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Searching for more research information
Sloankat posted a topic in Research & Scientific NewsGood evening, I am searching for something that may not exist. I cannot find any good, (by good I really mean, "Official looking") articles supporting existence of current legitimate research studies going on or results of previous studies definitively supporting the use of psilocybin for the treatment of cluster headaches. Shortest version of my story - through the miracle of the internet I discovered mushrooms as a potential treatment of cluster headache in the early 2000's. I was scared to try for some time. My husband encouraged me, having done every type of recreational drug many times in his youth before we were together - he was not hesitant. He procured the mushrooms for me from someone he new. I finally tried it. I did a tiny dose and had almost zero "symptoms" (just a little easier to grin and laugh) and he did a normal dose with me because he "just wanted to". Anyway, this changed my life. It has ALWAYS worked for me! I'm episodic. I busted after onset of symptoms a few times, then preventatively, microdosed, once a year for a few years. Then only as needed as my remission, I realized, was for years. My latest remission has gone on for about 6 or 7 years I think (estimating - I should keep better records). Fast forward: Now in the middle of an extremely high conflict divorce. Husband is now accusing me of being a "drug abuser" because of my occasional micro-dosing for treatment of CH. I really need something presentable in court as potential evidence/support of my use of the mushroom microdoses. If anyone has a recommended link, I'd be SO appreciative. Thanks in advance!
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.
Cluster Headache - Patient Driven Research
registrateyourjourney posted a topic in General BoardWhy not do our own research, collect data, analyze it and find our own trends about best treatments. I've setup a "Cluster Headache - Patient Driven Research" group on Facebook and I've build an simple app to keep track of any attack and any treatment we do. It doesn't matter if you use medicines, vitamins, Oxygen or Magic Mushrooms. https://www.facebook.com/groups/471529509915015/ My idea is this: If 2 Patients with data about their disease progression would share this with each other, together they would know more. If a 100.000 patients have their data and share it together, they could change Healthcare. I've set this up as Cluster Headache Patient hoping we can setup our own initiative to find proof of best treatments, support others and ourselves in a more active way. Feel free to read also the website nobism.com to get more information on how we want to start.
Patient driven research
registrateyourjourney posted a topic in General BoardHi, everybody, I'm a Dutch cluster headache Patient on a mission so see if we can do our own research about our cluster Headaches and I hope to get an American group joined as well. Being a Patient, makes that we can't do any scientific research, I'm fully aware off that. Problem with scientific research is that it doesn't move into our direction because our voices are not strong enough and our experiences have not enough value. But I think we already have some treatments that could have potential. The most known are the Vitamin D regimen of Batch and the use of Magic Mushrooms, LSD etc. What we can do is collect data and look at it ourselves. The outcome can only be called a trend, but will show the road for solutions. But to know what is working, we first should know our differences and similarities Goals: Phase 1: We would like to generate a list of all our symptoms, to get more insight in our differences, attack patterns and relation to other symptoms. We would like to generate a List of all treatments we do, regular and alternatives. Phase 2: We would like to see if we can find groups in symptom or treatment combinations. We would like to see in what group we can find more symptoms dropping or rising, an indicator that we are doing well or that we are having a bad time. Phase 3: See if we extract trend about the best treatments offered. How to do this: I've build a smart patient diary that can be used and setup unique by anyone of us. It uses buttons to keep track of what you think is important to feel better. The buttons are stored in a library and can be added to the app by downloading them. As cluster-heads this means we all have the button "Cluster Headaches". Most will also have "Oxygen" I personal also use the Magic Mushrooms, I have a neck-pain caused by the attacks and I keep track of my Coffee, Thea and Water consumption, just because I think it could be related. This way we can all tell our individual story. Every registration made is added as a timestamp to the history and Timeline of the app, so we are going to see the relation between individual items. Data analytics: I have a Spanish data Specialist (I'm Dutch but living in Spain) that is willing to analyze the data to see what trends we can filter out. ONE year: What I ask is a lot and my experiences until now tell me its going to be difficult. I'm looking for at least 50 American Cluster-heads that are will to keep the diary for one year. Within this year we will have various point that we can use to collect the data and extract the results. We will use the result to show the world what we are doing, hoping to generate interest and more patients joining us. If your not living in the United States, just let me know if you want to join and maybe we can find more patients from your country What kind of patient are we looking for: We are looking for active patients, that want to change our healthcare and work together to find solutions. Patients that understand that our experiences are nice, but that know our data could change our position and help; us find solutions. More information about the project can be found on: https://nobism.com Demo: if you would like to try the demo app we've build to do the work, please send me and message Whitepaper: If you want info about data security, who owns what and more detailed info on how I think we could change the world, please feel free to request my whitepaper This is a 100% patient driven project from a patient who is really tired of all the pain. I hope you will help me push the car finding solutions supported by our own data.
CGRP antibody therapy research trial
MeganCTSC posted a topic in Research & Scientific NewsDr. David Stickler in Charleston, SC is currently enrolling a clinical research study that is testing an experimental treatment for cluster headaches. This investigational product is believed to reduce the frequency, and the possibly the severity, of cluster headache attacks. The product is provided at no out of pocket cost to the patient and without going through a patients insurance provider. They are currently looking for those cluster headache sufferers 18 to 65 with a history of episodic cluster headaches lasting greater than six weeks. Patients can be in an active cluster period or in remission at the time of screening. For anyone that suffers from Cluster Headaches, that is interested to get more information, they have a website www.clinicaltrialssc.com or an phone number dedicated to research trials 843-789-3707
Interviews, On or Off the Record
memememe posted a topic in Research & Scientific NewsHi, busters. I'm a cluster headache sufferer who is also a journalist, and I am writing a story about cluster headaches and potential cures. I was hoping to speak to some of you about your success/frustrations with busting CHs. It can be either on or off the record. I'd love to hear from some women, too! From what I understand, the condition is much rarer in women. My contact information is available here. Please shoot me an email if you'd like to talk.