How do you track your seizures

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eric_HH

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Hi Everyone,

I am curious how all of you track your seizures. I've taken a look at some of the apps that are out there and not been super impressed with them. Do you guys track your seizures? Do you use an app to track your seizures? Any suggestions on good ways to track seizure patterns?
 
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eric_HH

I think the best way to track your seizures is with a pen and paper. Not quite sure exactly what kind of app you are talking about. Still pen and paper the best way.
 
Do you record all of your seizures with pen and paper? I have trouble remembering to write things down. I was thinking an iPhone app of sorts might help with this.
 
For years, I've noted my seizures on my calendar, at home and the one I keep in my purse. I've done it this way for years, before they came up with the seizuretracker.com. It's the most practical for me. It's much easier for me than the iPhone app, too.
 
I've been tracking things in an excel spreadsheet. What are your favorite parts about seizuretracker.com? What do you do if you are out and about if it's not an app?
 
I don't record anything until I get home. If I do forget a seizure, so be it. But as I said, the tracker can be used on your phone when you're out.

I just prefer to use my PC to track seizures because I'm so often in front of it. I also like the fact that it generates graphs because that makes spotting trends far easier. It's also much faster because I just need to click on the seizure type, time and so on instead of writing it up. And it's available to my doctors, so I don't have to worry about leaving it behind when I have an appointment.
 
Fedup said:
I think the best way to track your seizures is with a pen and paper. Not quite sure exactly what kind of app you are talking about. Still pen and paper the best way.
Click to expand...
I'm the same Fedup,
I've always used a notebook to keep track of my seizures/funny feelings then when I have an appointment with the neurologist I just type them up on the computer & print it out for the neuro.

If I have a seizure when I'm not at home as soon as I feel up to it I either write on a piece of paper or make a note on my phone what happened then when I get home I transfer the info into my notebook.
 
I keep a list on my computer with descriptions and dates for my daughters seizures. i used seizuretracker.com 's app a few times but their app had an error and deleted the videos i took of my daughters seizures. I contacted the creator and he felt bad but couldn't help. So i went back to video taping them normally when i need to and the list on my computer.
 
I used seizuretracker yesterday and entered the past three months worth of seizures on it. It's great! I saw patterns that I have never noticed before. I'm glad I know about it now, and I wish had had it for years. I'm gonna enter my 2013 seizure list onto it and see if those patterns hold. I will also take the reports to the epileptologist when I see her next month.
Thanks Kirsten, for telling us about it! (If someone else has talked about it before, thank you to you, too. This thread I have known of it.)

Cheers!
 
arnie said:
I used seizuretracker yesterday and entered the past three months worth of seizures on it. It's great! I saw patterns that I have never noticed before. I'm glad I know about it now, and I wish had had it for years. I'm gonna enter my 2013 seizure list onto it and see if those patterns hold. I will also take the reports to the epileptologist when I see her next month.
Thanks Kirsten, for telling us about it! (If someone else has talked about it before, thank you to you, too. This thread I have known of it.)
Click to expand...

Here is a website listing ways to track seizures:

http://www.epilepsy.com/get-help/managing-your-epilepsy/tracking-my-seizures/using-seizure-diaries

The www.epilepsy.com is a very useful, informative website.
 
No worries, Arnie. If you check the valet option, you can invite your epileptologist into your pages so he can view them online.
 
Fedup said:
I think the best way to track your seizures is with a pen and paper
Click to expand...

:agree:

i have a daily calendar (write down everything i do from work appts to shopping to seizures), and have a specific spot where i write down (or used to ;)) what type of seizure i had, what time of day, and if there was/wasn't an obvious reason, aka 'didn't sleep lastnight' or 'had a bad fight' or...
just to keep track of stress and other triggers.
 
First we have a monthly calendar in the kitchen that we circle the date that I had the seizure and how many I had.

Second I have a weekly pocket calendar that I keep in my purse. I write down when the seizure was, how long it lasted and what I did during it. I try to write these things down shortly after the seizure so I won't forget them. If I don't remember any of the info about the seizure then I just mark that I had it.

When I go to my neuro for visits I print him out a list like this:
Month - How many seizures I had
Date the seizure - What I did during it if I know. If I don't know what I did during the seizure then I word 'seizure'.
I also write down any after effects like a headache or very tired.

All of the medicines I'm on, epilepsy related or not.

I also put on it if anything happened during those months between visits. If I had gone to a dr for something, the date it was and of they had prescribed some sort of medicine they may have given me and how long I took it. I also mark down any surgeries, rashes (that I may not have gone to a dr for) or anything else that I feel is important that he should know about.

He likes that I do this.

I used to keep track of everything on a Palm Pilot that I had. It died in the middle of the year so I lost all the important information. The only way that we knew when and how many seizures I had was from the monthly calendar in the kitchen, we didn't have any details about them. This is why I prefer pen and paper now rather than something electronic, I learned the hard way.
 
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I track everything in excel spreadsheets that I designed like a calendar. I uploaded blank pdf calendars on my website that you can download and print to use to track activity.

I've set up formulas and graphs in my spreadsheet and usually print them off to take with me for drs appts.
 
Goodness, i thought I was so detailed as I wrote down info, dates and times of my seizures. I take my written data for seizures and notes in a notebook to my neurologist, and he reads them and sometimes copies them. Hmmm... I've tried a couple apps and for me they didn't work well. Tried using a couple programs on my iMac and PC but again for me, neither was as good as my notebook. I'll go with Fedup here. :cheers:
 
I usually mark on my calendar a big S with a circle on it and for a more detailed report like time of day, what I was doing, and why I. Thought I had it I.e. Stress, lack of sleep, etc. I have a notebook marked Epilepsy which I keep handy and have a page for each seizure and how long since the last one.
 
well done mary, all the detail you need :)
funny too, in my calendar i write a big S.P. with all that same info. ha, fun one day to sit and compare notes.
 
cadsgj said:
Goodness, i thought I was so detailed as I wrote down info, dates and times of my seizures. I take my written data for seizures and notes in a notebook to my neurologist, and he reads them and sometimes copies them. Hmmm... I've tried a couple apps and for me they didn't work well. Tried using a couple programs on my iMac and PC but again for me, neither was as good as my notebook. I'll go with Fedup here. :cheers:
Click to expand...

I keep track of this in my calendar but type it all out on the computer (my writing is horrible) and give a copy to my neuro to keep. I have a 3 ring binder that I print out a copy of these things and keep for me in that too. It's easier to look and find things that may have happened 3 years ago in that than trying to find it in the calendars.
 
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