Tracking seizures, sleep, etc..

[Heavy Kevy]

I’m guessing most people have a journal they track their seizures in. I’ve been using the Nile app and it’s been good.
My question is what else do you track? I’m adding a note on how I sleep at night.

My energy levels don’t always match my sleep. I’m considering tracking days by how I’m feeling. Some days I just don’t have the desire to even do something that I enjoy. Mentally tired is my diagnosis
Tracking diet is another idea.

 

[suebear]

I've been using notepad for writing my diary. I built a directory named Epilepsy where I can note when an absence takes place of time, date and any side effects. I do have another directory called Meeting Notes that I enter any questions for the next clinic visit or I will enter notes from the visit I want to keep in mind like medication changes taking place. The smart phone has been a helpful item for me to keep notes since I carry it everywhere.

 

[Heavy Kevy]

Thanks Suebear, I may try using notepad.
I did laugh at my simple idea of using something similar to the pain chart. Just a simple emoji

 

[Sabbo]

Hello.
I prefer to use an actual notebook to record everything about my seizures. I've been using the same one for a LONG time--it's one of those Five Star notebooks, with a vinyl cover & spiral that is covered with fabric. It is smaller than the typical 8" by 11" notebook--it is 7" by 10".
I record the day, time/length and type seizure I had. If it was a complex partial & witnesses were there, I ask them to give me as much info as possible. If I realize that a complex partial occurred while I was alone, I note any injuries & differences that I see. At least 2 or 3 times I've actually changed my clothes during them!

 

[Bernard]

My wife writes in a physical notebook. She records the medicine and non-Rx supplements she took, what she ate and anything unusual (cramps at night, headaches, dizzyness, etc.). She used to record the amount of sleep she got, but her CPAP tracks that for the most part these days.

 

[Sabbo]

I recall something a cousin joked about shortly after we moved into our house--at that time I was having FAR MORE complex partials. My husband was installing security cameras, & she jokingly said that he should install them all over INSIDE, to help me keep track of my seizures. The strangest thing about those days was that my mother-in-law would usually be here for nearly half the year, & even if I had a seizure right in front of her, she would be 100% unaware of it.

 

[valeriedl]

I also keep track of my seizures in a regular notebook. I write down the date, time and length of the seizure and as much information about it as I can. I usually don't get any type of aura so I have to rely on other people telling me when I've had the seizure because I don't know, and what it was like. I've been walking around during them a lot lately. I type out my journal and give it to my neuro for my visits so he can see what my seizures were like and get the info about them.

Keeping track of things is a good way that could help you find things out. I'm trying to loose weight and I'm keeping track of what I'm eating. My mom went to a nationalist and she told her to do it and lost a good bit of weight so I'm going to try it too. I can see what I've eaten and things that might have caused my weight to rise so I try to stay away from them. Been doing some weight by doing it.

Write down what you've done during the day then how you've slept. You might be able to see if there's anything that you're doing that doesn't make you sleep good.

 

[Jafar]

I’m guessing most people have a journal they track their seizures in. I’ve been using the Nile app and it’s been good.
My question is what else do you track? I’m adding a note on how I sleep at night.

My energy levels don’t always match my sleep. I’m considering tracking days by how I’m feeling. Some days I just don’t have the desire to even do something that I enjoy. Mentally tired is my diagnosis
Tracking diet is another idea.

I have been having facial spasms/seizures for 6 mos., 1-2x per day. The doctors still don’t know what it is and I am having another MRI and MRA tomorrow. But in terms of tracking, I have kept short notes of date, tome, length, description of event, if I was on Keppra and how much. I then copied and pasted all ofif these notes into the GrokAI app on my phone and asked it to summarize patterns, trends etc. and was blown away at what it provided instantly. I shared this with my neurologist, along with the printed daily notes and I think it helped.

 

[cadsgj]

I find it rather interesting. I have a notebook that I maintain keeping track of everything of importance daily. Pretty much any time I talk to my neurologist and I tell him of issues that have happened but memory wise I really do not remember it in debth, he still does not need to look at my seizure day. Regardless, I still keep track of it all, just in case; one never knows if next time...

Alot is in my dailnsy pages like, blood pressure, breathing issues and meds if I opt to use for it, body pain, all health isssues, food I eat, etc...

It makes one feel good and push forward when there are things we should have done but opted not to, knowing there is tomorrow to fix our personal problems.

Setup of my days I setup in a note book where I have a setup for standard day things I need done. Many people I know say I fill out too much info thru my days fut for a memory problem guy like me, it is a good thbeneficial thing to do.

 

[CQ:)]

I note my seizures on the calendar app on my phone
My seizures are focal but I usually note the type of seizure eg woke with, had during day etc

When it's time to see the neurologist I used to put the seizures on a table with total amount of seizures each month and if they were particular type

I'd also make note if there was anything to be concerned about

As also get migraines info similar thing with my migraines

 

[Bernard]

... Pretty much any time I talk to my neurologist ... he still does not need to look at my seizure day. ...

Some docs only care if you are taking the meds prescribed and nothing else. Other docs are more interested in exploring data. They aren't all cut from the same cloth.

 

[C0urt]

My neuro mostly cares about blood levels than anything