Darren Posted January 26, 2023 Share Posted January 26, 2023 Curious what everybody uses for tracking their attacks (time, intensity, etc), meds (customizable with dosage), etc. I used Register Your Journey (app) for a few years, and then Nobism when it replaced RYJ. It seems Nobism no longer works. I reached out to the developer, but, got no response. Does anybody have any apps that they would recommend? I've only found Migraine tracking apps, which don't seem to work well for CH. Thanks in advance. Quote Link to comment Share on other sites More sharing options...
FunTimes Posted January 26, 2023 Share Posted January 26, 2023 when I was tracking everything I went old school with a pad and a pen. Filled a few notebooks then got fed up with it and threw it all out. Only track things now when I am in a clinical trial and they normally give you some sort of tracking device for it. 2 Quote Link to comment Share on other sites More sharing options...
snafu Posted January 26, 2023 Share Posted January 26, 2023 i use an excel spreadsheet. 2 Quote Link to comment Share on other sites More sharing options...
jon019 Posted January 26, 2023 Share Posted January 26, 2023 (edited) 5 hours ago, FunTimes said: when I was tracking everything I went old school with a pad and a pen. Filled a few notebooks then got fed up with it and threw it all out. ...same here....but that was because every cycle/triggers/pattern was same for 23 yrs when ECH. for me pointless, but still believe can be a valuable tool to detect subtleties of importance... ....seems we have discussed this a few times and i thought there was a newer version of journaling, but the search function fails me....perhaps someone recalls that thread(s)? ....one of my favorite diagnostic stories...and i believe from National Migraine (now Headache) Foundation newsletter... was the physician who noted, and used in diagnosis: "boy, you folks (clusterheads) sure do seem to all journal, i see it consistently". it was kinda implied as an OCD component of CH that i really don't know is valid or not ¯\_(ツ)_/¯. but i agree, we do seem to have the need.... ....the other favorite was the physician who asked, and considered a definitive diagnostic indicator of CH, a positive response to the question: " have you thought/considered/contemplated suicide?" is called suicide HA for a reason, and i firmly believe an absolutely essential question for any diagnostician....sorry for the thread divert...am easily distracted... " Edited January 26, 2023 by jon019 4 Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted January 27, 2023 Share Posted January 27, 2023 4 hours ago, jon019 said: positive response to the question: " have you thought/considered/contemplated suicide?" I so understand how this could be a favorite as I have a hard time believing that there is a Cluster Head out there that hasn't had this awful thought plague there mind. Sometimes it's hard (especially in the beginning) to imagine living forever this way. As for tracking meds and attacks, I initially used my outlook email calendar. I still shake my head when looking back and seeing my loggings of migraine. I no longer track the attacks as they have continued to morph, making tracking somewhat silly. There is something to be said about a diligent documenter and has proven helpful for some in the past. I now focus on things like supplement packaging, dosing levels and odd happenstances like warning signs as well as the last time I ingested something outside of pharma. Excel is a great tool as you can easily auto sum or create neat formulas like (cell such and such equals this or that). Now days I try and pre-package everything from morning intake, evening intake and for fuc8ks sake intake. It just makes my life a bit easier being able to grab a baggie although I do get the odd looks at Michael's craft store when buying out the small sized drug looking baggies... 1 4 Quote Link to comment Share on other sites More sharing options...
Darren Posted January 27, 2023 Author Share Posted January 27, 2023 Thanks all. You do raise some good points. I honestly am not even sure why I still track everything. But, it's just what I've always done. So, I feel like I'm supposed to / should continue to do so. Haha. I feel that since I just had my first bust out of a cycle, it would probably be good to track the maintenance doses, and remission time, etc. Was hoping there would be an app similar to what I was using. But, I haven't found anything that meets my needs. I guess I'll either stop logging, or start manually logging in excel. Still open to suggestions though, if anybody else knows of something out there. Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted January 27, 2023 Share Posted January 27, 2023 1 minute ago, Darren said: it would probably be good to track the maintenance doses, and remission time, etc. Nothing wrong with doing as such and in fact it can be therapeutically beneficial. Seriously, it's high time for a cluster head to develop something usable by us thunder bunnies! Keep on keeping on! 1 Quote Link to comment Share on other sites More sharing options...
dmlonghorn Posted January 28, 2023 Share Posted January 28, 2023 I tried several apps, none of them were able to capture the nuance of my CH, so I reverted to journaling with pen & paper. I found it therapeutic. 1 Quote Link to comment Share on other sites More sharing options...
CDog Posted February 12, 2023 Share Posted February 12, 2023 I use Migraine Buddy available for Apple and Android. I have it on an Android phone and an IPad. You can start it on one and finish it on the other if needed. It also is customizable. Quote Link to comment Share on other sites More sharing options...
Darren Posted February 12, 2023 Author Share Posted February 12, 2023 (edited) 4 hours ago, CDog said: I use Migraine Buddy available for Apple and Android. I have it on an Android phone and an IPad. You can start it on one and finish it on the other if needed. It also is customizable. Thanks @CDog. I had checked that one out, but, while playing around with it, I didn't see a way to add meds. Do you use the premium version? Edited February 12, 2023 by Darren Quote Link to comment Share on other sites More sharing options...
CDog Posted February 14, 2023 Share Posted February 14, 2023 No, I use the standard version. I have been using it for 4 years or so. You can add and delete symptoms, meds etc. They have a YouTube channel that might answer some questions. https://www.youtube.com/results?search_query=migraine+buddy+how+to+use 2 Quote Link to comment Share on other sites More sharing options...
Darren Posted February 14, 2023 Author Share Posted February 14, 2023 7 minutes ago, CDog said: No, I use the standard version. I have been using it for 4 years or so. You can add and delete symptoms, meds etc. They have a YouTube channel that might answer some questions. https://www.youtube.com/results?search_query=migraine+buddy+how+to+use Awesome. Thanks again! Sounds like it has what I want / need, and maybe I just wasn't using it properly. I'll give it another look. Much appreciated. Quote Link to comment Share on other sites More sharing options...
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