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Seizure Journal?

A MyEpilepsyTeam Member asked a question πŸ’­
Sydney, AU

How do you record your seizures and symptoms I would like to start doing that so I can explain in detail what happens to me during a seizure I know videos help and I have that covered but I remember a previous neurologist asked me to describe to him what happens during your seizure and I couldn't really tell him much.
Is there a template or journal you can purchase to help with that?

April 12, 2023
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A MyEpilepsyTeam Member

I have a seizure booklet that is supplied by the Epilepsy Association here in New Zealand: where I write all the information about the turn. Date, time, type, length, feelings etc... Many times, they may simply be witnessed by other people, and I add in the info. I also have a separate calendar that I put seizures on relative to my menstrual cycle since I have catamenial epilepsy. In the booklets it also stores the info of the medications I am on.

April 12, 2023
A MyEpilepsyTeam Member

My neurologist requested that I do the same, so if I felt an aura (heart racing) I will quickly grab my pad and start noting down where I was, what I was doing and when I started feeling an aura (heart racing). I would even note down how I was trying to relax with taking deep breaths, how long it lasted and if I got sick in the middle of noting things down I would just mention that in my notes when I was focused and back to normal. Many times I noted down what my son or anyone who witnessed it would tell me.

January 16
A MyEpilepsyTeam Member

i use to get a seizure journal but i stopped as soon as a started (when i was a kid). mostly cause i had uncontroled seizures and had a seizure many, MANY times per day. i know what to look for and writing in a journal every 1-3 hours.
(excample) (this is just a made up time and date but it is acurate for the 1-3 hours seizure thing)
had 4 seizures types at 4/7/93 at 4:23 pm... about 1 1/2 minutes... spaceouts (aura), lip curl (simple partial), mama phase (complex partial), blackouts (tonic-clonic)... aura is tingling from feet to brain, then i freeze and smell a commercal carpet cleaner... lip curl is the same as spaceout + the top lip pulls up, i get this 3 dots from the corner of my eye... mama phase is the lip curl + i can only speak ma, mom, or mama, i have a out of body experence, i walk without my knowledge... blackout is i pass out.
had 2-3 seizures types at 4/7/93 at 3:45 pm... about less than a minute... spaceout, lip curl, maybe a ma phase. space outs is tingling from my bottom legs to my brain, then i freeze... lip curl is spaceouts + lip curl... i had the 3 dots but i use my singing and seizures stopped.
had 1 seizure type at 4/7/93 at 6:17 pm... a couple of seconds... spaceout... spaceout is tingling from my feet to brain, carpet cleaner... deep breathing stopped my seizures.
had 3 seizures types at 4/7/93 at 8:01 pm... (ect)
my writing itself takes 5-10 ish minutes and i have to recover before i write (takes seconds to minutes to 1/2 hour (depending on the seizure type)). from seizures to journaling... i had no life and i said (excuse my languge) 'screw this shit' and just played with my friends.

April 13, 2023
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member
I have no idea when I have a seizure. My mom keeps track of everything. However, my seizure info is saved on my RNS.

April 12, 2023 (edited)
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A MyEpilepsyTeam Member

As Peanuts mentioned, keeping a journal or diary is a great idea. I keep one and write to it every day. There are a lot to choose from and you just have to select one that fits your needs. Here are a few, https://epilepsysociety.org.uk/sites/default/fi...
*https://seizuretracker.com/ This site allows you to keep either a hard copy you can print of seizures and medication. It also has a mobile app available.
*https://www.banzel.com/-/media/Files/BanzelPatient/BANZEL-SEIZURE-DIARY.pdf?hash=b4515150-8ae5-4299-9c89-36acce59226d
*https://www.medicalnewstoday.com/articles/319430
Hope you find one of these useful. Take care.

April 12, 2023

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