[Info] Tracking the Brain

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RobinN

RobinN

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The film portrays the true story of Evan Moss and his battle against epilepsy and Tuberous Sclerosis (TSC) and how his family turned their hardship into something useful for everyone afflicted with epilepsy. The film tracks Evan from birth through his brain surgery to remove 3 tubers at the age of four, and his parents who turned their frustration into SeizureTracker.com, an online tool for logging seizures and medications.

 
I started using seizure tracker today. I inputted back about a month,too, from my handwritten seizure journal. Seizures scramble my brain and this makes it really easy to organize things for my doc and keep track of it all.

I thank you. I bet my doc will,too.
 
I am glad that the info is useful. Here is the contact info, if you want to thank the designers:

Contact Info:
via email: info@SeizureTracker.com
via mail:
SeizureTracker.com
7964-R Conell Court
Lorton, VA 22079
 
Yesterday I transferred my information from my handwritten seizure journal to the online Seizure Tracker. I ran one of their reports and found a pattern I hadn't seen before. My seizures can happen any time of day, but there is a greater concentration between 2pm-4pm, and 2am-4am (nocturnal). Interesting. Also saw I'm medicating post-ictal migraines a lot less than I thought I was, which is a good thing. Those reports are handy!

I agree, it's important to have paper, too, because I'm not always near a spot I can hop onto wifi and get online. I'll jot things down and put them online when I get home. I know my doc wants a printout, not the link that you can email and the doc looks online. Wish they had a better print function.
 
I've posted this elsewhere, you might find it interesting Endless. Looks like you're "off" by two hours :)

Studies have shown a correlation between the area of the brain where the seizures originate, and the time of day:

-- Occipital seizure occurrence peak between 4:00PM and 7:00PM
-- Parietal seizures peak between 4:00AM and 7:00AM
-- Frontal lobe seizures peak between 4:00AM and 7:00AM
-- Mesial temporal lobe seizures have a primary peak in the late afternoon between 4:00PM and 7:00PM and secondary peak in the morning between 7:00AM and 10:00AM.
 
yup, I fit right in with the mesial temporal lobes for peaking. but what is mesial?
 
Very interesting.

The article mentions extensive scarring - so this would show up in an MRI, correct? If so, I'd be happy to know this isn't my problem - I only have a couple of little plaque spots. But anybody that shows scarring, mentioning this to their doc would be a good idea.

The info does beg for more research for a noninvasive cure. It seems there should be a drug for that, rather than resorting to massive brain surgery. I wonder how much of the existing research out there will benefit epilepsy patients?
 
I show scarring but not where the picture is. *I think* he described it as right near my right eye brow closer to my temple. but I fit reight into the mesial time slots. 5:30-8:30is and in the moring 7-10am
 
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