Triggers and auras?

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MountainMama

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What are some of the things that trigger your seizures?

I just started keeping a seizure log (like, yesterday. So JUST started), and I have no clue what is triggering my seizures other than my migraines. (And honestly I'm still struggling to sort out what actually IS seizure activity and what is not). I've read all the lists online, stress, food, lack of sleep... but I guess I'm just looking for some real world feed back. Actual triggers from actual people instead of just compiled statistics.

Also, do you know you're having or are going to have a seizure? Do you get some sort of aura?

The only thing I can pick out as a warning/aura right now is that my ears start ringing and I get a really specific kind of brief stabbing headache. But again, I'm not even certain these spells are seizures yet (still waiting for my neuro to return my call).

I wish I understood what was going on inside my head. It seems unjust that my brain can be doing all this stuff without me being aware of it. The not knowing is causing me a great deal of stress. 😐
 
Loss of sleep and stress are my main triggers. Sometimes I will have an aura but most of the time I just have a seizure without the warning.
 
Unfortunately for me, I don't have any definite triggers. I know stress can/does often, but I've had many seizures--simple & complex partial while just sitting on the sofa watching TV--what's stressful about that? Or even stranger: the times when a complex partial occurs 2 or 3 hours after I take a dose of my AEDs. My CPs are the most troublesome because unless I have a witness or do something to myself or my surroundings I'm totally unaware that one occurred.
 
Hi, MountainMomma;

It shouldn't matter what other people's seizure triggers are :). Over time as you keep track in your seizure journal what you were doing just before your seizure, you should eventually be able to determine what your own seizure triggers are IF you have specific triggers. It may help to keep track of what you consume and what you do in general from day to day to try to see if there is a pattern or correlation with your seizures. Many people find that multiple factors at one time (eg. excess fatigue + stress + inadequate food intake) triggers a seizure, rather than one single thing.

Dealing with the unknown is very stressful and unnerving. I found keeping a thorough journal for the first while gave me some sense of control - as though seeing my day to day life on paper allowed me to see things I could do to regain some of the self-confidence I'd lost, to increase my activity level, improve my eating habits, etc. Not that any of those improved the seizures, but they did improve how I felt about myself.
 
It the awful panic attacks not feeling real and sticking migraine I find most debilitating.i do have other types of aura the smell or jerking muscles visual and memory that kills me
 
masterjen said:
It shouldn't matter what other people's seizure triggers are :).
Click to expand...

🙂 Isn't that the truth! 😉 And it doesn't really matter, I'm just grasping around for some sort of data about real people with real seizures while I try to learn to identify my own and wait for my own data to accumulate. I'm looking for dynamic case studies I guess. Information about how other people experience and cope with seizures as my diagnosis is stil REALLY new (none of my neurology team even mentioned epilepsy to me until August 21.) and I haven't fully accepted it yet. Part of that is that I don't understand what seizures are like. For other people. For myself. And I have no clue how to identify them. I am also on the autism spectrum, and my brain sort of craves quantifiable data in ways that are difficult to articulate. I just really NEED to know and understand everything, and it's a very uncomfortable, crawling out of my skin kind of feeling to have to sit and wait for knowledge to become available. 😂

I get wired up for my ambulatory EEG on Monday. I am hoping those results will help me make better sense of things.

Thanks for all the replies! It's really helpful looking at what epilepsy is like for other people. 🙂
 
I recently had an ambulatory EEG as well, a 72 hour one. I also purchased a wireless security camera (more along the lines of a baby cam. recorder) that allowed recording of data that was automatically stored to an SD card. I was then able to provide the recordings to my epileptologist so he could use these along with the EEG recordings. This is something you might want to consider doing. The camera does not have to be expensive; mine was $150 (Canadian dollars).

My seizures are nocturnal and I do not waken for all of them, so even the camera without the EEG recordings is still proving useful to monitor how I'm doing as the medication dose is gradually increased.
 
Mine was supposed to be 72 hours, but they didn't have an appointment available do do one until December!! So I am doing a 48 hour one next week and hoping it provides enough data. If it doesn't then I will schedule a 72 hour one for late this year or early next. Luckily, they are providing me with a camera and a pole to mount it on for this EEG, but i may consider buying one of my own now. Thanks for the suggestion!

My neurologist believes I have likely been having nocturnal siezures all my life as I have a history of strange behavior at night that I have no memory of. I am now having them during the day as well, which is why I finally noticed something was not right. It will be interesting to see what comes of this EEG. My sleep deprived one was abnormal, but during answer the questions we have now. Currently we are trying to discern if it is complex migraines triggering seizures or the other way around.
 
I think it's great that the facility you are seen at is providing a camera! To me this only makes sense, since the visual data is every bit as important as the EEG data, esp. when one considers that the physical signs of a seizure can be present and recorded on video even if the EEG is normal.

I hope you will let us know how everything is going during the time you are wired up. Oh and for what it is worth, I found that wearing a light-weight "hoodie" was the best way to hide the wires.
 
Hi MountainMama,

Stress, lack of sleep, aspartame, and really hot water hitting my head when I'm showering will trigger seizures for me. Also I have more seizures in the fall and winter do to the lack of serotonin this time of yr. so I sit around bright lights and that helps me a lot.
Before a complex partial seizure I will often have a aura seizure where I start to see colors flashing back and forth in my eyes and I get a nervous feeling in my stomach if I don't tighten up my muscles quick enough I end up having that aura seizure lead into a complex partial seizure and I will wander around, smack my lips and sometimes I won't be able to speak for a few seconds after the seizure. When I have an absence seizure it just hits me and I have no idea when it's going to happen until it's all over with then I'm a little confused for a few seconds and I don't remember what happened. I wish you the best of luck and May God Bless You!

Sue
 
I wish I had some idea of what triggers my complex partials because of how dangerous they often are. I've been tracking my seizures for a long time, but haven't found any type of pattern.
 
Two of my biggest seizure triggers are stress and lack of sleep. I do have them completely out of nowhere too.

I have a VNS and I may have some type of an aura but I may not realize that I'm having it until it's too late and I don't know to use my magnet. Sometimes I'll go right into a complex partial with no warning and usually don't even know that I've had it unless there is someone there to see it happen.

When I am alone I may realize I've had a seizure because I do crossword puzzles and if I'm doing one while I have a seizure I'll scribble all over the page. I've had them too during the day that when I've come out of it I'll be laying in bed with my clothes on instead of my pjs.

I have seizures when I'm asleep and awake and if I have one while I'm asleep a good bit of times I'll chew the inside of my mouth. I've come out of these too laying on the couch or sitting in a chair with my pjs on. The list goes on.

As said everyone's seizures are different so what I do, or what anyone else might do, may not be what you do. The same with triggers.
 
masterjen said:
I think it's great that the facility you are seen at is providing a camera! To me this only makes sense, since the visual data is every bit as important as the EEG data, esp. when one considers that the physical signs of a seizure can be present and recorded on video even if the EEG is normal.

I hope you will let us know how everything is going during the time you are wired up. Oh and for what it is worth, I found that wearing a light-weight "hoodie" was the best way to hide the wires.
Click to expand...

I am really glad they are providing me with the camera too! Also kind of nervous about being recorded during my day. Ha!!

I will let everyone know how it goes, wires go on at 2pm tomorrow! Eeek! Thanks for the tip about the sweatshirt! I will try that when I am out and about. Unfortunately for me I have to continue working while wired up and I work in a hospital AND am both required to wear scrubs and to go in and out of sterile environments so....it's going to be interesting. I let them know on Friday so hopefully they will have some ideas on how to make that work. 😂
 
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