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Everything posted by registrateyourjourney

  1. I have had very bad attacks en less attacks. Last half year of Cluster attacks I only had registrations between 4 & 7 (scale 1 to 10) I hit myself on the knee last year trying to jam a pole into the ground. I saw stars around my head, my knee was getting bigger and bigger but pain....no problem. Other times I hit my head, stars again but no pain. I don't pass out if I register an 8,9 or 10 attack. I don't crash anything, don't bang my head and I don't hurt myself more. I just try to accept, relax, and watch my breathing hoping it will go away after a while. @Dane Hope you will find a way for relieve and the money for a sometimes fix. How much would a "sometimes fix" cost?
  2. Hi Zany. I don't but I'm sad to see that you are back, meaning probably that you are not doing as good as you like. But that's the same for all of us. Rogier
  3. Hi everybody, Nice new forum, well done everybody. I suppose it was a lot of work. I've been to the Netherlands last week to visit the Dutch eHealth-week organised by the Dutch government. There were meetings everywhere around the country and all specialists were very willing to listen to new ideas. Keypoint in the whole development is to reach the patient. Everybody is building ideas from point of view of the specialist or disease, resulting in solutions for heart-rhythm problems, rheumatic, migraine solutions etc. Meaning that if you have different kind of problems or diseases, you'll end up with 2,3 different apps. Not so smart. Other problem is that solutions aren't flexible, they don't give me, as a user, the option to register all I do to feel better, knowing that we do more than visiting doctors and taking medicines. Talking to these specialists and seeing their eyes opening up after showing my idea, did gave me a very good feeling about the app and what it could mean to us. Next step now is to make a presentation and then I'll go back to the Netherlands to present it. Goal is to get funding so I can get a good team to rebuild the app, make a better timeline and a way to share our data. A small history and future As being a clusterhead myself, I've tried many things to try to feel better, to get less attacks or less intensity. Looking around I could find a solution that I could use to register my journey. Knowing that my data could help us solve our problem, I've started to build my own app, helping myself and hopefully other patient like you as well. The Final setup was so easy to use for any kind of disease, that I've decided to publish my idea online for everybody to download. In the future I hope we can setup some kind of medical database were we can store and compare our medical data. Problem is that everybody has a view on our health but we as patient don't. We have our experience and we talk a lot about them. But what if we could have knowledge about our health and all we do to feel better? Compare our data, see why others have less symptoms and others more, compare to migraine patients that are trying a lot of stuff as well or even with people that have other symptoms but some the same. For me it would be already nice If I would have a good solution to get rid off all the tension in neck and shoulders after a few weeks of attacks.Its not a solution but could be part of it. Sharing data, not my kind of thing I know some people do want to share and others don't. The US are not the Netherlands. I can show mu MM use to my doctor, here I heard stories about people being afraid being stopped by police and that they would have "registrations"of MM use on their phone. So we do live in different worlds and we need to find a solution for that. Basic thing in my setup will be that your data is yours. If you don't want to share, you don't and just keep it on your phone. If you want to compare you need to upload your data, but data should still be yours and not used by anyone until you agree to share it. I hope you all like my idea, its just my way of hoping to find a solution and better quality of life. Please argu anything with me about my idea so we can make it better for us as a patient.
  4. If you check this map you can see where patients with clusters live. All around the world it seems. https://zeemaps.com/map?group=500402
  5. And register Your Journey, your attacks, medicine use, oxigen etc to keep better track of what you have done, in what order etc. These data could help uw all in the future. I use 15 lpm and I abort an attack in about 10-15 min. But sometimes it doesn't.
  6. Hi Urs, don't understand, I suppose you respond to my message?
  7. Any extra review of my app/work would be really appreciated. I go to the Netherlands at the end of the month to the Dutch eHealth week and I'm making a presentation hoping to get info, contacts and hopefully some grants to go on with my project. But I need user feedback and some from specialists.
  8. And again it seems that having a good view on our disease will probably help us finding the way out, so please people, start registering your journey and mayby in a while we recognise patterns, a bit later the combination between food, triggers and attacks, who knows. The Big difference between A forum and Registrations: A forum is a place were we exchange our experience. A thing that, in my experience, is influenced a lot by time and things that happen. Registrations are clear points in time, no emotion involved and made when occurring. They can be viewed and compared where experiences can not. An Forum gives a story about how and what somebody is doing, all joined in one text. You need to read, remember and place it in order (in your head) A registration is clear, one thing at a time, all items separated and displayed on a timeline. The app has a lot of function already, but not enought. End of the month I will go to the Netherlands to the eHealth week to get info, contacts and hopefully a way to funding. I'm making contact with datakind.org aswell. They are a non-profit organization all about analysing medical data that people can send in. Don't know yet what it will bring but if they are positive, I'll make an option so you can send your data voluntarily to the to use for analysis. Please register your journey, its not for me, its for us.
  9. Thanks URS for your feedback. I understand your point but I don't do it for the money, I do it for myself and other people with chronic disease. Off course it would be nice to get an income out of it but I will always keep the app for free because I think Patients already have enough problems, using my app and paying for it should not be one of them. Don't know how to do it, but a lot of people do voluntary work to help others in a group. I don't see it different with my product.
  10. A happy new Year to clusterbusters members and Lets hope that 2017 will be a magnificent and symptom free year for all of us. In 2016 we have started to build our App, RegisterYourJourney. I have started this app out of personal need to get more view on my symptoms, medicine use and all I do to feel better. This View will bring me hopefully knowledge to find a way to have less problems with my symptoms; my cluster headaches. At the end of 2016 we have uploaded the first version of RegisterYourJourney, so other can also use it and register their journey. Now in 2017 I need your help I hope to get funding to go on with the App. There are still a lot of things that can be better and we have even more options waiting for us to be build, but to do that I need help. I need as many users possible giving their review about the App and the idea behind it and some screenshots showing your registrations. I hope to combine these data with my list of Specialists that have given their review and the technique that is necessary to set this system up. Hopefully with this we can upscale the idea in 2017 and make it available for even more people. Please give your review: Send an email to info@registerYourJourney.com. (You don't need to write an essay, a few lines with your most important points and a printscreen of your data would be more that enough.) Thank you very much for Your time and energy
  11. Dear Trackle, I do not live in the US but in Spain. LSD, MM or other kind of things are illegal here as well. I had a doctor that I told about my ideas and he didn't like it, complained and said I was going the wrong way....so I heve looked for an other. Now I have a young doctor and I tell her everything I do to try to rid of my attacks and that is realy nice to have that trust with her. Honesty seemed the best way for me. At the other side is your diagnose. Please download my app to register your journey and keep a detailed timeline of all attacks and all you do to feel better. Its not a normal Headache diary but a way to write down all you do to feel better and see what you have done in the past. Maeby this way you can "show" your specialist how you are doing. You can find it searching for register your Journey in the Appstores of Android or iPhone. And please, if you have any questions, just ask me. Rogier
  12. Good luck Brad, Hope you will find some relief soon with any kind of regiment. Try to keep track of your attacks and what you do to feel better using the APP I've made to support our quest to find a solution. Maeby the data you collect could give you more knowledge about your attacks. If you have questions you can always ask me. Rogier
  13. Not in the way you seem to have it, but I have it with old, salty cheese. Sometimes with pure chocolat and more. Thats why I've made a food-section for buttons in my app so we can also register food triggers next to our attack registration.
  14. Hi, CHfather, I'm not sure yet either. I was just talking MM every 5-7 day and it didn't went away, so I've started the every day a dose treatement and I was well in 5 days. I only did this because I had a weekend out with friend, had it already arranged month ago thinking that I would be good. But 10 days before leaving I still had every night attack and during the day so I've tried it. Until now (almost a month later) I'm still doing alright. I did take one dose every week or two because I had some shadows. Thats it. I've added my timeline: Oh, And I don't make chocolate or other things with it. Empty stomage, I'll cut them up in pieces and swallow it with water. Gone in 5 seconds.
  15. I went every day with the MM (dose 900mg) and it killed it finally after half a year. Don't know if MM will stop working. My first dose a few years back killed the pain straight away, now I seem to have more problems with it. But everyday worked for me. Did 6 days in a row and all gone (I had to because I also had a deadline, a trip with my friends to Amsterdam, so I needed to be good. Finally, two days before the flyight I slept and I had a good weekend with no pain)
  16. Register what you do Grumptom, This will give you more insight in how you are doing, what you have done. Alcahol is a trigger for me as well, but not in times I'm feeling well. Beer is bad, whine less, But I go well drinking a gin&Tonic
  17. Keep a clean registry of all attacks, medicine use, and other things you do to get less attack or feel better. Use the app I made for us if you want to. It will give a nice timeline showing all individual registrations nicely in graphic. This way you will have better view on what is going on I think. It is free to download, just look for: Register your journey in Google play or Itunes.
  18. I just ended a half year cycle using mushrooms every night before going to sleep. In 5 dosis it was gone. Just came back a few times at night. I've been using 900mg dried MM (but that could be dosis that is to high for others, somebody told me) I got the tip from a Dutch person who found out that every 5 days wasn't working for him, so he went every day. If its gone you can maintain once a week until you feel it's over. Download my app and keep a good registry of attacks, MM use, Medicine use, vitamins etc or any other thing you think is related to your attacks. The app is free to download and made by me, hoping it will help us all, having more insight on the history of your attacks and what you've done to feel better. Just look for: "Register Your Journey" in play or itunes Hope this will help you.
  19. My attacks seemed a lot stronger when I was using injections or Pills. Since I've stopped these medicines, my attacks are less strong.
  20. PLease, If you have questions like this, use the app and register your attacks. Having a detailed timeline of your attacks could provide you with the answers. I have made my app for myself and for all of you hoping it will give us more prove of what is helping and what not. Its free to download (search: Register Your Journey) and I do not collect any data you register, there is no advertisement. I'm getting positive feedback already from people that are using the app in the last two month. Even some specialists have seen it and they are positive because its the first time they get some registrations that are visible on a timeline, showing the attack rhythm. (so they don't need to read diaries, excel sheets and interpret them) I'll include a screenshot of my self from a week ago The screen is in Dutch, I know. My mobile is in Dutch. But the app is available in Dutch, english, german and Spanisch, depending on the settings of your phone. If someone has any questions about it, needs a new button or wants to help this project, just send me a message. We need to do this together
  21. What has to be done, has to be done. Very good that you are upgrading, will be a lot of work. Goodluck, I'll keep my eye on the changes.
  22. what a terrible story, I can only send you my deepest sorry, no answer
  23. I've been talking to a dutch member of the Dutch headache alliance and I think I have made one of the few independent headache diaries available....They are working on an app as well, basicly the same as mine but only 4 buttons and only for registering Headaches. 1 to use to start the headache, one for the first solution you have to abort/treat the attack, one for the second solution and one when the attack is over. Hope you will use it, I make it with all my love, hoping you get more and detailed knowledge as well.
  24. I Have the same. If that pain is gone I'm always getting back to normal. Keep strong, hope it will not last long.
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