Community Forum

Sharing diary info with doctors

Hi everyone,

Hope you've had a chance to try out the new features of the epilepsy diary. I have a few questions for you... please write in your responses here or email me!

1- Has anyone tried the sharing feature? Has it worked for you and do you find it helpful?

2- Would you allow your doctor or nurse to view your seizure diary if you had the chance?
We are developing the ability to let users share their diary info with their doctors, nurses if they want. It's solely up to each individual to do this, and I wondered what everyone thinks? It can certainly make it easier to share information but it wouldn't be in place of your usual way of communicating with your team.. just an added way of sending information.

I hope you're finding the diary helpful and I 'd love to hear your thoughts on these questions and more!

Best wishes,

Resource Specialist


Every time I have a Neuro appt I print out since the last time I saw him in my Diary. He has 3 months of Diary info in my chart now. He had never seen it before and is telling his patients to use the diary here :)


It seems a little scary to share personal diary info with my neurologist. The epilepsy diary on this site is fine to share. But sometimes I write in a personal diary about death or my condition (seizures) to vent my inner most thoughts while I'm thinking them. Memory is a problem for me. I don't want the doctor to think I'm incapable all the time. This is very iffy if I want to work and not be on dissability.


Good point! I wouldn't want to share my personal thoughts either! Thanks for the feedback! Keep sending it along...
Take care,

Resource Specialist

Hi Epi_help,

Just a quick note that "Chrome" WebBrowser has been blocking some locations here as "malware" infested. The most stationary ones in concept searches are in the "Community Calendar" for May 2010 with suffixes including "nude" (as of June 11, 2010, 2:30 PM PDT).


Thanks Tadzio - missed that before! got it now...

Take care,

Resource Specialist


Unable to comment on the sharing feature as I've never used it.  Second ? - no I wouldn't want to allow direct access to my doctor or nurse because of the way I use the notes facility to record what I consider to be personal information.  If I want to match seizure frequency to mood changes or provide them with other significant information I've recorded - I print out a seizure report - cross reference with my notes and add in a few comments to the seizure report.  Some people may want to allow direct access but I think it would depend on how you use the diary and your relationship with your doctor/nurse. 

I do find the diary extremely useful and know it's really helpful for the medics trying to control my seizures.  They seem to appreciate the information.  From a personal point of view, I find it very helpful to keep track of what's going on: it enables me to provide fairly accurate information instead of a vague overview. 


Thanks Victoria for the feedback and good point about the notes. People do use the diary esp the notes section differently. That reinforces the reasons why whether or not people share it will be totally up to them. Wishing you all the best,

Resource Specialist

Our Mission

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

24/7 helpline