How do you diary?

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Natalie67

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Hi All,

I'll be honest - I'm not the best diary keeper. I've tried it for Weight Watchers, for sleep, for The Artist's Way (awesome book), but I'm really bad at keeping it up. But it seems key in this case, so I want to make it as easy as possible. Otherwise I wind up with cryptic post-its on my desk and notes on my phone. A phone app seems easiest, because my phone is always with me. I see a few apps online. Any thoughts?

Thanks, as always, for all the support!

Natalie
 
Hi Natalie

For me the type of diary I keep depends on how much information the neurologist wants to know.

My old neuro wanted me to note down as much info as I could from what I was doing when i had the seizure, witnesses & rough time, triggers etc. I didn't have a computer or mobile when my seizures 1st returned (2002) so I used to keep a note book which I kept for the 9 years I saw that neuro up until I had my surgery.

I had surgery in 2011 & was seizure free for 2 years but started having 'funny feelings' again in 2013. While the neurologists I go to now tried to work out what these funny feelings were they asked me to monitor the funny feelings, make note of what happens but keep it brief. Eg they just wanted to know the date, brief summary of what happened, how long if I knew & any triggers. I used to make notes on my laptop, I also write in gibberish during a seizure so used to make note of that as well. When it was time to see my neuro I would just print off copy of my word doument. Even though the neurologists thoguht I was having seizures they weren't sure of the top so I had a VEEG in July last year which confirmed I was having focal seizures.

Once they confirmed the type of seizures I was having the neurologists were happy with the info they collected & what I gave them. As my seizures are usually the same the neurologists now just like to know how many seizures I have a month. I have a calendar app on my phone which I only use for when I have a seizure, once Ive had the seizure I make note that I had one then tally up how many I had at the end of the month. But these last couple of months the seizures have changed a little so I've been making notes as to how they changed so i can discuss it with my neuro when I see him in a couple of weeks.
 
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Hi Natailie,
What I do is buy a small calendar and then I have my own code system
A-absence sz. CP- complex partial sz. M-myoclonic sz. etc.
I write down the letter of what type of seizure I have and what time it happens then at the end of every month I add up all the seizures for that month and write that down at the top of my calendar and then I write down how many seizures I've had for the yr. by writing down Jan-Oct. 2016 30 seizures Total. Also I have written down when I started and stopped my monthly cycle or if I'm sick or changing any meds. this has helped my Dr. pinpoint a lot my seizures and it also shows the pattern of my seizures. Wishing you well and May God Bless You!

Sue
 
How To Get and Use Epilepsy Diaries

Anyone interested,

I did some research and asked some questions about 'Epilepsy Diaries', these links may be helpful:

www.aesnet.org/for_patients/epilepsy_diaries
www.hotukdeals.com/freebies/free-epilepsy-id-cards/and-seizure-diaries161351

Check out EFA's website(efa.org) to find instructions on how to use an Epilepsy Diary

I have a friend who works for EFA and sent her an email to see if EFA has anything like an Epilepsy Diary available for people. I should find out in a few days.
 
EFA has the My Seizure Diary app. Some people really like it. It doesn't map to how I track things so I prefer my trusty paper calendar that I have used. Note I track things for my daughter for seizures and another condition as well as other things for rest of family so multiple diaries would be cumbersome. I have a symbol or letter that I write in, circle and jot in the approx time. Each seizure type has a different notation. Nothing else gets circled. But I have a lot of other short hand notations for a variety of events to see if something is related (sleep issues, other health condition events). I consider changing things if things change, e.g. disrupted sleep is now nearly daily so I switched to noting uninterrupted nights. I have a little three color highlighter that I use for other notations.

I do keep other stuff on my phone and computer so I'm not technologically challenged, just older school when it works - my comp sci degree does predate the browser age but I am an early adopter if it solves a need.
 
My "typical" seizure is always the same with a few random exceptions (very few). Instead of having to carry a notebook with me, which wouldn't always work depending on what I'm doing, I use my laptop. Obviously I'm not always around my computer, but for a typical day I keep my laptop in front of me even if I'm not working.

I've tried out an online journal with the phone app and didn't like it. So instead, I just wrote my own program. The seizure logger program itself has only 4 buttons: "Typical", "Typical small", "Meds" and a quit button. I used to log the times when I took my meds but now I don't even bother with that. The main thing is really to make a rough guess of the time the seizure happened. Even that's not really important to me. Just so long as the date is right. The data gets logged into a text file, and I wrote a program to analyze the results. Basically it all boils down to the number of seizures I've had on a particular day. I've logged as many as 30 seizures in one day all the way down to none. The logs are clear enough for my epileptologist to work with and because of this I was weaned down off my lamictal because it was actually causing me to have more seizures. My system seems to work well enough as-is so I haven't bothered changing it even though I could if I needed to.

It would be perfect if I could just carry a little button with me that I could press when I have a seizure. I'll often have seizures while in a car or on my bike for example. I try to do my best to note down the times. If it's convenient I have a small notepad app on my phone and I'll note down the time/date and record it manually into the log when I can get back to my laptop.
 
resaebiunne said:
It would be perfect if I could just carry a little button with me that I could press when I have a seizure.
Click to expand...

You don't by chance play Pokemon Go, do you? That sounds suspiciously like a Pokemon Go Plus. :)

These are all great ideas. I have an appointment with my neurologist today, and am going to ask him about what kind of things he would like me to pay attention to. I think it's important for me to pay attention to diet and sleep - let's see if he adds anything.
 
New Diary For People w/E!

I just heard back from my friend who works for the Epilepsy Foundation of America with this link:

www.epilepsy.com/get-help/my-epilepsy-diary

This is what many people have been asking about when it comes to keeping a diary about when/how your seizures happen. It has a place to record your triggers, remind you to take medications and many other things that can be very helpful!
Check this link out if you have any questions about keeping a diary about your seizures! There is a video that shows what you can do with the diary. You can keep track offline(phone) and transfer this information to your computer to keep everything together so you can just print it out to take with you so you can show your doctor when you have an appointment! :clap:


acshuman
 
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turns out my epilepsy diary has been superseded

excerpt from an announcement this year (see http://www.epilepsy.com/release/201...aunches-new-digital-web-tool-my-seizure-diary ):

With the launch of “My Seizure Diary” encompasses many new updates to the Foundation’s previous myepilepsydiary U.S. version, originally started by the Epilepsy Therapy Project in 2006. The Epilepsy Therapy Project merged with the Epilepsy Foundation in 2013.
 
I just use a basic calendar program like Microsoft works calendar or the calendar included with Mozilla Thunderbird.

I just list the time, location, type of seizure, and what I was doing.
 
Porkette said:
Hi Natailie,
What I do is buy a small calendar and then I have my own code system
A-absence sz. CP- complex partial sz. M-myoclonic sz. etc.
I write down the letter of what type of seizure I have and what time it happens.
Click to expand...

This is a good idea because most phones do have a calendar app on them.

I keep a little note book at home and after I have the seizure I write down as much info about the seizure as I can. I don't wait too long after the seizure or I'll forget what I did during it and it will only be put as something like 'complex partial'. Before my visit I type everything out on Microsoft Word - The month and number of seizures I had that month, the date and time of the seizure and what I did during the seizure. This is what I give to my neuro so we can talk about.
 
I think I'm going with the My Seizure Diary for now. After talking to my neurologist, we decided that I need to track my diet, and I prefer to do that in Microsoft Excel. This app has a nifty document attach feature that lets me stick what I ate wherever I need to put it. And I can get it from my phone, or any computer I'm near, which increases my chances I'm actually going to use it. :woot:
 
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