Nile AI

I’ve only been using this app for a couple of days and I really like it!! Helpful with logging my meds and symptoms/side effects.

This could be a specific me problem but, every time I fill out the medical portion (like, filling out the medications I take, my neurologist, etc), it doesn’t save. I’ve don’t it like 4 times. Any one else having this problem? It’s extremely frustrating. It’d be a 5 star app if I weren’t having this problem.

This app helps me and makes FOR SURE that I take my medicine

App won’t transfer notes from epilepsy foundation diary. Customer service showed me how to print them. I replied “If you could just go ahead and fax me a copy. That’d be great “

1) You cannot delete entries. 2) You cannot independently enter and track rescue medicine use. 3) If you report an aura, it gets counted as a seizure in the tracker. 4) No web version. 5) There is a bug that changes the entry date when you edit a seizure entry. Plus side- support team is so far helpful. IMO this needed more beta testing before moving patients over to this :(

This app has some problems. - the App Store says it is more than 4 years old. That’s weird since the company supposedly started in 2021 - the app uses a word “aura” which is not recommended by the international league against epilepsy - signing into the app I already agreed to not only share my private info but also to have providers make appointments for me. What??? - the app allows me to record seizures that I have IN ThE FuTURE - why can’t I put the time of my seizure? - the default birthday for some reason is 20 years before today. Why? - the app asks survey questions including about suicidality but does nothing if I say that I am suicidal - the app allows made up medication names with up to 8x per day dosing and does not seem to mind if I miss my meds - the app will contact the doctor to enter information about me. What if I don’t agree either the doctor? - this company was clearly funded by UCB who contrived 29 million dollars. Why don’t I see mention of that little disclosure anywhere? - what exactly will Nile do with my information? Will they use it to figure out how to better advertise the most expensive drugs to my doctor? - what control do I have over my data?

Because you are partnered with the epilepsy foundation, I know what this app is for. Everyone read before you sign!!! They just got a huge CDC grant for a database, but each chapter of EF uses Salesforce. Make sure you have them sign something so they don’t have everyone’s info for their emails and medical info isn’t inputted into their donor database system.

Love having an app to track my son’s medication and seizures. Keeps parents and doctors on the same page with any changes.

tracking my seizures with this app helped me pinpoint my triggers so far, and i'm hopeful that the charts will show my progress over time. the app is easy for me to use - kudos

Nile is a long-awaited type of app for me. Once the seizure is past, pull out your phone (that is small and always with you) and log it while it is as fresh in the mind as possible. It is so easy to log my seizures, I love it! As a beta tester, I had time to look for flaws. The Nile developers did an excellent job! When you log a seizure, you are given the option to make the aspects of the seizure a default selection. Name your common ones and you can flag multiple aspects with a single tap! Logging the time is easy as there are morning, midday, evening, and night (not overly specific clock times). You are given a bar chart mapping how many seizures you logged each day over the past week. You can look at numbers for the past month (and three months) too. The fact that Nile can send results to your neurologist gives your doctor details before your appointment. Do what you can to get that set up to save appointment time for everyone. Put Nile to use! You will be happy you did.