For us as Cluster headache patients its interesting to know when we have our attacks through the day and how others are. This are some examples of different members of our group with their average moment of attacks displayed on a 24H disk.
Interesting to see is that some are more during the day and others are more at night or all day around.
Maybe this could tell us something about who we are as patient compared to others. Would be interesting to compare these also to activity and sleep pattern.
I mostely have my attacks at night and less and lighter during the day. For me its interesting to see that others can sleep and have their attacks during the day.
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I think it’s really interesting – I wouldn’t have known that people have very different, distinct daily patterns for cluster headache attacks. It makes me wonder what other things have personal daily patterns that vary a lot based on the person.
Is your data the third chart?
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I’m more aperson with attacks at night.
I think its interesting to see these differences, especially this one, but also the average length or when through the year could be interesting, Intensity changes etc.
Once there is a base to be able to compare, we can animate those patients, that are now not willing to collect data. Then they get something back.
Thats why being able to research as community, instead of n=1 is so interesting and very important to get many people joining OpenHumans and collect data.
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This is a cool insight and visualizations. Although I don’t experience cluster headaches, I do have another chronic health condition in which symptoms can have a sudden onset–attack-like presentation.
Do you have any suggestions on simple way I might start to track this? My first thought was just an excel spreadsheet with date and time of onset or maybe I could use the “shortcut” feature on my phone to create a form to track on my phone. I also appreciate others’ suggestions about what else might be contributing to variation that would be interesting to examine. For me, I was thinking that knowing the times I went to sleep and woke up might also be useful.
Thanks for sharing this-- it was a good for thought for me! Now, I may create a new topic on the forum to get others’ feedback too - as I’ve been thinking about joining in and starting a self-research project of my own.
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You can use the same app as we do. Its build to collect symptoms and treatments by pressing a button. Just let me know if you need some symptoms or treatments added and I’ll add them to the button - library
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