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  #1  
Old 03-18-2009, 04:14 PM
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seizure diaries ???


I have gotten over the stubborness of not needing a sizure diary for jason's seizures....i know we should be keeping one as they arent stopping yet. my question is where the heck do you get one? i assumed that i could download a form or something to copy...not so easy i am finding out. the only form i could find is SO detailed that there is no room for anything else! what kinds of diaries do you use? just books with paper? forms to check off? etc etc.
i would love some input please

Last edited by jaysmom; 03-18-2009 at 04:18 PM.
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Old 03-18-2009, 04:23 PM
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Actually, if


you want, just plain old notebook paper works just fine. Some people use calendars, too.
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Old 03-18-2009, 06:27 PM
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Different things work well for different people.

I am somebody who likes everything in one place: My daily planner

Basically, because of all the meds I'm on, it is my brain. I take it with me everywhere.

What I found helpful for me is to buy the monthly calander page(s) (usually takes up two pages facing one another for each month). At the beginning of the year when I'm setting up my planner pages for the year, I clip these in at the front of each month.

The only thing that I put in the monthly calander squares are seizures, migraines, my menses, and illness. There is a side-bar for "notes" (I also clip in an extra blank "notes" page at the beginning of the month right behind the calendar). This is where I put detailed information: diet change, medication change, OTC meds. taken, unusual stress, sleeplessness, or anything else I may feel the need to document (and I always put the date beside it).

My doctor said that by not having too much information in the calendar squares, it makes it easy for her to look and get a feel for how I've been doing. We can then discuss details from my notes during the appointment.

Again, this is just my

Hope it helps a little.
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Old 03-18-2009, 07:56 PM
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I use microsofts excel program & use different colours in the cells to identify things like medications, seizures, or anything different from my regular schedule.

Here are a few to check out.

http://www.brothersoft.com/seizure-diary-219793.html

http://seizurediary.org/ These guys want $$ though

http://www.ovationshare.com/pg410_seizure_diary.aspx

http://www.epilepsy.com/seizurediary Here they ask that you become a member & because it appears to be online I don't know how private it is.
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Old 03-18-2009, 10:38 PM
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Thumbs up thank you!


i really like the daily/monthly planner thing....i am going to try that. i bought a blank book today and it really wasnt what i wanted. thank you.
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Old 03-18-2009, 11:39 PM
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Arrow


There are yearly calendars that comes with CD/DVD Rom
where it also makes the calendar available on your computer
and not just on your wall.

I find this absolutely wonderful! I would die if I didn't have
it! For when I start my computer - that calendar comes up
and lets me know about my appointments, and plus I can
put in the seizures as well as anything I want - and then
print it all out. My Doctors love it!

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Old 03-18-2009, 11:48 PM
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What I found was a calendar on one of the E sites.
I just print out about 6 at a time and fill in the dates. Then I use color pencils to help me designate separate events. When I write a seizure, I write tonic clonic 2.5 min 10:45 and put it in the AM of the square (towards the top) PM is towards the bottom. Then I take a lime green pencil and shade that area. Her TOM is another color over the date.

I make notes if I am adding in different supplements.
I make notes if there are nutritional challenges that I know of.

It sure makes it easy to see if there are changes from month to month
Also at the end of the year I make a 12 month view and mock up the months to give me an idea of which months were better than others. Then I can make notes of what conclusions that I come up with as to why.

I use this one... the only thing I find the pharma here useful for:

http://www.lamictal.com/epilepsy/pat..._calendar.html
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Old 03-20-2009, 12:59 PM
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I have kept an informal date and time of my aura events since the end of January. Last week I was started in Keppra and am now trying out the diary on epilepsy.com which is an online format. I also am trying out one called seizure tracker which is seizuretracker.com. ( I can't add anything yet that has weblinks yet since I'm still a fairly new forum member, so just Google those ones) Both are free. The seizure tracker one also has printable forms so thought I'd add that input as well.
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Old 03-20-2009, 05:31 PM
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I like the printed format, because I can grab and go, quickly.
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Old 03-21-2009, 07:04 PM
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I use good old fashioned notebook paper. It lets me write down things and go into detail.
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Old 03-21-2009, 07:10 PM
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I just use my computer and e-mail my doctor and nurse.
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Old 03-21-2009, 10:52 PM
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thank you for all your input and suggestions. as for now, i have started to write things down on plain paper as i can not find the monthly planner that i want. at least they are written down. i live in a small town where believe it or not, a monthly planner is hard to come by. but when i find one, i will just transfer things over. i like to grab and go as well.
thank you again for ideas!
chrissy
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Old 03-22-2009, 09:29 PM
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I just use a notebook.
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Old 03-22-2009, 09:50 PM
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Originally Posted by hawke86 View Post:
I just use a notebook.

i thought you used you computer???
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Old 03-22-2009, 10:01 PM
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I use both.
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Old 03-24-2009, 08:36 AM
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I used a daily planner, where each page was 3 days. We wrote everything down, times he woke and went to sleep, times we gave him meds, what he ate and when and how much, weather changes, naps, drinks, activity, really just about anything.

We did this for about a year, then stopped. It was making me crazy with studying it to find correlations b/t seizure and it led to nothing. No similarities to idea of how to stop it nothing. Everything was random.

It works for lots and lots of people but all it did for me was stress me out more than I needed to be.

Try it you have nothing to lose
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Old 03-24-2009, 10:53 AM
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I just write it down in a day planner. I've tried to look for correlations etc but it's just too difficult to pin down a cause. Over exertion, lack of sleep, stress, poor diet, etc... if these were the only triggers then it would be possible to find a pattern, but I also have random seizures so it throws it all out the window.

But it's still good to keep notes I find.
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Old 03-25-2009, 10:37 PM
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Jaysmom,

I use both my computer and a notebook, my doctor wants me to keep track of my seizures,meds, and my migraine headaches. and when I was have my cycle I had to log that down because that is when my seizures were really severe with my migraines.

just log it down on a calendar, or notebook paper.

CHEROKEE09
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Old 03-25-2009, 10:58 PM
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I have been just adding my notes to my Blackberry contacts... always have it with me, so it works...when I remember

I need to do a better job of getting them all down before i see the new doc next month
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Old 03-26-2009, 02:27 PM
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My family and friends write down on paper when I have a seizure, Date and Time and remind me to log it in to my seizure log.
Doing something like that does help.

I have done the same thing, about forgetting to log down a seizure,
so don't feel bad, we all make that mistake.

CHEROKEE09

Last edited by CHEROKEE09; 03-26-2009 at 02:30 PM.
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