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Hosie posted a topic in General BoardDoes anyone have a strong support group for Cluster Headaches? I've been trying to see if people are willing to start some type of support group. Maybe via zoom, or Skype call. I know that people that suffer from cluster headaches fall into isolation and it's hard to find other C/H patients. I would like to try and start a weekly zoom call if enough people are willing and discuss things like. Treatments Dealing with pain Depression Anxiety Loss of job Disability Dealing with family and friends Anything related to Cluster Headaches Does anyone know of a call existing already?
What if there WAS a CURE?
DragonKiller posted a topic in General BoardWhat 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.
Dylan the potato posted a topic in General BoardI've been thinking a lot about the psychological toll CH can have on someone. Even before CH suicidal thoughts always seemed to follow me wherever i go. I always had my doubts in myself. I've always had doubts i was strong enough to be able to keep going. I had trouble coming to terms with having CH and that it even existed. The pain was always a reminder that this is real. That i have this. That too many people have this. I'm still pretty new but I'm not quite as helpless as i was before i first joined I've been finding my way. I don't have much in the way of super helpful advice for anyone or even much to say that's very noteworthy as i haven't quite gotten the hang of all this yet. Still at the very least i want to say to everyone who's new to this or that is struggling in general please hang in there. Stay strong and don't give up. We have to take this all one day at a time and keep pushing forward. You are not alone. Don't doubt yourself or your resolve. You ARE strong. I see so much unity in this community and so many people helping each other out whether it be with advice straight up emotional support or both. This is an awful thing to have but its brought many of us together. That is something and whenever i feel i have no one who understands i like to read what people are up to here. For everyone out there,you are an ox...a strong,resilient,antique breaking ox.
Question about shadows?
Brianh posted a topic in General BoardI am curious as anyone experiences shadows on the opposite side of their head from the side they get attacks on? I seem to experience shadows on the left side of my head and behind my eye during my cycle more than on the right side in which my attacks occur. Is this normal or something others experience?
Question about cluster cycles?
Brianh posted a topic in General BoardHi my name is Brian and I am new here and have a quick question! I am 28 I have been having cluster headaches since my early 20s and as you all know the pain is unreal. My question though is about the nature of my cycles as I seem to have 2-4 cycles a year lasting only from a single day or two up to 10 days (longest it’s ever been). Is this abnormal as everything I read about cluster headaches suggests cycles are much longer than just a few days, I have all the normal symptoms of the headaches, the triggers associated with the headaches as well but my cycles don’t seem to fall at the exact same time each year maybe once a season or so. If anyone else could shed some light on whether very short cycles are common? also my average cycle is about 5-7 days
cluster Finally! I have found way out!
kokoreli posted a topic in General BoardFinally! I have found way out! The medicine which helped! No more Cluster pain! I overcame the season which lasted for one year just in three pains! Sounds like a miracle but it is true. The cluster pains started in 2000. You know how it is. I have tried everything! The course of Prednisolone has damaged my health. Here in Post Soviet country lithium is also popular, I tried this too. Lithium just ruined my health, it limited my movements, I was handicapped and needed crutches, but the pain did not go away. Of course everyone knows the course of Verapamile, which I don’t even know why was invented . In any case for me it did nothing. I have tried breathing oxygen , it did not work. I have tried Sumatriptane and many others but nothing worked. I have given up and decided that this how I will live all my life. But then I heard about one medicine which is prepared only with natural ingredients. Of course I was skeptical at first, but I always try anything that can ease the pain! This are the nasal drops. A friend of mine recommended. I tried it and in one minute the pain was gone. I thought it was a coincidence that the pain was a false alarm. In two days pain came back. I again used 3 drops and in one minute the pain was gone again. I still could not believe. I have tried everything and have become very skeptical. I had to use it third time and it worked again. It’s been more than 2 years now without a pain! I gave this medicine to a friend who also suffers with cluster pains. He had to use it 5 times within a month, and he has not had the pain in seven months. There is a “Cluster Pain Center” in my country, which I am a member of, I know all other registered members who suffer from these pains. I was curious if this medicine really worked or it was a coincidence. I contacted all patients (there are 35 of us in the city). Only 27 replied. I offered all of them this medicine, 18 showed the interest. 12 people out of these 18 used the medicine and in all 12 cases it was successful. In my city there are 14 people including me and my friend who have overcome this pain. It is very simple – you need to use 3-4 drops on the side where you have pain, and the pain goes away in 1 or 2 minutes. I know what a wonderful feeling it is so I wanted to share. I have been on this Facebook Page for 5 years and now I can do something useful!!! I have bought this medicine in certain quantities (just to have some stash, I feel more confident this way). I have an offer – write me in private inbox and I will share it with as many people as possible, free of charge!!!. Try it and you will know that there is a relief. I just want everyone to know that there is a way out! Write me an address in the private inbox and I will send some from my stock, if it will help you as well as 14 people that I know, then there is a cure!!!!! So write me and I will send the medicine to as many people as I can just to try it out. Unfortunately, can’t promise more. I don’t have too much of it myself. I don’t need money – just try! It is made of natural herbs based on spirit. Try, you are not losing anything! If it works you will know there is a cure Email me: firstname.lastname@example.org
A Way Out posted a topic in General BoardHi 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!