This is your seizure diary!

[valeriedl]

I went to see my neuro today and met with his intern first for just a general examination and to make sure all the information was right that they had on file for me.

When I handed him the information I give my neuro along with my seizure diary since my last visit he looked at it, his eyes bugged out of his head and said "You did this? You are very organized!"

I have it all typed out on the computer. On the first page I have all the meds I take, the dosages and times I take them. Any surgeries I had, when I had them along with the drs names and phone numbers. Any allergies I have or testing that I cannot have, like an MRI because of my VNS. My pharmacy's name, address and phone number.

The next few pages are my seizure diary. It's set up like this:

Month - How many seizures I had that month
- Date of the seizure, time it happened, what type of seizure it was,
- how long it lasted
- anything that I did during it - like walk around the room, talk, shake, headache after.

On the last page there is a list of my medicines with the number of refills left and if I need any refills.


I guess most people don't keep track of things as this good.

(I just wanted to brag a little too about this )

 

[bandmom]

That's great that you're so organized! I struggle to get my daughter to keep a seizure diary, we've tried many times but she won't keep it up and I really don't think I should be doing it for her even if she does tell me when she has seizures (she's 22). Maybe she should do it like you do on the computer. She says lately that she forgets the seizures really soon after they happen because her memory is so bad. After work she can't tell me if she had any that day because she doesn't remember, so she has to be able to put them in the diary right away when they happen.

 

[valeriedl]

If she's not doing it then I feel that you should no matter what her age is. They need to be kept track of and told to the neuro so he knows what's going on and be able to treat her better.

I start out keeping things in a small note book calendar that I keep in my purse. If I have a seizure and know the details of it then I write it down. If I only know that I had one then I just write down I had a seizure. I write it down as soon as I can after the seizure so I don't forget anything about it.

My husband also keeps track of my seizures on the wall calendar. There aren't any details wrote about the seizure on there only the number of seizures that day.

So between the two all of the seizures are kept track of.

If I'm home alone I only know that I've had the seizure. So on those times I only have the word 'Seizure' wrote down and if I know when I had it in the day it happened. This could only be 'morning', 'afternoon', 'evening', not a specific time.

I know there are web-sites that can help you with making a seizure diary. I tried to find the posts that had the links to them but I can't. Hopefully someone can help you with that.

 

[seizuregirl]

If I could only be as organized at your are. I'm trying to keep a seizure diary and the only thing i can do is write, sometimes, when I took my morning dose and/or evening dose, or guess at about what time I think I had taken it because I'm dealing with my niece and nephew in the mornings and don't have the time to look at the clock after taking them. Sometimes I can write down when I had taken them because they're still tired and are sitting peaceful in the living room or are eating breakfast themselves so I can run into my room quick and do it.

And in the evenings I'm just tired as all hell and also trying to make dinner for my Father, Twin and myself after my 2nd dose to stop, run into my room and write everything down. So when I notice my diary later, I'll will again lol, guess! And I know I've taken them since they aren't in the pill box on my dresser.

And when it comes to my seizures, it's only when I find my self wet can i then write down that I had a seizure and can only guess at about what time i had it since I'm never aware of having them unless i have a family member with me, who's 10yrs or older, tell me that i had one if i didn't have a mess.

 

[valeriedl]

Taking your meds and taking them on time is a major thing that you have to do. If you aren't doing this then you are probably going to end up having a seizure.

Do you have any type of alarm that you can set to make sure you take your meds on time? I take my meds 3 times a day and have an alarm on my cell phone set for all three times to make sure I take them and take them on time. If I didn't have that I can't even tell you how many times I probably wouldn't have taken my meds on time or even taken them at all.

Can you try to take your meds at times that are easier for you? When you are less busy? If you're running around doing all sorts of things when you normally take them then there is a very good chance that you are going to loose track of time and end up not taking them. I take mine at 7 am and 7 pm. I also take one at 1pm. I'm usually not doing anything then but I don't really have a whole family to be taking care of.

 

[seizuregirl]

I take my meds at the same time almost everyday Mon-Fri. My morning dose is between 7-7:30, I take them with the milk from my cereal. I've found that if I don't take it with some kind of food in the mornings I end up with heartburn-like symptoms and the food or milk helps prevent it. Come the weekends, it'll be around 8, no later than 9:00 in the morning that i'll take my morning meds.

For my evening meds it'll be around 6-7:30pm. Thank goodness I don't have the heartburn symptoms like I do in the mornings, I'm sure it's because I snack through-out the day so there's always a "cushion" for the meds to land on.

It's really just writing everything down that I have the problem with. I've never had that push in me to be organized like that!

 

[seizuregirl]

I've tried have alarms to remind me to take them. And if an alarm goes off I'll just glance at it, and if it's something that I see everyday, other than my morning alarm to get out of bed, I just shut it off. But if it's for something that I don't do everyday, just once in awhile such as getting ready for different family coming to visit, or going somewhere such as to an Uncles, or my Grandfather's house I'll take note of it and do what I need to do.

 

[bandmom]

So you put them on the calendar first, then later do it on the computer. It's helpful to hear how you do it. I try to mark down seizures when she tells me about them on a notepad that we keep in the living room. With her memory issues it does seem like I should help her keep track, but she'll need to text me or something when she has them at work if she won't write them down herself. Is the online one called Seizure Tracker, I've seen a post about it here. Seems like it would be easy for her to do that on her phone.

 

[photoguy]

Take a look at the epilepsy diary from epilepsy.com It also integrates with iPhone/Android phones (so you always have it with you. Works great....

https://my[dot]epilepsy[dot]com/diary/login-page[dot]php

 

[arnie]

I kept track of my seizures for decades, but only the times and dates and med dosages. For about ten years I kept track of possible triggers but never found any patterns there so I stopped looking for triggers but continued to keep track of the seizures. It wasn't til I entered all that info on https://seizuretracker.com/ and saw it in a couple of different graph forms that I actually found a pattern that enabled me to make the med changes I needed to do to stop the seizures. It's been nine months now with no seizures. For comparison, in the 9 months from June to February of 2013 to 2014 I had 155 complex partial seizures, which had been pretty much the norm for over 30 years. From June 2014 to the end of Feb 2015 it's been zero.

Raw data on your seizures, no matter how complete, is not really all that helpful. It needs to be put into a form where you can actually get a handle on patterns that may be present in the data.

 

[valeriedl]

When I was first diagnosed with epilepsy we didn't have high speed internet where I live and cell phones were just cell phones nothing fancy (man do I feel old saying that!). Keeping track of my seizures in a notebook calendar is how I started and it's just how I've kept doing it. I've looked at the websites but really don't understand them (again I feel old).

In the calendar I do keep a sort of 'diary too'. I write down things that I've done that day. For example places I've gone, things that I've done around the house, things that I've eaten that are out of the normal, if I did miss meds and so on. This helps to know what could have brought on the seizure.

By doing this I can tell what could have possibly brought on a seizure. Stress, lack of sleep, over exerting myself (scrubbing the floors for example), food or other things. I always write that down on the paperwork I give my neuro too. These things do cause seizures for me but a good bit of time my seizures just come out of nowhere though with no trigger.

 

[Joyful]

Hi! I keep a seizure diary, too. Years ago, when I first started doing it, my dr. was very impressed, so I kept it up. It helps me as well as the dr.
Recently I began including a food diary & also what the temp. was outside that day. (cold weather affects my seizures sometimes)
I also include my meds, if I took them on time, etc. I don't put how long the seizures lasted, just whether it was a grand mal or small jerks or whatever.
btw My husband is really great w/ all of this. He comes to every dr. appt. I have and explains it all to the doc in case I have forgotten something. That way the doc gets it from both my point of view and my husband's. I could have never come this far w/o him.

 

[valeriedl]

My husband is really great w/ all of this. He comes to every dr. appt. I have and explains it all to the doc in case I have forgotten something. That way the doc gets it from both my point of view and my husband's. I could have never come this far w/o him.

Same here. You can't believe, or maybe you can, how much stuff that he can answer that can't at all. I don't know what I'd do with out him!:hugs:

 

[Joyful]

Yeah, it's great to have someone who really cares.