les genser
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Everything posted by les genser
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Lt2: Didn't see your post until I had finished my manifesto. I think you need to look at last Saturday in light of #2 and #3 above. I have had similar stuff happen. Did you do anything different, were you exposed to anything? I have had four hour sinus attacks; these probably would have been twenty hours of cluster agony four months ago. I would say (stupid expression, isn't it? I am saying...) that if it changed your pattern, or reduced severity and frequency, or both, then you are getting positive results. Everyone is different, and retuning the hypo may have some roller coaster effects at times for some folks. The stuff doesn't come from Hogwarts, you know. Give it a break.
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Lt2: People do seem to be trying, see above. I have used nothing else except the licorice/skullcap combination since December, first 3X daily as therapeutic dosing and after 3 weeks as needed. Here is what I believe based on my own and others' experiences: 1. It will work best when pharmaceuticals are not present or half lived out of system. Some drugs interact badly with the licorice, notably SSRIs and triptans. 2. The tincture seems to interrupt CH in the hypothalamus itself. Triggers (shadows) are not eliminated, but are manageable and do not escalate. 3. As a result, you can clearly identify your triggers and adjust your behavior accordingly. Not that I have, mind you. My list now includes wood smoke, cigarette smoke, pot, alcohol, gypsum dust and other things. If I do not expose myself to those things, I don't trigger at all. If I do (and I'm frequently dumb enough to) then I get #2 above. The worst I will experience now is something like an allergy/sinus attack, histamine mediated. I am working on a combination which will address those as well, and I have some ideas but I need to wait until things start to grow up here. 4. In cases where the tincture has not worked, I have usually been able to pin it on some variety of #1 above. Or people are using it in combination or as an adjunct to pharmaceuticals. This will not work, I don't recommend it and it could be harmful. 5. In terms of pure percentages, the licorice root stops most if not all headaches when used correctly. This is better odds then you get from absolutely anything being pushed on us by doctors. I am not counting hallucinogens. I know imitrex is roughly 30 bucks per dose. I don't even know what other stuff costs, but I assume its a lot. Jeez, even hallucinogens and seeds are expensive. 6. At 20 bucks for a month's supply, licorice root seems almost too good to be true, doesn't it? 7. I know from long experience that crushing chronic pain results in pattern behavior; the things we take, the habitual ritual treatments. We do them because they are familiar and comforting even when they are not effective. It is very human, but not very smart. The best of the pharmaceuticals has a success rate barely 20 percent above placebo effect, yet people continue to shovel them in. We deserve better. 8. Doctors suck at pain. I'm sorry, but its a fact. They even suck more at figuring out where pain comes from. It has never been a priority for modern medicine. I'm not dumping on them; medicine excels in many areas, but pain is not one of them. It frustrates them no end. 9. It doesn't seem to me to be an insurmountable leap of faith to try a twenty dollar treatment when establishment medicine is not offering anything better.
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I think if we have truly effective remedial treatments, between cycles (a concept I don't remember) they become like snow shovels: just lean it against the wall, forget it and go on living your life. Its there when needed. So much of the psychic torture of CH comes precisely from never knowing when and if it will manifest. I have found that just having the ability to do something effective to stop attacks has reduced the associated stress and anxiety immensely; chronic stress at subconscious levels is prime causation of many ailments.
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There is Celine Dion, true, but your average is still way up there. I'm not dissing Beavers, either.. its just I can picture the commercial involving downing one and racing outside to gnaw down a birch or two. My inner twelve year old thinks its totally hilarious. I appreciate your sentiments, and although it is somewhat beyond the scope of this place, may I add that Monsanto is the corporate antichrist. No company needs a private mercenary army unless they are up to no good, and they are Satan's own whores. I don't think we get the leaders we deserve; I think we get the mold that sneaks in and grows while we are paying attention to other things. In this world the only thing we may truly change is ourselves, and everything else will flow from that. We have decided to not be complacent clients of inadequate medical practice, and look at all the good things that have happened. There is still time for us to be a successful species. As for the bad guys, I hope they know their Hooters lyrics: (not Canadian, sorry, Philly) 'All you sitting in high places; It's all gonna fall on you'.
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Neil Young. Rush. Joni Mitchell. Mounties!! I love friggin' Canada. Seriously, keep the Stanley Cup and welcome. I have a few thoughts for you, if you are open to them. First, ditto to what CH Father said re: oxygen. I have no personal experience of it, but most knowledgeable folks here swear by it. I would much rather see you abort with O2 than with triptans. I have said elsewhere I do not know what the interactions with triptans would be per se since I'm not sure exactly where they are acting. Licorice root should not be used with drugs which act on the HPA axis such as SSRIs or corticosteroids, since Licorice root is itself by definition a substance which acts within the HPA axis.. My brain screams rebound at me whenever I consider Imitrex. It is just a personal prejudice. I am certain that O2 has much lower incidence of rebound potential, if it has any at all. It is certainly better for you from a metabolic point of view. Verapamil should not be used with licorice root, ever, as it will confuse hell out of your body. The results would be unpleasant at the least. The prescribing of this drug is based on mistaken reasoning. Lowering the blood pressure, so the theory goes, will reduce the flow and subsequently the edema and ensuing pain of a headache. It is a case of cart before horse. The various inflammation reactions characteristic of cluster headaches put pressure on blood vessels, resulting in edema (its squeezing the garden hose) and another layer of pain. I do not like verapamil for quite a few reasons, many of which are mentioned elsewhere. Unless you have high blood pressure, you have no business eating it. Licorice root, by the way,is thought to be anti-inflammatory in that it both inhibits the breakdown of cortisol (natural adrenaline-produced steroid) and reduces mast cell activity, both of which are important in reversing histamine mediated reactions. A Shortcut to Mushrooms: If you can get them wildcrafted in BC, search no more. They are a much more reliable source material of the ring with the zing than anything short of Swiss moonshine. Calculating a dose is a much surer thing. The tincture has seemed to work best for people who are not on other regular meds, other than pure abortives. Within a very short time, it should reduce dramatically the need for abortives. While I personally was chronic for years, I believe the best time to start with the tincture(s) ( I really do recommend the skullcap/licorice combination; its a glass of orange juice for your mood) is at the beginning of a cycle. I would be optimistically curious to learn if that is correct. Beaver Buzz? That is just wrong on so many levels I am struck dumb. But it is really f-ing funny.
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Davy: Seriously, brother, read the links. Licorice root in water is as effective as using an Imitrex shot as a suppository. Do not use any of the methods recommended here while on triptans or SSRIs ; the interactions will clearly demonstrate exactly what is meant by a K10.
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Davy; first, welcome.. second, I presume your being here means you are unhappy with what you are doing, so I may be beating an already deceased mule; but if you are taking triptan shots and verapamil and experiencing 3-5 hits a day, why are you bothering taking them? Not only are they not apparently helping you, in my admittedly biased opinion they are probably actively hurting you through rebound and ripple. Find someone to prescribe the O2 or get creative...there's a whole raft of O2 experts here, and most C heads swear by it. Pot is a heavy trigger for many C heads, myself included but it is sporadic (at least in my case) and not as sure a thing as alcohol. Your doctor sure sounds like a tight ass. He's certainly a rubber-stamp prescriber. We have another expression over here for this type, you may have heard it... it starts with "dick" and ends with "head". Welcome aboard.
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OK; to the best of my knowledge, here's the short answer. Whether or not the tincture produces results seems to depend on a few things I have become aware of and probably lots that I don't. Factors which seem to matter are what meds if any you have been taking or have taken regularly. Trigger avoidance seems to matter a lot. (Having experimented on myself, I can state the following with some confidence.) Licorice root will not eliminate outside-in triggering events. This may be TMI, but we're all friends here: My sinuses are extremely sensitive now. Dusts will set them off, as will smoke (cigarette) and weed. I have been trying to quit smoking for months, and when I stay off cigs for a few days, I don't trigger. Smoking pot triggers me the same way; when I avoid it I'm fine, but,well, lets just say I don't avoid it all the time. And I trigger, but the difference now is that its more of an 'allergy' kind of attack of the type I guess normal people get that they run to the benadryl for. Whereas these episodes used to trigger full blowers within minutes which were completely incapacitating, I am convinced the licorice acts as a sort of disconnect, preventing the hypothalamus from getting involved. I can continue to function, and the triggering episode will usually fade out spontaneously. If I don't engage in dumb behavior, I don't have this problem. So here is what I believe: 1. If the tincture changes the pattern or severity of your attacks, its working. 2. How well it works depends on you internally (how much old or new pharm. damage you have, what are you taking now) and externally (are you triggering yourself, knowingly or not) 3. My best suggestion would be to not stress yourself, and abort if you have to. BUT, abort with O2, ice, caffeine etc.; DO NOT attempt to abort with triptan shots or other meds which could interact. 4. Pay attention and you will be able to identify things that are triggering you. Stop them if you can, or if you are an idiot like I am tell yourself you 're experimenting on yourself. 5. I would give it a week of regular use before giving up on it. Hallucinogens can take time and painful hits to produce results. Be patient. I hope this helps.
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Hi Ron. What I do is mostly a version of the pain management (and he says it is long term curative) technique described by Dr. David Dawkins. Oddly, it sounds similar to what your son does. The basic principle is to not fight or resist, but to 'be' with the pain as fully as possible, accepting and loving 'it'. It is necessary to focus and not try and evade. At times when I would be caught on the road, or a job site or anywhere I had no help, no time or no other means, I would just 'trance' myself through attacks. It wouldn't stop them, but it kept me sane. Sometimes if they kipped up really high, you would dissolve into the pain. It made for some interesting head trips, which would have been way more memorable without the tears and the snot. If Dante Allighieri had clusters, that would totally explain The Inferno.
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It is sad but true, confirmed by this week's Time magazine: Doctors are uncomfortable dealing with pain, they are not really very good at it, and chronic pain is the worst of all. We are not alone, friends: people everywhere live with an astonishing variety of heinous shit. Anyway, John..I will issue the exceptionally rare piece of medical advice: Your blood pressure in your post above seems marginally high, and licorice root can in some people raise blood pressure, so I would advise you to arrange to monitor your blood pressure levels if you wish to use the tincture. I'm not saying don't do it, just be mindful. And bravo; every one of us should feel in control of our own bodies and our own health care. It is a birthright.
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Most prices will probably range (retail) around 9 or 10 dollars an ounce. That iHerb price is very fair for what seems to be a good product (1:4 organic alcohol). Organic licorice root will be somewhat pricier as the raw material cost doubles. Even at ten bucks an ounce, its less than 30 cents a dose. I've said it before: Suck on that, drug pirates. I just hope it works for you guys.
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John; I think the consensus is that your doctor is an unfeeling idiot. I will only weigh in on one thing: I have no experience of using seeds with licorice root. I have to admit to not being crazy about seeds in the first place. (I am a big fan of the psylocin indoles, though). I think there are probably too many variables in extraction methods, and a bunch of other things that are not pertinent here. I merely wished to confirm this: If you take the tincture you will know whether its working for you in very short order. If you still wish to bust, I would advise, just to be prudent, to lay off the tincture to do so, as I have no idea how they would react synergistically. The tincture will show definite results within twenty minutes or so. Good luck and fire your fool of a GP.
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Good for you that you got some help, even if the doctor just went for the fallback meds, which even they know are inefficient and largely ineffective. The O2 will help you the most. I just felt compelled to preach once more: Verapamil is evil shit. It does nothing for you you cannot achieve yourself without side effects through meditation or lifestyle change. It is just pharm company bullshit off label usage that it is prescribed for CH in the first place. We have what is essentially a metabolic/regulatory disorder and since the body will try to compensate when the BP is artificially lowered, verapamil just adds another layer to the multiple rebound effects we deal with. And it has a raft of its own unpleasant side effects, as well. Unless it is prescribed for hypertension (and there are better drugs for that, too) it is less than useless; its reflexive playbook prescribing by doctors who seem to want to use a bigger hammer instead of a smarter one. But that is just my humble opinion.
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Greg: The herb pharm is fine. What you experienced is exactly what I've been experiencing, and particularly what I had when first starting... multiple episodes at night which never escalate; I never even got out of bed to deal, I just breathed and acupressured through them and they lasted about five ten minutes. My experience was that the night stuff goes away after about a week of tapering off. Those are hypo events. I think you are showing a good reaction here.
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Jawbone cavitation source of cluster headaches
les genser replied to seacrane's topic in General Board
This is an interesting and familiar discussion. I bet the vast majority of us have considered dental 'sources' for the pain, or had them considered for us. The search for causation and the need to justify to ourselves the reason for our suffering has to be universal; Lots of us have probably also jumped on the aha Eureka that has to be it train a few times. I believe that dental or head trauma, because of proximity to the trigeminal complex and other nerves that pass through the hypothalamus, can always become part of the secondary triggering mechanism for CH. They are not the cause. I stray into the realm of prophecy here based on much research and intuitive certainty: There is no physical cause or defect you can point at that 'causes' CH. We, and all our sad ass ancestors of the CH tribe who have searched for answers have never found one and will never find one. The actual proximate cause is really pretty simple: a confused, misregulated hypothalamus. For episodics, its like using your hardware with software thats almost right most of the time. For chronics, the bad software locks up the machine regularly. The operative question is why that happens, not how. Medicine just looks to the hardware, and computers rarely break down because of a loose screw. You can't see the software, just the results of it running. Our software is emotional, and energetic, and directly causative of all kinds of illness. Doctors are only beginning to recognize this, even though visionaries have been screaming this at them for, oh, about two thousand years. Not bad. The actual cause of Cluster is internal to ourselves, energetic and emotional and stress related, and not a physical defect of any kind. -
Sorry I've been MIA. Early spring flood in Appalachia. To answer the questions raised above in order: 1. Licorice root, as an SRI, is most definitely a mood elevator; I don't like to refer to it as an antidepressant as that sounds negative, but it is a pretty damn good one. It is being studied(???) for use in menopause for this and other benefits, as I suspect its action is largely hormonal. I believe this is one reason the Chinese put it in about 70% of their herbal mixtures. Most sources discourage prolonged use-- at therapeutic levels. (The low end of which is what recommended). However, I'm finding that the effects linger and a once in the morning tonic dose lasts a long time. I think that would be safe to do on a daily basis. Since it does kick in quickly ( those sugars) I prefer to just treat it as a legal bong hit, if you catch my drift, and use when necessary. 2. I think the sugars would also do exactly what you say, so best to do the tincture on some belly ballast. It might slow the onset, but you won't get the sugar burn. 3. Transgenic cell memory, very briefly, is behavior which is learned by cells which is then passed on to their offspring. It is how cells remember pathogens and antibodies, among other things. In our case, in chronic pain the cells "learn" an allergic type response to stress or other triggering stimuli which instigates an attack. This response remains in the cell memory until the cells learn a more 'normal' behavior. The tincture interrupts the allergic response in the hypothalamus (I think), so what you get are occasional triggering episodes that don't escalate into attacks, and these can be aborted pretty easily. I truly believe that if the tincture is working, you need to have faith that it will stop these triggers short of an attack, and relax, don't tense up and stress. I know this is hard to do, because when you trigger you reflexively go for your defenses and your tool kit, but it has at least been my experience that the big bully triggers have been recast as class clown. I guess in short (and why can't I ever be f-ing brief) I'm trying to say if you are 'triggering' it doesn't mean the tincture is not working for you. 4. The force is with you, always.
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This may be helpful, as there seems much confusion about: If you are having trouble locating a source for tinctures, these may help: I looked at websites and I will only comment on those that provide technical specifications for their products; and those that will mail order retail. In the US try Mountain Rose Herbs; all their stuff is organic and small batch and they make a 1:4 whole root tincture. Its also priced decently, 9 bucks a fl. oz. In Europe (thanks Tony) try organic herbal remedies (organicherbalremedies.co.uk/ whose product also looks pretty good.
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One more thought I forgot, and it may be suggestive ( I don't know to who, exactly.) A few people have mentioned being more aware of shadows after starting the tincture. I had the same experience, and I think I have an idea why. When we ordinarily get 'attacked', the onset is so fast that it is practically impossible to separate causes from effects. I believe that the tincture works directly in the hypothalamus, in some fashion stabilizing serotonin levels and thereby, downstream, preventing cortisol depletion without additional adrenaline release. But we get hit two ways: Inside out, which is direct hypothalamic triggering (an example would be the infamous sleep hits) and outside in, which is triggering by feedback loop (shadows). Chronic pain results in our personal feedback loops, which all travel directly back to or through the hypothalamus, being hypersensitized over time. They can and do trigger the hypo from the outside, and are more in the nature of histamine mediated things, like allergic reactions. (Sinus swelling, neck muscle pain, congestion, stuff like that). The licorice tincture, by whatever seeming magic it possesses, decouples the hypothalamus from the pain cycle. So expect the triggers to continue, but I think you may be pretty sure they will not escalate. That is pretty much where I am now; if I feel shadows lurking I'll take a dose and relax. Once they are gone, usually about twenty minutes, they don't return. (Did I mention that this tincture is also a really fine mood elevator? and that it also removes toxins from your liver, just because). Triggers have transgenic cell memory going for them, and they are likely to take a long time to fade, but they will.
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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.
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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.
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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.
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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.
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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.
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Verapamil To Stop CH cycle from Starting
les genser replied to JeffC's topic in Research & Scientific News
Hey Jeff. Sorry to hear you are possibly close to cycling. Do not consider verapamil. Look at the stats; its only marginally effective at best, it causes all the nasty side effects you would associate with a blocker.. you sound like you are pretty active, you wouldn't like it. And it causes rebound up the yingyang. While you are considering options, and doing your research, have you read the 'herbal option' posts on the general board? I don't mean to sound like a car salesman, but if you are thinking about non-med options read it. So far, 2 chronics and 2 episodics in total remission. I have been totally PF for eight weeks, longest period in three years. My experience so far is if you take the tincture to boot shadows, it works as a pre-abortive and you're good for about twenty four hours. If you are familiar with pharmacology, read some of the stuff out there. I think you'll be impressed. -
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.