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Posted March 8, 2018
I now have 26 people in one group, most have clusterheadaches, others are an medical data scientist, a PhD, a neurologist, 2 mathematics. (they can analyse to, but look at data different than a medical person, so see other things)
We believe that only looking at patients in combination with medicine, is not enough. So we don't ask for nothing more than that you collect your story in data and work together with fellow patients.
Talking is nice, data talks better
If Shiatzu Heated Neck massage helps for more people, I'm sure others in our group would like to try. Difference is that all we do we convert into data.
In our point of view, if symptoms registrations go down, the patient could be doing something that has a positive effect. We can all copy that, collect the data about it and compare. If more patients get the same results, it could say something about the effectiveness of the treatment.
If you see it with most patient, you could speak about a trend.
These trends can be used to get alternative treatments accepted.
Good thing is, we have it supported with our data and not only patient experience
Join the facebook group "Cluster Busters - Patient driven research"
We'll start our own research to find the best treatments
Its a shame that there is so little respons. I'm sorry to complain.
But we all complain.
Complain that not enough research is done. Complain that we have so much pain. We complain complain and complain.
And work together.
What do we have to loose?
Posted March 2, 2018
I also hope the ClusterBuster management will join in, We have to work actively together, all.
I made a free tool that we can use in our- and fellow cluster Headache patients benefit.
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.
Posted December 12, 2017
It seems I can't add images. Its very small but its doesn't seem to work. So a dropbox link:
https://www.dropbox.com/s/ssjo8pz80ymf8oe/Foto 12-12-17 21 38 30.png?dl=0
Hope it works
This is how my personal attacks go. Been pain free for a year and it started in december again after a bad cold.
This way I hope I can give insight in everybody individual journey. I hope you like it.
If there are any questions about any subject, feel free to ask
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
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.
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.
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.
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.
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.comDemo: if you would like to try the demo app we've build to do the work, please send me and messageWhitepaper: 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.
Posted June 14, 2017
WOW. Nice. I do have some MS patients using my app to register their symptoms and it would be nice to see if they use Vit D in hight quantity. I'll ask
Posted June 12, 2017
Hi. Thanks Archimedes. I'm on 45 signups right now but I need 250 at least. So anybody more that want to join?
And if anybody has questions, please let me know. Also about data security, because I know most people have questions about that.
@MoxieGirl. I've looked if I could change it but didn't see the option
Posted June 11, 2017
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.
Posted June 6, 2017
Thats why we need to register our attacks, medicine use, vitamin or mineral intake and all we do to feel better so we get data showing things like this could be nonsense.
Now we can only use our experiences trying to tell the world something is nonsense or working!!!
Lets collect data together, and together with migraines and tension headaches and Multiple sclerosis or diabetics. Lets look at out health in a one big picture instead of putting it all in boxes.
On 2017-6-1 at 2:45 PM, john2000 said:
CLUSTER HEADACHES SUFFERERS ARE DESPERATE ,BUT NOT STUPID. WE RESEARCH AND RESEARCH AND RESEARCH AND RESEARCH ,
CLUSTER HEADACHES SUFFERERS ARE DESPERATE ,BUT NOT STUPID. WE RESEARCH AND RESEARCH AND RESEARCH AND RESEARCH ,
Maybe thats why its smart to use my app I've build for us. You can do this but without any good tracking of symptoms there is no way to compare.
And maybe a solution is not a cure but lowering the intensity or frequency one or two steps. But to know this we should have data to compare.
Posted May 19, 2017
For me attacks during the night are normal as well. One hour after going to sleep I get an attack. It takes me around an our until I go to bed again. One hour later same thing again. I have this all night (and days when I take a nap).
I still doubt if I should go to sleep or stay awake, but its always hard to find the right answer.
Download the app adn keep track of your attacks and other symptoms and maybe it will give you and your specialist more view on how you are doing. I've made the app to keep track of my own attacks and all I do to feel better.
Hopefully I will be able to build a platform so we can share our info and all together we can search for the best treatments, not by experiance but by looking at our data.
download the app registeryourjourney and keep track of attacks, medicine use or anything you do to feel better. This way you can inform your specialist better and you get more knowledge of how you are doing.
I made the app myself and hope you can use it.
Maybe it can spedd up any diagnose for you.
I have no problem. Just send me a message. Just send me a message with contactdetail and we'll have a chat. I use skype
Posted May 3, 2017
I've just been to the Netherlands again and spoke to some big IT companies to see if they can support our APP-platform for further development. I will keep you informed if I have news about working together with them.
Just hope you are doing fine.
Interesting, Should I add the "Jesus Shot" As a button to the app so we can collect data about it compared to our attacks?
Posted April 20, 2017
Added as a button to the list of alternative treatments. I kept it simple, for now you can only keep track of taking it. Later, when the new partner starts to develop with us, we'll figure out something more accurate so we can keep track of way of using and amount.
Thanks CHgather, always straight to the point
Posted April 19, 2017
I've done the survey. I do have my doubts about this setup (used in many surveys) because its only a registration of our experience and not actual time based data that will reveal relation between different items like medicine intake and attacks. It doesn't show either if a patient has more attacks at night or more during the day. It doesn't give any clue if a patient is really strict in taking their medicine on time or that the take their meds one day at 08:00, an other day at 11:00 or if they sometimes forget taking it for a day.
I know I'm a bit of a stubborn (but not negative) person...or a lot But I think giving these researchers time based data and the option to follow us patients for a while "live" would give better insight than asking us about our experiences. These are always changed by time!!
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.