Seizure Diary

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daisy.girl

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Can you guys give me some ideas of how you keep your diaries?

Do you use just a notebook, or daytimer calender?

Do you document each and everyday or only when you have a seizure? How much detail?

Do you include migraines?

I have been jotting things down, but I think it is time I begin one!

Does your doctor actually read yours??

thanks :)
 
I print out a calendar:

http://www.lamictal.com/epilepsy/patients/resources_and_tools/seizure_tracking_calendar.html

and I keep track of each and any little thing that I feel is relevant. TOM, junk food intake, mood, sleep patterns, emotional, etc.

I made up a color code for the different events, so that I know that seizures are highlighted (with a colored pencil) by a lime green. TOM is a burgandy pencil. It helps me to quickly see what is going on.

Then after the first two years, I decided to take it as a year in review, and did a 12 month calendar (handmade) with the most important events posted.

There is also a company that makes a SEIZURE TRACKER

HTH
 
thanks....
would love to see a sample if possible. my question is, do I write: "I was lying on the couch between awake and asleep and my heart began to race and I saw sideways shapes in my vision.....etc...."
or do I just code seizure on that date??
 
I have a pocket calander that I use to keep track of everything. If I have a sez I mark it down and high light it to make sure I don't miss it when I make this paper for the neuro.

When I go to the neuro I type out a paper that is basically like this:

- The date of this visit and the date of the last visit.

- All the meds that I am on (not just the ones for sezs)

- The date that I had the sez, how long it lasted, where I was at the time, what I did during the sez (shook, drooled, mumbled when I talked, stared and didn't say anything, was really confused etc...). If I had a headache afterwards or if I didn't, I will get those sometimes. I'll also write down anything else that I think might be important, if I was taking any other type of meds at the time (cold meds, pain meds or anything else). I figure I can't put too much info down because there might be something that might be important to him.

- I'll write down the date and time that I think I might have had a sez. Usually I don't know that I have had one unless there is someone there to see it happen. Sometimes I'll get an odd feeling that I don't know if I went into a sez or not but I mark it down. There was one time that I was alone and putting the dishes away. About an hour after I was done I went out to get a plate and noticed that everything was in the wrong place in the cubbords and drawers so I figured I must have had one.

- I'll write down too if anything else was going on with me. If I had been getting dizy spells, double vision or blurred vision or something that might be happening to me that was out of the ordionary. I'll make sure I put down the date when this happened and how long it went on. I had been getting dizzy spells for about a week but the double vision lasted only about 2 hours on one day.

- After all the sez info I write down if I had gone to see any other dr, the dentist, regular dr, dermatologist. The name of the dr and his phone number incase he would need to get ahold of them for any reason. And if I had gone to see them for a peticular reason or if it was just for a yearly visit. And if they had pescribed me any type of meds, even if it was something over the counter. Alot of times the dermotologist will do that.


- I'll write down anything else important after that incase he may want to know.

- I make sure too that I write down any question that I want to ask him so that I don't forget.

- I write down how many refills I have for each med and if I will need a pescription refill for any of the meds before I will see him for my next visit.


I print out a copy for him and a copy for myself. I keep my copy in a binder so I have everything I need to know right there incase someone needs to know something that happened months ago I don't have to search around and try to find it.

As I said above I don't think I can give him too much info. He really likes the fact that I do this so that we don't have to sit around for 15 min asking me all the questions about each sez, I have it right there and we can spend more time going over important things. Maybe if my meds need increased or decreased or changed. If the possibilty that I had the sez was because of some other sort of med that I may have been on.

Hope this helps!
 
thank you soooooo much....this is exactly what I wanted to know!
what you actually did for your diary.
It really does help me!!

by the way...can you tell me where double vision comes in with seizures??
I have it frequently, but did not know it was related to seizures.

thanks again!!
 
I don't know where the double vision comes from. I think I've had it before but never really realized it. I just thought I was having trouble seeing, I was in the house by myself.

I had it on the way to my last neuro visit while we were driving in the car and I though my husband kept running off the road. I told my neuro and he said to keep track of it and if it gets worse to let him know. He said that some of the meds can cause it too.
 
daisygirl,

can you remind me what meds you are on? double vision is a common side effect of many meds. some seizures also cause it, as does brain damage. but i'm guessing the meds.

i have blurry vision that looks like i'm seeing everything under water. very tiring and confusing. it's from the trileptal.
 
I would answer the question about what to write as.... write whatever you feel is important.

Rebecca had vision problems with tegretol.
 
I do use a seizure journal that my friend/roommate or my twin will write in for me after a seizure. They describe the seizure the best they can.
I do have a form on the computer from American Medical ID which is easy to fill in on the computer, making it profession looking and easy to read. I am visually impaired and it needs to be printed, not hand-written. I do make personal Braille copies too.
I do have another form just for migraines that ask detailed questions about how you were, how you feel now, what medications if any did you use, how do you feel after self-treatment, did you get sick and ranking your migraine and when and how long it was. It is kinda complicated when you are learning to use it- but its the best choice that I've seen so far.
Most seizure diary or journals from the internet or on the computer tend to be vague and you can't really add as much info on it.
I bring a binder with me that I can show them or I will read allowed, and sometimes my roommate has to force me to be honest. I am not a lier at all BUT I tend to not tell them every little seizure including auras/simple partials- I just don't see the point and it makes things look worse.. I feel that I should only mention the more serious seizures that really show how my meds are working- but I do tell after my friend threaten to "tell on me" LOL
I just need encouragment I suppose. I am like this with my disabilities too- part of this comes from making sure my family doesn't worry too much about things.

My neuro does listen to me as I recited things I've written down. I do things it is important to write things down as we, most of the times, do not remember every seizure that happends, unless you only have one or two between appointments.
I used to have 20 seizures a day, smaller complex partials- but thought they were Absences seizures that I was diagnosed with at age 6 but most likely were always CPs just shorter. They can be 45sec-3min..

Keep up the journal and remember that a neuro would be happy to know that their patient is keeping up with they health and being a part of the health care team rather than sitting and saying "Ok, anything you say doctor." They just deal with too many patients to really remember lots about you when you come to them for an appointment..
Kinda like my college advisor! LOL
I am graduated now though lol..

Take care,
Crystal and her guide Umbro
 
thank you crystal....
I just wasn't sure if I should write down every small twitch and jerk!!! haha:)
 
Ahh... Topamax! I had vision changes when I mixed topamax with some other really simple over the counter meds, like antihistamines. Though it can create vision changes all on its own.

Here's a link to the package insert for Topamax. It lists all the side effects:

http://professionals.epilepsy.com/medications/p_topamax_pi.html

I had a lot of really freaky drug interactions with Topamax. I had to be really careful what I took with it.
 
daisy.girl said:
thank you crystal....
I just wasn't sure if I should write down every small twitch and jerk!!! haha:)
Click to expand...

I'd sure write down WHEN you twitch and jerk and how much. It can uncover patterns in your seizures. I woke up the other morning, just my left leg twitching. Just annoying, and no other seizure symptoms. Into my journal it went!

I love www.seizuretracker.com. But I wish it had a place to record meals, OTC drugs taken on that day, and sleep. There's a "notes" field but it's small and hard to use and doesn't organize the info the way the rest of the journal does. It would also be great if it had a separate field for questions you want to remember to ask the doctor.
 
The other night when I went to bed, I was lying there and my arms, my legs, my whole body began to twitch and jerk like myclonic jerks.....but it was over in like 20 seconds or so. Nothing else happened.
 
Even if it's only 20 seconds, that's a seizure DaisyGirl. Even if it's only 5 seconds.

Sighhhhh... wish this was easier for you. And for all the rest of us, come to think of it.
 
Really???
I just rolled over and went to sleep after that!

Oh boy, If this is true, then I have a lot more seizures then I actually have been writing down. I didn't even write that in my diary.

Many times during each day, my arm will get a small jerk and I will have pins and needles in my hands too. I don't record those.

I have muscle twitches in my right upper eye lid? Is that anything?

I also get this buzzing, vibrating feeling under my scalp sometimes....like I can feel my brain buzz....it is weird.
 
A lot of people call those "auras." But auras are really simple partial seizures. You should write everything down. But try to put the data in a form that your doctor can use. Ask her/him how he/she likes to get it - or if there is a specific diary form he likes to get. That's one of the benefits of seizuretracker. it funnels all the data into a bar chart showing the number per day, a pie chart showing what time of day, and then text that tells all the details about each seizure.

My doc keeps his own little form. I bring in seizure tracker and he transcribes it into his form. I offer to do it for him in advance, but for some reason he likes doing it. (Is my handwriting THAT BAD???!!!)

I'm with you on one thing, though. I often get just one twitch or two twitches. I don't record those either, especially if it's while I'm falling asleep or waking up. I was told it's actually normal to twitch once or twice during transitions from one state of wakefullness to another. But not to twitch for 5 or 10 seconds.
 
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each day, my arm will get a small jerk and I will have pins and needles in my hands too.
Click to expand...

The pins and needles could either be your arm asleep/bad circulation, or it could be a seizure. Temporal lobe epilepsy makes you feel weird stuff.

Lately I've been getting a feeling like a giant moth beating its wings against my thigh. It can last for hours, or go on and off for a few minutes. Then I have a seizure and it disappears. I have no idea what that is, either, but suspect it is a simple partial.

Laughing... I kept checking down the leg of my pants to see if it was a giant moth or other big insect. Time after time, for a second I would wonder, "Yikes! What the heck is that and how did it get in there?" I plead diminished intellectual capacity... ;)
 
Endless....you make me laugh! I get this mental picture of you running in circles dropping your pants swatting at a bug that is not there! :)

I see my neuro on Friday. I think I am going to overwhelm him if I tell him about every twinge I have been having. Actually, I am afraid he will think I am CRAZY!!

Have you ever tried controling your seizures with diet and supplements alone? From all the reading on this forum, it doesn't sound like the meds work too well to control seizures and the side effects are terrible, I am thinking I may try supplements and diet at some point in the future. Not sure that I can though , I am an admitted chocolate addict!!
 
This is just my opinion, but...

There are many people whose seizures are very well controlled with anti-seizure medications. And they have minimal side effects. They just don't hang out in here. It's the people having problems that come here, to get help and support.

But even the people in here have theirs under control. Look at this poll: http://www.coping-with-epilepsy.com/forums/f27/whats-longest-you-have-been-siezure-free-7952/
Most people in here have been seizure free for over a year.

Diet and supplements are always worth a try. It can't hurt unless you take too many and it's toxic, or if they hurt your stomach (some are acidic). But you don't hear from the people that it does't work for - only the people it does. They are a vast minority. For most people they need AED's. The only diet that has been shown through scientific studies by recognized scientists to work for most is the ketogenic diet, which is very difficult if not impossible for an adult to follow.

I say try diet, supplements, etc. It sure can't hurt. And some supplements are really needed, like vitamins B & D, and calcium. As for diet, you may be one of the lucky ones for whom it really works.

If you don't feel like trying all the diets, there are actually tests to see if you have blood sugar problems (5 hour glucose tolerance test), problems with wheat gluten (but it takes a biopsy of your colon), etc. The tests are a pretty good indicator whether your body has that problem and whether that diet will help you.

Me? I noticed no difference on B, D, 5-HTP, Magnesium, Calcium. I did notice a difference from Taurine. But everyone is different, and their body may be low on different things and may benefit from different things.

So give it a try. But don't just go off AED's willy nilly.

Here's what I take. I added the ones that are for brain health one at a time and watched to see if I felt different. Again, Taurine is the first that I felt a difference. Not a decrease in seizures, but I felt better. But that's me, not necessarily anybody else.

• Multiple Vitamin
• B Complex
• B-12 (1000 mcg)
• Vitamin D (about 3500 iu)
• Calcium (1200mg)
• Magnesium Glycinate (400mg)
• Taurine (5000 mg)
• 5-HTP (100mg)
• Probiotics (to help with the diarrhea from all those supplements)

P.S. Thought I felt a difference on 5-HTP at first, but that disappeared. Darn.
 
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