Reporting Seizures

[rich956]

Greetings.
I was wondering if a lot or some here report all or just some of their seizures
to their doctors.
I seem to only tell my Dr. the ones that end me up in the ER and then the
others are never recorded in her records.
I have tried to record them into a journal but seem forget most of the time
since my thoughts aren't too clear at the time.:e:

 

[epileric]

I try to report all my seizures to the neurologist if he asks.

I've managed to get in the habit of marking down what time I have them then putting it in excel at the end of the day. When I visit my neurologist I just save it to a memory stick & bring it in for him to look at.

If you have a cell phone there must be an app similar to MS Word or Excel that you can use to record your seizures.

 

[Belinda5000]

I report all the seizures I have to my neuro,I record all my sz's that I know about .I don't remember all my seizures, so there are a lot don't know about I'm sure.I've never been controlled so it's important to me &my neuro that I report all of them to try see if the med is working.

 

[sjconner]

There are several free diary apps for smart phones. I tell my neuro everything that is odd and let him decide what is important. He told me to call if I have a seizure. I don't call unless it is serious ... ER, totally out of it, etc. Lately I have been having simple partials every day. I seem to have a complex partial or two every couple of weeks. I see him on Thursday. He gets paid the big bucks to sort this out and make recommendations.


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[CQ:)]

Most of my seizures have been simple/complex partials so in the beginning I used to only tell my original neurologist if I knew for sure it was a seizure eg- I did something weird or it was witnessed by someone. I would also wait until I had a few seizures or couldnt find a trigger for them before I would tell my neurologist. I have always kept a seizure diary so would take a copy of the diary into my neurologist but would wait until I had a few pages of seizures before I showed him.

In the end he asked me to not to wait so long between seizures & let him know straight away if I have a seizure so he could work on reducing the seizures. After that I was better at telling him.

I had surgery in 2011 & my seizures have been under control since the surgery. I still go to see my neurologist at the epilepsy clinic at the hospital where I had my surgery for regular checkups which is currently every 12 months. Even though I haven't had any seizures I do sometimes have funny feelings in my head which don't affect me to much but I still write them down.

I only speak to my neurologist when I see him for my checkups (he is in the city so 3- 4 hours drive away from me) but I do keep my neuropsych or epilepsy nurse up to date with on my funny feelings, usually if they are happening to often or they are different.
If the neuropsych or epilepsy nurse feel they need to follow it up with my neurologist then they speak to him & let me know what he says.

I am due to go see my neurologist at the end of March for a follow up, Ive had a few funny feelings since I saw him last year so I've already typed them up on a word document so I can print it of & give it to him. I will also be emailing the document to my neuropsych or epilepsy nurse a week before my appt so they can forward it onto my neuro which will give him plenty of time to read whats happening before I see him.

 

[rich956]

Thanks for all the great replies.
I really need to start writing down what happens as soon as iam able.

 

[kirsten]

I don't bother with reporting partials because they are too run of the mill for me and there doesn't seem a way to solve them. I do report them when they start getting bad enough to make me ill. I report tonic clonics though but I find it really tough these days to remember everything that's happening. For years, long ago, I had to go to the neuro every time I had a tonic clonic to have an EEG because I was going into status all the time and couldn't really tell that there was still seizure activity going down.

 

[valeriedl]

I always tell my neuro about ALL the seizures that I have. I very rarely end up in the ER after a seizure, maybe once a year, so he'd be thinking I'd only be having one. I tell him about any partials, semi or complex,

After a seizure we mark it down on the calendar right away that is on the wall right after it happened. I also have a small calendar that I write down any info that I have about the seizure. How long it lasted, what I did during it, if I had a headache after and things like that.

For my visits, which are every 4 months, I print out a list of my seizures. I put the date of when the seizure happened with as much info as I know about it. If I don't have any info but I know I had a seizure then I just write down 'seizure' and he want's me to do this. It makes things easier to go through during the visits. It helps him treat me better, knowing what meds I should be on and if the settings on my VNS need changed.

I only call the office letting him know that I'd had a seizure if I end up in the ER or if I've had several in one day or many days in a row.