Seizure Journals

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Endless

Endless

Even Keel
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Usually everyone in here says "keep a seizure diary - it's important" It helps you and your doctor recognize patterns, figure out if you are on the right dosage of your meds, etc.

We have lots of new members in here, so I thought I'd paste all the links for all the various seizure diaries in one place. It can be kind of time consuming to dig them out from the various posts. If you know of others that you like, please add them.

Automated

A note on sites where you keep your data online. Be sure to read the privacy policy on your chosen site and make sure you are okay with it. Not everybody keeps your info private. Also, some sites are hacker sites, that infect your computer with malware when you open the download. Good internet security software will protect you from that. I don't think any of the below are in that category.

This one is my personal favorite, but maybe that's just because it's the one I use (lol) It has pretty good reports, including a graph that shows medication dosages and the number of seizures, over time. It's pie chart by time of day helped me understand that half my siezures are nocturnal. Also helped me figure out that my migraines are postictal. Seizure Tracker

This one has nice graphs, too. Not sure if it is the same as the one shown below. It's offered by microsoft, it gathers your healthcare information, and I'm not totally clear how I feel about it: HealthVault

If you want to use your smartphone as well as the computer, there's one on epilepsy.com/seizurediary.

iPhone App!

This one has lots of bells and whistles, but it costs $49. EpiTrax

Manual (non-computer)
Some people just use a calendar, like you buy at the bookstore.

Manual diary, plus more information: Livebeyond epilepsy

Very simplistic, bare bones journal from the epilepsyresource

This one is from the BC Epilepsy Society. It has a format that is very like the one my doctor wants me to hand in to him.

Includes place to put all your important info, journal provided by a canadian organization: Seizure Journal
 
Hey, thanks

Endless, for giving out far more options to everyone. It's greatly appreciated!
 
Thank for the reminder I did pretty good in July/August and forgot since then.
 
There are lots of new folks in here, so I'm giving this a bit of a bump up. It's importanat to keep a seizure journal, and there are lots of choices around format. Some are listed, but it's been awhile so I'm guessing there may be more now. Anybody have any additions?
 
I started a journal on Seizuretracker.com But Im finding its more handy for myself to keep a notebook or the small journal my previous dr gave me. With being a mom, and having all the daily duties, its easier for me to grab a notebook or something to write down any changes, rather than log onto my computer. But I try to keep everything organized and in its place. Ive been told Im a "neat freak" :roflmao:
 
bumping up.

There are even more new people in here every day and the topic of seizure journals has been mentioned more than a few times - this might be a good resource. Everybody please add on if you know of any new seizure journal formats or tools.
 
Last edited:
Great idea for a thread Endless. I posted various bits of advice on what to record in a journal in different places (and I'll add them here as it seems appropriate):
The first step is to get a calendar or diary/journal and start tracking the following things every day:
  • what you eat (meals, snacks, drinks)
  • night sleeping routine (bedtime, waketime, quality of sleep [ie. uninterrupted?])
  • seizure activity (both confirmed and suspected)
  • menstruation cycle (for women obviously)
  • anything that strikes you as unusual or possibly related to your seizure activity
Click to expand...

http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

We used to record everything. We recorded all seizure activity (color and symbol coded for different types of seizures) and her menstrual cycle on a calendar. We tracked what my wife was eating and her sleep schedule in a journal.
Click to expand...

http://www.coping-with-epilepsy.com/forums/f23/seizure-journal-question-4392/#post41116

And a word of caution about using online database systems:
For me, a paper calendar or journal is preferable to a computer program - especially one where the data is not stored locally (and others may have access to it).
Click to expand...

http://www.coping-with-epilepsy.com/forums/f22/seizure-tracker-2581/#post21553
 
the epilepsy.com freebie I think is pretty decent for a bare bones thing -
but: the scroll function has never worked on mine
I've un and reinstalled and it still will not allow for a decent cursor maneuvering
and the cursor doesn't stay active- it does not scroll down to the last text
I'm not explaining well
if you'd see mine you'd know what I mean
this isn't that big of a deal because it can impel me to write more stream of conscious

I was just thinking earlier that this forum might be able to have a journal area
but I think I already mentioned something about that and had that addressed as a privacy and complexity issue
but then everything seems like its repeating once I leave home
maybe it's just because the world is banal and tedious
 
warning ***
"patients like me" has a site that is trash
I think it's a hacker site
I thought it was private but it leaves your diary entirely open to anyone online
it continues to email me too and it makes my heart skip seeing each email
I've tried to delete my info before and it just won't
that's why I stuck with the epilepsy.com one
I've had suspicions about this site too frankly and am not always forthcoming about info
but this site seemed to check out ok
:)
 
Yeah, that's the problem I have with HealthVault. It gathers all kinds of private health info, and I'm suspicious of what they do with it. Seizure Tracker was started and is maintained by a family who has someone with epilepsy. I tend to trust it more. I'm anonymous on there.
 
The easiest place for me to track my seizures has been my email account. I have been doing this for fifteen years on that account now. It comes in handy especially now that I have my cell phone and can immediately type out what is occurring/has occurred wherever I may be.
I mark the time, date and description of what i felt has occurred and save an email draft usually ongoing for a year, until I send it to myself and save it in my neurology seizure folder.
When I go to the neurologist I copy the latest information since I have been seen as a printed word document along with an excel graph and my list of questions. It helps me have my journal at my appointments if there were any noteworthy or different ones as it is sometimes difficult to remember how to describe them. My journal helps.
 
DayDreamer said:
The easiest place for me to track my seizures has been my email account. I have been doing this for fifteen years on that account now. It comes in handy especially now that I have my cell phone and can immediately type out what is occurring/has occurred wherever I may be.
I mark the time, date and description of what i felt has occurred and save an email draft usually ongoing for a year, until I send it to myself and save it in my neurology seizure folder.
When I go to the neurologist I copy the latest information since I have been seen as a printed word document along with an excel graph and my list of questions. It helps me have my journal at my appointments if there were any noteworthy or different ones as it is sometimes difficult to remember how to describe them. My journal helps.
Click to expand...

this is a really good idea
 
I tried putting my diary onto seizure tracker, at epilepsy.com, quite sometime ago, but it was difficult as so many of my occurrences are uncertain events. I am not absolutely certain what they are unless someone is around me and can tell me I had a specific type of seizure. Until the doctors invent a tattoo that appears to tell me what just occurred was a sps or a cps I couldn't classify at least half of them, except for my descriptions/sensations and possible triggers.
I definitely like to keep track of when I miss my medications and some days when I just feel close to seizures.
 
DayDreamer said:
I tried putting my diary onto seizure tracker, at epilepsy.com, quite sometime ago, but it was difficult as so many of my occurrences are uncertain events. I am not absolutely certain what they are unless someone is around me and can tell me I had a specific type of seizure. Until the doctors invent a tattoo that appears to tell me what just occurred was a sps or a cps I couldn't classify at least half of them, except for my descriptions/sensations and possible triggers.
I definitely like to keep track of when I miss my medications and some days when I just feel close to seizures.
Click to expand...


I agree w/ epilepsy.com - it's a decent journal but it doesn't seem stable on my app. It tends to lose entire entries as I try to save them.
I try to convince myself I"ll keep track of a hand-written journal but I never seem to be able to keep track of carrying one around. I've gotten to the point where I'm giving up trying to obsess about every little weird feeling and just write down my feelings and things in general. It's a nice stress relief and nice thinking that I don't have anything to prove at all. It's a stress of its own trying to capture the essence of seizures, and it doesn't do anything overall. When I have a TC I will note the day's events and preceding events and foods and people and things.
 
More journals

More smart phone apps have been popping up. Most are free or $0.99

Andoid Apps

Seizure Journal Apps
UK Epilepsy Society App. (has much more than a seizure journal, rich content)
My Epilepsy Diary
Epilepsia Journal

​
Medication Reminders
Other Apps
Epilepsy (visual explanation of seizures, causes, diagnosis, and treatment. pricey at 9.99)

EpDetect (Maybe somebody can test this one out by just imitating one of their TC seizures. It detects when someone has a TC and calls their caregivers/family. I have no idea if it works.)
​


iPhone Apps

Seizure Journals
Seizure Journal for Parents
My Epilepsy Diary (from epilepsy.com)
Seizure Diary
Seizure Diary 2.1
Seizure Log
Epilepsy Guide (from UK epilepsy society, also has first aid instructions and epilepsy information.)
​
Medication Reminders
Med Manager
Medication Reminder Pro
Med Trax (also tracks your doctors' names and appointments)
Pill Time (has a snooze function)
Medical and Medication Manager (Not a medication reminder, but tracks your medication list, lab results, other test results, radiology, allergies, and everything else. Next time you are at the doctor you can just pull this out...)

​
 
seizuretracker.com has a good app too that says is maximized for most smartphones

it's cool because (especially for parents, etc.) it has a "quick capture" utility that accesses the camera (faster than my iphone itself does... :-?) to allow you to keep videos if the phone has video capability

and it also compiles the information into graphs for you to be able to keep track of seizure events and meds


it's really way way better than the epilepsy.com one, but I have so much info in epilepsy.com I just stick with it. I should ditch it.

and it is FREE
 
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