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nobism's profile

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Location: Bocairent Spain 
DOB: Saturday, 1st February, 1975
Site: Click here to visit site
Status: Not currently suffering :D
Joined:  12th December, 2017
Posts: 2
I'm a 42 years old clusterheadache patient from the Netherlands, that grabbed the bull by the horns and setup nobism. I've tried for 8 years all kind of treatments and have a lot of experiences about it. My experience is colored by time, circumstances and emotions and I have no data to support it. I could not remember if teh Atlas profilax did help me or not, or that drinking a glass of water every half hour helped me lower one of the keypoints of my attacks (duration, intensity, frequence)

Thats why I made a smart patient diary. My goals are to collect data together to know what symptom (and combinations) frequence, duration and intensity we have. To know what treatments we all do and see if we can find groups in it of patients that are more similar than others.

When we have these lists I would like to find out what groups or individuals have more or less symptom drops or changes.

This is a marker that it goes better or worse with us.

If we have this marker, I hope to see what treatments the patients are using and I hope we can create information about the best treatments available, supported with our own data.

I know we are all individual, thats why I made the smartest patient diary available that doesn't only collect headache symptoms and medicine use, but one that you can use to collect anything you think is important to keep track off. Vitamins, therapy, alternative treatments like Vit D or MM and more.

I hope to get an australian group as well to join me next year in a "one year trail" trying to setup these first lists.

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