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I've been using this app for a few years now, to track my symptoms and treatments (and Register your journey prior to that). But, recently, when I launch the app, it just synchs, and never ends the synch / launches. I emailed the developer, but, I was curious if anybody else uses it, and might be having the same issue. Aside from Nobism, I'm curious what everybody else uses for tracking everything. Just in case the app is no longer supported. Thanks in advance.

YES!!! Nice! Later came to be called Nobism. But from looking around here (https://clusterbusters.org/forums/search/?q=nobism&quick=1) and on FB (https://www.facebook.com/search/top?q=nobism), it seems to have ended.

@OliWe have a member by the name of Rogier Koning who's had a ongoing project for several years called the nobism app I think....you should be able to glean a lot of info from the responses to his threads. Registrateyourjourney is one of several threads. Dallas Denny

Curious what everybody uses for tracking their attacks (time, intensity, etc), meds (customizable with dosage), etc. I used Register Your Journey (app) for a few years, and then Nobism when it replaced RYJ. It seems Nobism no longer works. I reached out to the developer, but, got no response. Does anybody have any apps that they would recommend? I've only found Migraine tracking apps, which don't seem to work well for CH. Thanks in advance.

Correct BOF..... it's called Nobism now CJW....Rogier is a fellow clusterhead, member here, and developer of the app...he's been working on and tweaking it for several years and recently spoke about it at a large medical conference in the UK. https://nobism.com/ DD

Hi everybody, Finally, after 3 years talking about it and building an app in the last year to see if my idea worked and if my fellow patients could use it, I'm finally to the last stage now and I've called it: nobism A platform to connect patients, specialists and research using real time data collected by us patients. You can find my project on https://nobism.com and I hope you will all JOIN my project so we can start building it as well. The idea is simple. Lets work together as patients collecting REAL TIME data and share it with specialists, research or each other. We all try different things and we all have our experiences and talk about it. But that's talking a long time to get change accepted. So if we collect data, the world should start to listen faster than they do now. So please join nobism. You will get nothing off it at the moment, no app, no platform and no spam. The only thing you do by joining is tell me that you like my project and that I should go on.

A very dedicated fellow from somewhere in Europe (Belgium???) persisted with creating and testing a data-collection app, getting people to use it, and tracking the data. It's here: https://nobism.com/remind-collect-data/ In addition, some very large studies, such as the one carried out by Dr. Larry Schor and others, have surveyed people with CH and created detailed profiles of treatments and perceived efficacy. You can imagine the immense difficulty of getting reliable information from these gigantic efforts, given the many, many variables that need to be taken into account. But many blessings to those who are making the effort. Batch (xxx) has also tracked the impact of the D3 regimen with a fairly large group of people with CH.

81007 has asked have you ever been around cats? why? I have no idea, but in an earlier post I have asked for a spreadsheet, excel format we can all ask any question under the sun, with all questions and answers being unanimous. my goal is to see any and all outrageous questions may be statistically tallied. I have seen the other apps for which are not on this site and are not followed as close as all other post here. I too believe my condition was caused my head trauma many years ago. you brake a leg and incur some sort of nerve damage the problem remains in the effected area. still a firm believer there is a common cause for all. nobism site is nice for all that technical data, I'm thinking more of the outrages or common Q and A. sorry if I'm beating a dead horse. PK (post killer) cya.

Why 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.

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.