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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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You're keeping this cure a secret, or are you going to tell us what it is?  I can guarantee you that you will be met with great skepticism, but the only way to test it beyond yourself is to describe it and see if anyone tries it with the same success you had.  

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Congratulations on your long "REMISSION"!!  

But, I have to agree with Chf and BOF....there is no "CURE" for ch to date and your post is highly suspect by saying you're cured and then not elaborating.....but then again, it would be hard for you to elaborate since a "cure" doesn't exist!!

DD

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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.

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D'K,

What you are saying is not sensible. There is no one person here who has some kind of huge following that could produce the results you say you want. You post what you have learned, one person at a time tries it (or doesn't), they report on the results, and that either inspires others or doesn't. Why would you not want to help just one person, if that's all you reached?  And very few people here have the clout with a doctor to get an off-brand prescription.  

This site was created because one person tried an alternative treatment that probably 95% of people with CH ridiculed and/or attacked.  He put it out there, and some other people tried it, and it worked for them as it had for him. They really did have to "BELIEVE," to use your word, because it involved obtaining and consuming illegal, hallucinogenic substances.  Whatever you have to offer has much better odds of being tried and adopted than that did, if it works.  So, I say with no real disrespect, you either have to put up or shut up. That's how it works here.  I doubt that anyone is going to beg you.

 

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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.  

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Sounds like one of those "I'll only tell ya if you beg, plead and recognize me." type posts. I've seen many through the years.

I know that if one of the many people I know with CH were to somehow stumble on to a real cure for this crap we have, they would be shouting it from the treetops. No one that lives with this shit would withhold information that could bring relief to others that suffer.

The desire for personal gain causing a closed mind??? Here???? Seriously????? The fact the you even suggest such a thing shows how off target your sales pitch is. This place is a direct result of Bob's quest to help others. Because of that, many others here have spent far more than they'd care to admit trying to educate people on options, advocate for our collective and  lending a helping hand when needed. To suggest a profit motive here of all places is beyond asinine....at best.

I'd better stop here before I earn a posting vacation for my non-PC, obscenity laced tirade kicks in to high gear.

 

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On 12/7/2019 at 8:25 PM, DragonKiller said:

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.  

Dude, if you really want to help everybody here just tell us. If you do want to help everybody in this site then say something. 

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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.

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Four hours of typing to say nothing.  The parasite theory has been floated before and not well received for obvious reasoms not the least of which it is provable by “modern science”.  Being withholding and secretive is the stuff of attention seeking and manipulators.  Folks with quality information are generous and forethcoming.  Batch set the standard for this and many others have done so to a lesser degree .  I am happy you have resolved you CH issue but it seems you have other things to work on.

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Mate for God sakes, there are people on here asking real questions and are needing info but there posts aren’t getting attention because ur taking up everyone’s attention, out with it or stop trolling 

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In a different post I've seen you cut up a 10mg Rizatriptan. I have looked at the side effects from that, and as for me it sure looks like a drug most people would like to stay away from.

strictly for Migraines. as CHF has mentioned.

buck says we scared you away for good. hope I'm wrong and you can give someone something worth while to ponder. will see.

if it worked for you chances are it may work for others.

Merry Christmas.

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Attacking and demanding attention is not a good way to post. You want input from those who are here a lot, you have had it! 

State your case and stop whining already. We are open to anything that helps with this hell. And yes, some, including me, have had 10 year remissions only to find that the beast just laid in wait and GREW over that time.

I wish you the best and hope that you never get another parasite. Understand that many here have had sinus surgeries and our sinuses reamed out prior to diagnosis. We have had teeth pulled and given up favorite foods looking for relief. We, as a group have done a lot of things suggested by the medical field before getting a proper diagnosis. We, as a group, have helped many people get to pain free status. We began with ONE man! Coming in and carrying on like this is not the way to get anyone to give notice or credit for anything, much less a CURE! 

You are being very arrogant! Not to mention demanding! Not to mention your mistaken belief that you could get the funding for any 'trial' of your cure. Lots of luck with that one and let us know when you have a trial going. We keep abreast of ALL trials for anything to kill the beast.

Over and out.

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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"

 

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Personally I never want to discourage the free exchange of information and ideas because you never know when the next "Flash moment" will appear.  We are all aware that when folks get desperate they are vulnerable to any idea or snake oil salesperson.  Evidence of this includes offering unsubstantiated surgical procedures at great cost and risk which people consider and actually agree to.  In this particular situation I suspicion there may be a mental health issue in play.  Whether the initial poster is attention seeking, manipulative or well intentioned their verbose   nonsensical communication style speaks to a lost soul.  Now that the story is out each person can judge it for themselves, take pity and move on.

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DK,

I've been keeping up with the thread, wondering if it was going anywhere.  As others have pointed out.  Someone comes to the board every few weeks announcing a cure.  There is no cure.  Only remission.  I myself have gone 2 years without an attack, then back to episodic then to chronic.  Others 10 years or more and it comes back.  I manage my beast with the natural medicines primarily discussed on this board. 

That said.  I like to follow Bob's lead and let people speak freely without fear of repercussions.  MM was once thought of as being a quack management technique.  It is now, thanks to Bob and others like him, in my opinion one of the best treatments out there along with Oxygen.  

If you feel cured, then I'm happy for you.  I'd recommend not claiming a cure though.  Those of us that have been around are sorta tired of people claiming a cure, yet they're clearly simply in remission.  I thought verapamil was a cure many years ago.  The first time my doctor prescribed it for me, my CH disappeared a few weeks later.  I was over the top happy that I finally found something that worked.  The next year my CH came back and I went to the doc for another script of verapamil.  It didn't do anything.  Absolutely nothing accept give me tachycardia.  (A dangerously slow heart beat).  I realized thinking back.  The first year was about 2 months into my cycle.  At the time my cycles ran 2 to 3 months.  I realized then, that my cycle had simply stopped on it's on, and had absolutely nothing to do with the verapamil other than coincidence.  I've read about others having similar experiences with Kudsu, chriopractic care, hot baths, hotsauce up the nose, having the facial nerves cut, Adkins diet, vegetarian diet, etc etc. and the list goes on.  They were not cures, just chance coincidence, or at best something that provided a small bit of help (which we all need at one point or another).  What works for one person, may or may not provide help for another.  

It's great you're in remission, but people will not take you seriously by claiming a cure.  You're in remission, that's great and happy for you.

Cheers,

J

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I tend to think there is a cure. It's not going to be discovered soon, or easily. But one day someone will figure it out. Just not some random dude who blew his nose though.

The fact that finding something in his nose cured him (assuming he is cured) makes me suspect he didn't have clusters to begin with, because I'm pretty sure there isn't a parasite in my nose.

What frustrated me about this post, and the others claiming cures, is the bating and dancing around the subject. Either it works, or it doesn't. And if it does, just say and let people try it. 

Mox

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