Anticipating and Counting Seizures?

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Messages
158
Reaction score
0
Points
0
I see people write about knowing a seizure was coming and I see people with partial seizures who are able to count how many they had. I'm not aware of any warning I've ever had for any type of seizure and I don't know how to tell when a partial seizure started or ended. I'd like to understand these things better. Any input appreciated.

1. When you say that you knew a seizure (any type) was coming, what did you feel and is it something you only feel when about to have a seizure? Also, did you always get a warning, even as a child?

2. When people say they had X number of partial seizures, how do they know when one partial seizure ends and another begins? How do you count? Also, can you count if you are alone or is this only with help from an observer?
 
Last edited:
That's an excellent question. I've had partial/complex apparently for several years and didn't know it. I was only diagnosed in December an I've been struggling with how to tell that I'm having them. I really don't know, but I pick up on missed time or confusion afterwards and sometimes I'm really tired afterwards. Apparently with mine I can have them around people and they won't really notice unless they are watching closely. I had attributed most of symptoms to old age until I failed an eeg.
 
I'm currently undiagnosed, but I can always tell when an "episode" is coming, because I become flushed and tingly with swooshing in my ears and afterwards I can recall most of what happened, but forget bits and pieces.
 
1. When you say that you knew a seizure (any type) was coming, what did you feel and is it something you only feel when about to have a seizure? Also, did you always get a warning, even as a child?

When I was younger in school my CPS were easy to feel coming with an aura. Before they would happen I would feel a change in the room around me. It could have been a nice 60-70 degrees in the room. But I would get this sudden chill up my back. More often I would experience a warm feeling with nausea. I would believe I needed to vomit, but I never did. The whole CPS would last not more than 5 minutes. I dealt with those auras all throughout jr/sr high school. As I got older the auras went away. I had no more warnings when my CPS was going to happen. :(

2. When people say they had X number of partial seizures, how do they know when one partial seizure ends and another begins? How do you count? Also, can you count if you are alone or is this only with help from an observer?

When I experienced auras before my seizures it made keeping track of my CPS much easier.
They began when I got that nausea feelings, and ended when the feelings subsided. That made it easy for me to keep track if I was alone. But when the auras stopped it made keeping track much difficult. Often my CPS would come on so fast I wouldn't know. Many times Id just wake up later thinking I just feel asleep. If nobody seen me have the CPS, then I wouldn't have known right away. A good tell-tale sign you may have had a seizure is having a bad headache or being overly tired.
 
My seizures are caused by a brain tumor near the motor/sensory strips on the left side of my brain. My first ever seizure started with my arm twisting around behind me then feeling like I was looking through a peep hole in a door before I went tonic clonic (my one and only t/c). I guess the first part was just a different sort of seizure more than a warning. After I was put on anti-seizure meds I didn't have any more episodes like that. I had purely simple partial motor seizures that hit with absolutely no warning. After I eventually had surgery, I had much more frequent seizures, but they were far less severe and they gave me a warning first. They went away after my brain healed and I was fine for several years. But a little more than a year ago they started again, they were sensory episodes that also gave a warning first.

Though the seizures went from being motor to sensory (because the tumor grew back closer to the sensory strip) the warning felt the same. It's hard to describe exactly, but I only feel that way before a seizure. It's kind of a tingly feeling but not exactly, and there's a feeling of having a stitch in my side, and a catch in my breath...but not exactly. : P

This probably didn't help. Sorry. But maybe it's a small piece of the puzzle.
Good luck. :)
 
1. When you say that you knew a seizure (any type) was coming, what did you feel and is it something you only feel when about to have a seizure? Also, did you always get a warning, even as a child?

Sometimes before a seizure I'll get confused and I'll have trouble trying to say things. My lips and fingers might tingle and I could get lightheaded. I may feel like I'm drunk. This doesn't always happen though. I could just go into a seizure and not even know.

I wasn't diagnosed with epilepsy until I was in my mid 20s and they don't know what caused it. I just had a grand mal seizure out of no where and I've been having seizures ever since.

2. When people say they had X number of partial seizures, how do they know when one partial seizure ends and another begins? How do you count? Also, can you count if you are alone or is this only with help from an observer?


A good bit of times unless I have those 'pre-seizure' feelings I don't know that I've had a seizure unless there is someone there to see it happen. After many of my seizures I'll have a very bad headache so if I have one then there is a good chance that I've had a seizure.
 
I don't have aura's I just get feelings is all that I'm going to have a seizure. Sometime very rarely, if it's a simple partial I'm going to have.
 
I sometimes feel very agitated and shaky inside, as if I've had too much coffee, before a tonic-clonic. I have deja vus, very ominous-feeling ones, but they've never led to a seizure. I never have any warning of partials.
 
I have deja vus, very ominous-feeling ones, but they've never led to a seizure.
Technically, the deja vus ARE seizures (simple partials). But I think know what you mean -- that they haven't led to a tonic-clonic seizure.
 
Technically, the deja vus ARE seizures (simple partials). But I think know what you mean -- that they haven't led to a tonic-clonic seizure.

Ah, my usual simple partials are muscle spasms and eye rolling - I've never counted deja vus as seizures. Thanks!
 
I see people write about knowing a seizure was coming and I see people with partial seizures who are able to count how many they had. I'm not aware of any warning I've ever had for any type of seizure and I don't know how to tell when a partial seizure started or ended. I'd like to understand these things better. Any input appreciated.

1. When you say that you knew a seizure (any type) was coming, what did you feel and is it something you only feel when about to have a seizure? Also, did you always get a warning, even as a child?

2. When people say they had X number of partial seizures, how do they know when one partial seizure ends and another begins? How do you count? Also, can you count if you are alone or is this only with help from an observer?


These are very great questions to bring up, as I had a hard time figuring this out as well.

As for question 1: My typical aura consists of phantom sights and smells, seeing spots, and a pins and needles feeling that starts from the base of the skull and slowly creeps up to my entire head.

As for question 2: If someone is around, I will ask them what happened symptom wise. If I'm alone, the only times I count are if I have a staring spell or if I wake up lying on the ground, looking at the clock and noticing a 5-15 minute (maybe even longer) time difference.
 
Back
Top Bottom