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Old 09-23-2008, 04:55 AM
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seizure journal question

If you keep a seizure journal, what do you use to decide what you record or don't record. I've been keeping one since I overcame those side effects from my last dosage change

What I'm doing is not recording any solitary twitch unless I notice a lot of little twitches in a time period or a big one in the same time period. Or unless something tells me its definately a seizure - ie seeing the skin on the back of my hand jump up. Basically I'm giving it a 3 second minimum for twitching. I record any screaming hiccup regardless of how short it is

This is keeping me from over-reporting, but I'm also wondering if its causing me to under-report whats going on.

I'm noticing some triggers I hadn't noticed before, but nothing unexpected - the garbage truck back up alarm means ringing ear, roommate opening bathroom door means a hiccup (seemingly due to sound not light as originally thought), and turning off my bedroom light means a lot of solitary twitches until I fall asleep.

Last edited by darkmarkshark; 09-23-2008 at 04:57 AM.
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Old 09-23-2008, 06:47 AM
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along the way, I WOULD make a note about how all of these solitary twitches DO happen. And then, make reference to it when needed......but truthfully, it would just be better to make a note of them when they happen.........
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Old 09-23-2008, 08:02 AM
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It is difficult to always have your journal/calendar on hand. What you might consider doing is twice a day, just write an entry as to how you have felt. What you noticed, and specifics when necessary. You need enough information so that when you look at the entries over a months time, and then over a six month time period that you would be able to grasp what is happening, and then hopefully why.

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Old 09-23-2008, 11:05 AM
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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. Between the two, we started noticing some patterns.

Basically, I'd recommend recording anything you think might be related to your seizure activity.
New to CWE? I suggest reading the proactive prescription and epilepsy 101 threads. Also check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback. More great stuff can be found in the list of the best forum threads.

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