Made my neuro happy

[valeriedl]

I keep track of all my seizures in a notebook but I print it out for my neuro on the computer like this:

All of the meds I'm on and times I take them.
Month and number of seizures I had
-Date and time of the seizure
- How long it lasted
- What I did during it
- Stared
- Shook
- Walked
- Talked
- Fell
- Did something out of the ordinary
- And anything else that might be important

I do this again for each month and seizure I've had. I also put anything I want to ask or tell him about on it, if not I'll forget. I keep a copy for myself and give one to my neuro

When I saw him at my last visit he asked me if I had 'My fancy paperwork'. I gave it to him and asked him if anyone else did anything like that. He told me that I'm the only one and it 'just tickles him', his words not mine. He said it's wonderful because we don't have to spend so much time looking for and trying to remember information, we can just get right down to things. He even keeps the copy that I made for him in my records.

I started doing this because my notebook seizure journal isn't that great. All the info is in there but I might have forgot to put something in about a seizure so I add it to another page and then I'd realize that I didn't tell my neuro about it until I got home. My hand writing is horrible too, I'd spend a ton of time just trying to decipher a word.

You don't know how happy I was that I made my neuro happy!

 

[CQ:)]

That's great Valerie

I used to keep a seizure journal, before my surgery my old neurologist liked to know all the details eg what i was doing when I had the seizure & it ended up being long.
When I started having the funny feelings after the surgery my neurologist at the epilepsy clinic asked me if I could keep it brief.
So I used to have the date, approx time it went for, if I knew of any triggers & brief summary of what happened eg funny noise & wrote gibberish. I usually write gibberish afterwards so would also put a copy of the gibberish & a translation lol.
I used to also type this up on the computer & give it to the neurologist & a copy to my neuropsychologist (who I also see at the clinic).

Last year I had a VEEG where they finally found that I am having focal seizures, after the VEEG the neurologist said they won't need to see the gibberish any more now they have answers. All my neurologists ask for now is a copy of how many seizures I have a month but if there is anything which is out of the ordinary I do have to note that. I also make note of the meds I'm on (I'm only on epilepsy meds but it's easier to just note them down).
I've had a few different things happen since my last visit to the epilepsy clinic in May so a couple of the months I have a little more detail.
I also have a list of questions or stuff to discuss with both the neuro & neuropsych.

 

[seizuregirl]

Wow! If I could only be as organized as you are.

I've tried so many times to keep a seizure journal on my laptop and in a diary and have failed all of them. I would start them and I would forget about it, both on my laptop and the one I would buy in the store, I would lose it somehow, or my nieces and nephews, the young ones, would try to to "help me" by coloring in it. And it wouldn't be a couple of colored pages, they would color almost all of them, and not just with crayons, that would've been easy to keep using it, it would be with a pen or marker so they can, "Write just like you do Auntie!" when I would forget to put it back on the top of my dresser.

And when I tried to use my laptop, since I only use it to go online, I would again forget about it. Even with the reminder that I had set to pop-up after logging on I end up ignoring it.

I tried to keep 1 again when I started seeing my new dr and have lost it. And I've looked everywhere, my whole bedroom, hallway closets, even my sisters' room, and I still can't find the darn thing.

The only thing I could do with it is try to keep track of what time it was when I took my meds, morning/night, and the few times I was informed that I had a seizure by a family member, or I would guess as to what time one happened when I would wake up in the morning with a wet bed.