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  1. Hey Brain, just wanted to let you know that I have been working directly with a guy in the UK who decided to give my "theory" about a parasite a try. After 6 days (just like my 6 days) on my "cure" drug, he passed something out of his nostril but instead of blowing it out his nose it want down the back of his throat and he swallowed it. Said it felt like a big slimy glob. Now he suddenly no longer has any stuffiness in his CH nostril like he had for years, just like me. Unfortunately though, his typical cycle had ended just before he got the drug, but he went ahead and took it. So we wont know for around 10 months whether he still has any CH. Just saying though that I wish I could get more people to try this instead of just blowing it off and saying it's impossible. It COULD stop a lot of suffering. You just don't know unless you try it.
  2. to Dallass Denny, LMAO - IF, as you said "we was spreading the message far and wide and loud and proud when he got here...", then why were people still posting on that thread that they needed help with getting oxygen, and nobody ELSE had posted any offer of help or info there "when I got here" and posted about welding oxygen? And no Denny, I am not taking credit for anything, except putting up with YOUR B...S...., with "and in the eternal words of Potter, I call BULLSHIT!!!" Grow up Denny! You are the one taking credit for EVERYTHING by screaming "loud and proud" about how great you are, not me. I never posted again after that until now, and the only reason I brought up my post on oxygen her was because a bunch of "people" here were saying stuff like "what the hell could a "newbe" possibly have to offer to all of us "experts?" So go ahead and ban me for copying the BS quote right out of your message text. Au revoir.
  3. To BOF – and everybody else, I want to let you all know that when I made that post as GoggleEye regarding oxygen in Nov. 2018, I had only been in remission since March 23 of that year, and I made that post with the attitude that I WAS only in remission. At that time I didn't even consider that I might never need the oxygen again, and I wrote that post with exactly that attitude. However, I have not used oxygen for anything except Oxy-Acetylene welding since 3/23/18, because I have not needed to. Since I had not saved the "object" that came out of my nostril, and therefor could not verify what it was, I was considering it to be just a remission at that time, I did not make any post regarding my experience with Doxycycline and parasites, or suggesting that I was free of CH because at that time I did consider it to just be a temporary remission, and I always had my oxygen bottle hooked up and ready to go on a moments notice. I also still carried my ¼ tablets of Rizatriptan everywhere I went. It wasn't until my remission had gone twice as long as my longest prior remission in all of my 16 years of CH (9 months, with Verapamil) that I began to consider it to be more than a remission. My last bottle of Verapamil was filled on 2/27/18 and I had not taken any Verapamil for over 6 months prior to that. I still have the bottle and it still has 234 out of 270 tablets. At 3 per day that is 12 days worth gone. My Doxycyline prescription was filled on 3/16/18. It was a 10 day (20 tablet) prescription. On my 5th day of that bottle I had my last CH. On the 7th day, at about 2 or 3 am I blew a black object out of my left nostril. That was the very early morning of March 23. That is the day that I count from as the beginning of my current "remission". Not having explained that, I can understand your doubting my story. I apologize to the less than a dozen people who have viewed and commented on my post claiming a possible "cure". But is there anybody here who wouldn't be really happy with a 21 month "remission" (and still going) after having chronic CH for more than a decade? I know my story was not well received here. I guess I went about it all wrong for people who are convinced there is no known cause and therefor there can be no "cure". At this point I don't care any more what anybody here thinks, except maybe 81007. But I guess that if even one person who has seen my posts tries the Doxycline, and their CH stops abruptly and completely, then it was worth it. I hope that all of you who have viewed and commented on this thread may some day be free of the “Beast”. But unless people at least TRY anything that comes along that seems to have ANY possibility of working, that will never happen. Au revoir for now.
  4. To THMH (ADMINISTRATOR) Thank you for your reply. You are one of the few people here that did not insult me or belittle me over my posts. You were very kind and helpful. I have gone to your site here, if that's what you call it when I click on your ID. You are one of the few really "wise ones" here. I get your message about the use of the word "cure" here, as you can see from my other posts today. But I personally will never blow off anybody who suggests ANYTHING here that helped them. I have been accessing this board since way before I created the GoggleEye login. I just never "joined" until I saw something that I just had to respond to, regarding questions that were posted about being unable to get oxygen. I first found out about oxygen here, but I had to figure out how to use it effectively on my own. When I first got it from a doctor prescription, it was useless with the regulator and the size of the tank. I realized I had lots of oxygen here, and a good regulator, because I do some welding. So I asked a guy at the place where I got my oxygen if they also supply it to hospitals and he said yes. I then replied that I don't see any of "medical" type tanks with the white top on the lot out there. He said, "oh no, those are mostly only used for the small tanks that require a doctors prescription. For hospitals we often use the same tanks that are used for any other industrial" purpose, just like the ones you get". I then went and hooked up an "air compressor" blow gun to my welding tank with a food grade plastic hose and set the welding regulator to supply as much O2 as I could take in with a normal breath, and soon realized what I had not seen here, which is that you have to take in just 100% pure oxygen and only oxygen for it to be effective. So I had to open an account and reply to the people who were posting that they couldn't get oxygen or that it wasn't working for them. I never had a reason to post again until I "accidentally" went into "remission" almost instantaneously, and then realized just what had happened that night. But I realized that I could not post my story until my period of "remission" went at least twice as long as any previous remission I had experienced. By that time, I felt that it would be almost criminal NOT to post it here. But I didn't realize that the word "cure" was just not accepted on this site, and that using it would get me belittled and insulted to the point of just giving up and going elsewhere to try to help people who really WANT help, and who have FAITH, and actually believe that their CH could possibly "turned off". OK, my CH may come back some day, but I personally doubt it, because of the physical change I felt in my left nostril after I blew that “thing” out of it. Since that night I have never had a “shadow” headache, as I did have in my other “remissions”, and my nostril has never again gotten that “stuffed up and completely closed off” condition that always accompanied the headaches, and that also caused the “shadows” that I did experience in my other periods of remission. Also, since temporarily terminating the DK login, I have actually found 2 other people, on you tube channels who had their CH diagnosed as "parasites, and who were treated for same and who were apparently “cured”, and had not come back. So much for saying that ANYTHING is possible, if only you believe, and give it a try.
  5. To 81007 Thank you so much for your post. You are apparently the only person here to believe what I posted, and you are almost the only responding post that did not intentionally insult or belittle me. Your post indicates that you may have tried it, and you mentioned lab tests. Doxycycline will not kill viruses – only bacterial infections and SOME parasites. Would you please let me know whether you have actually tried it, and what kind of lab tests results you are waiting for? And about your “Disclaimer”, I never meant to infer in my post that what “has put me in remission for almost 2 years” was a “cure”for all CH. I realize from all my research over the years that there are at least several possible “causitive agents”, and that there are people out there who THINK they have CH, when they don't. They may have one of the 2 or 3 “similar types” of headaches, which all have different symptoms and usually respond to treatments that CH doesn't. But if just 1 in 50 people who were to try what helped me were to have the same results, then it would be worth every hour that I have put into this effort. As I tried to explain in my first post, the problem is that to get that result would require that 50 people would have to try it and then report their results back to some central point, as in a clinical triat, but there are far too many scoffers out there to ever get a clinical trial done on this, or any other treatment that someone may have posted here on this site as “having cured them of CH”. As soon as you use the word “cure” here, you get ridiculed and insulted, and you either give up or get “banned”.
  6. to BOF - no, I didn't forget that I gave you my original ID. I just terminated the DK account temporarily and had not re-activated it when I came on as "GE" to see if anything realistic had been posted. I didn't want to get any more notifications of posts to my original post, and I didn't want to be tempted to come back here and post again, because it seemed that all I got was negative replies and insults so I gave up on this board. I have been busy doing further research, and actually helping people who have posted about their CH on many other sites and you tube channels where people are begging for help, instead of wasting my time here. But please note that the first thing I do when people respond to my posts on you tube channels is to direct them here to “clusterbusters.com”. Do you actually believe I am mentally disturbed, or trying to scam anybody? I spend at least 4 to 6 hours a day looking for people who need help, and trying to help them. By the way, I have actually found 2 other people who had their CH diagnosed as "parasites, and who were treated for same and who were apparently cured. Oh, sorry, not "cured", they just went into temporary remission as you would say .
  7. Hey Brain, just FYI, I couldn't have blown the little sucker out because, you see, it was hiding within the soft tissue inside my nostril, where it didn't even show up on the MRI's (5 of them over the years), partly because soft tissue within soft tissue doesn't really show up in an MRI.  But if the doctors who were examining my MRI's had been LOOKING for a possible parasite, they just might have noticed a particular SHAPE that might have showed up in the tissue of my nostril, but ONLY if they were looking for it.  I pray for your Fire in your brain to be pout out.

    I'm done now, I think.

  8. CJW, this is primarily for you. As for Rizatriptan, if you have headaches in public that make you have to leave your wife alone for an hour while you are out at a nice restaurant with her, celebrating your wedding anniversary with the woman who stuck with you for all those terrible years and you haven't TRIED Rizatriptan, then you are not like most clusterheads, who would do most anything to kill the pain immediately or get a long term remission. Far as I am concerned, the possible side effects of Rizatriptan, of which I never had ANY, are nowhere near as bad as the possible side effects of trying to buy illegal drugs like LSD or or its precursors, or "magic mushrooms" and then finding yourself in the midst of a big drug bust, like one guy I knew before he went to jail for 5 years for trying to just buy shrooms from a guy who it turned out also sold everything else. Anyway, you are right, the rest of the guys have done exactly as I suspected, and HAVE driven me off. I just can't understand someone who has suffered CH and would not try almost ANYTHING, and most particularly because the scientific and medical communities have said "it's impossible, and there is no cure". You just remember that those are the people who are making all the money running "trials" and doing "research" on drugs and other things that will cost a lot of money and keep you coming back forever to get their crap that just "treats the symptoms". Look at the entire medical industry. There is NO MONEY in CURING ANYTHING. but there is never ending money in treating symptoms and creating new and expensive (and harmful) drugs. The res of the "advanced members" will likely not even read this post, and that's just as well, since they would most likely try to convince you to not try what I am going to tell you. I am going to keep it as short as possible. Take it or leave it. I just don't give a **** any more. Since the first year after I was diagnosed, I always felt like there was a damn worm living inside my nostril, buried not to deep within the soft tissues there, which also have a pretty good blood supply. I thought it was something like a blood sucking leech, and it mostly didn't like alcohol. It didn't require alcohol to make it go into spasms, but alcohol would guarantee it would. So after 16 years of CH, I just happened to catch that flu that was going around and killing a lot of elderly men. But it wasn't the flu that killed them. It was bacterial pneumonia that was killing them. So I had the flu, and my lungs were filling up with something and It was getting hard to breath, so I was supplementing with my O2. Then I decided I better go to my doctor, who confirmed that I might have pneumonia. Now at the same time, I had just restarted my Verapamil, hoping to at least slow down the headaches a bit because I was having 4 or 5 a night and not getting any sleep. I had only been on the Verapamil for a few days at that point and it wasn't helping any yet. That is when the doctor gave me an RX for DOXYCYCLINE HYCLATE, 100 MG, 20 tablets (Also known as Vibramycin). So I started taking them twice a day and continued the Verapamil, and the headaches kept on coming. On about the sixth night of taking the Doxy I didn't have a headache, but I woke up about 3 am from pressure in my left nostril, which was my headache nostril. It wasn't at all like the stuffiness and pressure that comes just before a headache. It felt like there was something stuck up my nostril. So I grabbed a tissue and blew my nose hard, while holding my right nostril closed, and something came "popping" out of my left nostril. I was very curious so I turned on my night light and looked in the tissue. There was a blob of something black there. I thought it must be a blood clot, so I kind of squeezed it and rolled it around in the tissue, expecting it to spread out flat and look red, like a blob of blood. But it didn't do that. There was no red, only a semi-solid but soft black blob that was about a half inch long and sort of round, but tapered on both ends, It kind of looked like a leech that has been sucking blood and was touched with a match, causing it to shrivel up. Now I had not been getting much sleep, so my mind wasn't working well, and I thought, no big deal. At that point I got up to go to the bathroom, as I usually have to d several times a night, and I just happened to carry the tissue there with me. It ended up in the toilet and I flushed it and went back to bed. When I woke up in the morning and thought about what had happened, I began to realize that my left nostril felt completely different than it had in as long as I could remember, like maybe 16 years. As the day went on, I began to realize that what I had blown out of my nose that night must have been there for a very long time, because my nose now felt open like it hadn't felt since I could remember. Then it hit me. My left nostril had been restricted to a point that it was hard to breathe through for as long as I could remember, and now I was breathing through it better than my right nostril. So I decided to research Doxycycline. Turns out it is not only prescribed for bacterial pneumonia, but also for malaria, which I think is actually caused by a parasite, and also for several types of VD as well as "other bacterial and parasitic infections". So now you tell me. Did the Doxy kill my "worm" that had been causing me all that misery for 16 years? I have not had a hint of nor a shadow of a CH since March 23, 2018. There is only one way to ever prove it and that is for it to do the same for just one more clusterhead, AND for that person to SAVE whatever comes out of their nose on the night that their suffering ends. So if nobody else ever tries it, and/or they are not looking for something to come out of their nose, and they don't save it and have it analyzed to determine what it is, then of course no more research will ever be done on whether or not a parasite COULD be ONE possible cause of CH. It might even be a parasite that science is not aware of. So now it is in your hands and yours alone, since as I said last night, If only a few people have the faith to try it, we will never know. Remember that only 0.1% of the population ever suffer CH. That means that out of every 10,000 people you will ever meet or know, you will be the ONLY ONE that has ever had a Cluster Headache. And what if only one out of 200 sufferers, which is one out of every 200,000 people, might have their CH cured like mine was. Is it worth trying to convince this bunch of "experts" that have blown me off and chased me away that it still a possibility? It is now up to you, and anybody else that you can convince to try it. All you really have to do is either convince your doctor that the pain is so bad that you would try anything . Then let him read this story and see if he will give you a shot at it with a prescription for an "off label" use for Doxycycline. It is NOT illegal for him to do so. And since insurance wont cover it, you can use a pharmacy coupon from GoodRX.com for a 10 day supply of it and get it at Publix for under $15 or Walmart for under $20. So what have you got to lose, except the respect of the rest of the "experts" here? Signing off for good and going elsewhere to try to spread the word. I am done being insulted here by a bunch of non-believing experts. Yes, I DO know that they have helped a lot of people with treatment information over the years, but so have I with just the one post I made on obtaining and using Industrial oxygen several years ago, under my old "handle". I know that at least a few others here have used that very same information AFTER I posted back then, but never referred to my post. But I never came back on and bragged about how much "I" might have helped others. I am done here, as it seems that what has helped me over the years is somewhat in conflict with the "experts". So you can go ahead and delete my profile now. "BeastBuster"
  9. DragonKiller


    To Louis and CHFather, who mentioned MAXALT, then discussed Rizatriptan. I assume they are one and the same. My PCP, and NOT my Neurologist prescribed it for me at my request several years ago when I was having really bad days and nights with 4 plus attacks a day, and not always able to access my O2. I showed him what I had found on Rizatriptan for Migraine, and he agreed to give it to me for that malady. CHF mentioned that it is NOT used for CH, but it certainly should be. My DR gave me RX for 7 sublingual tablets. I think they were 10 mg but they were tiny at less than 3/16 inch diameter. In the past I had used Zomig nasal sprays and though they did work, they left me with terrible "hangover" for hours, so I decided not to try a whole Rizatriptan tab at first, but to cut one into 4 tiny little pieces. I dissolved that tiny thing under my tongue, and in 5 to 10 minutes my CH was completely gone, with no hangover. I continued to use that formula (each tablet - only one at a time - cut into 4 pieces with a razor blade and kept in sealed container, pack of 7 is good for 28 headaches) with total success and NO side effects for the next several years until my headaches just magically ended a while back as I have discussed elsewhere, which by the way I posted on about an hour ago.
  10. OK Clusterheads, here is my issue and why I want a goodly number of people all exposed to what I have to offer all at the same time. So far only a few people have responded to my post, and many of you had pretty much the same attitude – that a cure is impossible and I must be a scam artist. So what happens if I tell the few of you my story, and half of you say the same thing that my Neurologist said, which is “it's impossible”, and you blow it off. Then lets assume the other few people try it and have no success. The only thing that proves is that it didn't work for less than 10 people, and the rest blew it off, so it goes nowhere. Now understand, I never said what apparently cured me will cure everybody, or even anybody. You all can decide. It might be “only in my dreams” that I am cured, as one of you have pointed out by telling me that there are “lots” of 2 year remissions, and some of even 10 years, but then I assume they all had recurring bouts. So mine MAY come back, but I personally doubt it. Even if it does, I have had CHRONIC CH for over 10 years, and believe me, these 20 months have been a lifesaver for me. I only had on other “remission”, which lasted about 8 months, but I did have “shadows” through it all. That was the first time I was put on Verapamil in 2015. I have not had one shadow or one hint of a CH since THIS “remission” began. So what's in it for me? ABSOLUTELY NOTHING. But if only a few people try it and none has success, then what's in it for everybody that DIDN'T hear about it because the possibility of it reaching others would then die with the few of you. But what if 100 people all tried it, and only FIVE had the same experience I did. Let me tell you, those 5 would NEVER let it die, on the chance that only 5 MORE people out of 100 could end their suffering. I will tell you up front that my experience IS a FLUKE according to all of the research I have since done into my theory. But should I not spread it because I can't find any scientific explanation behind it, and because I discarded the ONLY piece of proof of what happened almost immediately after it happened, and before I realized exactly WHAT had happened? In fact, if I had kept the “evidence” it could have been tested, and if it was what I think it was, I would have been all over this board with the information within weeks, and I believe it would have sparked immediate clinical trials. But without the evidence, I certainly understand your skepticism, because the story I am going to tell you is beyond sounding ridiculous and impossible. Thus, if only 4 or 5 people hear the story, it is very likely that you will all laugh me off of the board and never try it or spread it, and this thread will die. But if 100 people hear about it and only half think it's worth a try because it's cheap, and only 1 or 2 have success, do you think it's worth trying? Racer1_NC made this comment: This place is a direct result of Bob's quest to help others. So please, let's get Bob involved and see if this will go further than the few of you who I am replying to now. Do you understand that I am not playing games? When I make my next post, which will be the whole story, then I leave YOU with the responsibility to spread it to enough people to either prove it works for at least a few, or that it was just a fluke that it worked for me. That's all I want out of this and it's all I EVER wanted. I apologize in advance it it was just a fluke and I have wasted all of you time and gotten anybody's hopes up to no avail. Do any of you know what a “fluke” is? It is a parasite - Do any of you remember the TV show "Monsters Inside Me"? This is not the first time I have mentioned it. I was dropping a clue, but didn't want to go any further until you all understood my real position. It is not good enough for just the few of you in this conversation to read the story, and maybe 5 try try it, and none have success, so it doesn't get spread any further. It will take me some time to put my story down in print, as I am a slow typist. This alone has taken me over 4 hours to think out and put down. It would be useless to tell the story and not go into detail as to the theory, the procedure and what must be done if it works for anybody. I will try to post it tomorrow, but I will tell you now that I believe MY beast (Dragon) was a parasite inside my sinus cavity or in the soft tissue in my nostril, and it lived there somehow for 16 years. The "evidence" that I threw away was what came out of my nostril when I woke up from pressure in my left nostril and blew my nose into a tissue at about 3am that one very strange night. It came out with a kind of a "pop". But then I had to go to the bathroom, I threw it into the toilet. All the years I suffered CH, I had a feeling that there was a foreign object of some sort inside my nostril. It was literally like I could sense it and feel it move around. When I awakened that morning and had my first cup of coffee, I realized that "feeling" was GONE. Until tomorrow, may all of your "monsters" lie dormant.
  11. OK John019. I guess I will just shut up. I have absolutely NOTHING to gain here, but I am putting myself at risk even suggesting that there could be a cure. I guess that you few people here who have seen this thread are probably the only ones who will ever see it. Apparently none of you currently on this thread are willing to believe anything that you don't have to pay for or that you can't personally gain from. So I guess I will go ahead and try to find a doctor or clinic that is willing to do a "clinical trial" with what I can provide to them. The other possibility is I may write a short book and put it on Amazon for $5 or so and then watch Amazon "pull it out of circulation" when they realize what it is. Thanks for all the help and encouragement you have all shown me (not). I will be gone for now but will watch what happens for a while.
  12. OK CHFather - I have been viewing this board off and on since around 2005.  I never "signed up" until 2015, because I had no answers to offer anybody till then.  I signed up then and made one post as "Goggle Eye".  Last time I checked, mine was the very last post on that thread, so either it helped many people, or the thread just died for some reason, probably to be taken up anew by someone using the info I provided and claiming it to be their own.  I chose that name because it reflected how I felt in my left eye every time I had a CH.  I have suffered CH since 2001, and I never gave up hope.  I have literally had thousands of mind killing "suicide" headaches over the years, and I can't even begin to count the lost hours of my life, or the lost sleep, or the effect that it had on my life, and on my wife.  I sure don't need people who have no faith telling me that what I want can't be done on this forum.  I never would have survived if I didn't believe in God, and I didn't have total faith that SOMEDAY He would heal me.  I never had a doctor in the state I moved from in 2015 who knew anything about CH.  I had to educate them all, and I did so by directing them to this site.  Now you alone have a content count of 5,133, with 198 "days won".  You must personally have the hundreds of followers I am trying to reach out to all at once.  I have subscribed to many "alternative health" newsletters for over 40 years and I can tell you that I have seen hundreds of REAL CURES for many ailments be completely suppressed by the "mainstream".  Do you know that the real, proven  cause of and cure for "ulcers" was suppressed for over 30 years?  To say that it would be impossible for me to reach at least 100 people all at once  who might try what I could suggest on this site is simply to say that you don't really believe that there could be a possible cure for at least a few people.  I am trying to reach many people from all over the world who can't or wont try the main "busting" method proposed on this site for fear of being arrested.  I will not post what I can with only 3 or 4 people having viewed this thread and then see it removed  for whatever reason.  What say you now? 

    1. CHfather


      My profile page shows that I have 16 "followers." Of those, there are exactly two who are currently active at this board. I would say that there are not more than a total of 50 people who are active at this board; in fact, I would put that number at closer to 30.  Most people come, get what they need, and leave.  Most people who are here are looking for specific things and aren't particularly interested in other threads.  There is no way to start any kind of "movement" here except, in essence, one person at a time. When Batch first announced the D3 regimen (not here, but at clusteheadaches.com), most people scoffed at it. He had real credibility, though, because he had been a helpful member at clusteheadaches.com for many years. Some people tried it and told others that it seemed to help, and the data have accumulated over many years to make it into a fundamental recommendation for anyone with CH.  I have no idea what you expect other than that kind of slow, one-at-a-time process. You're not the first person to come here with a proposed cure (I could list seven of them off the top of my head), and those have turned out not to work, except (maybe) for the person who announced them, but often even the person who announced a cure later acknowledged that it hadn't kept working.  I can't really help you directly in any event because, as virtually everyone at this site knows, I don't have CH, so I can't be a test patient for your method. If it works for others, I can mention it, but that's it. For now, because I really don't understand your position, I have nothing else to say. 

  13. Dallas, A cure truly does NOT exist for anybody who would make a statement like yours that I am replying to. Comments and attitudes like yours are the reason I did not go into detail. Before I do go into detail, I need to know that there are enough people on this forum who do believe that there COULD BE a cure, that I can be assured that enough people WOULD try it to make sure it does not get suppressed if it DOES work for anybody else. I am replying specifically to you because you apparently ARE a moderator, and if I offend you, I could very likely be banned and my content removed. What I need to know from this site is that the "owners" of the site would be willing to contact me directly in some way, and prove to me that my info would get to virtually everybody who depends on this site for help with CH. Otherwise I will have to seek a forum elsewhere that would give me direct access to at least a few hundred CH sufferers all at once, so that if my theory DOES prove to be correct for even 20% of the people it reaches, it could not be suppressed. My fear is that this site has grown large enough that only a very few people will ever see my posts, because I am supposedly a "newbie", and I have no following among the many thousands of people who access this site and/or post here. What I need is for someone on this site with hundreds of followers to respond positively enough to my post that THEIR followers would respond to my post in large enough numbers to make sure that at least a few hundred people might be willing to give it a try when their insurance most likely would not cover the cost of a RX drug that is not an "FDA approved" treatment for CH. Also, they would have to BELIEVE that my theory could be true, and that there COULD be a cure. That's what it would take to get their own doctors to believe it enough that they could be given a prescription for the drug I would be suggesting. I have only posted here because my own doctor has personally seen my whole story unfold, and he truly believes it strongly enough that he said that I have to at least TRY to get the info out over the internet. What would you say if I told you that what cured ME cost less than $100 at full retail for the drug, and would have cost me $45 under my Medicare supplement policy, but only cost me about $15 using "pharmacy" coupons from GoodRX? One last thing - I really do not know my way around this forum and so far have only been able to view a very few responses to my post. I am asking for your help on how to navigate the forum and my own thread. I have asked for email notices of responses to my post, but so far I can only view them individually from my email. I can't figure out how to view the entire thread that I started with my original post.
  14. I thought when I posted my story today that it WAS public, where anybody could see it.  Now I see this message to make a "public" posting, that anybody can see.  I ask the "board owners", what does it take to make my original posting "public"?

    1. DragonKiller


      Thank you "Brain".  I assume that you are a Moderator for the Forum, and a CH victim.  For now I will just say that I spent 16 years BELIEVING that there WAS a specific CAUSE, (and I suspected what it was), and if so there COULD be a CURE.  If I hadn't BELIEVED, I would never have KNOWN that my theory for all those years was right, at least for MY case.  I would never have KNOWN within 4 hours of what happened that night that my CH would not be coming back.  But I did have to wait long enough to post my story that at least SOME PEOPLE would realize that a nearly 2 year period of "remission" was not just a remission.  I would like to hear from anybody who is still on this forum who has had a 2 year or more "remission".  I would just simply like to ask if any of them had their CH come back after that amount of time.  If any say yes, then I will be surprised.  If there any who say NO, then I would like to investigate THEIR story to see if it has any similarity to mine.  I spent most of my "remission" time trying to figure out how to get past all the skeptics, and all of those who might have something to lose (MONEY) if a cure WAS possible.  I still have not figured out how to do what I have always wanted to do.  So right now I am asking for help, on this forum, to do what is right without having it suppressed.  Any help or suggestions would be appreciated.  I am not saying with my story that I know the cause and cure for all CH sufferers.  There could be multiple causes.  Mine COULD be a total "fluke" (no pun intended).  All I know is that I have spent several thousand dollars over the years for "treatment", as I am sure almost all of you out there have.  If my case is not a fluke, it will be laughed at and ridiculed by the medical establishment.  Even most of the people who have responded to my post would have a hard time believing that it was so simple.

  15. What if someone really found the cause of and a cure for cluster headaches? What would happen? How would they get the word out? Might they be suppressed? So often the answer to these questions just comes down to the money involved in treating, rather than CURING many debilitating "diseases". I have no idea how much money has gone into CH research, but I do know the COST of treatment. About 18 years ago, I began suffering from intense headaches around my left eye, which were first diagnosed as sinus headaches and treated with typical antibiotics, to no avail. Then it was diagnosed as something like "sphenopalatine neuralgia". The first treatment they gave me for that was an epilepsy drug called Neurontin. But they didn't tell me that this drug might permanently wipe out much of my long term memory and also most of my short term memory. After 7 days on this drug I began having great difficulty putting a sentence together. I would start to speak what I was thinking and after several words, the next word just would not come into my mind so I could speak it. It was almost as if I had had a stroke, and had lost my memory of many of the words I knew all of my life. It was almost a full year before I was able to "re-learn" many of the words I had been using my whole life, to a point that I could again carry on an intelligent conversation. Much of my long term memory is now gone forever. I used to know all of the words to hundreds of songs that I grew up with in the 60's, and now no matter how many times I hear them again, I can't sing along with them without having the lyrics displayed on YouTube. This is part of the "cost" of treatment that I referred to earlier. I immediately trashed the rest of the very expensive bottle of about 300 pills they had put me on.. So now, without further boring my audience, I will get to the reason why I chose the name DragonKiller. I have gone through so many large (H) bottles of oxygen that I can't count them. I own my own O2 bottles for welding, and I also went through 2 Oxygen regulators for those bottles over the years. I can now offer a large Oxygen bottle for sale along with the regulator to anybody in need of it. I think that to purchase the bottle today from a welding gas supply company would cost around $400. By the way, these are the very same ALL GREEN large Oxygen bottles that I have seen being delivered to the "basement" of hospitals, by the very same company that I had refill my bottle whenever it ran empty. They hook them up to manifolds in the basement of the hospital, where they then pipe Oxygen to all the places in the hospital where they might need it. So if anybody is interested, it is for sale very reasonably. It costs around $30 to fill it, and it is currently full, but I no longer need it. For over 16 years I have had what started as episodic headaches, and within 4 years became chronic headaches. For the last ten years I had as many as 4 separate headaches per night, each lasting for 45 minutes to one hour. I survived each one by breathing nothing but pure oxygen for the duration of the headache. As soon as I felt a CH coming on, before the pain got really bad, I would go to my "treatment area" and "hook up" to my O2. This did not STOP the headache, but it kept the pain to a level no greater than it was at the time I started the oxygen. As of today, I have not had a single headache for 1 year, 8 months and about 20 days. Through a very interesting series of events, my headaches were completely cured in one night. Something strange happened that one night, and when I woke up that next morning I absolutely KNEW that I had finally Killed the Dragon. My headaches were CURED, and I now knew that my long time theory about the cause was correct, at least for me. So what now? How would I be able to get this theory proven by "medically accepted" testing and trials. I am not a doctor, so what do I do? When I told my Neurologist who had been treating me for the last 4 years what had happened, and what I thought might be the cause, he just said; "Oh that's impossible." "We know exactly what causes them. It is some kind of irritation of the nerve that comes out of the back of the head and runs to the face, and there are all kinds of treatments for it, but there is no cure." That was nearly one and a half years ago, and he has now retired, taking the knowledge of a possible cure with him into his retirement, without ever having offered any of his other CH patients the opportunity to try what I had given him. So what to do? Can anybody out there help me? What happens if there IS a cure? All the research money goes away. Many thousands of people might be able to lead normal lives again, but many doctors and researchers and drug companies, and maybe even this website would no longer be making money off of this horrible malady called CLUSTER HEADACHE, and also appropriately known as THE BEAST. I called it "The Dragon". And I finally drove the spear through its heart and killed it.
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