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Title: 19 year clusterhead now drug free! Post by evilchopper on Sep 2nd, 2004, 6:24pm Hi, My name is Chopper, I live in a suburb of Chicago, I am a 37 year old male, a 19 year clusterhead, a 17 year chronic clusterhead, and for the last 5 years I've had migraines on top of the clusters. My first two years were episodic, but quickly turned chronic. Things have continually gotten worse for me, with every therapy I have tried they keep coming back worse than ever. I've been through all the brain scans CT, MRI, and tried every drug and therapy currently available (and even some that may never be available due to their controversial nature.) Through 5 general practicioners and 4 neurologists, one opinionated nurse(my Mom), I didn't even have an understanding of the basic mechanisms involved in clusters. Sometimes I would have no temporary relief from the cluster pain for days at a time, just wave after wave after wave, and if there was temporary relief, it was soon interrupted with a flashing aura and then a 20 hour migraine with all the water works(vomiting/diahrea). Occasionally I would have some cluster waves within my migraine. The only treatment that provided relief was the sumatriptans, and that only After 15 years of continued suffering. I thought I had my life back since I could successfully use them to treat the pain, but soon even their effectiveness waned. I understood that the latest research has revealed extra gray matter in the hypothalamus and leads many researchers to believe that cluster is a brain defect of some sort, and that there may never be a cure. I also felt that my cluster pattern was more severe than most with the chronic form of this affliction, and I aimed to find out why. Maybe I could reduce the affliction to just a periodic, or at least a less severe form of punishment. I could maybe never find the reason I had clusters, but if I could find the reason mine were worse, then it's more than anyone else has been able to. Due to the chronic clusters I had dropped out of law school in my 3rd year, and was unable to hold a job any longer, and soon my insurance dried up, and at $20 ea. for Imitrex pills, my bank account was quickly drying up also. The only thing there wasn't a shortage of was pain. I've pushed my cartoid artery so hard for so long that my finger is now bent 1/4" inward when held next to the other hand. Well I couldn't take it any more, so I began to search like a mad scientist, (technically my degree is in physics, and I'm quiet fluent in chemistry and mathematics also, but these are a far cry from medicine and bio-chem! However, we all use the scientific method, I was just lucky enough to be my own guinea pig.) I made a few observations along the way, actually they are more like clues, but I failed to see their relevence when all I could think about was getting immediate relief. That's it for post number one, there's more coming in a bit. Please bear with me, this could get long, but I did finish my Eagle Scout before my clusters really took hold, so I promise I'm telling the absolute truth, with a minimum of artistic license. I am not pitching a product, I am just a person who has spent a lot of time suffering in solitude. I've lost 19 years of my life to this affliction. I believe there is hope. If there was a smiley with a knife in his eye, I would use it here. -Chopper |
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Title: Re: 19 year clusterhead now drug free! Post by evilchopper on Sep 2nd, 2004, 6:32pm This is my second post and is a continuation of my first post: I made a few observations along the way, actually they are more like clues, but I failed to see their relevence when all I could think about was getting immediate relief. I noticed that the re-emerging pattern of each episode was wavelike, first smaller waves, then slowly increasing in intensity on each wave, and then reaching a crescendo, before retreating in the same manner. This seemed very similar to peristaltic action. I noticed some foods seemed to trigger headaches, but there was never any rhyme or reason to it when charted and analyzed, I had no direct connection. My doctor had remarked once that the only thing out of the normal on my blood tests was 'high alkalais'. I noticed some standard sypmtoms I had were similar to immune system responses.(lacrimation of eye and nasal passage for instance) I also had other symptoms which I had not mentioned as I felt they were insignificant,(not to mention humiliating!) Digestive problems, which I'd had since I was ten, like hemmoriods, which occasionally bled, some occasional diarhea, cramping, occasional vomiting. I had always attributed the stomach problems to medication that I'd taken since I was 7, specifically penicillin, every day from age 7 to 16, at which point my doctor put me on a stronger antibiotic (minocin) at a high daily dose. I noticed the immediate effect alcohol has in triggering a cluster episode. I also noticed that there were additional syptoms I was having that I did not see in any research or literature for clusters. Heart palpitations.(I had attributed these to a suspected mitral valve prolapse that may have developed during a bout of rheumatic fever at age 7.) I was always having warm flashes.(I had always attributed this to my medication) I had excess phlegm after meals, and the worst heartburn you could imagine, sometimes if I belched, I almost choked because the burn was so bad I couldn't breathe. My mouth was always dry and stringy. (which I attributed to the massive amounts of lithium I was taking) I couldn't seem to keep my mouth irrigated. My teeth were not white anymore and seemed to decay even though I regularly brushed flossed and saw my dentist. They were not yellow on the surface, but kind of seemed off colored greyish translucent inside. The decay was below the gumlines mainly. My diet was also poor, coffee, lots of meat, lots of bread, and lots of sauce. However the only solid connection I could make was with alcohol, probably due to the immediacy of the cause-effect. Oddly enough, I noticed an inability to concentrate like I used to be able to in college and law school. Sure I was still quick witted, but I had trouble working with complex differential equations(which I used to be able to factor completely in my head), I had difficulty in carrying complicated lengthy trains of thought when trying to apply convoluted legal theories to pertinent fact scenarios,(which I used to be able to do effortlessly), or even occasional problems with simple word recall (like I was drunk or something.) Like many cluster sufferers I also smoked and drank, quitting drinking upon realizing the connection. Well, this has gotten very long but I feel I've got to tell my story, in case it might even by error help anyone either relieve their pain, or at least carry on the fight, moment by moment! I am not selling products, this is not an ad, I am not a doctor, I am just sharing my personal struggle which has lasted for almost 20 years now. Now I am almost pain free with an occasional light cluster here and there, and full blown episodes if I drink alcohol, so I know I'm still "cluster positive" for lack of a better term. My path of learning was one of learning from my mistakes, and without my mistakes I would still be taking over 1500mg Lithium/day(talk about vegetable, call me smiley), 120mg amitryptaline hydrochloride/day(call me sleepy), 120mg beta-blockers/day(lowest BP in town), 200mg sumatriptan/day(I was glad to pay the price when I could afford it). Now I am clean, no drugs! No more big oxygen tanks to lug everywhere, no more painful experimental treatments, no more suicidal tendencies! I'll start tying in the individual elements mentioned above and how they tie into the 'big picture' of leukortriene chemistry and the vascular system and the immune system and how they set the stage for ideal development of clusters into chronic clusters in my next post. It gets very complicated, but anyone who has a taken a college level chem or bio course should be able to follow along with out any trouble, and maybe even correct me on a few things. Anyway, even if you guys think I'm a nut, it really does help to share our experiences and realize that we are not alone, even if that is how we spend the majority of our cluster time. More Soon, -Chopper |
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Title: Re: 19 year clusterhead now drug free! Post by Superpain on Sep 2nd, 2004, 6:42pm [smiley=huh.gif] And??? |
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Title: Re: 19 year clusterhead now drug free! Post by don on Sep 2nd, 2004, 7:09pm Get to the point chopper. Whats this going to cost me? |
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Title: Re: 19 year clusterhead now drug free! Post by Kris_in_SJ on Sep 2nd, 2004, 8:00pm Huh? .... So? .... Kris |
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Title: Re: 19 year clusterhead now drug free! Post by IndianaJohn on Sep 2nd, 2004, 8:01pm I smell something fishy... [smiley=confused2.gif] |
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Title: Re: 19 year clusterhead now drug free! Post by BlueMeanie on Sep 2nd, 2004, 8:13pm Rut-ro. Sounds pretty convincing so far. 19 year Clusterhead gone PF. O.K., time to tell us your secret now. |
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Title: Re: 19 year clusterhead now drug free! Post by evilchopper on Sep 2nd, 2004, 8:31pm I am not selling anything, just telling my story. If it helps you, then great, but my specific circumstance was that I improved my condition by fitting together a bunch of small pieces and seeing the big picture. Instead of trying to implicate one cause, I was able to see how several smaller seemingly unrelated factors affected my health. I grew sick of treating the symptoms, so I began looking for the causes. I did not find the cause of cluster headaches. I found why mine spiralled out of control so quickly and never relented for so long. The never relented because I didn't fully understand my symptoms, and what they were telling me, for instance, I thought I had rebound headaches too, but they turned out to be migraines. I never thought they were migraines, because they seemed a minor nuisance compared to 12 hour cluster attacks, but soon they featured explosive auras that left me blinded for hours. I will tell you how and why I feel I developed migraines, and why they appear concurrently with only the most serious cases of chronic cluster. Now with a better understanding of the vascular system, the immune system, and leukotriene chemistry, I was better able to understand why certain foods were triggers, and that even thought there seemed to be no immediate connection, they influenced certain levels in the blood, which in turn influenced vascular stability. For example, I was simply able to modify my diet and daily activities to minimize the devastating effects of cellular level oxidation. I am not a doctor and do not feel comfortable getting into the specifics with out telling my whole story so you can see why I came to certain conclusions. This is not medical advice or an ad for anything, I'm just here to explain the process I went through in determining how to approach the treatment of my condition. It may be that it's a complete coincidence that my chronic cluster condition disappeared due to my changes, but all my other symptoms disappeared too, and not mysteriously either. I now have rhyme and reason! I now love to wake up in the morning. I promise more soon! I hope it helps. It's free. -Chopper |
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Title: Re: 19 year clusterhead now drug free! Post by evilchopper on Sep 2nd, 2004, 9:04pm Here's a bit of background that helped me to further understand cluster pain. It is undisputed that certain blood vessels spasm uncontrollably during cluster. I found that there was some relationship between my digestive system and my cluster mechanism, so I proceeded to learn more about how the digestive system worked, and how the vascular system works. I learned that blood vessels can spasm for many reasons, and there are many small chemical processes that occur between organs and the bloodstream that can influence the spasming. I also learned that there are two types of spasming, contraction and dialation. I learned that if your blood ph was too high or too low, spasming could be triggered. I also learned that blood ph is dependant on several factors including leukotrienes. What are leukotrienes? I learned that oxidized fats that are manufactured by the lipoxygenase enzyme when it encounters things like dietary fats from farm animals that have been fed soy and corn. OK, here is where it gets tricky, and this is only 1 small part of the whole picture: This manufacturing of leukotrienes is very explosive. It uses all your chloride reserves, which in turn frees up the element sodium(which is usually paired with chloride as salt!) The sodium in turn binds to the primary acidic buffer of blood, carbonic acid. The blood is now acidic, and reduces things like B12 absorption and influences cellular oxygen content. Remember too acidic blood can cause spasms of blood vessels, and that my doctor indicated my alkalais were high(acid blood!) Little did I know that my favorite foods like chicken and beef could be influencing the severity of my clusters. A little experimentation seemed to help a lot, but the picture was far from complete, remember I had migraines too which, if the above is true, would indicate that the blood was not acidic enough(too basic). Well this will be resolved later, I promise. I didn't want to get into specifics without detailing my whole history, but I don't want you guys thinking I am here to string you along. This is just the beginning of my story, don't run out and say you know how to cure clusters now, you'll see why this was actually a very small part of my story. I am not a doctor, just a guy who was able to put the pieces together for myself. Much of this information I have gleaned from medical journals and medical websites, I just applied it to myself and my lifestyle. Chicken and beef are not bad, or evil or dangerous, but they are one piece of my puzzle of pain. -more soon -Chopper |
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Title: Re: 19 year clusterhead now drug free! Post by Virginia on Sep 2nd, 2004, 9:13pm OMG! Is there an end to this? :o Have you told us what you did to stop the headaches yet? My eyes glazed over quite a few paragraphs ago...did I miss it? |
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Title: Re: 19 year clusterhead now drug free! Post by BlueMeanie on Sep 2nd, 2004, 9:19pm on 09/02/04 at 21:13:37, Virginia wrote:
So far i think you're not suppose to eat chicken or beef. :o |
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Title: Re: 19 year clusterhead now drug free! Post by evilchopper on Sep 2nd, 2004, 9:23pm I felt that if I could improve my digestive system, that maybe I could find additional relief from my cluster pain, I had always felt there was some connection but could never put my finger on it. I did experiment with increasing my fiber intake, and for a month I even took two spoonfuls of activated charcoal each day, since I found information on the web that this method was used to 'clean ones colon'. Upon taking the charcoal, I noticed that I felt like my blood pumping through my veins and arteries felt cooler(I know it sounds crazy but this is the best way to describe it, it was only a sensation, but an enlightening one) usually I felt hot, always sweating, like my blood was red hot as it was pumping through my body, but my body temperature was always normal. After the month, my clusters returned again, as did my hemmoroids, but this reinforced my idea that somehow my colon was somehow involved with my clusters. The significance of the charcoal will also be revealed soon as well. I do not suggest that you go buy charcoal, this will not cure your headaches, it just helped me link together some of the major players in this game. Remember I am not a doctor, I am not selling anything for anybody, I have not even told my story to my last doctor, since he laughed when I once asked his opinion about what finally turned out to be the primary culprit! This is all about education, and sharing! This is only the beginning of my quest, remember, I have been on it for 19 years, please be patient, there is no miracle cure, and I will be as honest and truthfull as I can in telling my Whole Story(even though it will get humiliating for me.) -more soon -Chopper |
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Title: Re: 19 year clusterhead now drug free! Post by evilchopper on Sep 2nd, 2004, 9:35pm It seems you are all speculating too soon. Nothing is wrong with eating chicken or beef. Don't draw any conclusions till you hear of my whole ordeal. That was the very reason why I must present my whole story, so you wouldn't just try and grab a miracle cure out of it. In fact if you aren't going to read the whole thing carefully, then don't read it at all! I've got nothing to lose. I'm humiliating myself so you may learn what I did, and maybe you can see if anything applies to your situation. There is nothing to buy, nothing ridiculous you have to do. But if you draw conclusions prematurely, you will certainly proceed in the wrong direction, because like I said earlier, I learned from my mistakes. I feel excluding chicken or beef would be a mistake! I eat both chicken and beef. I can remember leaving my doctors offices with new prescriptions in hand, only to find the effectiveness wore off within a few weeks. I just wanted a cure, and fast. Well there is no cure, but you can take many steps to reduce the factors that increase the frequency and severity of these episodes. I'm trying to relate to you which things I have found make a difference. -keep reading, I've got 15 more years of suffering to share with you- no gimmicks, really. -more soon -Chopper |
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Title: Re: 19 year clusterhead now drug free! Post by evilchopper on Sep 2nd, 2004, 9:52pm OK here's the humiliating part: In an effort to cure my hemmorroids I bought some prep h suppositories. Within minutes of inserting the first one, I felt an extremely strong bowel movement, but having just had one prior to the suppository I resisted. Soon I began uncontrollably vomiting and had uncontrollable bowel movements which actually pushed part of my colon/rectum outside of my sphincter. This continued for several hours, and upon consulting my mother who is a RN, we concluded that I had more than hemorroids, perhaps a spastic bowel. Ok, now my colon is spasming as well as the blood vessels in my head. This was another piece of the puzzle and I started researching spastic bowel, IBS, Colo-rectal cancer, etc. I stepped up my diet of fiber by eating oat meal everymorning, I cut down on sugar, caffeine, and other things that could be problematic to intestines and such. This alone did not do much to alleviate anything, but I kept searching for anything that might provide a glimpse into what was going on. I felt it couldn't be cancer, as my family has no history, and I've had this condition untreated for at least 15-16 years.(mainly manifested as occasional bleeding hemmoroids, but often diahrea and vomiting as well) My digestive problems began when I was much younger, about 10-12years old, I assumed it was from the antibiotics I was taking, and it kinda was, but not in the way I thought. It's not near over yet, the best is yet to come, really, no gimmicks, I promise. -more soon -Chopper p.s. I would have put this all in one post if I could, but the BB doesn't accept it if it is too long, and since I'm just typing this freehand off the top of my head, it is best that I split it up. If it is too long when you I try to submit or preview it, the BB erases it, another thing I found out the hard way. |
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Title: Re: 19 year clusterhead now drug free! Post by don on Sep 2nd, 2004, 9:54pm At the age of 2 when I................zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz |
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Title: Re: 19 year clusterhead now drug free! Post by E-Double on Sep 2nd, 2004, 10:09pm on 09/02/04 at 18:24:15, evilchopper wrote:
Here take this one...http://smileys.smileycentral.com/cat/15/15_4_127.gif Dude, It's very exciting to have found a place where people can feel your pain. Though all of us obviously feel you with the CH I don't know how many of us can empathize with having our entire lower intestines hanging out our ass and having it be cured by no longer eating meats which happened to also relieve you of your CH. I am extremely patient as a man and have to be for my profession but please man.... Glad you feel well but get to it. Sorry man I'm just a little lost by what you are trying to convey.... Still supportive though ;) e |
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Title: Re: 19 year clusterhead now drug free! Post by evilchopper on Sep 2nd, 2004, 10:19pm Seems you guys know everything already, I guess I can't help here, sorry to waste your time. I would've died for someone would have shared with me why my headaches were worse than normal. But no one did, so I suffered for 19 years till I figured it out for myself. And now I get mocked for it? I thought this forum was for sharing information so I came here to tell you how I helped myself, but apparently it is not, so I must take some time to deliberate and rethink sharing anything here. This was not a sales pitch, I don't have anything to sell, I did everything without spending a penny. And all you can do is criticize me, and be suspicious of me. I'll be back to tell you more of how I found a systemic infection that even doctors couldn't find. I found out what caused it, how to cure it, and why it happens, and all I get is smart comments. Well enjoy your headaches tonight, you all seem to be very happy with them is the message I'm getting loud and clear, as for me, I'll sleep peacefully and not be awakened in the middle of the night with a stabbing pain to my eye socket ever again. I'll be back tomorrow to post more unless there's a bunch of smart aleck remarks. I'm not selling anything, get it, there is no catch, I'm just a regular guy, and I'm being pretty darn generous. I've done things like putting zostrix up my nostril(yeah, capsaicin, it burns like heck), chinese accupuncture, chiropractors, you name it. I've spent over $22,000 on doctors, blood tests, exams, scans, drugs. Addicted to stadol, overdosed on narcotics, anything in the pursuit of relief. I'm seriously offended by your smart aleck comments. If you don't believe me, then don't read, but don't spoil it for someone who may be helped. If you want to criticize then wait till I'm done and present your conflicting information in the form of a rebuttal, like an adult. -Chopper |
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Title: Re: 19 year clusterhead now drug free! Post by Jonny on Sep 2nd, 2004, 10:27pm on 09/02/04 at 22:19:10, evilchopper wrote:
Hey Jackass, If you think a lot of us have not tried these things you are way mistaken. How about putting your posts on tape and mailing them out? .....................................jonny |
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Title: Re: 19 year clusterhead now drug free! Post by E-Double on Sep 2nd, 2004, 10:31pm [smiley=huh.gif] |
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Title: Re: 19 year clusterhead now drug free! Post by don on Sep 2nd, 2004, 10:44pm Quote:
I'm not sure I have that many birthdays left. |
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Title: Re: 19 year clusterhead now drug free! Post by evilchopper on Sep 2nd, 2004, 11:06pm Yeah, I guess you do know it all and have tried everything, so why are you reading if you are so pompous and knowledgable? Because you still have cluster headaches, and I don't. I guess that's why I'm up here preaching and you are not. If you had anything worthwhile to offer you surely haven't shown it yet. I do have something worthwhile. I have taken the initiative to help myself while you sit here and sulk in misery, forgive me for sharing my story. I only mentioned some of the things I did to show that I have been where you're at, angered and confused and humiliated, not to show I'm a badass or something. I hated chopping up imitrex pills into a powder I could ingest nasally, just so they would last a few days longer than taken orally. Some thought I had resorted to illegal drugs. I hated losing my job my fiancee, and my life to this monster. I hated the fact that when I originally was diagnosed there were no effective drugs for the treatment of cluster. I went through years of full intensity cluster pain with no treatment but hot water or ice or banging your head against the wall. I hated burning my face on a hot iron that somewhat releived the pain when applied to the surface of my face. I hated blacking out from pressing on my cartoid so long I lost consciousness. I had no indication of spastic bowel until years into my journey, it was not the cause of my clusters, but what caused the spastic bowel is highly implicated in my cluster headaches. Just keep on treating the symptoms like I did and eventually the true cause will take out other organs like it did in my case. For years I had no clue, much like yourself, but I wasn't pompous about it. It was killing my liver, lungs, brain and other important organs, according to one doctor, I supposedly had diabetes(which I didn't) and for years I was clueless, much like yourself, but I didn't just cry about it on some forum like you do. Maybe you should change the name of this forum to "Poor poor pitiful me" because that's the impression I'm getting. I apologize to anyone who may have taken interest in my story, but I am just a regular guy who was excited to share what I found because you could adjust your habits quite easily and at no cost. Nothing to buy, I don't want your money, but you have my pity. At least I can say I tried, I was beaten down, but I tried. I was able to help a couple of my friends locally, and now we all lead mostly normal lives, so I thought it was safe to share with you. I did not want money, or I would have written a book. (or tape) I have no desire to profit, and now I have very little desire left to help you. When studying physics it was easy for me to understand relativity, or quantum physics, or atomic physics, or nuclear physics, or optics, but I fail to understand your attitudes, in fact I'm baffled and confused. Now I see why there is very little information available on cluster headaches, nobody wants to waste their time helping someone who is hostile to them. You chase everyone off who even tries! Well I've heard your message, it was not wasted on me. I'll save my story for someone who really is interested in helping themselves. Enjoy your pain in your bitter selfishness. -Chopper |
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Title: Re: 19 year clusterhead now drug free! Post by Kevin_M on Sep 2nd, 2004, 11:07pm Another one who has not only an answer but also the has the power to refuse service to all those with no shirt, shoes, or ability to nod politely. I better step outside so I don't ruin it for everybody. Besides, I thought I saw a fire engine go by. I'm gettin' my bike. Kevin M |
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Title: Re: 19 year clusterhead now drug free! Post by JDH on Sep 2nd, 2004, 11:27pm Can't wait till the hurricane is over and Floridian sees this ;;D Jim |
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Title: Re: 19 year clusterhead now drug free! Post by eyes_afire on Sep 2nd, 2004, 11:36pm [smiley=huh.gif] ::) ::) [smiley=huh.gif] ::) ::) |
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Title: Re: 19 year clusterhead now drug free! Post by E-Double on Sep 2nd, 2004, 11:36pm Alright Chopper here it goes.... Fom a scientist and an educators perspective when one is trying to convey any message you must get to the point as clearly and concisely as possible. Especially when trying to convey a message that can potentiallybe "helpful" and replicable. It is beyond fantastic that you have found relief but one thing that you need to know and something I learned very quickly is that when we are in cycle ya kinda need to make things salient. Get to the point This is not being rude just a suggestion. It's just been a little difficult to follow. Good luck dude Eric |
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Title: Re: 19 year clusterhead now drug free! Post by Lizzie2 on Sep 2nd, 2004, 11:42pm on 09/02/04 at 23:06:23, evilchopper wrote:
You couldn't be more wrong. In fact, I don't even think you could BEGIN to realize how wrong what you wrote is. Some people on this forum have gone years without any relief or diagnosis before finding this site or a good doctor. Everyone is very supportive of each other. This is not a "poor me" website. This is a website of strength, support, ideas, suffering, pain, love. To attack it in this way shows a real lack of character on your part. You didn't even say in all those long posts that you wrote what did end your clusters for you. It is a real shame that you feel the need to attack everyone here in this manner. Over the past few years (even before I had clusters and just had the chronic daily headache), I tried more meds than I could count on both hands and both feet and then some. I've had 7 hospital stays, most of which have been over 2 weeks in length. I've been to many doctors. Explored many many non-pharmaceutical therapies. No stone left unturned. And what do I have right now? More compassion than ever for those going through similar situations. So much that when I read what other people have gone through, it breaks my heart. And I also have the determination to keep on fighting. People from THIS website and THIS family have given me that strength. So YOU have no idea what you are talking about. The things you wrote are absolutely unfounded and extremely insulting. You say that you are insulted and offended by the comments made here? Well YOU are the one who is insulting and offending by the comments you have made. If you feel so much hatred about this site...then there are other places you can deposit your wealth of information because with the attitude you're showing...it's not going to do you much good here. Good luck and glad you don't have clusters anymore. Liz |
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Title: Re: 19 year clusterhead now drug free! Post by farmboy on Sep 2nd, 2004, 11:52pm Holly cow i will be an old man before i find out what the hell is the trick he figured out................. As i guy i went to college with used to say all of the time. HEY BOTTOM LINE THIS STORY WILL YA. And yes i can't wait to see floridians answer to this hurricane of a story. |
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Title: Re: 19 year clusterhead now drug free! Post by BlueMeanie on Sep 3rd, 2004, 12:03am If you used to have Clusters, than you obviously know how much of an effect it has on people who still have them. I cannot believe for a second that you wouldn't just come right out and tell us the CURE that stopped your Clusters. Why keep talking and rambling on about your hemmoroids and problems you had when you where 2 years old and just tell us what it is that CURED your Clusters in the short form instead of a frickin' book. |
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Title: Re: 19 year clusterhead now drug free! Post by Kevin_M on Sep 3rd, 2004, 12:24am Damn, say nothing, throw tantrum. MORE!! MORE!! [smiley=crackup.gif] Kevin M |
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Title: Re: 19 year clusterhead now drug free! Post by Tom K on Sep 3rd, 2004, 1:21am Ok, chopper, it's 12:20AM, I'm trying to get through a CH, swam through all the crap you wrote and no payoff??!!! Give me the Cliff notes, give me a point, give me something...If you are a Cluster Head you know that if someone drew out a cure for you this long and didn't get to the frickin point, you would have gone ape by now! |
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Title: Re: 19 year clusterhead now drug free! Post by Pinkfloyd on Sep 3rd, 2004, 1:30am I can understand your decision to present your supporting documention before the "cure" so people wouldn't read a couple lines and dismiss the theory. But as someone that did suffer for years, you must admit that if you picked up a book at Barnes and Noble that was 500 pages and page one stated the cure was on the last page, how many pages would you sit through before flipping to the end? Everyone here has pretty much suffered as long or longer, hence the desire to flip to the end. Then, if it says, "eat 1 pound of unsalted peanuts each day" they could decide whether or not they wanted to read the supporting documentation. If it said eat 3mg of Melatonin each night, they could comment accordingly. Most of the comments were nothing other than a nudge that suggested they were interested and listening. That in itself is pretty impressive since most of those commenting have already spent thousands of hours studying this ailment. Offer them a punchline at the end and they'd much rather get it up front so they can decide if it's worth investing valuable research time. You know all too well of the hours you probably wasted on bad theories. If you so choose to allow an ego that you perceive to have been bruised by but a few, to forestall a message that you believe can ease the suffering of millions, then you must also accept the fact that revenge has mastery over your compassion. I'll leave this thread with a few comments from people smarter than me that may help. "The only way to compel men to speak good of us is to do it." Voltaire "It is not permitted to the most equitable of men to be a judge in his own cause." Pascal "Nothing so obstinately stands in the way of all sorts of progress as pride of opinion; while nothing is so foolish and baseless." J. G. Holland I could not tread these perilous paths in safety, if I did not keep a saving sense of humor." Lord Nelson peace~ PF |
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Title: Re: 19 year clusterhead now drug free! Post by nancyc on Sep 3rd, 2004, 2:15am Aw, come on now...I am sitting here after dealing with the beast tonite...tell the rest of the story...Yeah, I keep grasping for straws....but I wanna know what happened to stop his chs....I've tried everything else. :)nancyc |
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Title: Re: 19 year clusterhead now drug free! Post by pubgirl on Sep 3rd, 2004, 2:15am on 09/02/04 at 20:31:51, evilchopper wrote:
12 hour cluster attacks?? You lost me at that point. Wendy |
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Title: Re: 19 year clusterhead now drug free! Post by Superpain on Sep 3rd, 2004, 4:57am Wow... ::) I have a feeeling this is going to end up as a diet cure story. |
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Title: Re: 19 year clusterhead now drug free! Post by clarence on Sep 3rd, 2004, 6:33am Chopper...Nanook...DDirlam How many names does this guy have? And a 12 hour cluster? I think all this guy wants is for all of us to get upset. If he had clusters, or helpful advice, he would have given it. Casey |
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Title: Re: 19 year clusterhead now drug free! Post by unsolved1 on Sep 3rd, 2004, 6:42am Glad your pain free. ;) BUT... It's time for a reality check: ::) If it's clusters that you have ... they'll be back. (diet or no diet). :-/ And damm this was a LONG post. That's the first book i've read in a while. LOL unsolved |
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Title: Re: 19 year clusterhead now drug free! Post by farmboy on Sep 3rd, 2004, 8:37am clarence my thoughts also, |
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Title: Re: 19 year clusterhead now drug free! Post by evilchopper on Sep 3rd, 2004, 11:18am "if you don't agree, and all you can do is launch unfounded criticism then get the hell out of here and don't show how small you are for all of us to see. I have never met a bigger bunch of whiner who love to wallow in their self pity, I bet all your repective families love your company, especially that lovable wimp from florida who is not here to defend you pussies. And to the loser who called me a jackass, you know what you can go do to yourself you pathetic excuse for human being. Ok I understand your need for info, but sometimes I'm not the best verbal communicator so I just speak from the heart and tell the truth. I hope you can figure this out, I cut it down as short as I could, sorry, I wish I could get more specific but I've wasted too much of my time here already, life is short and I really don't want to waste it on a forum of whiners. I do believe that cluster headaches are caused by a brain defect either from a birth defect or trauma. I know there's not a lot I can do about that, but here are the other factors I have played around with that seem to influence their frequency and intensity. alkalosis (unbalanced leukotriene chemistry) compromises immune system, vascular system, pulmonary system and nervous system, and is suspect as a possible risk factor for cancer. When your body's energy production is low, and your anti oxidant and acid buffers are exhausted, spasm and hyperalgesia rage out of control alkalosis may be aggravated by other conditions: virus, infection, imbalance of flora due to diet or antibiotics, candida albicans, e-coli or salmonella overgrowth, leaky gut syndrome, irritable bowel syndrome, etc. every case is different-figure it out yourself since your all so smart The important stuff is about to come- jerks -Chop |
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Title: Re: 19 year clusterhead now drug free! Post by evilchopper on Sep 3rd, 2004, 11:20am alkalosis is a multifaceted catch phrase having many causes and even more effects, I believe it triggers the migraine mechanism and influences the cluster mechanism-here's how: alkalosis is two fold either too acidic or too basic, but there are also varying degrees of ph, and so many different components of possible cause that every case is completely different and there is no single 'miracle cure' irritability and neuro muscular hyperexciteability are common with alkalosis alkalosis inhibits nutrient absorption and inhibits saline flow and oxygen exchange leukotrienes create spasm and hyperalgesia (ultra sensitivity of the inflammatory immune flare) bioflavinoids(leukotriene inhibitors)like garlic block the lipoxygenase enzyme used to create leukotrienes from structural fat molecules taken from our own membranes. (Yes, apparently you can get a cluster headache just by burning your own fat, under the right circumstances of course!) avoid flavinoids(like chocolate, oranges, tangerines) rich in phenols overload and inhibit a detoxification enzyme phenosulfotransferase (PST) reduce acidifying intake of: smoking, soda pop, coffee, alcohol, high animal protein meals, grains like wheat, narcotics and amphetamines to combat oxidative leukotriene damage increase omega III, vit E, vit C and magnesium in daily foods Does this make sense to you without the overview and explanation, don't blink you might miss your miracle cure- Important stuff to come -Chop |
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Title: Re: 19 year clusterhead now drug free! Post by evilchopper on Sep 3rd, 2004, 11:21am help vasoconstriction pain with proanthocyanidins stop spasms with magnesium (-sulfate, -taurate, or -potassium aspartate) avoid if possible: tyramine-rich aged meats and cheeses, citrus, red wine, yogurt, milk beans, MSG(MSG is hydrolized vegetable protein), Aspartame(nutrasweet), chocolate, legumes, and especially peanuts -all can cause acidic blood (alkalosis) avoid aspirin or nsaids since the block cyclo-oxygenase, and lipoxygenase and inhibit prostacyclin(needed to combat spasm). migraine: increase niacin, riboflavin, and B6 in diet serotonin (5-hydroxytryptamine) released by platelet excitation Proteolytic enzymes make platelets more slippery (less sticky) nitric oxide acetylcholine promotes eccentric contraction of vessel muscles(elongating the fibril) 3 effective diets I used, figure it out for yourself smart alecks: 1 candida control diet 2 caveman diet 3 rare foods diet One weird benefit of alkalosis is that mosquitos never seemed interested in me, now they are so I just carry repellant. Are you confused now? dummies -more to come -Chop |
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Title: Re: 19 year clusterhead now drug free! Post by evilchopper on Sep 3rd, 2004, 11:22am I reduced my clusters using the previous info, but I was still on lithium and elavil, and my other symptoms had not changed much. I found I still had an underlying infection which added to the whole alkalosis problem as well. I had a systemic candida albicans infestation, when candida (yeast) is unchecked by natural flora it grows out of control into a sharp fungus that burrows into the intestinal and colon wall, weakens the wall(protrusion), punctures the wall(leaky gut), and enters the surrounding blood vessels, allowing all stomach contents including varying amounts of e-coli, and salmonella and candida directly into blood stream. This triggers explosive immune responses(spastic colon) and exhausts acidic and anti oxidant buffers(leukotriene chemistry unbalance) in the vasular and pulmonary systems. But most never suspect it, and it seems that few doctors can actually treat this condition reliably even if they do detect it. I understand repopulating the natural flora and preventing re-infestation is darn near impossible. Symptoms can be as light as just gas and heartburn or as devastating as a distended colon, IBS, and possibly cancer. Anyone who has had antibiotics or steroids as a kid, or a high sugar diet, or a high alcohol diet is at risk. Candida albicans(the out of control systemic fungal form) is implicated in IBS, spastic colon, alkalosis. Once in the bloodstream, other organs can get infected. Candida may die off but leaves spores which just come back to life later. Candida tests can read negative even though the spores survive. Often migraines turn out to be herxheimer reactions (candida die off) which releases alcohol, fermaldahyde, and 79 other toxins into bloodstream. Imagine a small brewery in your stomach, everytime you eat bread, it ferments into alcohol(the poisonous kind) and triggers a cluster headache! Well unfortunately it also thrives on sugar(in everything), and mold(cheese, ice cream, malts, some dairy), and anything else that can be fermented. The scary part is that there is no reliable test for candida, and often no telltale symptoms at all, but it was suspect in my heartburn, bleeding rectum, spastic colon IBS, yellow nails, fungal teeth, fungal mouth, lactose intolerance, heart palpitations(it was fungal infection and not mitral valve prolapse), brain fog(loss of concentration and memory), etc. all of which diminished after the candida was treated properly. After repopulation I could withstand a fairly normal diet, so I then began working on my alkalosis and soon my clusters diminished as well. I then weaned myself off of lithium and the other anti depressants as well. I still get some cluster pain now and then, kind of like the precursor of a cluster but no real pain anymore. If I take a sip of alcohol, Boom, instant cluster. Yeah it does suck to do that on purpose, but it helped me to understand the limits of what I could achieve on my own if I looked beyond websites like this for my information. I had to forego trying to including a lot of stuff due to all the hassle here, and I'll probably never come back to this pity party due to all the negativity and immaturity demonstrated by it's members. Maybe you all should grow up first. OK now continue wallowing in you self made self pity so everyone will feel sorry for you. You are all a bunch of losers! -Chopper |
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Title: Re: 19 year clusterhead now drug free! Post by Jonny on Sep 3rd, 2004, 11:25am BIG YAWN.....LMMFAO ::) ..............................jonny |
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Title: Re: 19 year clusterhead now drug free! Post by Redd715 on Sep 3rd, 2004, 11:30am Trying to restrain myself from posting that head up the backside pic..... Hey are we sure this isn't a politician? He talked and talked and still said jack CHit! |
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Title: Re: 19 year clusterhead now drug free! Post by evilchopper on Sep 3rd, 2004, 11:32am Again I don't have a cure for cluster but I used everything I mentioned to reduce frequency and severity. Put the pieces together yourself, it only took me 19 years and obviously I'm the only one here that does more than sit on their fat arse and whine in this forum. My cluster haven't been back, and they won't be back. Shows how much you know, loser. I used to be close minded and thought I knew everything like you apparently do. I am still "cluster positive" I still get some symptoms, but nothing that even makes be grab toward my cartoid. I can never cure cluster positive, since the doctors say it's a brain defect, I never said I could and those of you that say "get to the point" "what did you do to stop the headaches" will never see the forest for the trees. These are steps I tood and changes that I made, I'm not saying they will cure you. If something helps you then great. I did not buy anything, I am not selling anything. But this story is true and it's more than any of you have ever done, and it is easy to tell why, jerks. You deserve every attack you get! -One pissed off Chopper! |
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Title: Re: 19 year clusterhead now drug free! Post by thomas on Sep 3rd, 2004, 11:34am on 09/03/04 at 11:32:04, evilchopper wrote:
Wrong, try again. |
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Title: Re: 19 year clusterhead now drug free! Post by Jonny on Sep 3rd, 2004, 11:35am Hey Redd, Pass me the popcorn and tell me when the movie starts.....LOL ;;D ...........................Homey |
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Title: Re: 19 year clusterhead now drug free! Post by Redd715 on Sep 3rd, 2004, 11:42am Quote:
Hmmmm and he has the omnipotence and clairvoyance of a Shaman to know what any of us has tried? Jonny, Honey the movie started yesterday, and it's certainly no Cain Film Festival. I say we pack up the lawnchairs, popcorn, cooler of gatoraid and our Excedrin and go home. |
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Title: Re: 19 year clusterhead now drug free! Post by evilchopper on Sep 3rd, 2004, 11:44am Actually I was in a good mood until I started getting mocked by your posts, that soured me totally, and eventually pissed me off. -Chop p.s. OK it's safe to continue your small minded debates and attacks and lashing out if it makes you feel better! This site is a sham! |
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Title: Re: 19 year clusterhead now drug free! Post by thomas on Sep 3rd, 2004, 12:20pm Another case of someone not reading the sign on the front door. Well, dude I hope your pf time lasts. |
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Title: Re: 19 year clusterhead now drug free! Post by Tom K on Sep 3rd, 2004, 12:24pm on 09/03/04 at 11:44:46, evilchopper wrote:
But I still posted 4 extra long times, with no end in sight... |
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Title: Re: 19 year clusterhead now drug free! Post by Lizzie2 on Sep 3rd, 2004, 1:06pm And FYI.... Alkalosis is NOT acidic blood. Alkalosis means the pH of blood is greater than 7.45. "Acidic blood" is when the pH is less than 7.35 and is referred to as ACIDOSIS. That's all the biochemistry I will pick apart...for now :P |
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Title: Re: 19 year clusterhead now drug free! Post by ExplodingEyeBall on Sep 3rd, 2004, 1:08pm Hey Chopper, Why do you come here and insult us and then call us a bunch of morons/babies/etc.??? BTW:is this you? Contact Information Telephone (912) 341-8898 FAX (912) 341-8566 Postal address Memetics Consulting, 414 Whitaker Street, Savannah, GA 31401 Electronic mail General Information: info@memeticsconsulting.com Webmaster: ddirlam@memeticsconsulting.com Send mail to ddirlam@memeticsconsulting.com with questions or comments about this web site. Copyright © 2003 Memetics Consulting Last modified: 04/10/04 |
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Title: Re: 19 year clusterhead now drug free! Post by IndianaJohn on Sep 3rd, 2004, 1:29pm The fucking dumbass has finally left the message boards! [smiley=bash.gif] |
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Title: Re: 19 year clusterhead now drug free! Post by ExplodingEyeBall on Sep 3rd, 2004, 1:42pm He'll be back with a new name and the same Bul$hit message. |
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Title: Re: 19 year clusterhead now drug free! Post by farmboy on Sep 3rd, 2004, 2:17pm explodingeye and Jonny Why did i get the feeling like that was another put up by some shit head. Long line of bullshit to keep us reading and then just more insults of a greater degree to induce a response from us. |
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Title: Re: 19 year clusterhead now drug free! Post by ExplodingEyeBall on Sep 3rd, 2004, 2:33pm Trolls like to take up as much space as possible on message boards and see how much turmoil they can cause. The more he gets flamed, the more he enjoys it. He should be pretty happy with a 3 page thread. Next time he changes his name and posts the same crap, we should all just completely ignore the bastard. THIS would piss him off more than flaming him. |
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Title: Re: 19 year clusterhead now drug free! Post by IndianaJohn on Sep 3rd, 2004, 2:34pm on 09/03/04 at 14:17:13, farmboy wrote:
Think you're on to something there!!! |
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Title: Re: 19 year clusterhead now drug free! Post by farmboy on Sep 3rd, 2004, 2:36pm Yes i think we need to post a code word on crap like this so every one will be able to ignore this crap. |
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Title: Re: 19 year clusterhead now drug free! Post by IndianaJohn on Sep 3rd, 2004, 3:01pm on 09/03/04 at 14:36:46, farmboy wrote:
Excellent Idea! We could use something like: IDAM (Ignore the DumbAss Meegrainer)...lol |
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Title: Re: 19 year clusterhead now drug free! Post by Tom K on Sep 3rd, 2004, 3:07pm What I think we need is a way to lock the thread or delete it so he can't waste anymore bandwidth. |
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Title: Re: 19 year clusterhead now drug free! Post by Jonny on Sep 3rd, 2004, 3:45pm on 09/03/04 at 15:07:16, Tom K wrote:
Thats easy.....LOL If it were not so entertaining it would have been......LMMFAO ;;D .................................jonny |
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Title: Re: 19 year clusterhead now drug free! Post by farmboy on Sep 3rd, 2004, 4:19pm Damn Jonny you always have a different twist to things, good point ...............entertainment is always needed when you have this affliction. ok so we have entertainment value, aggreveration value, mental excersise value, and typing lesson. all rolled into one. we just might really need persons of this pervasion to keep us up on our game . maybe we should say we are sorry and get him back so we can keep in top form??? any ideas........................... |
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Title: Re: 19 year clusterhead now drug free! Post by Pinkfloyd on Sep 3rd, 2004, 4:57pm on 09/03/04 at 16:19:32, farmboy wrote:
Yeah, I've heard it said he's twisted..;-) Next time just warn me so I don't waste all my best quotes... Maybe Bush can help set up an Advanced Warning System for incoming...?? Happy Labor Day weekend all you laborers PF |
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Title: Re: 19 year clusterhead now drug free! Post by BlueMeanie on Sep 3rd, 2004, 5:04pm on 09/03/04 at 16:57:40, Pinkfloyd wrote:
lol PinkFloyd. You did have some nice quotes I must say. Happy Labor Day to you too. |
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Title: Re: 19 year clusterhead now drug free! Post by don on Sep 3rd, 2004, 5:46pm Quote:
Thats a goog idea there Chop Chop. Piss Off! |
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Title: Re: 19 year clusterhead now drug free! Post by Kevin_M on Sep 3rd, 2004, 5:52pm on 09/03/04 at 11:22:47, evilchopper wrote:
Congratulations on ridding yourself of the candida and then having your recent episode run it's course. All the rest of the words was just something else you need to deal with too. Quote:
I understand your efforts to gain some sort of confidence here with this telling of your ailments, but can you tell me how, after going chronic, what it is to have gotten continually "worse" than chronic, and then with every therapy, "worse than ever"? Let's see, got chronic, then continually worse than chronic, then worse than ever. Ok, now we have a new kind of cluster. There is episodic, then chronic, then worse than chronic, then worse than ever. Wow, we need to revise the Kip scale up to about 25 I guess. Kevin M |
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Title: Re: 19 year clusterhead now drug free! Post by don on Sep 3rd, 2004, 5:58pm Its guys like this that put complete clarity on why the medical community has to have some type of definitive standard for "Chronic" to work from. |
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Title: Re: 19 year clusterhead now drug free! Post by unsolved1 on Sep 3rd, 2004, 7:06pm |
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Title: Re: 19 year clusterhead now drug free! Post by FZfan on Sep 3rd, 2004, 7:14pm LOL unsolved! And Jesus will think you're a jerk, and it would be true... from Jesus Thinks You're a Jerk by FZ Now I'd like to whine about my clusters and the lack of support from this forum... Except that this forum has done more to help my clusters than anything, ever. |
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Title: Re: 19 year clusterhead now drug free! Post by farmboy on Sep 3rd, 2004, 7:20pm unsolved that one just kills me i am laughing so hard right now. i am going to use that one. |
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Title: Re: 19 year clusterhead now drug free! Post by vig on Sep 3rd, 2004, 9:47pm what the !@#$%^&* was that all about? |
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Title: Re: 19 year clusterhead now drug free! Post by floridian on Sep 4th, 2004, 7:23pm on 09/02/04 at 23:27:51, JDH wrote:
Got the plywood cut and installed over all my windows yesterday - most of my muscles are sore, and I don't think we'll get much as far as the hurricane goes. But thats good, I guess. Next storm will be easy - with Tapcon mounts, it only takes a few minutes to put up a storm panel or take one down. I'll reserve comment on this thread until I've :) (edited next day - understrike) |
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Title: Re: 19 year clusterhead now drug free! Post by nani on Sep 4th, 2004, 8:04pm Unsolved... I hate the "c" word. :-/ |
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Title: Re: 19 year clusterhead now drug free! Post by ex_pat_asia on Sep 5th, 2004, 12:06am Jeeez, I should have read all the posts before I wrote what I originally wrote here. Guys, I confess, this guy had me reading and writing notes to go check on...the whole bloody smash. Has he been here before? The response posts, by the way, had me laughing out loud. I agree with the notion that letting a poster like that go on is entertainment. Bandwidth is worth it if you get a laugh out of it. |
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Title: Re: 19 year clusterhead now drug free! Post by floridian on Sep 5th, 2004, 10:01am A few points. Right now, there is a thread on "colds and clusters". Several regulars here think the flu or a cold make clusters worse. This fits with what is known about immune activation and clusters - in fighting certain infections, the body increases inflammatory chemicals like nitric oxide, interleukins, cgrp, etc. Could a yeast infection do the same? Possibly. There is a big debate on how many people have 'silent' Candida infections, and what they can cause/aggravate. I'm not sure on this. Bioflavinoids and polyphenols - the guy who started this thread thinks they are bad for clusters. I think they may reduce clusters, although different people respond differently. Green tea may reduce IL-1, TNF, nitric oxide and other chemicals. Other bioflavinoids protect against glutamate toxicity (another problem in CH). Leukotrienes? Probably a part of the puzzle. Check out interleukins - they are also involved, maybe more so. Lizzie is right about the acidosis/alkalosis issue. There may be something off with blood pH, but I think it is more likely a low buffer reserve. If your alkalis are high, your blood is not acidic. One type of nerve activity that is associated with CH (cgrp/nitric oxide/nmda/vanilloid1 overactivtiy) is sensitive to heat and acidity, probably more so in our condition. Phosphates in meat? Could be, although I personally think nitrites and sodium might be more of a problem than phosphate. Mosquitos bothering you? Strange, but the same has happened to me in the past two years, when I have been headache free. Been in the same house for 7 years, and while I used to be invisible to mosquitos, I am now a prime target. Maybe my skin chemistry changed, or maybe its those damned Tiger Mosquitos that hitch-hiked in from Southeast Asia. Dunno. Proanthocyanidins? You may be on to something there. Some of them block CGRP, which is a main focus for many pharmaceutical companies now. See the Sangre de Grado abstract in the continuation of this post - there are probably similar compounds in some foods and other herbs. Black cherry juice comes to mind. Diet and clusters has not been studied in any systematic way. Discussing diet here provokes more controversy than advocating genocide. There are bunch of loose cannons here senor Evil Chopper, or whatever your current handle is. Lots of egos colliding. Lots of mistrust, especially of people we don't know. If you want to be effective, pick a name and stick with it. Build some credibility by dealing with everyday issues as well as the grand vision. Quote:
Did I cheese you off? That's funny, I thought I have been more sympathetic and open minded than most. Maybe my memory needs refreshing. Yeah, I whine, they whine, and YOU whine. But I'm not here to defend the group-think. I want to solve a puzzle that causes so much pain. If you are in the same boat, then maybe you do too. But you need to grow a thicker skin, and read Dale Carnegie's "How to win friends and influence people." |
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Title: Re: 19 year clusterhead now drug free! Post by floridian on Sep 5th, 2004, 10:02am Quote:
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Title: Re: 19 year clusterhead now drug free! Post by alleyoop on Sep 7th, 2004, 9:23am I just read this whole thread. One word: AMAZING! .......................................alley :o |
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Title: Re: 19 year clusterhead now drug free! Post by FZfan on Sep 7th, 2004, 1:03pm hmmm, I kept thinking of a different word. It's currently the title of Penn & Teller's show on Showtime. |
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Title: Re: 19 year clusterhead now drug free! Post by alleyoop on Sep 8th, 2004, 12:14am on 09/05/04 at 10:01:54, floridian wrote:
I want a solution to the puzzle too Floridian! Like you, I'm not here to defend the group think. I also agree that the guy was awfully thin skinned. Like I said, I'm not here to defend the group think, but it bothers me when someone is run off that just might have something valuable to say and maybe even, God forbid, something we could learn! One of the most valuable lessons learned in life is that we don't know it all! We all learn it. Sometimes unfortunately, I think we tend to forget this lesson. It's a shame because the outcome is almost always the same. Instead of broadening our horizons, we narrow them. I said that I found this string amazing. I'll tell you why. The guy, whoever he was, tried to articulate his experiences, theories and even feelings to a bunch of total strangers. One can question his motives. Maybe he is just pedantic and likes to hear himself expound on his thoughts. Or just maybe, he was trying to articulate his ideas and experience in hopes of initiating a meaningful dialogue instead of massaging his ego. The fact that he chose to go about it in such a long winded fashion, I suppose he felt, was the only way he could fully convey his message. At least to me that's what he seemed to be saying. He also stated vehemently more than once that he was not here to sell anything. If he was lying about that and there was in fact a hook, I totally missed it. I believe chopper did in fact, start the name calling. Like Floridian said, he needs to grow a thicker skin. But I gotta tell you, I don't know about anyone else but it took me quite a while to get up the nerve to post on these boards and I think I'm about as thick skinned as they come! I know I'm gonna get flamed for this, but so be it- flame away! I got it off my chest and I feel better. You just never know where a contribution to better understanding this disease may come from. I don't like shutting doors before they've had a chance to open. [smiley=twocents.gif] .................................alley |
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Title: Re: 19 year clusterhead now drug free! Post by nani on Sep 8th, 2004, 12:34am I'm with you alley oop. [smiley=twocents.gif] |
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Title: Re: 19 year clusterhead now drug free! Post by E-Double on Sep 8th, 2004, 2:36pm on 09/08/04 at 00:34:44, nani wrote:
Ditto... I think the only thing that I said on this thread was to "try" to be clearer and concise. It was more advice than anyhting else because of the experiences I had in the beginning ;) When we're in cycle many are very quip and can jump down eachother's throat. I certainly have a thick skin but at the same time it is sometimes difficult to read and gather the tone of some people's replies. What I do understand is that many people here have been guinea pigs for too long. This is unfortunate. I've suffered for 9 yrs and only now (since June 9th) have I been receiving meds and for that matter any "appropriate" treatment (hope). The point is I guess those who are quick to react or label someone a troll are probobly doing it to help the majority and not to be jerks (I would hope). I guess if the first thing a newbie reads is diet or catshit and ammonia this will be the first thing attempted... I sniffed ammonia >:( was desperate (Laugh if ya want I HAVE A THICK SKIN! LOL) but it wasn't funny @ the time. Best to all and of course hope all get relief Eric |
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Title: Re: 19 year clusterhead now drug free! Post by off_roader on Sep 8th, 2004, 5:21pm Hello all, I have read through this entire thread and I am also amazed and disappointed. This is only the 2nd time I have posted a comment to this board. I kept reading evilchopper's posts because I have suffered many of the exact ailments starting with and including colon spasms, chronic daily migraines and CH. I am disappointed to see that I have no more information to gain from his posts. Please... before you push back think of the others who are hoping for an answer and help. I am not condoning evil chopper's thin skin I am only agreeing with alleyoop.'s posts and expressing my disappointment. I fear reprisal and I am sure that is not what anyone wants from the message board. Thanks in advance for your understanding of my frustration/disappointment. -OffROADER |
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Title: Re: 19 year clusterhead now drug free! Post by Kevin_M on Sep 8th, 2004, 10:27pm I don't seem to understand this fear of reprisal. Anyone proceeding with fear of failure will always chase success behind the clouds that obscure it. Does anyone think that any new ideas have never been met with any resistance? Just everyone of them. And then have the guts to say he easily understands quantum and atomic physics as well as relativity and not know this! Make me puke. And then when resistance is met, say that he is seriously hurt from all the smart alecks, call us pompous, self pitying, immature, losers, call us hostile, jerks, negative, our criticism unfounded. Then tell us this is the reason he is doing the preaching and we're not, and then say he tried but we shot him down.......when it was only his first time posting! WTF, and for all that we get some words that sound like they are taken from a book "The Wonders of Apple Cider Vinegar and Honey". Sure, I respect the hell out of all that. I don't think anyone who is STILL HERE and has clusters is a loser! Kevin M |
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Title: Re: 19 year clusterhead now drug free! Post by FZfan on Sep 9th, 2004, 8:12am I'm with you Kevin M |
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Title: Re: 19 year clusterhead now drug free! Post by farmboy on Sep 9th, 2004, 9:04am This evilchopper guys biggest problem is that he was way to long winded. A bunch of us had ask hit to get to the point. he never did. So he was discounted as having any information that was usable.and not worth the time. |
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Title: Re: 19 year clusterhead now drug free! Post by ExplodingEyeBall on Sep 9th, 2004, 10:15am Hey Off_roader.... There's no need to be in fear of reprisals here if you are sincere about what you are posting about. When I first came here, I'm sure that I brought up a lot of stuff that has been covered millions of times. The people here read my posts and politely told me where to find the info I need and also warned me that some things could cause a backlash of flaming if I started to come close to one of thos topics. They knew that I was just another person who was suffering and looking for advice. After a while, It is very easy to spot trolls and snake oil salesmen just from the language of their posts. My posts didn't look like that and I survived. If your post doesn't look like an ad for some miracle cure (be careful about using THAT word here), the people here will bend over backwards to help you in any way they can. If you have advice on something that helped you, share it but always remember that what works for you may not work for someone else and that it also may have seemed to work becase you cycle ended. And NEVER use the word "cure". It's unfortunate that you got ahold of a thread like evil choppers since his only intention for posting here in the first place was to stirr up crap. He has posted on this board repeatedly in the past using different names and he will be back again with a new one. Read the other posts and see if you don't find some very good advice here. Pat |
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Title: Re: 19 year clusterhead now drug free! Post by off_roader on Sep 9th, 2004, 1:31pm Thanks for your advice Pat. I am both sincere and unfamiliar and was writing my thoughts from a newbie's perspective. My inexperience with the board made me leary to post when I saw some of the negativism that existed in the thread. I was not aware that evil chopper had posted on this board repeatedly in the past using different names and I am now better educated. Thanks again for the constructive advice. Lisa |
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Title: Re: 19 year clusterhead now drug free! Post by don on Sep 9th, 2004, 1:40pm Heres something to remember off_roader. For every 1 person run outta here for posting bullshit, probably 50 get some assistance with legitimate posts. No need to be leary around here if your on the level. Now fuck off ! (joke, off_roader, joke) 8) |
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Title: Re: 19 year clusterhead now drug free! Post by Linda_Howell on Sep 9th, 2004, 2:29pm I've been gone for 2 weeks and am just now reading all of this. I stopped at page two as I was feeling myself aging and not very gracefully. This is all I have to say: quote by Evilchopper Quote:
No TRUE cluster headache sufferer would EVER utter this sentance. :'( Linda |
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Title: Re: 19 year clusterhead now drug free! Post by Margi on Sep 9th, 2004, 3:40pm Amen, Linda - that made the hair on the back of my neck stand up too. In my six years here I have never - repeat: NEVER - seen one clusterhead say that to another clusterhead. And you and I know there have been some DANDY go 'rounds here, but that wish is taboo, just never done! In fact, just the opposite. If i had a dollar for every clusterhead here offer to take another clusterhead's pain, I wouldn't have to work anymore. Another cluster wannabe. ::) |
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Title: Re: 19 year clusterhead now drug free! Post by plateglass on Sep 9th, 2004, 3:57pm Wow I can't believe I finally got through all that!!! You most definatley got it right Linda :) |
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Title: Re: 19 year clusterhead now drug free! Post by Linda_Howell on Sep 9th, 2004, 5:02pm Ya know. No matter if this person had a legitimate thing going. The fact that he said that .....should be the end of this thread. Hopefully. In mho of course. Linda |
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Title: Re: 19 year clusterhead now drug free! Post by Genoman on Sep 9th, 2004, 5:43pm Well one thing is for sure. If Chopper wanted to antagonize us or get attention he sure must be pleased with his results. This has been a very busy thread with all the bitching. I say we let this thread die. From now on what would it hurt to let someone type away, post after post. Let them ramble. Then as soon as the snake oil, amonia, catshit or whatever comes up then we pounch before they can do any damage. The fact is know matter what you think you know, we will never know if what Chopper was getting at might have helped someone. I'm willing to take that risk if all it requires is a little patience. |
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Title: Re: 19 year clusterhead now drug free! Post by Jonny on Sep 9th, 2004, 6:06pm To answer your question. We dont let anyone spew something that will help us all post after post without getting to the damn point. As you can see....the family is no no mood for that ever!!! To us that is just someone fucking with us and alot of us have been here for years watching it....its bullshit! ...............................jonny |
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Title: Re: 19 year clusterhead now drug free! Post by Linda_Howell on Sep 9th, 2004, 7:35pm RIGHT! Linda |
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Title: Re: 19 year clusterhead now drug free! Post by IndianaJohn on Sep 9th, 2004, 9:07pm on 09/09/04 at 18:06:49, Jonny wrote:
have to agree... |
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Title: Re: 19 year clusterhead now drug free! Post by farmboy on Sep 9th, 2004, 10:27pm Right on.......................... jonny |
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Title: Re: 19 year clusterhead now drug free! Post by clarence on Sep 10th, 2004, 4:32am Is it just me, or did this guy start another thread over on the medication board today? Casey |
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Title: Re: 19 year clusterhead now drug free! Post by ExplodingEyeBall on Sep 10th, 2004, 8:45am on 09/10/04 at 04:32:34, clarence wrote:
It sure looks that way. Same style. Same ranting. Same Part 1, part 2, part 3 keep on going kind of crap. |
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Title: Re: 19 year clusterhead now drug free! Post by farmboy on Sep 10th, 2004, 8:55am One thing for sure it keep me interesed in the boards. Yes i also think this person is at it again. A too full saliva gland ????? i am not a dr but seems fishy to me. |
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Title: Re: 19 year clusterhead now drug free! Post by BobG on Sep 10th, 2004, 9:07am Yep! Must have been a slow night in the dorm. Or a couple boxes of wine too much. modified to say "Wow, page 5, already" |
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Title: 19 year clusterhead seeks forgiveness Post by RightSideCluster on Sep 23rd, 2004, 10:45pm Well I couldn't stay away any longer. I was mildly amused when I saw everyone here was proud to have scared me off. I was more amused when I saw that you had labelled an innocent person and given out their personal information. I regret creating a big stink about this, and I apologize to anyone I offended. My remarks came from my "thin skin" and I should not have unleashed on the forum in such a immature manner. The fact is, this is the only thread I've ever posted or replied to at this website. I have not been here before under a different name. In fact I'm using the same IP I've logged in with before, the only one I have, and your webmaster can verify this for you. I did delete my account here under evilchopper as I began receiving angry emails from your "hit squad" within minutes of my first post on this thread. One of them eventually knocked my computer out with a trojan bomb filled with worms (beagle32, and mydoom32) I am only posting now to defend my inexcuseable actions, and apologize for my inexcuseable behavior previously and provide you with the info I selfishly scrambled before I posted it. I seriously am just a regular guy (whose manic swings have increased a little since I went off all those anti-depressants cold turkey) who plays in a local band here in Chicago. I have nothing to sell, and am not working with or for anyone. I did take the time to clarify my story in a more understandable format so you can see my intentions were originally good. I just lost my patience and focus and temper, and I am sorry. I might regret this but you can view my story here, I attached it to my band's website URL: http://www.evilchopper.com/cluster I don't sell probiotics or diflucan or enemas or illegal mushrooms. I mainly used diet and exercise to help myself. I am now an independant music producer and work out of my own studio on the west side of Chicago. As a producer I've recorded over 30 CD's in the last 3 years, and mastered over 50 CD's in the same time period. As a musician, I have released several CDs, and videos of my own. I've only been a producer for the last 3 years (since life has started to get better) but I've accomplished more in those 3 years than the 20 years before that when clusters were keeping me down. Producing is actually another step down for me, I used to build custom guitars for the stars(see my brag page) but lost that job when things got bad for me. Producing others is all I could do and I only kept that job because I couldn't fire myself. You can look up my personal info on my band's website to verify who I am if you are suspicious of me still, but please don't send me any more trojan bombs, my computer was down for over a week as a result and I've learned my lesson the hard way. My only agenda is that I plan to step up the plans for my own band as I now feel confident enought to take the stage fearlessly. (ironically I'll probably get an attack at the first show, stress seems to do that!) I hope you don't hold this debacle against me for too long, but I don't blame you if you do. I just wanted to clear the air before some of you unfairly and incorrectly ganged up on some more innocent people. I take full responsibility for my actions and words. And I wish all your headaches will come to an end sooner than later. -Chopper If you do want to bash me some more, just email me at evilchopper@juno.com, or come to one of my shows and throw some rotten food at me, you'll feel better(and I'll get to eat) P.S. nothing against floridian, I was just lashing out at the hit squad, in fact, he seems to be one of the most level headed here. Floridian, I am sorry. P.P.S. the only reason I wrote with a part one part two style was that there is a limit to post length, and there is a short timeout as well. I write from a stream of consciousness and lost my post numerous times before I split it up. The similarity to any other posts is probably coincidental and becuase of these bulliten board limitations.) |
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Title: Re: 19 year clusterhead now drug free! Post by BobG on Sep 23rd, 2004, 11:41pm Everyone here was not proud to scare you off. Some welcomed you and tried to understand what you were trying to say and hoped to learn from you. You have to remember that this board has been here for years. There is probably more knowledge of cluster headaches here than anywhere in the world. Part one of that knowledge is....you may have other medical conditions like depression or hemorrhoids but it nothing to do with clusters. Your clusters are caused by a broken hypothalamus gland. Part two of that knowledge is……….there is no cure. There are treatments to help control it but no cure. Apology excepted, for now. |
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Title: Re: 19 year clusterhead now drug free! Post by RightSideCluster on Sep 24th, 2004, 11:05am Thank you for the second chance, I only hope to share and learn. I have conceded that there may be no cure, but doctors don't really know why the hypothalamus is broken, or if it is even broken, all they know is there is extra matter there, they don't know why, and can't state conclusively what you just assume and assert is fact. Doctors don't say there is no cure so catagorically, they tend to say there is no cure yet, or they know of no cure. To definitively state that there is no cure is somewhat misleading, I feel it is more accurate to say they have not found a cure. They don't even know the mechanism responsible with any accuracy, it is mostly speculation based on very limited research, how can the same people who know so little say they know there is no cure. Is it appropriate to say there will never be a cure? They have measured levels of certain neurotransmitters, and we know some are low and some are higher, but don't know if they are the cause or effect. Doctors are only starting to piece this together, and much of what we hold as truth actually holds very little validity. Here is some hypothesis: What if the brain is trying to rewire the bodies clock to overcome the abnormal functions caused by immune depression? It has been shown the brain can rewire itself under certain conditions. If the hypothalamus is broken, something must have broken it, whether a birth defect, physical trauma, or stresses to it by improper balance of neurotansmitters, but doctors don't know why or how it broke. What if it isn't broken but just reacting to poor conditions of the immune, digestive and circulatory systems. I don't deny the hypothalaums is different in chronic clusters, but I feel they may be on the wrong track trying to throw all the blame on the hypothalamus. What if the hypothalamus is just reacting and not causing? I find it interesting that we just all accept this extra gray matter as the cause, when doctors themselves admit they are baffled as to the mechanism. Maybe if they looked at it as a result of the affliction, rather than the cause, they might find that it is indeed curable. Some brain disorders of the past have been minimized by reducing such factors that influence levels of neurotransmitter, and previously incurable diseases, which doctors thought they knew the exact cause have turned out that the suspected cause was just an effect of a deeper problem(multiple sclerosis, autism, alzheimers, several types of cancer are all now thought to be caused by external factors that influence chemicals that control a nerve cell's operation where originally they thought there was a defect either in the DNA, RNA, mitochondria or other intra cellular components, turns out the defect was not the primary cause but only the result, and the defect, and thus the affliction, is now thought to be caused by external factors) and now the research is heading in a more productive direction and some types of the afflictions have very impressive cure rates compared to just 5 years ago. By keeping an open mind, I was able to use this unconventional view and use it to my advantage. It may be just coincidence, but it warrants further investigation. I reduced all the factors that I could find that may have such an effect, and it may be coincidental, but it worked exactly as the research I found said it would. Anyway, I do believe that doctors are smart enough to figure it out give enough time and research. I did not say cure it, only figure it out. They have probably thought about different approaches such as mine, and plan to test their validity, but these things take up the precious little time we have, and I couldn't wait. Thanks for letting me speak my mind again, I appreciate the opportunity and second chance. -Chopper p.s. I don't think candida albicans was the cause of my clusters but I believe leukotrienes hold the key to external effects on the hypothalamus. I believe candida was only an aggravating factor in the whole leukotriene mess. But the whole connection to my colon through leukotriene science is too much to ignore and I feel it warrants further discussion, If I go off my diet tomorrow, in 2-3 days I can create a cluster by eating chocolate and waiting about 20 hours for it to pass through my colon. Once I eliminate, the pain is instantly gone. But is it because chocolate is a candida fuel, or is it because chocolate is a phenol which disables and overloads a detoxification enzyme called phenosulfotransferase, or is it because I have a cluster prone hypothalamus that no one can explain? I will be willing to test anyone's ideas on myself while my colon is still in this intermediate stage (not bad enough to spasm, but bad enough to still permit symptoms). And I don't feel colon is the cause, it is also probably the result of poor leukotriene chemistry which in my case was aggravated by candida. Just some food for thought. |
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Title: Re: 19 year clusterhead now drug free! Post by pokemom on Sep 24th, 2004, 3:37pm Chopper I do admire you for all your information. It takes a lot of time and effort to study the course our bodies are trying to take. I have Multiple Sclerosis and cluster headaches. So I have the beast and the monster. I do a lot of research on MS for my MS watch buddies on the web. I found a good remedy for my HA on cluster headache web site. It’s the red bull. Well I hate that sweet gross taste and looked up the chemical called taurine. That’s what you need anyway. I take that supplement instead of that yuk drink. You should if you haven't already, read about it(taurine). In all the meds I have taken Avonex, copaxone and bataseron preventive drugs for MS (which by the way suppresses you ammiune system) kind of like taking chemo I guess. I may have lost my bodies ability to produce the taurine chemical itself. Plus I stopped eating any red meat and no dairy products because of a slight high cholesterol level. So hmmmmm! And I have taken most all the Cluster headaches med's like you have. You just keep on writing there are some of us out here that do listen to others and it can sometimes help. ;). I mean all we have is one another anyway., is this not why we have this discussion board? :o I am open-minded! Hey, if you don't learn from your mistakes you're bound to repeat them... ::) Poke`mom(slow poke is am cus of MS)but i can type fast ~~~~~~ ;;D |
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Title: Re: 19 year clusterhead now drug free! Post by EvertBoer on Sep 24th, 2004, 5:28pm I'm interested to know why you think you are cured. I have had cluster headaches for 36 years. I am now 55. When I hit 40, I started having longer remission periods between cluster cycles. When I had my first 2 year remission, I also thought I was cured, but they came back. I now appear to have about a 5 year remission period, but I don't think I'm cured. All of a sudden, out of the blue, they're back. Basically, I haven't changed anything for years as far as diet, drugs, what have you. Write again in about 5 years, and let us know if you still think you are cured. |
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Title: Re: 19 year clusterhead now drug free! Post by RightSideCluster on Sep 25th, 2004, 8:38am Hi Pokemom, thanks for the encouragement. MS is something that I found mentioned repeatedly in auto-immune info, but very few actually get any more specific. I am very interested in the connection between auto--immune suppression and MS, since a cousin of mine has MS, and I even felt some of my symptoms toward the end indicated I might be coming down with it(I just thought it was genetic, and that I would get it sooner or later). I felt uncontrollable tremors in the muscles of my arms and legs, similar to how I felt back in college when I drank a lot of caffeine, but without the high heart rate. It's part of what motivated my search. They used to call auto-immune deficiencies 'allergies' and there wasn't a lot of research available, but new stuff seems to be pouring in every day, and we see that auto-immune does indeed include allergies, but also includes other mechanism as well now, like effects from abnormal organ function, effects from infection, etc. During my search for cluster info it seemed that much focus was put on nerve toxins when the dialogue shifted to MS. I found this fascinating since many of the external factors mentioned were indeed similar to the ones at work in cluster. There was some specific information concerning hydrogen sulfide, which is a nerve toxin released by the metabolism of candida, AND also contained in cigarettes. This hydrogen sulfide was thought to have an effect on the 'sheath' membrane that covers nerve cells, effectively causing them to 'quake'. My early suspicion is that additional nerve toxins are at work with MS, and the damage is done to the nervous system in addtion to the digestive and circulatory, but that they get into and accumulate in our bodies the same way as clusters. The latest research seems to provide some support for this. These nerve toxins are everywhere, especially in vinegar, which is in ketchup, mustard, mayo, etc., and table salt which not only has the dreaded sodium(eats up oxidative buffers-immune reaction ability) but also potassium chloride(which is a nerve toxin I used as a youngster to make my own gunpowder to launch model rockets!) I do plan to pursue more info on MS and plan to work with my cousin on letting him know what I found(he seems to be in the dark and has lost a lot of hope, and is in great suffering, if just removing a few known risk factors made even a little difference it would mean the world to me.) Please let me know what you have found or what kind of things your doctors have told you is at work here. -Chopper |
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Title: Re: 19 year clusterhead now drug free! Post by RightSideCluster on Sep 25th, 2004, 8:42am Hi EverBoer, I'm probably not cured, but we'll have to wait and see. Once my clusters went chronic, I never had a remission period, my only break ever was once a couple of years ago for 5 days when I tried a colon detoxifier.(what a coincidence-lol). My headaches were far too frequent to be simple chronic cluster. 2-3 a day sometimes just one big one all day, every day without exception. When the migraines(shadows or rebounds) started, I knew there was some kind of aggravating factors. When I searched these factors out and changed them, my clusters and migraines receded for the first time. Now I am in a transitional stage where my colon is still ulcerated somewhat(inflamed and bleeds much less, only maybe once a week, but that is much better than every time I eliminate, and I was recently spending hours in the john, sometimes 8-10 times a day, and was using a whole roll of toilet paper a day, now I am healing slowly, but only a little neglect to my diet and just a small amount of any of the neuro toxins get in me, it brings back colon inflammation, and cluster pain when fecal matter passes the ulcerated parts of my colon. This connection is too much for me to ignore, althought I don't know if they are just connected as having the same cause or one causing the other, or just coincidental. This limited "controllability" leads me to believe that I have only reduced some external factors to lessen the pain of the affliction, and that I am for sure "cluster positive", but I believe it shows that external factors can be manipulated to make a difference, and even I was suprised it made such a big difference in such a short time esecially after such a long history of no rhyme or reason. I have had no remissions ever, although I read about them, and I was even suspicious that what I had was not cluster or chronic cluster. I felt that those were buzzwords and trivialized the afliction I had. I give a good blueprint of my cluster episodes in terms of how the intensity increased within each attack at my weblog mentioned earlier(under the colon connection heading). Are any one else's headaches like this? Maybe I have a relative of cluster that is caused by different factors than clusters. Does anyone else have digestive problems or symptoms similar to mine, or chronic cluster with no remissions, or tremors. Maybe only candida albicans stresses out the system enough to get clusters with absolutely no remission. (now I look back and see that I've had the candida albicans overgrowth for my complete cluster history, and simply the way it makes alcohol from every piece of bread meant that I was ingesting alcohol every day, and we know what that does-even if that is the only connection, maybe it was just the alcohol, that left me with no remission, I don't know, but I can't help speculating. I forsee the possibility of getting regular attacks again, but there were almost 30 other symptoms that responded exactly the way the information I found said it would, so I am hopefull. I'm thankful for the 20 years of hindsight, it really helped me piece this thing together for myself, I was once just resigned to not having a normal life, and accepted the medical communities collective judgement. One of my many character flaws is my persistance, but in this case it paid off for me. I hope none of you give up, and I hope this provokes you to ask more questions of your doctors, although that route didn't work for me it is still the best route to pursue it, but don't abandon other routes that may get you to the same place. -Chopper |
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Title: Re: 19 year clusterhead now drug free! Post by RightSideCluster on Sep 25th, 2004, 1:16pm Well I'm sad to report that someone is still holding a grudge against me, and I've received another influx of computer viruses. It may be a coincidence but I was hit with a similar influx the last time I posted, and now again more when I posted yesterday. I've only had one other virus come through email in the last 6 years I've been online, since I surf very cautiously, but when I posted here I got a handfull last time, and 2 particularly damaging types this time(pamela and bloodhound pack). They were all spoofed, but spoofed carelessly, even a novice like me could tell they came from the same IP. The spoof even contained refrences to usernames here but I suspect they were added to try and shift blame away from the perpetrators. Fortunately I'm not going to lose my head over it this time, because I caught it as it began to rewrite my registry, but unfortunately I can't afford to risk having the computer I rely upon for my livelyhood taken down again. If I find anything here interesting enough to comment on, I will just put my opinions on my suicide headache weblog. There will never be anything for sale there, or any links to anyone else, just a safe place for me to share my thoughts. I wish you all the best luck in your pursuit of a better life but I must go my own way now for my own safety. Like I said earlier, I was probably gonna regret posting my info, but I felt a need to clear the air. Again I apologize for all who've I've offended, and I see I didn't learn my lesson last time, but someone has now driven it home for me. (I can only imagine what is happening to the poor guy whose name and address was purposely posted by a member here!) -Chopper p.s. maybe I'll write a song about this whole website experience for my next CD so it will be preserved forever in the annals of history for my fans in over 70 countries to enjoy. |
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Title: Re: 19 year clusterhead now drug free! Post by Jonny on Sep 25th, 2004, 2:40pm :'( :'( :'( ......... :-*......... [smiley=laugh.gif] Dude, Aint nobody sending you shit from here.....you got ISP #'s?....send them to me....you got names?....send them to me. Ali, the head cutter from Syria is not complaining of virus and he is hated here more than anyone......shit!, he keeps coming back. Lets have some numbers, dude .....................................jonny |
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Title: Re: 19 year clusterhead now drug free! Post by Sean_C on Sep 25th, 2004, 9:32pm How did I miss all this fun ;;D Unfortunately I didn't learn anything here, except that this guy is episodic now and he thinks he cured himself. Enjoy your PF time chopper, it'll more than likely return. And just for the record, I haven't had a hemeroid in my 24 years of clusters so you can scratch that as a characteristic. But I do have a cure for that if you need it. http://www.fun.from.hell.pl/2004-02-20/dla-tesciowej.jpg Sean.................... ;;D |
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Title: Re: 19 year clusterhead now drug free! Post by don on Sep 25th, 2004, 11:31pm Quote:
Except for the 8 pounds of coke I do in order to finish these posts. |
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Title: Re: 19 year clusterhead now drug free! Post by Sean_C on Sep 26th, 2004, 8:50pm on 09/25/04 at 23:31:45, don wrote:
LMAO...........I was waiting for him to tell us about his second grade teacher LOL Sean........................... ;;D |
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Title: Re: 19 year clusterhead now drug free! Post by Charlie on Sep 27th, 2004, 4:41am http://www.netsync.net/users/charlies/gifs/POPCORN 2.gif Charlie |
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Title: Re: 19 year clusterhead now drug free! Post by pokemom on Sep 27th, 2004, 12:46pm Some intresting informaition I have been keeping up with. Your. cousin might like to know about this. (Fampridine-SR ) :) Trial ResultsThe MS trial showed a strong positive trend compared to placebo in its primary endpoint, improvement in walking speed, as measured by a timed 25-foot walk. The trial also showed a statistically significant improvement across dose groups in its secondary endpoint, the Lower Extremity Manual Muscle Test (LEMMT). These data are consistent with data from earlier double-blind trials that involved fewer subjects and shorter treatment periods. Because most people with MS experience both impairment in walking ability and weakened muscles, the Timed 25 Foot Walk is widely used to assess MS patients’ functional status. The LEMMT is a standardized, 5-point manual assessment of strength, applied to leg muscle groups. Analysis of the other secondary endpoints in the trial is ongoing. Andrew Goodman, M.D., Director of the MS Center at the University of Rochester Medical School and chair of the company’s MS advisory group, said, “We are encouraged by the findings of this Phase 2 trial of Fampridine-SR in MS because impaired walking and muscle weakness are two of the most common and devastating aspects of this disease. There is a tremendous unmet need for treatments that can improve walking and weakness, as none of the currently available therapies can do so.” The two SCI trials did not reach statistical significance in their primary endpoints, reduction of spasticity as measured by the Ashworth score and improvement of patients’ Subject Global Impression (SGI) rating. The Ashworth is a validated, 5-point clinician assessment of an individual’s spasticity (the involuntary tension, stiffness or contraction of muscles.) The SGI is a seven-point scale in which study participants rate how they feel about the overall effect of the study drug. In one of the SCI studies, the data showed a positive trend (p=0.069) toward improvement on the Ashworth score when analyzed across all observations during the double-blind study drug period, the study’s pre-specified plan of analysis. When analyzed based on the subjects’ last observation carried forward (LOCF), a commonly used method of analysis, the Ashworth score in that study was statistically significant (p=0.006). The drug groups in both studies showed a progressive mean improvement on the Ashworth score during the double-blind study drug period. However, the placebo group in one of the studies showed a more pronounced reduction than expected. Analysis of the trials’ secondary endpoints of improvement in bowel, bladder or sexual function is ongoing. In both the SCI and MS studies, the adverse event profile, including serious adverse events, was consistent with that observed in previous studies. The most common adverse events were insomnia, paresthesias, dizziness and nausea, the majority of which were rated as mild to moderate. Fampridine is a selective neuronal potassium channel blocker and has been shown to restore nerve conduction by blocking the exposed potassium channels in damaged nerve fibers that have lost their insulating sheath of myelin. By closing the channels, fampridine allows such nerve fibers to transmit impulses again. Fampridine-SR is an oral, sustained-release formulation of fampridine, designed for twice-daily dosing. In addition to Fampridine-SR, Acorda's clinical-stage pipeline includes valrocemide, which it is developing with Teva Pharmaceutical Industries Ltd. for the treatment of epilepsy and bipolar disorder. The company’s pre-clinical stage pipeline includes therapeutic candidates for remyelination and nerve repair in SCI, MS and other CNS conditions, and the Company is continuing to evaluate in-licensing opportunities for clinical and post-market stage products. Have a great day! Poke` mom |
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Title: Re: 19 year clusterhead now drug free! Post by RightSideCluster on Sep 27th, 2004, 11:57pm Hey guys and gals, thanks for all the positive messages of support I recieved off-board. I will be testing my PH this week to see if it fluctuates with my symptoms, I will report actual values so you can all debate and speculate it's connection. I hope to isolate which foods are giving me the most deviation from the 7.35-7.45 range that is considered normal. I only speculated ph was an indicator of leukotriene pollution, but I found info yesterday where others have recently proposed this route also so I thought I'd try it and see. I have a feeling my blood is far to one side of the scale, but when I had die offs, temporarily jumped to the other side of the scale due to the massive pollution of a die off. I may have to go off my diet till my symptoms return to get that swing effect, but my curiousity is currently getting the better of me. (It seems that I always discount the cluster pain when it's not at it's worst.) Pokemom, Thanks for the info, it sure shows that another approach can be effective and is worth investigating. I have no medical training and approach all problems I encounter with the scientific method, from an engineer's perspective, so I like to break all the problems down to their basic building blocks, where it is easier for me to understand the processes at work. Adjusting or modifying the nerve cells to work without myelin sheaths intuitively seems to me to be dancing around the real problem: unsuccesful remyelination. Succesfull remyelination could be used to reverse disease, it hasn't been accomplished yet but researchers seem to be on the right track and I am confident this addresses the root of the problem. The MS society scientists and doctors admit there seems to be some sort of stumbling block in remyelination, and now suspect an external factor seems to be inhibiting this. (hydrogen sulfide has been proven to inhibit the cells responsible for myelin repair) These seem to be the latest theories that indicate this "external factor" and shows how much little clinical evidence is currently available: http://www.mssociety.org.uk/research/ms_frontiers/04_repair_fail.html I am already skipping to the next step and looking at possible pollutants that may not be obvious to the researchers just yet, hence my interest in hydrogen sulfide. It is produced by both candida albicans sepsus, and it appears in higher amounts in urban areas that also show increase in MS rates. (my cousin lives in Bayonne NJ, which IMO always smells like swamp gas-hydrogen sulfide) The MS site confirms they are actively searching for this "mystery" roadblock substance(which I suspect is hydrogen sulfide), and have now begun to look beyond their traditional approach of looking for direct result causes (I wish cluster researchers would use such an open mind but cluster research is admittedly even sparser than MS research and moving at an even slower pace and has been criticised by some leading scientific experts as misdirected.) This quote from Dr. Franklin indicates how MS has moved beyond the traditional research parameters often imposed by the companies funding the research. http://www.mssociety.org.uk/research/ms_frontiers/04_franklin.html I hope cluster researchers make this leap sooner than later, and then they would be on a faster track to finding the actual mechanism at fault and treating or eliminating it, and not just proposing masking treatments for the pain.(which is all they are doing right now, and which is what MS researchers seemingly did for ever) I'm glad the MSS are taking several approaches to finding a solution, and now that they are, I think a solution is not far away. I have some anecdotal information on reducing MS by eliminating hydrogen sulfide, but the sources hydrogen sulfide of it are many. It comes from decaying matter, which occurs everywhere in the world, and is even generated inside our bodies by our digested foods if they remain in the digestive tract for too long of if they encounter too much e-coli, salmonella, or candida albicans along the way. It also comes from cigarettes, marijuana, landfills, composte heaps, and many other sources that can effect us in our daily lives. Even water from your tap can have hydrogen sulfide in it, but it is the accumulation of hydrogen sulfide, and possible combination with other poisins that may be the real danger. (it gets even more dangerous when mixed with water, forming a variant of hydrochloric acid.) |
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Title: Re: 19 year clusterhead now drug free! Post by RightSideCluster on Sep 28th, 2004, 12:02am Sorry, this one got even long winded for me. Many doctors seem to think that all substances that occur in the body naturally aren't harmfull (that is what they are taught in medical school about candida) but some become harmfull when the bodies protection against said substance is compromised. (just eat an orange or chocolote during a cluster, and it inhibits a pain relieving enzyme and makes the cluster last longer than usual). This attitude is generally caused by the limitations the federal government imposes on what researchers can conclude from their research. The government's modus operandi traditionally has been that there must be a direct connection for a drug to be approved, well now they find out that these cureless mystery diseases don't have a direct connection but instead have either a cumulation of factors or a factor that is one or two steps removed from the mechanism. Pokemom, it blew me away when I found out you have both, god bless you, I hope we all can put this behind us soon. It really makes me even more suspicious of hydrogen sulfide, because doctors can't seem to acknowledge that it may exist in larger quantities inside our bodies than they can detect. In rats, it causes demyelination, and removing it allows remyelination, but a rats nervous system is usually exposed to higher quantities of hydrogen sulfide and has become accustomed to myelin repair in it's presence. I suspect humans could remyleniate if the presence of hydrogen sulfide is removed, something that has not been addressed by any research, yet. Just because a person may have clusters and not hemmoroids does not disprove my initial assertions, nor does it prove you don't have candida albicans, aspergillus or any other auto-immune depressent like cids or aids which I suspect can also cause clusters. I feel my hemmoroids developed so rapidly because once the candida albican's razor sharp mycelial rhizoids penetrated my colon and recturm, and began to flourish uncontrollably, I just ignored it and figured it was a result of all the steroids, anti-depressants, bi-polar medications, and ergots I was taking. My high sugar diet just aggravated the situation and made it worse. I never said that everyone who gets clusters will have hemoroids, and if I did say that the I overstepped my bounds. I meant to only say that if you have problems with your rectum and clusters, you should investigate the possible connection until you satisfy yourself. My doctors repeatedly told me I did not have candida, but even now I still have traces and have proved him wrong, so now I don't just believe what I hear or read no matter who it comes from, there has to be a logical scientific foundation that I can understand before I can put my faith in it. Take a look at my symptom list on my suicide headache weblog and you will see hemmoroids is only 1 symptom I had, and it was relatively minor when compared to the spastic bowel, IBS, ulcerative colitis, and protracted and distended colon that developed. I predict that if you have an auto-immune depressant like candida albicans or aspergillus fungus, then you are a candidate for colon deterioration if you have a high sugar, high mold, high salt, high fat diet. Just pulling one symptom out of my post and implying my whole model collapses because one person doesn't have it is flawed prima facie and per se. In response to some questions asked earlier off-board, yes I did have head trauma on the same side of my head as my clusters. Once when I was 13 I was knocked out by a blow to my head, and also when I was 14 I got struck again in a similar fashion. (freestyle skiing was my thing back then, and I loved doing helicopters and backscratchers at the ski hill near my house, sometimes unsuccesfully) I strongly believe that this may be the true cause, and is why I was only looking for a way to make my vessels less likely to spasm, and I found it. I got a real job today, and passed my drug screening with flying colors(or maybe that was an aura!) even though I was afraid all the anti-oxidants I was taking would indicate a tampered sample, whew! -Chopper |
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Title: Re: 19 year clusterhead now drug free! Post by Abaris on Sep 30th, 2004, 8:58am Hmmm... I thought that you were a music procucer/musician with your own studio that has cranked out 80+ projects in the past three years. And that you have been in the music industry for many more years. What in the hell are you doing taking a drug test? This is never a requirement in the music biz because it would not be cost effective to get back all those positive results. Also, try and get a musician to piss in a jar or offer up a hair sample. The head trauma thing does explain much though. |
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Title: Re: 19 year clusterhead now drug free! Post by ExplodingEyeBall on Sep 30th, 2004, 9:06am on 09/30/04 at 08:58:34, Abaris wrote:
I'vr been a musician for over 30 years and I would piss in a jar or give up a hair sample any time. |
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Title: Re: 19 year clusterhead now drug free! Post by Ree on Sep 30th, 2004, 2:17pm oops ree is very sorry... thanks Pat... for pointing out my dumbness............ I misread that first post........I was right though it wasnt written by a 19 year old.........duh...? back to my corner...........love ree |
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Title: Re: 19 year clusterhead now drug free! Post by RightSideCluster on Oct 1st, 2004, 7:33am I only started a studio because I couldn't do anything else, and a large part of the mixing and mastering I could do in isolation by myself. I got a job because I'm trying to get back into the insurance game and see if I can find a decent specialist without his head buried in the sand. Ulcerative colitis(my remaining symptom) is one symptom that is incureable in 50%. I want to get one of those scope things like I had 15 years ago to confirm that my colon is indeed healing properly. I am still open minded enough listen to what my doctors say, but it's just not the only thing I listen to anymore. Many of the projects I worked on as both the producer/engineer of the project and also as the mastering engineer. Almost all of the projects I recorded/mastered with my studio, I also then mastered at my mastering labs, so there is some overlap between them making the total project count more like 50. (most studios don't mix production and post duties and/or credits, they are traditionally listed seperately.) Sorry if I wasn't clear on that. Both cigarettes and marijuana and the aspergillus in the citric acid carbonation of soda pops, contain high amounts of the neurotoxin hydrogen sulfide, which I believe to be an important link in connecting outside factors to the cluster mechanism. If you live near a landfill, water reclamation center, or urban area, there are also higher concentrations of hydrogen sulfide in both the air and tap water. Hydrogen suflide skins the neuron's(nerve cells) protective myelin membranes(demylenation). Perhaps the cumulation of hydrogen sulfide is causing the neurons in our hypothalamus to respond in a way it is throwing off our normal hypothalalmus function. Maybe the bodies own defenses to this neural toxin overload is causing the hypathalamus to be overactive during attacks. I don't know, and neither do doctors. They don't say "the hypothalamus is the cause" they say they believe the hypothalamus my be implicated as the cause. I had to ban smoking from my control room when tracking bands as the live room and iso booths always had a haze of this smoke. -Chopper |
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Title: Re: 19 year clusterhead now drug free! Post by Superpain on Oct 1st, 2004, 4:17pm No offense chopchop... But you sure like to type, don't you? :o What'cha got in your studio? I have a little home studio set up... I just use a daw with a crappy little us428 to record multiple synths, samplers and miscellaneous noise making apparatus. Nothing fancy but still fun. It's a very expensive hobby! |
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Title: Re: 19 year clusterhead now drug free! Post by thebbz on Oct 1st, 2004, 9:54pm :o WoW :o BB He's got the Jack! PFDAN |
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