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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.
Hey all, This is my second post. I've had cluster headaches for about 20 years, but they usually only come at times of high stress. I currently think that the headaches are caused by extreme muscular tension in the neck, and I'd like to know whether or not other sufferers have similar tension? Do you have a knot in the muscles of your neck, hard as a rock, on the side that you get the cluster headaches? It might be so tense that you can't tell the difference between the muscle and bone, and even if you press on it, it doesn't really hurt. Please answer if you do, or if you don't, as either case is useful to know more. If it turns out that cluster headaches are caused by muscular tension, it means there may be a real remedy! Practice at consistent relaxation, massage, exercise, and decrease in stimulants may be enough. Thanks!
Hi All, this is my first post, but I've spent a lot of time on the site reading posts. It's a great community, thanks so much! So here's my hypothesis: I'm convinced that cluster headaches are caused by extreme muscular tension in the neck. If you eliminate the muscular tension, you eliminate the cluster headaches. Here's how we can start to test this hypothesis: I would love if each person who reads this checks themselves. My bet is that every one of you has a knotted muscle in the neck that's so tense it feels like a bone. And it's especially bad on the side where you get the headaches. Probably in the middle of the neck, between the shoulders and the skull. Here's my story: I've had very bad headaches since I was young, and started having cluster headaches when I was 19,in the summer before I started college. Twice a day, 3pm and 8pm,incapacitating pain in the eye-temple. I went to a chiropractor who popped something in my skull,and did a couple other things, and I felt blood flow into those area, and they stopped. I thought it was a one time thing. Then, after college, in the weeks after graduation, I started getting them again. Twice a day, same deal, etc. When I went back home, the old chiropractor had retired and the new guy was a quack. Fortunately, the horrible headaches went away after a few weeks, on their own. I started exercising regularly, especially my shoulders and neck, due to an injury, and I started mediating regularly. No more cluster headaches for about 10 years. But I get married and stop exercising and meditating so much. I'm about to start law school, and they come back again, lasting this time for a couple months. This is when I look the symptoms up online and discover that they are cluster headaches, and that there are other people who get them. No doubt, all the typical symptoms (ice pick in the eye and temple, flush, same times each day, watery eye and stuffed/runny nose on side of headache, etc). I'm relieved not to be alone, but also terrified that sometimes the cycle doesn't stop, it repeats indefinitely. They're going on for months, and I'm getting desperate. But I noticed that I keep getting them at times of extended stress. So I start looking at other things related to stress, and I start to meditate when they begin to come on. I can't meditate through the peak, it's just to much, but I can meditate through all the ascent. What I start to notice is that the pain isn't really coming from the eye-temple. It's coming from a hard muscular knot in my neck, on the same side as the headache. I can actually keep all the spasming-throbing right there in the neck until the peak of the headache when I lose focus and it seems almost like the spasming-throbbing in my neck is mirrored as incredible throbbing sharp pain in the eye-temple. Here's what I do: 1) get a couple deep tissue/trigger point massages. 2) Make a point to relax my neck and shoulders throughout the day. 3) Exercise the neck and shoulders at least twice a week with pullups and rowing-type exercises. 4) reduce my coffee consumption to one cup a day. 5) Also, I grind my teeth in my sleep. So I start making sure that I wear a mouthguard at night. 6) when I feel one coming on, at the very beginning, I try to actively attend to the neck tension and release it. And it seems to work, lessening the intensity after a few days and eliminating the clusters after about 10 days. I get them again when I'm studying for the bar, but now I can handle them and they only last a week or so. And I get them again last month, under pressure with fundraising for the business I'm building with a partner. But this time I start trying to relax, get a massage, reduce coffee, start exercising again, as soon as they start. Somehow they never develop into full-blown, rocking-moaning, stabbing-throbbing pain, except once. So here's my hypothesis again: cluster headaches are caused by muscular tension in the neck. If you eliminate the muscular tension, you eliminate the cluster headaches. And again, I hope you'll help me start to test this hypothesis: I would love if each person who reads this checks themselves. My bet is that every one of you has a knotted muscle in the neck that's so tense it feels like a bone. And it's especially bad on the side where you get the headaches. Excited to hear what you find!