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ClusterBusters

les genser

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les genser last won the day on July 20

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  1. les genser

    New Here!

    I will leave it to the busting experts here to advise you re: dosing levels. What you are not being told is that busting may not be effective for you at the moment for a variety of possible causes. As you probably know, the psylocin indole replaces serotonin in receptors which results in less uptake and more stable serotonin levels. If your serotonin levels are low to start with, busting will do nothing for you. Busting does not prevent or mitigate other channels of causation such as the wake cycle histamine dump, or chronic pain loops and neuralgias in affected nerves. If I may offer any advice, while you are waiting to dose again, think more globally. Strengthen your body's ability to mount an anti-inflammatory defense; if you are overstressed (a wild guess) your B vitamins are especially depleted and you cannot mount a defense without them. Are your liver and your adrenals compromised? if you are chronically stressed, again big yes. Do the research and do what you can for them. Do not make the common mistake of the 'modern patient' conditioned to believe that "popping two in the mouth" as Carlin used to say will of necessity solve your problem. I know it doesn't feel that way, but cluster affects and hurts your entire body and you absolutely cannot long-term fix it without considering yourself from the neck down.
  2. les genser

    Do C.H. go away with age?

    O2 has been accepted mainstream medical practice for 30 years. It is unconscionable that people still have to fight to get it. Maybe it has to do with the fact that God holds the patent on oxygen, not Sandoz.
  3. les genser

    Question about a supplement

    OK a little harsh. I certainly do not mean that people who consume energy drinks are idiots, but the people who make them certainly hope that's the case. Know why crack is bad for you? It's not the high at all; its the return swing of the pendulum. I have sung this song before: Every thing you put in your body that has a physiological effect has a reaction attached to it and the ass behind the pendulum is directly proportional to the degree of the initial effect. The higher you get, the lower you go. And yes, it really is exactly that simple. Every drug, every non-food material you ingest that produces an effect does this. The organism will return to dynamic balance no matter what you put in it; it is its purpose. This is why the less you load the pendulum, the better off you will be in the long run. Even competent physicians do not seem to understand this seemingly fundamental principal of rebound to everyone's loss. Contrary to apparent logic, you do not want to use the solution with the most caffeine, the most taurine, mummy dust or whatever. It is hitting a finish nail with a sledgehammer, one that will hit you back. Take this or leave it, but it is based on 42 years of experience: Do the least you need to do to control your CH and thereby minimize your exposure to rebound. Always remember the principal of balance;.. your body does. Rebound, by the way, not always instant or even close. Lipid friendly compounds, other metabolites can show up and wreak havoc 48 hours after ingestion, sometimes longer. Most people on regular pharmaceutical scheds. experience them all the time and aren't even aware. Seriously though, every one of those energy drinks righteously sucks.
  4. les genser

    Question about a supplement

    I would like to concur with and second Ricardo's impression. It is of course my opinion, but 'energy drinks' are made by and for idiots. Their marketing techniques, when I have been unavoidably exposed to them, bears this out if an inspection of their label doesn't do it for you first. Unadulterated caffeine in the form of coffee is much better for you; guarana is even better. Coffee contains fourteen other alkaloids in addition to caffeine, guarana only contains caffeine. If you experience a hypoglycemic dip prior to or during attack, forget the corn syrup or the artificials which all seriously suck. Try this: a spoonful of frozen OJ concentrate; hold it on your tongue against the side of your hard palate (roof of mouth) affected, helps abort in mere minutes and as the stuff melts it restores your metabolism. Staying away from artificial over processed crap that is bad for you only seems like new age "alternative" hippie bullshit until you actually try it and find out that it works.
  5. les genser

    Newbie in cycle

    Since you asked; Depakote is poisonous garbage, marginally useful (if at all) as an anticonvulsive and the chemical equivalent of stabbing your liver every day with a rusty icepick. It is an example of an annoying trend among neurologists, doubtless instigated by their drug reps, to push antiseizure meds on cluster patients despite virtually no evidence that they are in any way useful beyond their own (I'm certain) trustworthy 'science'. Look it up; reading the list of side effects should loosen your bowels faster than a visit to Taco Bell. Verapamil is as long term useful in cluster as goose shit on a pump handle, and bad for you to boot. The best advice you are likely to get is immediately above. Educate yourself; don't take anyone's opinion as fact.
  6. les genser

    Say What!?

    The hypothalamus is located physically at virtually the exact junction of the 5th and 6th chakras; considered the bridge between the upper chakras (connection to higher self, bridge to divinity) and the lower chakras which express and reflect how we relate to the material world and our place in it. Its physical purposes reflect this duality as well; not only does it control purely physical processes (if any such thing exists) but is instrumental in emotional functioning as well which reflects the wisdom of the heart, truly our 'higher' cognitive center. What does this mean? I refuse to refer to cluster as a beast or a demon. We carry it within ourselves; it is not extrinsic to us; and this is nearly impossible to express in language but it cannot be overcome until it is accepted. Do you remember the old French folktale of the beauty and the beast? I think this also means that cluster cannot be overcome by purely reductionist scientific means. It cannot be piecemealed; the entire global person must be considered...people are not machines. And, I certainly understand and concur with Purple's intuition; I have felt this way for some time. It has purpose, although what that purpose may be is hidden and wil require a greater wisdom to explain.
  7. les genser

    Say What!?

    Isn't it nice to know that now that those nice neurologists have solved the problems of all the real people with terrible pain that they have time to figure out and actually publish (ta da!!) a fictional diagnosis for a fictional character. Its a good thing that Harry's headaches (which I personally diagnosed previously as PDES, or plot device expository syndrome) spontaneously remitted, or we might have been exposed to their fictional treatment protocol, which would of course have worked flawlessly since after all, this is fantasy. Spare us all. Hey Renee... your friend is on to something. One would think the opposite would be true, but I have a teacher who says categorically that as a soul (or person within one lifetime) evolves, life becomes more and more difficult as your perception and sensitivity increase. It is a doctrine I have come to unequivocally accept.
  8. les genser

    New Here!

    You need help NOW so lets not dance around here. 1. Oral triptans are generally useless anyway and you don't want to be on them to do any of this stuff, they are not helping you stop taking them. 2. Use the O2 to abort, open your sinuses as fast as possible; use cayenne (instructions in the licorice root protocol cuts abort time in half), use cold air, use ice. Stand outside (no coat) breathing as deeply as you can at a slow even rate until you are literally shivering severely; it forces your metabolism into a 180, you will feel better. 3. Program yourself to get up and attack the inflammation as quickly and vigorously as possible with as many tools as you have. 4. Even if you wish to eventually bust, while you wait for the mailman get yourself licorice root tincture (read the protocol, be off the triptans first!) and use it ASAP. It is the most efficient herbal anti inflammatory agent there is, it can cut your incidence by 80% in days and the viciousness of your attacks in 20 minutes. There is virtually no downside, no side effects. The very least it will do is improve your mood. This is not second hand information. I have had clusters, episodic and chronic, for over 40 years. This is the best cluster killer I have ever found, including LSD and the psylocibes. 5. I am not at all sold on the D3 thing. As an anti inflammatory regimen, it doesn't impress me but this is not the place for this. This is better and FAR faster resultwise: Take a good B complex supplement (they might say 'stress formula') and then ADD Pantothenic acid (B5) at 20X the rate of the other "B's"; example if there is 10mg of B6, say, you want to take 200mg of pantothenic acid. Why? well, pantothenic acid is required by the body to manufacture cortisone. Chronic stress depletes pantothenic acid levels to the point where you become simply incapable of manufacturing cortisone, which is the body's first line anti inflammatory agent. You simply cannot effectively respond to cluster without it, and it is a sure bet that MOST cluster people have deficiencies here. Licorice root, by-the-by, very efficiently prolongs the action of cortisol (metabolite cortisone) in the body by preventing its uptake in the liver. 6. Many of us have felt as you do at one time or another; death seems a release and a viable option. I know I have been there, more than once. It does give you a certain perspective. No doubt it takes courage to live with the uncertainty and unspeakable pain of this syndrome, as is certainly true of many other chronic conditions as well. You are far from helpless. You are certainly not powerless. Remember this: This syndrome is not who you are. There are many options here; once you feel better and can breath, you will find something that works for you, or a variety of somethings, and trust me on this, life will get so much better. I hope some of this is useful to you, and I truly hope you feel better soon.
  9. les genser

    Newbie in cycle

    Sorry you are in pain, but you are in the right place. Other more worthy folks usually do this but in case you come online before they get to you, here's the short version: Read everything you can on this site's archived information because knowledge is your very best friend. Do that first, acquaint yourself with O2 therapy for aborting and find a doctor to prescribe it. Then everyone here will climb over each other to help you. One word of admittedly unsolicited advice, but I can't help it: Steroids are poison, they don't work (as you've apparently discovered for yourself) and they will F you up for life. Verapamil, still regularly prescribed, also sucks; it requires heavy doses to be "effective", its usefulness degrades the longer you are on it and the side effects are abhorrent. Don't take any drug just because a doctor says so; they frequently have no idea what they are actually prescribing and why, they are going by the playbook. Do the research yourself; it is your body. You are not alone, many here have considered death a viable option at one time or another, or wished for it. Admittedly it takes courage to live with this degree of pain; true not only of cluster but many other things. I think lots of us relish the chance to kick it to the curb in a cloud of dust (figuratively speaking, of course). Take heart, you are in good company.
  10. les genser

    Do C.H. go away with age?

    Your doctor is blowing sunshine up your butt with a soda straw. There are no rules, and there is no way to know. I got them at the same age you did and its going on 41 years now. It is a very individualistic syndrome and it presents differently in everyone. Now that I have thoroughly depressed you, be of good cheer. Jeebs is right; if there is any one place you stand a chance of keeping your friend caged, this is it.
  11. les genser

    Back again

    As I said, that is the million dollar question. When someone answers it, CH will finally be curable as opposed to manageable, and not before. It is hopefully universally acknowledged at this point that episodic cluster attacks are definitely related to and instigated by circadian rhythm disturbances; lets call them errors. This rhythmic cycle regulates activity periods and sleep cycles and the hypothalamus is the principal time keeper. When the wake cycle fires, the hypothalamus does many things through other neurotransmitter (largely but not exclusively serotonin) networks; it stokes the fires, orders up breakfast for the soon-to-be active muscles, and starts nudging you towards wakefulness. It ordinarily will fire about ten minutes before you naturally wake up. (If you have ever been awakened by a night hit unaccountably flushed or overheated, that's why). Your body is already cruising along merrily and bang, the A hole drill sgt. is in your face smashing trash can lids together. Picture if you accidently set your alarm to 3AM instead of 8. You would be a bit confused, a bit pissed, and maybe have trouble settling again. But all this is secondary to that first dump of histamine and its lighting of the fuse. This happening between 1 1/2 to 2 hours after going to sleep is fairly common. Repeating at roughly two hour intervals through out a bad night is also sadly common. I have had far too many of them; most of us have. And to reiterate, no one on this plane of existence has any notion at all why this happens. Going out on a limb, I think the most that can be said is that the 'malfunction' if you can call it that is the physical analog of an energetic imbalance in the HPA axis, likely caused or aggravated by deeply held unconscious chronic stress (see the work of Dr. Gabor Mate; I cannot over praise this man's work..specifically "When the Body Says No"). As to causation, I think your notion is correct. No one thing is probably responsible for any given attack. Again, this is probably familiar to most of us as we attempt to abort, "what did I do/not do/eat/smoke/drink/stress over/etc etc to set this F-er off?" and while its a fun way to pass the time in hell, it is rarely illuminating; well not totally true as the truth about personal triggers can be explained in terms impossible to ignore. In the case of the young lad above, I believe the most likely primary trigger in this case was the nap itself, a fairly large percentage of CH people can be triggered in this way.
  12. les genser

    Back again

    Conventional antihistamines are of no use. There are a few reasons for this; First, when the neurotransmitter histamine fires its already too late, secondly antihistamines take too long to work and an attack is far gone before they reach effective levels and they can lead to rebound. You are better off vigorously attacking the inflammation as quickly as possible. Cold air, rapidly raising O2 demand with strenuous aerobic activity to raise BP (it only sounds counterintuitive, it works). This will help open sinuses; if they are closing up reversing this will abort an attack in half the time and lower the pain considerably. Nothing works faster than cayenne pepper properly applied; its anaesthetic and stimulant qualities are immediately effective; it will clear sinuses in minutes and unlike oxygen tanks you can carry it in your pocket. Brief instructions for use are found in the section on aborting in the licorice root protocol. Hope this is useful.
  13. les genser

    Chronic vs Episodic

    Dr. Sewell is absolutely correct re the artificiality of the distinction. The cycle within the chronicity is usually hidden, but I believe the only difference between chronics and episodic people is that between periods, a chronic does not revert to 'normal' sensitivity levels; this has been shown by the difference in mast cell numbers in chronics... they do not go down as in episodics, so a chronic person is always prone to what he refers to as 'spontaneous' attacks (they aren't really spontaneous or random at all, but thats nitpicking). Based on my own unscientific sampling of one, I have definitely seen that when I was able to remove my own chronicity, the underlying periodicity became very obvious; I certainly know when I'm in one and am able to act accordingly. Thanks Jerry.
  14. les genser

    Back again

    Try not to be too upset. It doesn't necessarily mean a cycle is starting up all though obviously the potential is there. Naps are frequently triggering; they confuse circadian patterns and when the wake cycle in the hypothalamus fires, it releases histamine as a neurotransmitter. The wake cycle itself causes the metabolic flush, the histamine sloshing around the nerve sheathing triggers the headache by nerve induction. Why the wake cycle fires at seemingly random times is the million dollar cluster question; that it predictably fires during naps means your son needs to add this to his store of trigger wisdom. I sincerely hope he is feeling better.
  15. les genser

    O2, useless. Why?

    Hey Ting. I think the guys above may have a clue.. I'm no O2 expert and I may be completely wrong but I think it may be the cardio. Doing heavy exercise results in saturating your tissues with Oxygen and accompanying capillary dilation and this state persists. O2 works as an abortive because non-worked muscle doesn't need the extra oxygen and it results in vascular constriction, cutting off the inflammation response. That could be why smoking first (vasoconstrictor) helps the huffing along if your capillaries are naturally dilated. Cold air does the same thing as it pulls energy from your periphery to heat your core to warm the air, and at the same time it causes capillary constriction reducing inflammation in the palate and sinuses. It is just a thought, but perhaps you might try suspending the heavy exercise for a bit and see if that makes a difference. Hope you feel better.
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