Epilepsy discussion

[Clonzoo]

So. After reading quite a bit in the LGBT Community topic I kinda got inspired to make a topic about epilepsy where people can discuss various things about epilepsy. Like medicine either in pill form or surgery and side effects of all the various medicines. Things that you might believe to trigger seizures and what you do to counteract it. Just in general anything about epilepsy and people's experience around it. And as a general disclaimer to anyone with epilepsy, recent diagnosed or whatever. Epilepsy is not a big deal for most people and you can live perfectly normal life's with the diagnosis. So if you have it or recently got it, don't be afraid or anything, you'll do just fine. 

 

As for me, my epilepsy is the normal one. Where I have only grand seizure, which is the big shaky ones where I break stuff around me (Rip computer chair) or I can potentially break myself. As far as I know I've had about 5 seizures. One weird thing though is that during one seizure I was partially awake and remember my whole seizure. And that was pretty fucking scary to say the least. You are in absolutely no control of your movements, you're flexing every muscle in you entire body and shake and jerk around like a fucking jack hammer with multiple arms and legs. The other thing is, you can't really breathe, it feelt like I had swallowed my tongue and my throat were full of something. Luckily this has only happened one time. My other seizure I don't remember anything other then suddenly feeling very tired and nauseous. After a seizure you can't really tell if its been a seizure so my 5 is just an estimate. The 2nd seizure I had where I new something had happened I was scared shitless, but once the ambulance showed up, its such a great relief and you stop worrying and kinda think "Good, you're here, I'm in your hands now" which is a great feeling really, when you don't have to be afraid anymore and just let someone else take care of you and worry about you.

 

I've now had epilepsy for about 3 years. And things are going great. After awhile you start getting used to the signs your body gives to when you should take a break so you don't trigger a seizure. For me the warning to a possible seizures starts with jerks in my hands. If I carry something I usually drop them as I have these jerks. When that happens, I just have to stop what I'm doing and relax for a bit. My seizure are not triggered by light. What gets to me is stress, and if I am doing something I am unfamiliar with. Games that takes full attention and alot of multitasking like RTS games are the worst for me and I can't really play them much. When I have to focus alot I will also get warnings. Some other games does trigger warning and possibly a seizure if I don't stop in time. I've also noticed in new games where I have to focus and get to know the game first, sounds can often distract me if I focus alot and cause jerks. But once I spend some time, taking regular breaks and get used to a new game, it goes much easier. 

 

I have been lucky when it comes to meds. I have tried two different kinds. Kepra and Tegretol Retard. I am now using the latter one and eventhough I think my dosage is a little low I'm starting to really get familiar with warnings signs so its fine, and I'd rather keep it that way because the higer the dosage the worse the side effects get. When I was on kepra it worked great with the seizure, but no one could stand being around me because I got really quickly mad, mostly out of the blue without a reason. I wanted to punch pretty much everyone in the face, and my mom and the rest of the family was afraid of me really. Once I got off kepra though, my fuse got back to it long normal self. Some side effect I still have though, is sometimes, especially when speaking Norwegian, I stutter a little and can't get my words out sometimes. I've also loss some ability to show emotion, I for instance don't cry much anymore, I didn't cry much before either, but now I usually can't even if I sometimes want to. But I guess it has its good sides aswell as people can't really call me a little bitch for crying

 

Anyways, thats about it for me. I hope everyone here with Epilepsy will share their stories and perhaps it can be of some help to people who really struggle with it or people being afraid after being recently diagnosed. Also, if people without epilepsy are curious about something I don't mind trying to answer any questions as best as I can.

[Pesmerga]

10 hours and not even a reply? Aww shame, I don't suffer from epilepsy myself but gave the topic a full read, it's interesting knowing more about it

[themctipers]

10 hours ago, Clonzoo said:

So. After reading quite a bit in the LGBT Community topic I kinda got inspired to make a topic about epilepsy where people can discuss various things about epilepsy. Like medicine either in pill form or surgery and side effects of all the various medicines. Things that you might believe to trigger seizures and what you do to counteract it. Just in general anything about epilepsy and people's experience around it. And as a general disclaimer to anyone with epilepsy, recent diagnosed or whatever. Epilepsy is not a big deal for most people and you can live perfectly normal life's with the diagnosis. So if you have it or recently got it, don't be afraid or anything, you'll do just fine. 

 

As for me, my epilepsy is the normal one. Where I have only grand seizure, which is the big shaky ones where I break stuff around me (Rip computer chair) or I can potentially break myself. As far as I know I've had about 5 seizures. One weird thing though is that during one seizure I was partially awake and remember my whole seizure. And that was pretty fucking scary to say the least. You are in absolutely no control of your movements, you're flexing every muscle in you entire body and shake and jerk around like a fucking jack hammer with multiple arms and legs. The other thing is, you can't really breathe, it feelt like I had swallowed my tongue and my throat were full of something. Luckily this has only happened one time. My other seizure I don't remember anything other then suddenly feeling very tired and nauseous. After a seizure you can't really tell if its been a seizure so my 5 is just an estimate. The 2nd seizure I had where I new something had happened I was scared shitless, but once the ambulance showed up, its such a great relief and you stop worrying and kinda think "Good, you're here, I'm in your hands now" which is a great feeling really, when you don't have to be afraid anymore and just let someone else take care of you and worry about you.

 

I've now had epilepsy for about 3 years. And things are going great. After awhile you start getting used to the signs your body gives to when you should take a break so you don't trigger a seizure. For me the warning to a possible seizures starts with jerks in my hands. If I carry something I usually drop them as I have these jerks. When that happens, I just have to stop what I'm doing and relax for a bit. My seizure are not triggered by light. What gets to me is stress, and if I am doing something I am unfamiliar with. Games that takes full attention and alot of multitasking like RTS games are the worst for me and I can't really play them much. When I have to focus alot I will also get warnings. Some other games does trigger warning and possibly a seizure if I don't stop in time. I've also noticed in new games where I have to focus and get to know the game first, sounds can often distract me if I focus alot and cause jerks. But once I spend some time, taking regular breaks and get used to a new game, it goes much easier. 

 

I have been lucky when it comes to meds. I have tried two different kinds. Kepra and Tegretol Retard. I am now using the latter one and eventhough I think my dosage is a little low I'm starting to really get familiar with warnings signs so its fine, and I'd rather keep it that way because the higer the dosage the worse the side effects get. When I was on kepra it worked great with the seizure, but no one could stand being around me because I got really quickly mad, mostly out of the blue without a reason. I wanted to punch pretty much everyone in the face, and my mom and the rest of the family was afraid of me really. Once I got off kepra though, my fuse got back to it long normal self. Some side effect I still have though, is sometimes, especially when speaking Norwegian, I stutter a little and can't get my words out sometimes. I've also loss some ability to show emotion, I for instance don't cry much anymore, I didn't cry much before either, but now I usually can't even if I sometimes want to. But I guess it has its good sides aswell as people can't really call me a little bitch for crying

 

Anyways, thats about it for me. I hope everyone here with Epilepsy will share their stories and perhaps it can be of some help to people who really struggle with it or people being afraid after being recently diagnosed. Also, if people without epilepsy are curious about something I don't mind trying to answer any questions as best as I can.

I would like to actually learn more about epilepsy even though I don't have it.

*follows*

[awesomeness10120]

10 hours ago, Clonzoo said:

So. After reading quite a bit in the LGBT Community topic I kinda got inspired to make a topic about epilepsy where people can discuss various things about epilepsy. Like medicine either in pill form or surgery and side effects of all the various medicines. Things that you might believe to trigger seizures and what you do to counteract it. Just in general anything about epilepsy and people's experience around it. And as a general disclaimer to anyone with epilepsy, recent diagnosed or whatever. Epilepsy is not a big deal for most people and you can live perfectly normal life's with the diagnosis. So if you have it or recently got it, don't be afraid or anything, you'll do just fine. 

 

As for me, my epilepsy is the normal one. Where I have only grand seizure, which is the big shaky ones where I break stuff around me (Rip computer chair) or I can potentially break myself. As far as I know I've had about 5 seizures. One weird thing though is that during one seizure I was partially awake and remember my whole seizure. And that was pretty fucking scary to say the least. You are in absolutely no control of your movements, you're flexing every muscle in you entire body and shake and jerk around like a fucking jack hammer with multiple arms and legs. The other thing is, you can't really breathe, it feelt like I had swallowed my tongue and my throat were full of something. Luckily this has only happened one time. My other seizure I don't remember anything other then suddenly feeling very tired and nauseous. After a seizure you can't really tell if its been a seizure so my 5 is just an estimate. The 2nd seizure I had where I new something had happened I was scared shitless, but once the ambulance showed up, its such a great relief and you stop worrying and kinda think "Good, you're here, I'm in your hands now" which is a great feeling really, when you don't have to be afraid anymore and just let someone else take care of you and worry about you.

 

I've now had epilepsy for about 3 years. And things are going great. After awhile you start getting used to the signs your body gives to when you should take a break so you don't trigger a seizure. For me the warning to a possible seizures starts with jerks in my hands. If I carry something I usually drop them as I have these jerks. When that happens, I just have to stop what I'm doing and relax for a bit. My seizure are not triggered by light. What gets to me is stress, and if I am doing something I am unfamiliar with. Games that takes full attention and alot of multitasking like RTS games are the worst for me and I can't really play them much. When I have to focus alot I will also get warnings. Some other games does trigger warning and possibly a seizure if I don't stop in time. I've also noticed in new games where I have to focus and get to know the game first, sounds can often distract me if I focus alot and cause jerks. But once I spend some time, taking regular breaks and get used to a new game, it goes much easier. 

 

I have been lucky when it comes to meds. I have tried two different kinds. Kepra and Tegretol Retard. I am now using the latter one and eventhough I think my dosage is a little low I'm starting to really get familiar with warnings signs so its fine, and I'd rather keep it that way because the higer the dosage the worse the side effects get. When I was on kepra it worked great with the seizure, but no one could stand being around me because I got really quickly mad, mostly out of the blue without a reason. I wanted to punch pretty much everyone in the face, and my mom and the rest of the family was afraid of me really. Once I got off kepra though, my fuse got back to it long normal self. Some side effect I still have though, is sometimes, especially when speaking Norwegian, I stutter a little and can't get my words out sometimes. I've also loss some ability to show emotion, I for instance don't cry much anymore, I didn't cry much before either, but now I usually can't even if I sometimes want to. But I guess it has its good sides aswell as people can't really call me a little bitch for crying

 

Anyways, thats about it for me. I hope everyone here with Epilepsy will share their stories and perhaps it can be of some help to people who really struggle with it or people being afraid after being recently diagnosed. Also, if people without epilepsy are curious about something I don't mind trying to answer any questions as best as I can.

One of my cousins is epileptic. Thanks for talking man

 

[Clonzoo]

Thanks for the replies I was thinking this thread wouldn't go somewhere at all. Just ask me questions guys and I'll do my best to answer them.

 

Epilepsy is much like a faulty motherboard I guess is the best way to explain it.

Epileptic seizures are the result of excessive and abnormal nerve cell activity in the cortex of the brain.

 

So back to the motherboard which controlls all the signals. If one of the signal dosen't reach its destination it can cause en error of some sort. If there are many enough of these errors the system can crash. For me, it would be a seizure. Then again, a unstable processor could also be used as a thermonology.

[Clonzoo]

Sorry for reviving such an old topic, but I just thought of something I wanna add(And also revive the topic to get it going, hopefully). What I call warning signs with my epilepsy is actually a form of seizures that everyone can have but its usually associated with epilepsy. They are called Myoclonic seizure or Myoclonic jerks. Myo stands for muscle and Clonus stands for jerks. All people have had these in some form of another, they are especially common when you're just about to fall asleep, and hiccup actually falls under the same category.

 

How I have these jerks is that they happen in my arms. Both arms have these jerks and there's like this flash of light almost, and like a loss of consciousness for a very brief second on some of the more severe jerks. These are what I call warnings because I associate them with a proper seizure, however I haven't had the balls to really challenge them. Also, the more of these these I have and the more violent/severe/big they are I can get a little bit of a headache. Reason I write about this now is 1st. I just had a few and have a little headache and 2. I wanna get this topic going as I feel like it would be interesting to me and other people.  Also, just as a note, if you have these it doesn't mean you are epileptic. However depending on how often you have them and if they are a challenge to day to day life there are medication against it, I plan to talk to my neurologist about them to hopefully reduce them a little, I do however fear that if I do I will end up not having the same warning signs and not notice that a seizure is imminent, but we shall see.

[minibois]

Hey OP, have you ever had an epileptic seizure because of gifs/videos online?

[Clonzoo]

No I haven't but I have been pissed at people in the past because of screamers because lets say if I am really stressed and just took a break from doing something really trigger heavy then a screamer with flashing lights and sound, will pump adrenaline into my body, will raise the blood pressure and hearth rate and I'd imagine that can tip me over the edge. I do however tend to stay away from using my computer at all if I need a break, normally I just close my eyes and listen to some music, even lay down sometimes. 

[minibois]

52 minutes ago, Clonzoo said:

No I haven't but I have been pissed at people in the past because of screamers because lets say if I am really stressed and just took a break from doing something really trigger heavy then a screamer with flashing lights and sound, will pump adrenaline into my body, will raise the blood pressure and hearth rate and I'd imagine that can tip me over the edge. I do however tend to stay away from using my computer at all if I need a break, normally I just close my eyes and listen to some music, even lay down sometimes. 

What is worse, red and blue/green flickering or black and white flickering?

[Clonzoo]

On 10.6.2016 at 4:20 PM, Minibois said:

What is worse, red and blue/green flickering or black and white flickering?

I don't actually know. For me flashing lights don't effect me much and if i notice anything its if I watch a movie or at at a party or something with strobe lights. So I guess black and white flashing. Flickering from like an old computer screen don't affect me too much, although it not often that I use an old computer screen so I can't really tell for sure.

[Clonzoo]

11 minutes ago, valdyrgramr said:

I've had and hadn't had epilepsy.

 

Let me explain.  

 

Flashing lights never triggered anything in me at all.  I had my first seizure when I was 12.  Now, they assumed it was epilepsy, but I knew for a fact that was bull.  Here's why!  What triggered epileptic seizures in me were a mix of things.  1)  Refusing to take medications like Depakote which, when withdrawing, causes your body to have violent epileptic seizures.  2) Dehydration from my medications and drink choices.  3) Sleep apnea mixed with refusing to sleep.  All known to cause epileptic seizures in the human body.

 

Now, what makes it worse for me is that I have a form of autism and ADHD.  So, my body already has mild tremors from autism, and I get very little sleep at the hours I should due to my really bad ADHD.  I'm off meds like Depakote now, but I'm also not anything that can cause withdraw seizures.  My insurance just got fixed, so now I can finally get a refill on my amphetamine pill, yes it is just called that. And also, my current mood stabilizer called escitalopram.  

Thats what they do... "You have side effects because of this medicine, well allow me to give you this to threat your side effects" and it goes on and on is a vicious cycle. Until they run out of medicine to threat side effects and decides, OHH! We should try a new medicine... Did you take a EEG test, or EKG or whatever, its called EEG in Norwegian if I recall correctly.

 

On that note though, flashing lights while being the number 1 thing people associate with Epilepsy its not the only thing by far and its generally a misconception people have. Have you had any seizures as of late?

[Clonzoo]

6 minutes ago, valdyrgramr said:

 

I've had all the different scans when in the hospital for seizures and epilepsy.  But, ya it's EEG as EKG is for the heart.  I only have seizures now if I force myself awake, most of the time.  Like, if I get like 3-4 hours to sleep then force myself out of bed I'll collapse and seizure out, even in the dark.  They are epileptic, but it's not epilepsy.  It's because I'm supposed to be on one of those machines for sleep apnea, and then I don't wake up with enough oxygen.  So, my body also becomes and I can seizure out from that.  Or, if I was up all night, rested my body for like 2-3 hours then get back up to do something I can collapse and seizure out from that.  Again, that's being sleep deprived.  The only time they ever said it was epilepsy was when I decided to not take Depakote causing withdraw.   See, if it was epilepsy then things can trigger it throughout the day.  The only time I seizure out is when I do stupid things, like mentioned, then wake up.  I had one last week because I was up all night to make sure I gave my dad money in the morning to pay the cable bill, a loan.  However, I rested there for like 8 hours, 3 of those I napped, and then forced myself out of bed.  I was a bit dehydrated too due to the heat and humidity in my room.  That caused a seizure.  But, that had to do with dehydration and a strong lack of sleep.

Yeah, the thing is that. An epileptic seizure is caused when there's a short out in the brain and whatever signal being sent out doesn't reach its final destination. With enough of these you get a BSOD or otherwise known as a seizure. With severe cases of sleep deprivation anyone can have a seizure. And also, food and drinks irregularities will affect even a healthy human being into getting a seizure. So for me who have epilepsy, all of these things make me alot more likely to have a seizure eventhough even a healthy human can get a seizure during the right conditions. My guess is that the doctors is in a medicine mood, just giving you more and more medicine without looking at the root of the problem. Have they said if you epilepsy is idiopathic or symptomatic? Mine is idiopathic, meaning the reason for my seizure is unknown, I'm guessing yours are symptomatic, but going after the root of the problem is too much of a hassle so they'd rather just treat your symptoms.

[Clonzoo]

2 hours ago, valdyrgramr said:

I'm the kinda person who just provokes their body into having a seizure by being lazy and refusing to sleep and hydrate myself properly.  It became a habit when I was in college number 1.  So, probably symptomatic since I wasn't the one doing the paperwork. 

Not the smartest think you could do m8. There is a cache with having epilepsy or seizures, which is otherwise a very harmless diagnosis. First of all, its the obvious where seizure makes you fall or if you have a grand seizure hitting your head is one of the biggest risk and can lead to death.

 

Read what I said in the spoiler at your own risk as its pretty scary reads for anyone with Epilepsy or seizures, stay away if stress is a trigger to your seizures, sometimes ignorance is a blizz and I wish I didn't knew about it as it scares me. So again, continue at your own risk!

Spoiler

The other less obvious that very few people know about is something called SUDEP, it stands for Sudden Unexpected Death in Epilepsy. And sure you can defend yourself with not being epileptic but there so little known about it that I wouldn't rule out frequent seizure as the general cause. It is also said that this is more common in people with poorly taken care of seizure/epilepsy so, please take care of your seizure's for yourself and the people around you. Also, if that wasn't enough to wrap your brain around some Swedish reports points to epilepsy as the leading  cause of death in people with autism and learning disability, so seriously, take care of yourself.

 

[Clonzoo]

51 minutes ago, valdyrgramr said:

It's kinda hard for me because my autism is Asperger's.  So, I do sleep more now, use to abuse the hell out of my meds and energy drinks to get work done.  I stopped doing that, though as I started getting violent seizures from it.  The only thing now that fucks with my sleep is my Asperger's.  That usually only happens when I get too focused on something, though.  However, I learned to cut it out with energy drink abuse and abusing amphetamine, my med. I really need to drink more water, though as I drink juice and g fuel over it.  Not good for the body at all.  I did mess my sleep up the other nigh, though.  That was due to trying to get Linux to install on a G5.  Every distro failed.  That's what Asperger's does to an Aspie.   We get way too focused on something that interests/frustrates us then our ADHD kicks in.  Have fun going to sleep with those disorders in a situation like that.  But, ya...I kinda cut back on a lot of stuff last year when I had a violent seizure and fell through glass and almost died.

 

Falling through a glass and almost died... Well I ruined my computer/office chair if thats makes you feel better  Having a grand mal/tonic-clonic over the arm rest of a chair is not something its made for. What kind of seizures do you have btw? I'm guessing from your description it is the "standard" grand mal/tonic-clonic seizures most people associate with epilepsy.

[Clonzoo]

2 minutes ago, valdyrgramr said:

They said epileptic at the hospital each time.  Whatever lists body jerking, losing control of muscles, and jerking around.  Guess that would be grand mals induced by stupidity.

Sounds about right yeah, ground mal and tonic-clonic is the same thing. Body turns stiff, all muscles flex, shakes and jerks and everything.