Suggestions needed

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tkopi

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My Dr want me to keep a seizure diary and I would love to keep one. My problem is I have complex partial seizures most of the time, sometimes simple partials and my Dr wants to know how long they last. With my Complex partials I'm in la, la land afterwards for I don't know how long.
I am open to any suggestions on how to keep a better diary whenever no one is there to keep track of how long things last and what exactly I do during the seizures. Thanks
 
The only suggestion I can think of is the use of a video camera, we are all in la la land and they want to know how long, thats funny, sorry, I think a camera is your best bet.
 
If you have auras, you can try to use a stop watch. press the stop watch when you feel it start, and then stop it when you feel the seizure stop.

If you are post ictal it will give a sense on how long that lasts too if you forget to stop it.
 
I tried timing mine but my seizures always insure I lose track and am too confused after.

Does your watch (assuming you wear one) have a stopwatch function & if so is it simple enough that you only need to press 1 or 2 buttons to activate/stop it?

I actually decided I'd get a stopwatch just to time mine if I saw one for really cheap just for my seizures.
 
Eric, try looking at walmart. I saw one there not too long ago. Chad wanted one to time my seizures more acurratly, whit out having to watch the closck while Im seizing. this way he can press one button, and then put it down and help kme. Then press it again when it stops. I think it was about $5
 
Thanks Rae. My next challenge will be to remember to start when the seizure starts. I'm guessing within a week or so I'll have it down.
 
tkopi -- make your best guess for when the seizures start and stop. Even if you aren't sure, the information can still be helpful to your doctor.
 
I think any information is important. Even if its as small as an x on the calendar for seizure that day. but I suspect you can do even better than that. I would use all the suggestions above. Stop watch is a great idea. Keep pad and paper nearby at all times. And another useful tool as pointed out by silat is to color code things so you don't have to write them out n detail each time. You can put a blue dot for simples and such. Remember to chart any new foods or things you think set off your seizures :). I'm not sure how to time your partials except the stopwatch idea. Or at the very least write down the time on a price of paper when you feel one coming on. Then come back later when you feel better? Good luck. :)
 
Thanks for the help everyone I'll hopefully be going shopping this weekend for a stopwatch and I'll work out a color code too. Any thing else please keep them coming.
 
Unless there is someone there to see me have the seizure I don't know how long it lasted and I don't know what I've done during it.

Alot of times I don't get any type of aura or anything that lets me know that the seizures is coming on. If I do feel like I'm going to have a seizure I don't put two and two together until I come out of it and I've got a headache because I generaly always get a headache after one.

This is hard for me because I have a VNS (don't know if you know what that is or not) and I need to use the magnet before the seizure starts to try to stop it. I'm realizing now that if I just don't feel right then I'll just use the magnet

Sometimes I might be doing something before I have the seizure that I'll keep doing while the seizure is going on. I do alot of crossword puzzles and if I have a seizure while doing one I'll scribble all over the page. One time I even loaded the dishwasher during a seizure and had put the dishes and silverware in all the wrong places. These are a few examples. I still don't know how long the seizure lasted but at least I know what I did during it. I'll mark down the times too when I think I've had a seizure that there was no one there to see me have.


I've got a small calander that has a week spread out on two pages. It has each day made big enough that I can write down what I did when I had the seizure and how long it lasted. I highlight these days so the seizures are easy to find because I also write down dr's appts or other things that are going on in it too.
 
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I make notes in my phone that are always guesses of what happened. My husband and I can both contribute to it. He isn't looking for perfect more like a look into what I am living

Sent from my DROID RAZR using Tapatalk 2
 
If you dont have a stop watch handy and you do feel auras before you start the seizure, try and make a point of checking what time it is, then check again when it stops. I never had a warning, one second I was shopping, next second I was in an ambulance, never knew what hit me.

Weird part is, when I came to in the ambulance, it felt almost as if "Oh hi, w meet again and then I was out." lol When I came to in the ER, I felt awake for awhile but knew I hadn't been.
 
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