nobism is setup by Cluster headache patients getting active to work on their own solutions as community. We will list all that get engaged
nobism is an initiative setup by Rogier Koning, a Dutch cluster headache patient, to support Patients, Patient-Leaders and Advocates.
My attacks started around 2007 and developed into chronic attacks very fast. Not 100% all year, I had a break from September to November-December with less attacks. Rest of the year was up and down from a few up to 8-9 attacks a day.
I’ve tried a lot of treatments, just like many of you reading this. I’ve tried medical treatments like oxygen, Sumatriptan. Also other things I could find to feel better like: Botox, Massages, Accupuncture, Drinking water every half hours, alternatives like MM, Cold, Heat, Breathing techniques and many more.
I always tried to change 1 thing at a time, so first stop and then start other.
To know something was effective or not, I looked at the amount of attacks I had. This means if a new treatment didn’t gave me less attacks, I would stop and try another. Its hard to find out something with Cluster Headaches, because they come and go. You never know if its the treatment causing the improvement or if its just your normal change of clusters.
This all brought me to the idea that if I would have data about my attacks and treatments, I could find out if attacks were getting less while changing treatments. Being able to compare these results with others and their data, could prove if it was a coincidence or a result of the treatment.
Thats when nobism started.
France – Spain
I’m Valerian, from Ubiqum. I started to build as first student a programme allowing Nobism’s users to receive their monthly PDF.
The reason I love to work on this project is because I’m a Cluster headage patient myself and I hope to contribute in improving our future as Cluster headache community.
The goal of my project was to help you visualising your own data and in order to track your own patterns. It was launch with success the 16th of July, I’m so proud of it!
We will now, with my colleagues begin the second phase of the project, which is to explore the data and use machine learning / artificial intelligence tools. We hope to give our community some hope, and we will keep you update for every result we could have bring.