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Showing content with the highest reputation on 12/12/2017 in all areas

  1. You did great Jeff. No sweat. Everyone has a life beyond the forum at this time of year I think. Yes, killed the 'dark web' jerk Jon. But the cascade of events following that could not be helped. Jeff donates his time and energy to keep the board up and running. Software is not always logical. That Is why I just ban and contact Jeff!! I am very sorry for the fallout. Also very glad that we have Jeff on board to keep this thing up and running!!!
    3 points
  2. Seems nice that someone is studying this. Molecular Analysis of Cluster Headache; Zarrilli F, Tomaiuolo R, Ceglia C, Lombardo B, Izzo B, Castaldo G, Pastore L, Simone R; Clinical Journal of Pain (Jan 2014) OBJECTIVES: Cluster headache (CH) is characterized by severe, recurrent, unilateral attacks of extreme intensity and brief duration. Variants in a myriad of genes were studied in sporadic CH patients, often with conflicting results. METHODS: We studied gene mutations in some candidate genes, i.e., hypocretin-receptor 2, Clock and alcohol-dehydrogenase (ADH) 4 in 54 unrelated sporadic CH subjects and in 200 controls and, for the first time, in 8 kindreds/families that included more affected and non-affected cases. Furthermore, we performed the whole genome scanning by comparative genomic hybridization (CGH), searching for rearrangements associated to DNA gain or loss in a subset of sporadic and familial CH and control subjects. RESULTS: The analysis of candidate genes revealed that only allele and genotype frequency of the two ADH4 mutations resulted significantly between sporadic CH and controls; the same mutations were homozygous in CH patients from two families. The CGH analysis revealed two novel rearrangements that involved the intron regions of thyrotropin-releasing hormone degrading enzyme and neurexin (NRXN) 3 genes, respectively. The first one was present either in CH and in control subjects; the second was specifically found in some sporadic and familial CH cases. CONCLUSIONS: our data (although obtained on a small number of cases) confirm the genetic heterogeneity of CH suggesting that mutations in the ADH4 gene and a novel rearrangement involving neurexin 3 gene might be related to CH in a subset of cases. http://www.docguide.com/molecular-analysis-cluster-headache?tsid=5
    1 point
  3. Hi, 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.
    1 point
  4. I learned how to manage the beast more even tho I used O2 before I still learned little things like when to use it . 2015 I learned that I needed a better regulator that went over 15 lpm I need closer to 25 lpm to help. Both times I learned that CH are not the exact same for every person and that being chronic its harder to bust or treat !!!! Also how to help other peeps understand what we go thru and that we are not crazy LOL .
    1 point
  5. Stuff happens....No biggie.
    1 point
  6. It’s understnadable. This freezing Florida temperature has everyone off kilter. I assume this was in response to the “use dark web” guy ?
    1 point
  7. Thanks for the fix, I need my fix of CB Forums
    1 point
  8. There are no complaints here. You guys have been and are doing a fantastic job. Happy Holidays.
    1 point
  9. We are all human no worries that was a headache I could deal with!
    1 point
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