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registrateyourjourney

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Everything posted by registrateyourjourney

  1. Hi Chh, I don't think so. I do also feel very week after 1,2,3 or half a year nights awake. But we have to go on so I push myself to go one and try to change my mindset. I try to stop thinking if I have an attack, pressing my pause button in my head. If the attack is over I press "Play" and go on. But thats not a solution and I hope you will find a way to handle it.
  2. Hi Pixie-Elf, Thats no problem. I find that some people love to know how they've been doing exactly last week, month or the year ago compared by now. But I also meet people that go like: Tracking? Tracking? I want to forget as soon as possible. So no problem, everybody needs to do what they think is right. I do have to say that the app I made is made because of the reason you say. Most apps are a "jack of shit" because it takes to much effort to register one item, are limited in what you can register and often we can't even get a good view on the amount of attack, moments of it or intensity because its all stuffed away in agendas. Mine is just pressing a button to register an attack. But the same for medicine, therapy or even Mastrubation hahaha Basically anything a person finds important to remember can be registered by pushing a button, so even with other diseases you could use the app. Now, a MS patient that is Diabetic and has Migraines, should download 3 apps, one for every disease. I started tracking my attacks, medicine (imigran), MM use, Vitamin D and the coffee I drink. So I started the app with around 15 buttons (these and the therapies I did) Now we have around 250 different buttons all requested by other patients. (Cluster, Migraine, MS, Diabetics) So people do a lot of different things to feel better. Knowing that there is no straight solution, I think a small solution can be lowering attack frequency or intensity. If you get it lower with one solution, you can try another to see if you can get it a bit down again. I can only do this having a clear view on what I did and how I was in the past.
  3. The Button "Mastrubation" is already added. I told you last time I Do have somebody using it and he claims it does something for him... Perfect isn't it? So back to the question, is this to be caught in one button, like Pixie-Elf said, "Sinus Buster" ?
  4. Ok, nice, more reactions than I expected. I do like spicy food, I even put chili on my cheese sandwich, so the spicy part will normally not be any problem, but in my nose... well an attack is worse. I will add it as a button to the app so we can use it to register. How shall I call the button? Chili , Pepper, Sinus buster?
  5. This is one of the reasons I started with the app. Every patients has to do a lot of experimenting and spending money, before they find any relief. Thats our Journey. By knowing the Journey others had, we could avoid taking the road to Moscow if we want to go to Rome But I would love to hear if there are people with positive reactions.
  6. I just got a story from my ant about putting Hot Sauce in the nose to break off a cluster attack. Did anybody ever try this? https://nutritionfacts.org/video/hot-sauce-in-the-nose-for-cluster-headaches/
  7. I had the same with Imigran injections. Since I have stopped these injections, my attacks are less severe. Quitting them was a real hell for me but I did it and now I only bust with MM, use oxygen at 15l/minute with good mask and go out to get some sun as much as I can. I hope you will find a solutions my friend.
  8. Wow what a complex story Pixie-elf. Hope you will find solutions that will make you feel better but I suppose finally walking in the sun will give a lot of positive feedback and energy. Do you use the app I've made to keep track of symptoms and what you do top feel better?
  9. What I would like is that we advice the app to all the people on clusterbusters, so it will be the standard to collect data of headache patients.
  10. Hi URS, No I don't have any paperwork yet, concept seems clear as far as I see it but any questions are more than welcome. But the idea is very simple. If every patient would register their attacks and symptoms and all they do to feel better, we could get a clear view what patients do just by looking at the registrations/timeline. If symptoms registration drops in intensity or the amount of attacks go down, after starting a treatment, we could have a direction that this treatment is working. If we see the same pattern by others, we get more proof that the direction is good. If some don't respond like the others, maybe we could see difference in their timeline compared to the ones that do report effectiveness. But my idea is only to collect these data in a very simple way. I do have the head of operations EMEA of SAP in my team now and a Dutch IT company that is very happy to help us build the platform so we could start collecting data and help us making a better timeline. So the only problem now are patients to help collect data. I have already around a 300 downloads of the app, but no idea how many are using it right now because I don't want to collect data without any security. But now I have a new partner, we can start doing that. Most important point in all is our privacy. So I understand that data sharing could proof to be a difficult point. But every person has to decide by them selves if they want to share. If it come available in the app I will build in a very clear switch to switch sharing on or off. So please join the team, give me advice and ideas and lets start to collect data to help specialists finding a cure for us.
  11. My name is Rogier Koning and I hope to be able to contribute finding a cure for our cluster headaches. In my idea we already have many solutions, but they don't always seem to work.
    By keeping track of our attacks (symptoms), medicine use and all we do to feel better like the use of MM, Vit D, LSD or other things, we could maybe see why it works for one but not for others.

    So I made an app (tool) to register our attacks, medicine use and all we think is relevant, just by clicking a button. This way we collect very detailed time based data. 
    All data gets displayed on a timeline for better understanding of our attacks and what we do to feel better.
    Now I'm starting to setup a platform to connect the patients and share their data hoping we can find patterns in our attacks and see what people do different to feel better. In a later stage I would like to open the platform to specialists and research to use our detailed data to look for answers.

    This is a patient-driven initiative, like clusterbusters. I do hope we could join forces because I think it should be a waste to work separately meaning probably that finding a good cure will take more time.

    So I do hope the Clusterbusters will respond to my ideas, because until now it seems like I'm unwanted and ignored, or at least this is how I feel right now. 

    I know that the wonderful people of ClusterBusters already brought us a lot of good and that they've done a lot of work setting up and maintaining ClusterBusters.org  and I do not need any credits, I just want to get rid of my attacks for good!!

     

  12. We are working hard to get our app used in a trail of Dutch headache patients in general (migraine, cluster, tension etc) to see if Time-based data can give us more understanding. I'm building a team at the moment to start building a platform so we can share and compare our data with other patients or specialists. And I think I've found a company that builds and supports software. They are very interested in helping us setting up the platform and security. I do hope clusterbusters will join the group as well, we could collect so much interesting data together !
  13. Just look for register your journey in the app stores for iOS or Android. Please let me know what you think of it. Timeline isn´t perfect yet but hoping to find some help soon to get it better. But it does give already a nice view on attacks. And its easy to use I think. And if you need other buttons, just let me know and I´ll add them.
  14. Hi, I hope some people are following my development. Like explained in other threads, we are trying to build an online platform to connect patients, specialist and research using time based data collected by the patients to find better solutions and treatments. To collect the data we have build an app that can be used to register symptoms, medicine use or anything else you do as a patient to feel better. The vitamin D regime is one of them, MM an other. We are looking for help We are looking for a programmer to join our team. We need to make a better timeline and we need to make an option to compare our data with each other so we could better learn from other patients experiences. But thats just the beginning We need a person with knowledge of marketing, knowing how to attract more users to the app so we have more data to compare We need investors that like to bring power to the people. RegisterYourJourney is building this platform for us patients so we should have the full benefit of it instead of any multinational. That doesn't mean its illegal to earn money to support the people that help building up this project Security is a very important issue and we can use all the help possible. All we do will go using the "Slicing Pie" system to work together so everybody will have a fair share of the pie. Just send me an email or add a message
  15. Last week I've been to the netherlands to speak to all the specialists I've met during the last travels and other people that are interesting to join our team. The idea was to see if our app would have a change of getting funding. The specialists I've spoke were very positive, they all saw the potential if we would collect all data about our cluster attacks, medicine use and especially what more we do to feel better. They did understand the idea that there are more solutions than only taking medicines and also feel that knowing more about that could shine some new lights on cluster headaches. But, they didn't get my setup because its is out of their view. Lots of specialists like an idea when it connects to their speciality, so a migraine app for one, a diabetic app for an other. But a general registration tool to know all a patient does is out of their scope. So I'm a bit confused now. A perfect commercial fit for the app would be to help patient research. But patient research led by researchers often limit a lot because they are used putting up borders. The idea of the app is that it should not have border to get the full scope of what a patient does to feel better. Because I want this to be a patient driven initiative I should go on the way I'm doing, hoping to find somebody who understands the impact of the idea and is willing to spend money on it.
  16. Hope you get better soon and that the beast will go and stay away.
  17. Tomorrow I'll be off to the Netherlands. My last trip to the eHealth week in january in the Netherlands and my trip to Barcelona (spain) to the Mobile World congress gave me enough contacts now to setup a professional team. So I've made appointments with IT, Marketing and financial companies and some specialists. The goal is to setup a team to build the app and a Platform to compare data, this way we can compare our collected data with data of others, maybe finding out why one patient responds to a treatment and the other doesn't. Also to collect data and show the world what kind of treatments we clusterheads use that seem to be working good. Maybe this way research will pick it up faster and validate these treatments. I hope you like my efforts, any questions ?
  18. Good luck Good luck good luck. It doesn't always work in 3 dosis, my first time I only needed 1 and later I had to take 6 times the dosis. So it depends a little bit. But there are a lot of people here that can help you out how to dose, what to use and more. But try to keep record of your attacks, medicine use, MM and all other thing you to to feel better by using the app I've made for us. You can download it for free and use it to create a timeline that gives you a good view on how you have been doing.
  19. No comments but nice to hear you are doing better now. Perfect, Just keep up the good spirit.
  20. What a crazy ride was that last week. Barcelona full of suits, prices for hotels sky high and me walking around with my sign asking for funding to take our app to the next level. But I had a lot of contacts last week and could finally go into the congress for free because someone still had a entry-code to get a ticket. They also put me on the stage to do a pitch in front of the CEO of Beyer.... But no money yet to develop the app and platform to inform our specialists or share our data with research, but I did collect a lot of contacts from big companies that really liked the idea. So most of them I can inform once I have my plans for setting it all up finished. What I will do now is start to form a team because before I can get funding, there needs to be a team. If there is any bright person here that thinks he/she can help, don't hesitate to send me an email.
  21. I'm off to the Mobile World Congress in Barcelona to try to find funding for the app. Problem only is that ticket cost €799,- for the cheapest ones and platinum tickets will cost €5.000,- So no entry for me. But, i've decided to solve this problem in an easy way. I've made myself a sigh I can wear on the frond an on the back of my body and I'm going to try to get attention that way. Big sign saying "Patient-driven eHealth start-up looks for €250.000" with a QR code below it leading the visitor to my pdf presentation that contains a link to a paypal payment service. All my friend think I lost something somewhere on the way but I don't care, A "NO" I have already, lets see if we can get a "YES"
  22. In my point of view triptanes made my attack heavier. Aborting them fast but general intensity level of all attacks a lot stronger. I went through hell leaving the triptans and changing to oxygen only. Goodluck Ouelmath, hope you feel better soon.
  23. Hi Kyle, Sorry to see you are here. But better here than on any other (medical) website in my point of view. My pains stop pretty fast normally. A sign for me always is that I don't wake up with an attack. I have made an app to register your attacks and all you do to feel better. A simple tool that helps you keep track of what you do with the push of a button. It could help you get a clear view on what you have done. Maybe not now but after a first year of cycle you will know your rhythm and you will see better the results of all the things you will try to get rid of the attacks. You can download it for free on android or iPhone just by looking for "Register your Journey" If you have questions you can do it here or with a PM
  24. Hi Andrew, I just want to wish you all the strength you need to go on. Try to find a positive spirit to go on. Rogier
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