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Hi,

 

I'm walking around already for a long time with the idea to make a pain registration App to help us registrate our attacks, treatements, medicine use, use of mushrooms or other therapies.

 

My Problem:

 

My docter told me to make a diary of all my attacks so he could see how I was doing. through the years I've seen a lot of Doctors and a lot of them asked the same from me. Problem always is that it takes a lot of time for the doctor to see my attacks and to get a clear view of when I have more and when less.

So I started to make a excel sheet with all dates of the year. Like that the doctor had an easier view of my attacks. I've also added my intake of medicine, MM use, Vit D, Therapies I did. So the doctor already got a more clear view of my attacks and related things.

Problem for me was that I had problems filling the excel. The Diary I had next to my O2, so I could fill it in directly. The excel I had on the computer, so I had to fill it in later. Because of the pain, meaby an other attack or what so ever I got a lot of holes in my excel.

So I Started to look for apps to keep track of everything. Problem with these is that they gave me a whole list to fill- in with every attack I had. How much pain, were, did you take medicine, did you see a therapist, did you.... all kins of things that weren't connected to the thing I wanted to registrate. My pain at the moment I have it. My medicine use, at the moment I took something. My MM use, when I took those.

 

My Idea:

 

My Idea is very simple. Lets make an app for us. An app that only has a few butons. One for pain, one for medicine, one for therapy and one for MM use

By just tapping the button a registration is made of that item on a timeline.

 

Use personal or share with Doctor or Clusterbusters.com

 

We could add a option to the app that we can send this info to our doctor or to clusterbusters.com to help understanding the things we do and help research. Or...you can keep it private if you would like.

 

I've add two screenshots of how the app could look like. I'm self employed and the nice thing is that I just got myself a emplye. One that is starting to explore the app-world for me. I'm also willing to let him work on this app in the office hours but I need help. He is starting building an app for me but still needs to learn.

 

What would I like:

 

Some feedback of clusterbusters.com and members to know if they also think this could help us killing the beast

Feedback of information that is important to collect

People that have the time and energy to help building the app, designing it.

 

Extra:

 

I know we are all different, but I also would like to add people that have other kinds of headaches. Meaby our shared data will bring us more result than only looking at ours.

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Great idea!

I made a spreadsheet that tracked how many per day, what time they started and what meds I used to treat them. Doc loved the information, but felt bad that I was having on average 3 to 5 days a week with attacks. The only way I was able to work was that 95% of my attacks started at 3:00pm with a migraine and within 1 to 1 1/2 hours the cluster events would start and by then I would be home. To have 1 week shy of 6 months pain free thanks to Clusterbusters is a life saving experience.

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Hi everybody,

 

Hope more people will like the setup. My programmer is starting to build a first impression of the app. As soon as I have a first working model, I will place a link to it online. First I will publish it outside the Google Play and Itunes so everybody can download it to see if the basics work.

 

We wil l start with the simple setup with some fixed buttons. My idea is to start with the following ones:

 

  1. Pain (with alarm to ask how bad the pain was)
  2. MM intake 
  3. Medicine (with option to label what kind of medicine)
  4. Vit D Intake (with option to add the amount)

Are there more buttons you would like to see added as we start?

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I know you want to keep this simple, so I'm just asking . . . .

Time of day?  Duration of attack?  Only MM, or will it be able to accommodate LSA or LSD info?  Notes of some kind (for example, effectiveness of O2 or an energy shot/caffeine)?  When you have an "option to add the amount" after VitD but not after MM, I just have to wonder whether you're planning to have an amount option there, too.  I'm not quite sure what the "amount" info would look like with the "D3 intake" category, since there are a lot of pills in that regimen.

 

If this is something that would be printed out and brought to a doctor (or perhaps, as you say, sent directly to a doctor electronically), will there be an option to removed the MM/LSA/LSD part?  Not everyone will want to share this with a doctor.

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Thanks......

 

Good remarks, especially the one about sending the docter your intake of MM. I would have no problem with it but I can understand the point.

 

I will take in mind to add a button for coffee, energy drinks, LSD and LSA. I will see if I can add something to add the amount of MM used. I have a milligram scale but I don't know everybody has one that uses MM. 

 

The exact time and date will be registrated automaticly when you press the button.

Registration of duration and intensity of the attack is done simple. When you feel an attack you press the pain button. This registrates the attack and sets the alarm. After one hour the app will ring the alarm to ask you how heavy it was and how long it took. If the attack is still going on you will have the option to set it for another hour. (in the future I will add settings to change the alarmtime so everybody can ajust it to their needs.)

 

But anyway will I start with a basic app, basic functions. Later on I will add extra funtions to it depending on the experience of the users. 

 

The same for sending the data to the docters or to clusterbusters.com so you can also collect data from users to use for research. And if I do I will add the option to send without personal data like name etc, to send without the alternative treatments like MM or send it complete.

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This sounds like it could be very helpful. I am hopeless at getting paper or the computer fired up to record these sorts of details, but I do make time and date type notes on my phone. I would definitely be interested in using an app to record more detail.

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Hi everybody,

 

We are getting some progress. I have almost finished a first setup of the registration app. I hope I can Post a downloadlink this week. 

 

I will start with a downloadlink directly from Adobe Phonegap, the system we use to build the app. Just to save money because publishing it on Itunes and Google play will cost me around €200,-

 

I will add a way to contact me through the app and I would love to hear if you are using the app, to know who is using it and to know what your experience will be with it. You can also use the contact to ask me anything or request new buttons because this first setup will be a basic one.

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I don't know if this is helpful but I journal and these are the catagories : ch, drugs, activity, food, other. So for example under ch, I would put when, how bad, how long. Under drugs, I wrote on my first post my list, then "no change" if I'm not experimenting. Activity is helpful because I definitely seem more prone to attacks if I get overheated or stressed. I'm looking into possible food triggers, thus the food category. Finally, I like an other section for any thoughts on the day. I.e. Mood etc. Love the app idea,!

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Nice Mle,

 

I will keep this in mind. I've added some buttons already, more then described above.

I will finish the setup and place it online. Your remarks will not be added because I want to share the app before I go on holiday :)

 

The basic idea: Easy way to registrate our Journeys as complete as possible

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Hi,

 

I notice the same on a dutch forum were I have placed the download. I'll check it when I can and provide you with an other download.

 

Are there Android users that encouter problems? You do need to ajust a setting that you accept apps from outside the google play store.

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I have tried the same on some iPhones of friends of mine and the download of the app doesn't work indeed. Tomorrow ill try to contact my programmer and see if we can give an other way to download the app.

 

anyway. I was thinking something else:

 

Everybody need to keep in mind that this is just the first version. Meaning it has limited options. Meaning that a backup of the registrations is not yet arranged. 

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Hi Rogier,

 

Maybe you would like to check this app : https://play.google.com/store/apps/details?id=eu.monavf.android.monavf&hl=fr

It was made by a french member of cluster headhache association. I never used it, it's only on android. Maybe it can help you with you're work.

Your app could be really usefull.

 

Best regards.

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Hi,

 

Nice, I will check it out. I have an Iphone but I will arrange a android phone to check it out. Meaby we can join forces if the setup is the same.

 

I'll let you know.

 

Other thing is that I notice that the iPhone users can't install the app. So I'm forced to publish the app in the app store. I will do this in the beginning of September.

 

If there are people that are interested in updates please send an email to registrateyourjourney@gmail.com and I will inform you if I have an update, question about buttons to add or other things. 

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I've installed the app on my wifes phone.

 

It seems to give me a sort of a virus...... don't want to be rude but it looks like something keeps on tapping on the screen and opening things. I could run through it a bit, nicely made app but with a different setup as I have in mind. Still to much buttons to tap before I have a registration. I have deleted the app for now and will ask the builder if it is a known problem to see if he can solve it and I will install it again to take a closer look.

 

But I'm seeking something easier than this app. I only want to press a button to make a registration, noting else, because when I am in a bad state, I can't do anything more than tap a button.

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Hi everybody. I've registrated with a new email address and username. But I am the same as Rogier Koning.

 

We are building a new website right now to give all the users of the app the option to ask questions, add buttons to the app or meaby help us building the app. You can find the website at http://registrateyourjourney.com

 

At the moment we are using every free hour we have to finish the first setup of the app. 

 

On the website you can see all buttons we have listed, if you need one more, please fill in the form on the website on the buttons page and we will try to add it as soon as possible.

 

For the first release of the app you will be able to choose your own setup of buttons (not everybody is the same and does the same)

You will be able to registrate 

and you will be able to make an export to your email or the clusterbuster website if you like.

Meaby we will have a first setup ready as well for the timeline, but that seems to be more difficult.

 

Hope we can help this way to get our Journey registrated!

 

Best wishes to all that are in crisis right now. Happily mine are fading away at the moment.

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this seems to be a fantastic idea,really hope it goes well,but my main concern would be if for example, we were in car accident 

and the police took your phone for there inquiries!with all the information about possession and consumption 

of class A drug!i just hope are dedicated clusterbuster can make me feel safer about this.deos anybody have any input on that matter? ,i have great

appreciation for this idea,hope all goes well

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I do understand that,its something I don´t worry about as being brought up in Holland. I would have no problem showing all my registrations inclusive the MM, LSD of Marijuana to my doctor or any law enforcer.

 

But would the police take your phone when you've been in an accident? And wouldn't it go to far if they start to browse through all your information that has nothing to do with an accident? I would like to know more about that. Would they be allowed to see your private health information?

 

A simple solution would be installing a password on the app, so that they can't open that information. But this would mean as well that every time you want to register something, you need to start with the password. not impossible but you understand that this wouldn't help the easy way of using this app, just press the button.

 

Hope you can shine some more light on this case.

 

The United States seem the country with most freedom in the world and I only hear comments about these kind of things from american people. For you the MM registration and that a police can take your phone and on the other side not able to send you doctor the information incl. the MM use. I find this all rather strange, but I will try to find a solution. (this is not to judge anything, just to understand)

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And What if I add a button "other"  under the list of Alternative medicines (http://registrateyourjourney.com/buttons/) you could use that one to register this item. Like this it would only be clear to you that you have used this, not the doctor and not the police.

 

(I've added the button already to the list as you can see)

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I haven;t checked out this app yet. I'm usually not one for trying brand new apps until the bugs are worked out. I Just wanted to add that with some of the other apps that I've seen regarding headaches ... I always wished there was an option to "ADD A BUTTON" of my own choosing, so I can add that I'm taking this med or that med also .. .etc.

 

I hope your app works good and I hope it has the ability to personalize it somewhat with  the ability to be able to have a place to add notes on any given day for any given attack. Finally, it has to have a way to be able to save and print out the results to share, compare, and for other specialist to compile all the data.

 

Goodluck and I'll be watching this.

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Hi, the idea of the app is that you can personalize it. But for me personalize means that you can have your set of buttons. You can add a medicine, therapy, Symptom that is missing, you can request a button in the app or on the website (from the app you go to the website to request it) The only thing is that I need to add it.

 

Reason why I add the buttons: if you add a button Medicine-X and someone else adds X-Medicine, you have added the same medicine. But if you decide to share your data with (for instance) clusterbusters, than they can't compare these data because they will be treated as different medicines. To solve this I would have to make a sort of a cross reference list and that is impossible.

 

My app also has a bug. The History order isn't ordered well, they are a bit mixed up. (only iPhone)  But for the rest it is working well.

The most important thing now is that you can add the buttons and can start to register. We haven't reached the full potential yet. In Android we already have the Time line implemented, on iPhone we have it uploaded but we have to wait for approval.....of Apple. 

 

You can wait until the bugs are gone, but than you miss already a part of time that you could have registered. 

 

Next week update: We will add an option to set buttons automatically. Example: Paracetamol, now you press the button and you have to add the mg/amount of the Paracetamol. With the automatic function you can pre-set this amount. Meaning that if you press the button, the pre-set value is used and saved. One step less to register the use of Paracetamol. You can imagine you can use this for a lot of things.

 

We have also added the option to register you temperature and bloodpressure. You can already add the button, but not use the button until  you have the next version. Again, this works already on Android...Sorry

 

Bad thing is, I also have an iPhone...Meaning I don't even have the latest fuctions.

Other thing: If there are volunteers that want to help, maeby somebody that can design and rearrange the website/logo, knowledge of marketing to reach more people.....you are more than welcome to join this project.

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