I’m losing all my data
After updates, all my medication data, seizure activity, emergency seizure medication, always disappears. It’s extremely frustrating.
Loved it, Now I hate it
I’ve had this app for almost three years. I have been dedicated to logging all of my medications, auras, seizures and headaches. My doctor can see what I log and when so they can keep up with what is going on because it is so hard to get an appointment with them. There was an update around Christmas and the app logged me out, it lost ALL of my data… every log, note, medication and any insight I had ever put into the app was gone. Now, the app logs me out once or twice monthly and does the EXACT same thing. I’ve switched to keeping up with my insights in my notes folder, but the notifications on taking my medication really helped remind me if I had taken them or not because life happens and sometimes you forget! If these changes could actually be fixed, I would love the app again, but until then it’s a no from me. I will never be able to get back the last three years of information that was lost and neither will my doctor who recommended the app to me. Huge disappointment for both of us.
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Needs export capability
The app has been great for me to track my seizure and aura details. I really wish it contained a way to export the data like my Blood Pressure app does to allow me to send the spreadsheet of data to my doctors. The ability to add/modify triggers would be great too as not everyone’s are the same. Overall great app that I recommend to folks needing to track epilepsy activity details.
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Looks well, Means well, but…
Me having epilepsy I want this app to work but I feel like all the things we might want for a good quality app and it looks really good but those things just don’t work as easy as it should be.
Few fixes
I have seizures triggered by concentration, writing, reading, etc. I would love if those triggers could be added, or allow custom triggers to be entered. Also trying to enter a separate log for symptoms is difficult after a seizure. It would be nice if the symptoms could be added to the seizure log. And lastly, a widget to log seizures instead of only for medication. Medication doesn’t work for me but I have daily seizures, so the medication log being throwing in my face 5+ times a day gets old quick. I love this app and it makes everything very easy to see! It’s just a few things to streamline it.
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Love it!
I use this app everyday to track medication and seizures. I showed it to my neurologist and he said he’s never seen anything like it! He’s recommended to other patients who need to track vital things this app can. Thank you!!!
THEY DELETED MY DATA AND VIOLATED HIPPA. Gatekeeping personal information
DO NOT USE THIS APP! YPUR DATA IS NOT SAFE!!!
Update: Spent 4 months trying to get my personal data. I was ignored by Epsy for months and had to go above them to LivaNova. They not only deleted all of my personal information before providing it to me, but they violated HIPAA by sending me videos of some girl having seizures along with all of her seizure activity. Their Chief Privacy Officer admitted to deleting my information.
I spent months of my life trying to get this and only to have it completely deleted. ABSOLUTELY DISGRACEFUL AND UNACCEPTABLE.
I REPEAT—do not use this app.
I’ve been trying to get my data exported so I can have all of my historical seizure data that I’ve recorded for years on this app. I emailed their support team on November 4th and they told me to delete the app (which would wipe my data) and now they’ve ignored every single email I’ve sent since their ONE unhelpful response on 11/9. Personal information is being withheld from me and no one will respond. This is illegal.
Update: Spent 4 months trying to get my personal data. I was ignored by Epsy for months and had to go above them to LivaNova. They not only deleted all of my personal information before providing it to me, but they violated HIPAA by sending me videos of some girl having seizures along with all of her seizure activity. Their Chief Privacy Officer admitted to deleting my information.
I spent months of my life trying to get this and only to have it completely deleted. ABSOLUTELY DISGRACEFUL AND UNACCEPTABLE.
I REPEAT—do not use this app.
I’ve been trying to get my data exported so I can have all of my historical seizure data that I’ve recorded for years on this app. I emailed their support team on November 4th and they told me to delete the app (which would wipe my data) and now they’ve ignored every single email I’ve sent since their ONE unhelpful response on 11/9. Personal information is being withheld from me and no one will respond. This is illegal.
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Flawed
I’ve used this app for a couple years now but after this last update it logged me out. I forgot my password and tried to get a new one sent and it isn’t sending the reset link. So I tried to contact the app tech support and it’s nonexistent!!!! So now I’ve lost all the data I have stored in the app for over two years that is sooo important to keeping track of my daughter’s seizures! It makes me want to cry because it’s crucial for tracking! Never again will I use this app or any app without a tech support!
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App sucks
Compared to the old Nile, this app doesn’t track days WITHOUT a seizure . That was helpful when my neurologist asked when my last one was. Obviously designed for folks with current episodes but totally ignores those of us tracking our current successes.
Tech Support Is The Worst
I have emailed repeatedly since November asking for tech support with my account that I’m locked out of and have been repeatedly told that they’ll get back to me - they never follow-up. I now have data that I can’t access that my daughter’s physician needs.
Broken
Cannot log in or reset password
Gatekeeping personal information
I’ve been trying to get my data exported so I can have all of my historical seizure data that I’ve recorded for years on this app. I emailed their support team on November 4th and they told me to delete the app (which would wipe my data) and now they’ve ignored every single email I’ve sent since their ONE unhelpful response on 11/9. Personal information is being withheld from me and no one will respond. This is illegal.
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App stopped working and support won’t respond
The app was great until it stopped working. Now I cannot get into my son’s account to track his seizures, and I cannot create a new account because every time I get to the age verification it fails due to a mysterious “connection” issue. I have checked that my iOS is up to date, I have checked that the app is up to date, I have deleted the app and reinstalled it twice, I have restarted my phone, I’ve even tried using a different email from our original account. Nothing works. I have reached out to support on the website and via email and received no response. Will someone please help me??
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Can’t set up account
I’ve been trying for days now to get an account set up but it refuses to go past age verification for consent for a caregiver for my kid’s account. Nothing I’ve tried works.
Cannot customize 1st dosage medication time
If you only take bedtime seizure meds, this app does not let you change the time on the medication schedule. /:<
Great app
This app is super helpful. I like how many different things you can keep track of and the reminders really help.
The only thing I would say could really improve it, would be a stopwatch within the app to track seizures and the ability to add in your own side effects instead of only being allowed to select from their list and having to add it in the notes section. Hopefully they add these things in.
The only thing I would say could really improve it, would be a stopwatch within the app to track seizures and the ability to add in your own side effects instead of only being allowed to select from their list and having to add it in the notes section. Hopefully they add these things in.
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I wish I did it
I am sad I put in all my info and refreshed it but I did not get the email with the password
Lackey
Erin
Thank you
I don’t thank you guys enough even if you are stealing my health information and sending it to China I wish you didn’t but that’s the world we live in
Fantastic app
I’ve always been looking for an app like this that didn’t cost or had a little cost. Very good app keeps track of medication and how you’re feeling for the day. Thank you for making it.
