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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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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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@dmlonghorn would that make it a 'pryamid cure'? Bwhaaaaa! ROFLMAO!:lol: The OP suspected knowlege of the cause for 16 years, waited... & is pain free barely over 1 year. Unimpressed by a less than 2 year remission, the OPs requirement for recognition prior to sharing the "cure" & if a book appears on Amazon for $1, I won't buy it. It won't give the name of the "cure" without purchase.

Edited by Brain on fire

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