1961mom Posted April 19, 2011 Share Posted April 19, 2011 Just to chime in regarding Beavers...I'm an Oregonian and we have a few folks in a sleepy little town called Corvallis that just love them! I, however am a DUCK (no NRG drink named after us sadly).....But still fitting in a way to this inspiring thread... If it walks like a Duck, talks like a Duck....it's probably a DUCK! First I want to speak to CHFather and say thanks for posting quick links. It was so helpful to me in my early days here on the boards to find "links" reposted as a courtesy by others who knew right where to jump to, copy & paste. Priceless gesture of kindness IMHO. Les...I'm a firm believer that Verapamil has no business as a treatment option in our disorder and would like to have permission to "borrow" your well-phrased explanation that begins.... 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. ....you've eloquently written what I've been unable to write for approximately one year now. My blood can almost boil when I get on the subject of verapamil! So before I allow that to happen I'll assume the lotus position here at my keyboard and type what I believe is the truth: Ingesting Verapamil was intrinsically involved in morphing this episodic sufferer to chronic. As a side note.... I detoxed from all medications one year ago (started mushroom tea/ rc seed therapy; last dose Feb. 1st) and continue to use only 02 as needed. I am virtually pain free but certainly aware that my nervous system is not completely quieted down. The other systems (sinus, arterial, venous) will remain fairly calm if I'm quick to act with 02. Autonomic aborts!!!! It's taken me a year to be able to do that....which brings me to the last thing I wanted to agree wholeheartedly within this thread..... We are a strange lot. . .seems like we can only give a new option a few days before declaring it ineffective (myself included). Possibly due to the "drive-thru" society we've evolved into being. Which is very difficult to "check out" of even with this disorder! I recall a neurologist who prescribed lithium to me in the 80's saying..."It may take several weeks to get to therapeutic levels". I somehow understood subconsciously that his advice was sage just not to be applied with lithium ingestion!!! Salute to Beavers, Ducks and Healthy HPA axis's! And of course......HAPPY BICYCLE DAY! Cindy Quote Link to comment Share on other sites More sharing options...
CHfather Posted April 19, 2011 Share Posted April 19, 2011 Thanks for your kind mention, 61mom, and so glad to read of your success. Love your borrowed quote! Although I don't live there any more, my daughter and I enjoyed our happiest years living in Oregon. I'd move back to PDX in a second if it were feasible. Quote Link to comment Share on other sites More sharing options...
1961mom Posted April 19, 2011 Share Posted April 19, 2011 Tune into "Portlandia" on On Demand http://en.wikipedia.org/wiki/Portlandia_%28TV_series%29 You'll get your Portland fix and some good laughs too! Quote Link to comment Share on other sites More sharing options...
Lieutenant2 Posted April 19, 2011 Share Posted April 19, 2011 Just checking back in with an update on my licorice experience, and in the interest of keeping this topic alive. . . I've done a poor job keeping my CH diary, but I guess I'm about six weeks in. I did three weeks of 3x per day, dropped down to 2x per day, and was scheduled to go to 1x per day this week. During this entire period, I've had many stretches of pain-free days, lasting 3-4 days or more. More importantly, during this entire period, I haven't had a single nighttime hit. Not one. Now, for the bad news. . .the monster is still there. I do get hit, usually in the afternoon, and they are still intense. I pound energy shots, that's my only abortive. They take the edge off and make it bearable. I've had a few days in a row of bad hits this week, so I am staying on the 2x per day regimen for now. When things slow down a bit, I will drop to 1x per day. So far, my blood pressure remains normal, so I don't see any danger in it. So that's it for my ringing endorsement. The licorice hasn't provided the magic bullet, but it has improved things tremendously. For about $12 for a month's supply, it's worth every penny. Quote Link to comment Share on other sites More sharing options...
CHfather Posted April 20, 2011 Share Posted April 20, 2011 Lt2, I really appreciate your clear and thorough updates, which are really important for those of us facing decisions about ways to deal with CH. Thank you. I recall that in a post you were critical of those who say "oxygen, oxygen"; and I am clearly one of those people. So, with some trepidation, I'm wondering why you choose not to use it. No judgment whatsoever -- you're clearly capable of making that decision for yourself. I just figure it might make me a little smarter to know about your choice. Or maybe it just doesn't work for you? Thanks, if you choose to reply. Quote Link to comment Share on other sites More sharing options...
Lieutenant2 Posted April 20, 2011 Share Posted April 20, 2011 Thanks, CHFather. . .as I told Les, I am more than willing to be a guinea pig for something that doesn't come from a pharmaceutical conglomerate! Sorry if I was misunderstood. . .I am definitely not critical of oxygen at all. I was, however, being critical of one particular person who chooses to dismiss any and all new ideas with that exact phrase. But I digress. I've just chosen not to go the oxygen route due to my lifestyle. I can't have a tank at work, I'm rarely at home, and I'm fairly active. . .if I'm not sleeping, I'm on a mountain bike, skiing, climbing, kayaking. . .none of which are conducive to carrying a tank. Don't get me wrong, there are days when I really really really wish I had an abortive method that was as fast and effective as O2! I am tinkering with the licorice as an abortive, I think Les mentioned this earlier. A couple days ago, I mixed a dose of licorice and 1000mg of taurine powder in an ounce of warm water, and it worked at least as well as an energy shot, if not better. Close to full abort in about 10 minutes, without the caffeine jitters of the energy shot. All of that being said, I still have a bag of RC seeds in my freezer, and I am seriously considering it if I backslide at all. Quote Link to comment Share on other sites More sharing options...
CHfather Posted April 20, 2011 Share Posted April 20, 2011 Thanks, Lt2--and thanks also for the licorice root/taurine idea, which makes good sense (and, yes, Les did say the LR could be used as an abortive). For whatever it might be worth, there's a portable backpack-based oxygen system on p24 here: http://www.ouch-us.org/medications/oxygen/O2_CH_Abortive_v2r7_Final.pdf Quote Link to comment Share on other sites More sharing options...
Lieutenant2 Posted April 20, 2011 Share Posted April 20, 2011 For whatever it might be worth, there's a portable backpack-based oxygen system on p24 here: http://www.ouch-us.org/medications/oxygen/O2_CH_Abortive_v2r7_Final.pdf Thanks for that link, CHF! That looks cool. . .but until they reduce the size another, oh, 1000% or so, it won't be going with me. I'm one of those guys who cuts the handles off of toothbrushes to save an ounce of weight. :-) Quote Link to comment Share on other sites More sharing options...
CHfather Posted April 21, 2011 Share Posted April 21, 2011 I'm one of those guys who cuts the handles off of toothbrushes to save an ounce of weight. Gosh, I'm one of those guys who might cut the handle off the toothbrush so I could lift it more easily. Bless you! And thanks again for your generous presence here. Quote Link to comment Share on other sites More sharing options...
les genser Posted April 21, 2011 Author Share Posted April 21, 2011 Hi folks. Thought I would chime in with a confession of stupidity, followed by a few thoughts I will throw out for consideration. Stupid first: As well as I am convinced that licorice root works, it has one seeming glaring inadequacy in that it does not do much to alleviate the associated neurogenic pain syndromes referred to variously as shadows, triggers, neuralgias. etc.. Not everyone gets these things, or gets them to the same extent but if you do, and you know who you are, you know they are half of your problem with cluster, and once they kick in they are hard to get rid of. I have worked at trying to find an effective agent to combat these things, and in a manner of speaking, I have succeeded. By literally doing nothing. I obviously need to explain. Here comes the stupid part. I started smoking (cigarettes) when I was 16, and a few years later developed cluster headaches. Over the years more than one person has suggested a link between the smoking and the headaches but I dismissed it out of hand. I even thought of tobacco as 'first aid' for clusters in that the vasal dilation was a good thing. For all I go on about rebound and pendulums balancing I was apparently immune to my own BS. And so I eventually found the licorice root, and success except for the shadow/trigger/neuralgia things that of late had been seemingly getting worse. All this time, please understand I have been a perpetually 'quitting' smoker, sometimes heavier and sometimes not, but never being able to just give it up. And then last week I read with portents of doom the links re nicotine that the bb posted and my giant infantlike denial was no longer possible. I'm sure the least astute among you knows where this is going. To make this tolerably brief, I stopped cold, waited 48 hours to detox from the nicotine and then decided to keep a journal of triggers and shadows, so here it is: Pardon the theatrics. There were none. I don't mean they were reduced, or diminished, or less noticeable, I mean they literally frigging disappeared. It is now just about 7 days from detox. On the one hand I am thrilled. On the other, I am facing the distinct probability that approximately 50% of the agony I have endured over 37 years has been self inflicted through willful ignorance. That, my friends, is world class stupidity. Now for the thoughts. Obviously, smoking was a huge trigger for me but not everyone smokes, and even people who do may not be triggered by smoking. What is the commonality? Pain is a language we do not understand. Pain is the body communicating desperately in a language that we have trained ourselves to trivialize and ignore. We make heroes out of the people who are most successful at this. We have entire industries devoted to stamping out pain with a capital P, the most insidious capital E- vil right up there with Satan and Justin Bieber. Doctors fear pain and do not speak the language. Until recently they were inclined to think of pain as an unfortunate but unavoidable side effect of the practice of their art, and well, just one of those things. We're all just as bad. We are inclined to largely think of ourselves as heads in troublesome meat and bone carrying cases, and we are inconvenienced when they demand attention. As the great Alan Watts said, (about hallucinogens, actually) when you get the message you hang up the phone. When I ran out of stupid and stopped the smoking the pain stopped. I don't mean this to be facile or oversimplifying generalization in any way. Our collective causations are complex, individual, emotional, chemical, energetic and environmental. But the pain is not punishment. It is communication, and when we understand it, we will have done something. I really think everyone would benefit from reading Dr. Gabor Mate's "When the Body Says No" on the connection between stress, emotion, and illness. And now, I must away. I have thirty five minutes of 4/20 left, my lovely, intelligent and fearlessly honest wife has gone to her mothers, and I have just received disc two of the third and last season of Kung Fu. I have waited since 1974 to find out how the story ends. I may be stupid, but I am also very patient. Quote Link to comment Share on other sites More sharing options...
Bonkers Posted April 21, 2011 Share Posted April 21, 2011 Looks to be an interesting read. Here's (part of) the 1st chapter: http://www.whenthebodysaysno.ca/read.html#1. Quote Link to comment Share on other sites More sharing options...
yury66 Posted April 21, 2011 Share Posted April 21, 2011 hi les i found your post very interesting ,though i just read it and obviously bought it today..I'm taking though 350mg of calc antagonist and 10 drops of anti epileptics per day should i not take this now ? should i cleans first?? :-/ Quote Link to comment Share on other sites More sharing options...
les genser Posted April 21, 2011 Author Share Posted April 21, 2011 yury: 1. Ask your doctor about potential interactions. 2. What specifically is the 'anti epileptic'; do you have a diagnosed seizure disorder? 3. Is the calcium an antihypertensive? Quote Link to comment Share on other sites More sharing options...
PHRF224 Posted April 21, 2011 Share Posted April 21, 2011 Hey Les! A little hard on the Bieber last night wern't you....? Quote Link to comment Share on other sites More sharing options...
les genser Posted April 22, 2011 Author Share Posted April 22, 2011 I don't know... I take the concept of institutional, ordained by the cosmos evil (personified I suppose by Satan) about as seriously as I take Justin Bieber, which is to say not at all. I suppose in a circular and unnecessarily obtuse fashion I was trying to say that I don't believe pain to be 'evil'. My sincere apologies to Justin Bieber who I'm certain is a nice enough kid, whoever he is. Quote Link to comment Share on other sites More sharing options...
CHfather Posted April 22, 2011 Share Posted April 22, 2011 A little hard on the Bieber last night wern't you....? I suspect this was more of a subtle pun/joke than a serious question -- though I like that you give serious answers. The more common version begins "Hey Ward, a little . . . etc." Quote Link to comment Share on other sites More sharing options...
PHRF224 Posted April 22, 2011 Share Posted April 22, 2011 I was just trying to create a little Bieber Buzz with this. We heard rumours that Celine Dion was going to retire, so we had to create a new Canadian pop superstar. I was thinking after I wrote the above line, wasn't the reference... "Gee Ward, a little.... This also opens the door for the new hit sitcom "Leave it to Bieber..." Les!! Tell me with a straight face you've never heard that line.....lol Quote Link to comment Share on other sites More sharing options...
clustermom13 Posted April 22, 2011 Share Posted April 22, 2011 Les, One cannot disrespect he who is honest with himself and about himself. Not only are you doing yourself a huge favor in the pain department, but with all the other diseases you are no longer helping along. Good for you!! Quote Link to comment Share on other sites More sharing options...
les genser Posted April 23, 2011 Author Share Posted April 23, 2011 There is a precept I like which says " when the student is ready, the teacher appears." The teacher comes in many guises, infrequently as a wizened sage but far more likely as a random line from a friend, or something overheard, seen, felt, read or chanced upon. I have learned one thing. The trick is to pay attention, and that is harder than it seems. Sometimes what you learn is that your body is way smarter than you are, but it loves you anyway. I honestly didn't get the Beaver reference (someone is always bringing up beavers; forget the Cleavers this is starting to go way Twin Peaks). But then again, it was probably Freudian as June Cleaver terrified me as a child. The original Stepford wife. Nobody's mom I knew looked like that. Baking cookies in cocktail dresses and hooker heels. And Ward? JTFC the two of them are the pictures they show new pod people to get them to be perfect pod people. You know they had a cub scout collection in the basement. And that goes double for Donna Reed. I have issues. In all honesty, I pulled Justin Bieber out of my... well, just say I picked a name of someone whose name I knew as a banal but inoffensive pop star type, attractive I presume to very young girls too young to want to have sex with vampires. Someone whose very mention in the same sentence with the prince of darkness would amplify the ridiculousness of the association. Not 'The Association', the 60s rock band whose hits include 'Windy' and 'Along Came Mary', I mean the association. But I digress. Obviously I have underestimated the gravity of invoking the name. Much like Death Eaters will appear when the name of Voldemort is pronounced, I have heard that certain fanatic denizens of the Bieberverse will hacker-like materialize in your system for your transgression and flood it with bad fan fiction and awful poetry, heavy on the mist and wild horses. Were I to dissappear mid-diatribe, you'll know what really happened. You may indeed ask yourselves just exactly how medicated am I this evening. Seriously, thanks to all who even read that confession of sorts. If its helpful at all it is as I intended. I hope everyone has a lovely weekend. In the infinity of solution, we shall all be well. Quote Link to comment Share on other sites More sharing options...
yury66 Posted April 23, 2011 Share Posted April 23, 2011 hello everyone ..hi Les! i wanted to fill you in on my situation i'm a chronic ch sufferer i've been chronic for about 3 years been suffering fo 15, i red all your thread since xmass caught up with the various opinions and i went to buy the liquorice root abut not yet being off verap and some drops of anti epileptic about 350mg of verap and 10 drops of rilamig anti ep at night ,i probably made the mistake of taking the root 30 drops 3 times a day before de toxing while taking the other meds even though i'm cutting doun the verap daily ,so it's been 3 days now first day i had no night time episodes and was THRILLED!!! but last night was a nightmare 7-8 episodes finished mi oxy tank had to resort to my cut down dose of imigr..i cut the doses in 3 and they seem to work most times...But what should i do keep cutting down on the verap and keep taking the root?? i also have shrooms and have had the in a box for months but i have never been clean enough to take them because as soon as i cut down on verap i get hit bad!! please les or someone suggest what i should do :'( thanks guys hope i get an answer soon i'm desperate!!! Quote Link to comment Share on other sites More sharing options...
les genser Posted April 23, 2011 Author Share Posted April 23, 2011 Hi Yury. I can provide a more substantive answer, but I do wish to know why precisely you are taking an antiseizure med. To use practically any busting strategy spoken of here it is best if not essential to detox from pharmaceuticals first. What you describe, the tincture working right off and then setting off an S-storm, if a pretty typical picture of licorice root meets toxic chemical whose presence it does not enjoy. Do not take it while using verapamil. The antiseizure med is in reality a triptan not marketed in the US, a serotonin agonist NOT to be taken with licorice root. Previous paragraph goes double here. The remainder of the answer depends on why you were prescribed verapamil and the triptan. If it was solely for cluster, read on. I cannot give you medical advice. If it was me though, I would stop taking the verapamil and titre down the triptan instantly. You will get rebound hits. Ride them out. It is not pretty or easy but its also not as bad as you are afraid of. Use any mechanical abortives you can think of but nothing chemical other than caffeine. You can start using licorice root carefully 48 hours after stopping the meds, the tincture will start balancing serotonin levels. If you wish to use the other lovely plant products you have, the tincture will not likely interfere if you stop taking it while actively busting. In trying to empathically experience the combination of those two chemicals in my own body, I gave myself a swift case of the creeps. If they were prescribed for no other medical condition than cluster, the combination of the two is particularly offensive, and they are a significant part of your problem. I mean my problem, since this is just what I would do, personally. Quote Link to comment Share on other sites More sharing options...
yury66 Posted April 23, 2011 Share Posted April 23, 2011 thanks Les i will try to detox and ride it out even though running a business without sleeping at night does not make of me a happy camper :-[ and as far as the anty epileptic goes i live in italy and it was prescribed to me by one of the most well known neurologists and expert in the field whose name is Dr leone at milanos besta hospital ,this is one of the MD's responsible for creating the chip implant to stop pain signal which he did not recommend to me ,he recovered me for 1 week and bombarded me with cortisone and magnesium and i was actually fine for 5 months or so with an occasional attach .But then everything started again so back to high dosage verap and thi anty apilepsy crap...I'm doing yoga for whatever good that will do,,I'm usually under allot of strss and that does not help...iddunno :-/ ..i gotta go cold turkey on the meds and take the shrooms and the liq root....i gotta do it...thanks again Les and my compliments for your knowledge incredible......ciao. Quote Link to comment Share on other sites More sharing options...
Potter Posted April 23, 2011 Share Posted April 23, 2011 Thanks, CHFather. . .as I told Les, I am more than willing to be a guinea pig for something that doesn't come from a pharmaceutical conglomerate! Sorry if I was misunderstood. . .I am definitely not critical of oxygen at all. I was, however, being critical of one particular person who chooses to dismiss any and all new ideas with that exact phrase. But I digress. [highlight]I've just chosen not to go the oxygen route due to my lifestyle. I can't have a tank at work,[/highlight] I'm rarely at home, and I'm fairly active. . .if I'm not sleeping, I'm on a mountain bike, skiing, climbing, kayaking. . .none of which are conducive to carrying a tank. Don't get me wrong, there are days when I really really really wish I had an abortive method that was as fast and effective as O2! I am tinkering with the licorice as an abortive, I think Les mentioned this earlier. A couple days ago, I mixed a dose of licorice and 1000mg of taurine powder in an ounce of warm water, and it worked at least as well as an energy shot, if not better. Close to full abort in about 10 minutes, without the caffeine jitters of the energy shot. All of that being said, I still have a bag of RC seeds in my freezer, and I am seriously considering it if I backslide at all. Just wondering why a fireman wouldn't have Oxygen at work? Potter Quote Link to comment Share on other sites More sharing options...
les genser Posted April 23, 2011 Author Share Posted April 23, 2011 Their tanks, Scott packs and such contain air mixtures like scuba tanks do and not highly combustion reactive oxygen. Quote Link to comment Share on other sites More sharing options...
Potter Posted April 23, 2011 Share Posted April 23, 2011 Their tanks, Scott packs and such contain air mixtures like scuba tanks do and not highly combustion reactive oxygen. No firemen have o2. Scuba for the average joe is compressed air. Potter Quote Link to comment Share on other sites More sharing options...
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