luck - I tend to cave in after a dose if the CH comes back and use the inmitrex - just to buy some time - but then I'm back in it and can't get clean enough to have the shrooms work.

I smoke - I have a mild benzo habit for 3 years ( 1mg adavan same time every night) and I am already feeling the beast beginning to circle.  I used "licorice water" several years ago in my quest - to no avail ( I have been to a Navajo Shaman, a Portuguese wizard and all in between. ) Help!  Your explanations are so elegant - god dam I fear this onset so much - I fear for my own life - will i be able to make it through another cycle?

[Bejeeber]

Swiftlaw, regarding your imitrex use and not being able to get clean enough to have the shrooms work - I thoroughly understand why you feel the need to go to the imitrex. I've certainly been there and done that a zillion times myself.

I feel that just to make sure though, I must ask if you've tried the newer, very improved method of oxygen use for aborting attacks? I'm talking about high liter flows, around 25 to 45 LPM, and a non rebreather mask. Here's more info if you haven't checked this out already: http://www.clusterheadaches.com/O2/index.html

This power user style O2 sure can make a good substitute for imitrex, especially when you need to detox in order to bust.

Regarding your "will i be able to make it through another cycle?" question - I realize that question was for Les, but IMO the the answer is a big YES, especially if you really dig in here and at ch.com for for info and advice on the latest and most effective ways to beat this beast back. You did it before - you can do it again!

[les genser]

Good morning. Hard for me to even visualize the vernal equinox right now as it is colder than a well digger's ass here, but I know its coming soon, so...

1. Easy stuff first. Real good advice re: the O2. As abortives go, it seems to work for most people who do it right. I have no personal experience with it, but I like the idea of it on principle, and here's why: All abortive methods work because they block or minimize secondary effects which occur either as a a result of a hypothalamic-induced attack or if those same secondaries are acting as "outside in" triggers (environmental, or "allergic" type, more on this in a minute) which poke the hypothalamus, resulting in a full blower. Remember this; everybody's picture is slightly different but the patterns are identical: When you experience an attack, the areas the pain radiates to habitually (whether its eye tearing, nose running, sinus obstructing, muscle tension and pain, whatever) become part of the chronic pain feedback loop. These are the areas your personal set of triggers attack.

Most abortives tend to be vasoconstrictors, like caffeine and O2. They work, but there is a price tag in terms of rebound. Your system will try to regain equilibrium, and the harder you push it one way the further the pendulum will swing in the other direction. Rebound can be almost instant or it can take hours and therefore be harder to identify, but trust me it always happens. It has to.

And that is why I like the Oxygen; you ( I am surmising here, someone tell me if I'm wrong) only need use enough to abort an attack, and when you are done, it clears your body in about thirty seconds. I have heard users here say that sometimes there are rebound effects from O2, but caffeine seems to help that. As a charter member of the Juan Valdez appreciation society, I'm all about the caffeine.

Anyway, in all seriousness, the O2 seems to carry less of a metabolic price tag than chemical abortives, and that I think is the best thing going for it.

Second: This is important, and difficult. The importance of stress (not the regular kind) as a causative factor in many types of illness, including autoimmune diseases and cancers has been demonstrated repeatedly and has been known since Thracian physicians complained to Socrates in Plato's Dialogues that Greek doctors ignored it.. and that was in 200 BC. Trust me on this, the medical establishment has by and large not grasped the importance of this but it is going to be the holy grail. Cluster headache is no different, and in fact in my opinion this chronic physiological stress (which you can be and usually are completely unaware of ) is the commonality we all share.

A study published in the Annals of the New York Academy of Sciences in 1992 held that "Psychological factors such as uncertainty, conflict, lack of control, and lack of information are considered the most stressful stimuli and strongly activate the HPA axis. Sense of control and consummatory behavior result in immediate suppression of HPA activity."

In short, it took a fancy study to prove that people are afraid of what they don't know and can't control. Duh.

Actually, what it did establish was the absolute hard wired connection between feeling that you are in control and the suppression of crazed HPA activity. This is of interest to us.

Believe me, I know how it is. I spent years and years wondering exactly how headaches would F up my day, and living in terror of the next attack.

Now I don't like referring to CH as 'the Beast ' or 'the Demon' or such, even though I did it myself for most of my life. This is not something extrinsic to us; we are not attacked or invaded. This is us, and as hard as it might be to believe, love and acceptance are the principal necessary factors in removing it from our lives. But what is true from the psychological standpoint is the old adage that if you call a Demon (maybe subconsciously) he will come.

I am trying to say here that it is the fear of the pain that is your biggest enemy. It is in a real sense much worse than the pain itself.

And the point of that study? that "consummatory behavior' could immediately suppress the HPA activity. Knowledge is quite literally power. So again, Bjeeb's is right on the money.

I'm sorry, I'm frigging preaching again and I told myself I wasn't going to do this anymore. It isn't even Sunday.

Anyway, based on Sam's negative experience with the licorice root interacting with his diazepams, I would recommend that you not consider that an option. Ativan is pretty potent as benzos go and 1 meg is a relatively stiff dose.

Once again, don't construe this as medical advice in any way, but my feelings re: the diazepam family are pretty well known. I think they suck. I know people love 'em, I have friends who love 'em. That's one of the less pleasant things they do: they are dependency inducing. They also (here's where I preach some more about rebound) have metabolic price tags attached that may not be terribly obvious.

The smoking doesn't help. I lied to myself for years and years; I thought of it as 'first aid' for clusters; I understand. 

If you wish to try the licorice root tincture as a modality, the ativan has to go. It is super hard to get off, I know, but if you are only taking one at night its more likely psych dependency in your case; which come to think of it is actually harder.

But you have time to do these things. There are many very knowledgeable people here with experience in every aspect of this syndrome.

You are most definitely not alone in this, and that should be a cheerful thought all by itself.

You will be well. Later

Les G

[TakinitEZ]

Les, I've read many explanations of imbalance and rhythm disruption for a whole host of maladies. Any homeopathic site worth it's salt claims to understand the world's problems in very simplistic terms. Perhaps that's why it "makes sense" to some people and to others sounds like a bunch of nonsense. What is difficult for me to get past is the notion that all maladies originate from those same, very rudimentary issues, yet express themselves in such a variety of highly complex issues, like CH. I read an article recently, although I can't now remember where it was, that pointed to a singular stressful event as the originating point of hormonal imbalance and the cause of cancer. That would imply, to me, that everyone will have cancer since surely everyone has at least some period of significant stress. That explanation of the cause does little for me in understanding the solution.

There is some medical grounding in your pendulum theory  with regard to meds. It's the same as withdrawal from a medication. If your body is accustomed to a certain level of chemically induced emotion or physical change and that chemical is suddenly removed, the body craves it or goes into overdrive attempting to return to some level of homeostasis. A blast of Imitrex is certainly going to have some rebound effect post dose. Although the dosage is designed to maintain a safe rebound, that doesn't mean it won't be negative.

-Chris

[les genser]

Hey Chris:

I for one would run like hell from anyone who claimed a simple one size fits all answer to anything. Study after study has implicated chronic physiologic stress as a causative factor in many diseases and classes of disease. The pathways and how it actually happens is anything but simple. How the stress occurs in the first place and reacts with genetic and environmental factors is highly individuated. How it expresses is also determined by internal and external forces. The HPA axis is connected more or less directly with every organ system of the body and the endocrine function mediates and regulates pretty much every function we have. When chronic physiologic stress is applied to it, it really is not a big stretch to see that the effects could show up anywhere. I would think of it in terms of commonality, not oversimplification.

The type of stress that Dr. Mate in particular talks about is not what we think of as stuff we all deal with; that is 'acute' stress, in reaction to events or situations. What he implicates, and again there is no single cause of this, is chronic physiologic stress ( not a 'concept', but actual, demonstrable physical changes) resulting from early environment, things like but not limited to abuse, abandonment issues, alcoholic parents, unresolved or underdeveloped emotional maturity, a whole raft of things. His point as I understand it is those issues, unresolved, manifest themselves as adult behaviors which are also dysfunctional, all of these things adding to the stress which is seldom if ever consciously perceived. The stress affects the HPA axis in particular (since it is emotional interface) resulting in expression in a variety of conditions. I believe his intent is not to oversimplify, but rather to show that trying to treat these different conditions without addressing this underlying 'commonality' is pointless. His evidence is extremely compelling. The book is called "When the Body Says No"; Gabor Mate, MD.

I know the pendulum analogy is somewhat of a simplification as well, but trying to explain how the organism compensates by adding and removing receptor sites in response to long term meds, how metabolic pathways get modified or compromised and such seems unnecessarily complicated when the old watch fob does the same job. I think the underlying principle, that the body will always try to regain homeostasis, is sound.

And anyone who has ever watched an episode of Kung Fu knows that all life is balance. Right, Grasshopper?

[TakinitEZ]

ahh, balance grasshopper, balance.

You know there's a similar theory about major weather shifts in the history of the planet occurring with a slight shift of the earth's axis and relocation of the north pole. At the end of the day, the new landing place for the poles redefines the new norm. I suppose it's not unreasonable to suspect that we're slightly off our original rhythm and balance. But then how do the episodics get so in and out of sync on a regular basis?

[les genser]

Beats me with a stick. The only way I can conceive of it is like its the energetic equivalent of using last years' calendar; its almost right most of the time... I think the interference is periodically enough to generate enough static to set you off. Maybe we don't belong here at all. Maybe we are all aliens. Anybody know any scientologists?

I bet old L. Ron has an answer for us.

[les genser]

For anyone keeping score; I have no idea how many people have tried this, but what I am aware of:

2 chronic

2 episodic

complete remission.

1 terminated due to serious drug interaction.

Cost about 30 cents per dose. (Suck on THAT, Pfizer!!)

I have been PF for 8 weeks, longest period in three years.

[CHfather]

Thank you, Les. I'm also looking forward to a report from your meeting this week with the woman from the board of the Herbalist Guild.

[JeffC]

So does it work?

[Hipshot]

Haha. Too good.

[les genser]

Hi guys.

The meeting was supposed to be today, but she cancelled due to illness. We are rescheduling for early next week.

Jeff, I had at least three smart ass answers lined up for you but I decided to go for straight out obvious instead:

I would not have wasted my time, forty some odd posts of effort and everyone else's time, energy and expectations on something I did not think worked.

Anyone who knows some doctors aren't the geniuses they would like us to think they are is alright in my book. My family is full of them. Name a specialty, we got one. Some of them "eminent". They wouldn't know common sense if you handed to them in a bag that said 'common sense' on it. My oldest son is a second year med student. God help me.

[Geordie Lass]

Hello Les,

I just wanted to thank you very much for all the information you have put on here. Also for trying to help all who have these terrible CH's.  My heart goes out to you for all your kindness. Hope you keep up the good work. We need people like you.

Best Wishes

GL

[les genser]

You are welcome indeed, and thank you very much for the sentiment. It is what we do for each other that makes us fully human. How is your son doing, by the by?

Have to go out to work but I will check back later.

[Geordie Lass]

He's waiting on a  MRI scan at the moment and blood tests.

Thanks for asking

[dereksgirl]

i am reminded of Thomas Edison...

"the light bulb was invented in 1879 by Thomas edison. it took him 1000 attempts to make the lightbulb. He said he didn't fail 1000 times, he found 999 ways not to make a light bulb."

and so we go and purchase some tincture!

Will keep you posted on my guniea pig... ooops, I mean hubby

thanks for the "lightbulb moment" ;D

[1961mom]

Regarding your "will i be able to make it through another cycle?" question - I realize that question was for Les, but IMO the the answer is a big YES, especially if you really dig in here and at ch.com for for info and advice on the latest and most effective ways to beat this beast back. You did it before - you can do it again!

This is why I love this place and just wanted you to know that Bejeeber!

[1961mom]

For anyone keeping score; I have no idea how many people have tried this, but what I am aware of:

2 chronic

2 episodic

complete remission.

1 terminated due to serious drug interaction.

2 1/2 year chronic, been busting for 8 months with one stretch of 49 pf days & nights achieved during the course of busting.  And many, many 3-10 days & night stretches within the busting period.  Like Bobw has said to me over and over...."We're going for 100% PF"  so I continue

Once I discontinued the traditional medications back in May of 2010, I've used maxalt twice when I just was, well you know....at my proverbial wits end!  Proud of this BTW

02 as an abortive, ice, vitamin supplements and of course Juanita Valdeez

I found the Licorice (Glycyrrhiza glabra) root & stolen tincture in a 1:2 ratio with a 19%-29% certified organic grain alcohol.  I used a dropper full twice per day for 10 days.  Also added the skullcap you mentioned in an early post.

I felt as though the shadowing effect was increasing during these 10 days....but I'm also very aware of the increasing shadowing effect being mutually exclusive of the tincture, but still am soooooo not interested in "experiencing" the shadows to any degree.  I may not have given it enough time (insert "gets worse before it gets better theory") but knowing that I'm just teetering in the limbo-land of busted/not quite busted, I decided to set the tincture aside and go with a 60 rc seed dose.

I am very grateful for your posts, your knowledge and your ability to share in laypersons terms the very complicated and importance of a healthy well-balanced HPA. 

Cindy   

[les genser]

Hi folks. Sorry I've been MIA, but wherever I've been, I'm back.

Cindy: Don't be afraid of the shadows. Same thing happened to me, I experienced triggers and shadows, especially at night, for a week or two. For me, they came on but never got any worse or escalated and I found if I just relaxed and realized I wouldn't trigger they just buggered off after ten minutes or so.

I had the meeting with my American Herbalists Guild contact; we are going to write up a detailed case study for publication in their journal sometime by summer. (They don't publish that frequently). This would be the first necessary step to enable an institution, like Tai Sophia, to actually do a more formal project. She was also going to begin reaching out to the network of clinical herbalists and see if anyone has any experience of this.

I was really jazzed to see you guys starting your own poll; based on my continuing study, I will make a few predictions:

1.The tincture will work best for people who have never taken SSRI's, triptans, or diazepam derivatives or other psych meds that act principally within the HPA axis; or at least have not been on them in a long while. Please remember, if you are taking these things do not attempt to use licorice root it will simply make you sicker.

2. Single dose busting with real psylocin indole followed by tincture use as an abortive would probably work pretty well. The seeds are sketchy, too many variables.

3. DGL tinctures or glycerates will not work.

I have been told that the dosages I recommended should be absolutely safe for anyone who can take licorice and the risk of side effect is extremely low; a probable four week course of treatment would be no problem.

Just remember: go back over the drug interactions, don't use it with verapamil (and get off the v if you are on it and not hypertensive its hurting you) and ask your doctor first.

You can of course count me among the successes; I am still fine, using a dose now and then if I feel triggers lurking. I was chronic for about a two year period prior to this.

Back later.

[CHfather]

Thanks, Les! 

I think I've probably said this before, maybe even more than once, but I think there's a point (which you haven't reached yet) where getting information to Dr. Andrew Sewell at Yale might be a good idea. In my experience, he's been quite good at popularizing alt treatments.

Jerry

[Jeffrey]

Les,

I have acquired a licorice extract 1:1, Brand Name- Natures Answer. The claim is that the alcohol is removed thru a cold process ( Bio-chelated).

The doseage on the bottle is 1-2 ml or 28-56 drops 3 times daily.

I have not quite been maintaining the 3 times daily routine.

But at least once daily I hit a full 2ml dose.

Its been 5 days now.  SOMEthing is going on. Last 2 nights Ive only had 3-4 fairly light and quick (easy aborts with water and ice only).  But Ive also had CH's show up during the day at unusual times.  Shadows have been quite irregular and dont seem to respond to individual doses of the extract.

Is this the right product??

[les genser]

Jeff: I am not familiar with that extract. It is my strong suspicion that alcohol removed products will not work, at least not as well as a tincture which contains alcohol. The flavonoids which I believe to be the most active components are lipophilic, meaning attracted to fats, and are soluble in alcohol. I think removing the alcohol removes some of them as well. Throwing out the baby with the bathwater, as it were.

A good tincture will be approximately 40% alcohol, 60% distilled water and nothing else,except for whole licorice root. Companies trying to 'improve' on this basic formula are doing it for some perceived nonexistent reason.

If you are getting some result, and it seems like you are, thats encouraging. A 1:1 extract is very concentrated (ordinary tinctures are 1:5) and just going by your description I think you would have really good results with a standard alcohol product. The actual alcohol in a dose is about a quarter of a teaspoon, and although I trigger when I even think about booze it has never bothered me.

I am going to look around online and see if I can get particulars on some products out there. Remember, these things are not regulated or standardized by anyone; this among other things is what turns some folks off to herbs. The plant always works; its the preparation that is suspect.