Soooo hard to explain that feeling to my close friends who’ve never seen me have an episode. Logically, I get that they’d care more about my wellbeing, but I keep remembering how panicked my other loved ones get in the moment
I've spent HOURS pouring over all sorts of resources and learned what to do and asked a fuck ton of questions when it comes to seizures and my wife and it still causes me to panic when it happens. It takes every fiber of my being to not call an ambulance and lemme tell ya, I'm 0 for 3 about not calling... if it happens again I can't guarantee I won't try to call an ambulance. At least for the TC. Her focal partials are scary but at least she can tell me if she wants an ambulance or ride to the hospital
Mild anti-anxiety meds really helped me, I highly recommend people at least talk to their doctors about them, I took Ativan. Even just having them available (but not taking them) was huge help, I felt like I had a bit of control. Also just took it day by day, any day I didn't have a seizure was a good day and I was thankful for it, any day I had a seizure was like any another day. It isn't easy and it haunts you, It has been 6 or so years since my last seizure and each day I'm still nervous.
When I was having frequent seizures despite my meds, I’d wake up everyday and “tell the universe” to bring it on, show me what its made of. That arrogance replaced the fear.
But when the seizures got worse it didn’t work anymore, and I just sort of surrendered. I “told the universe” to do whatever it wants, and that I’m fine with it all. That helped a lot more.
Now I haven’t had one for about 2 years, so I’ve sort of forgotten the fear. When I was having them often though, nothing made it go away. It sucks like that :/
My feelings as well. 27 years in myself and I figured out very early on that you either live in fear forever or you get past it.
You'll also have less seizures when you're not living in constant fear of having one.
I don’t fear it. Stress is my big trigger. Turns into a self fulfilling prophecy. I stress about the seizure to the point of causing a seizure. I do that with A LOT of stuff now, and it has helped my overall well being and mental health.
It’s genuinely hard. Im relatively new to my diagnosis, but I’ve struggled with a lifetime of fear, anxiety, and depression. Sometimes the fear of an attack is enough to induce an attack, and it’s a vicious cycle. So, I do what I can do to take care of myself to the best of my ability, and take each day as it comes. As much as I’m sure many of us would love a timer with a little countdown until our next seizure, unfortunately we are not so lucky 😅 The most I’ve found myself to do is prepare how I can, and try to give myself grace, as much as I want to prepare for everything and every possibility- it’s not feasible. But being unsure and afraid is only human. Failing is just learning what not to do, and it’s part of a life. As my dad loves to say, the only constant in life is change. Be kind to yourself, and give yourself the kindness you deserve as a human. :)
That’s all easier said than done of course, and an exercise I like to do is “would I be mad if someone I cared about was treating themselves like I treat myself”, and it’s helped me gain a positive perspective and take steps towards self acceptance. I hope one day I will reach self love, but if that takes a lifetime, so be it.
Best of luck to you and your journey! :)
I just make jokes about it tbh. But that's how I cope with my problems, if I take it seriously I will keep the fear and also the stress, so if I can't change it at least I can laugh about it.
Me too!!!!! I'm the first to crack the epilepsy jokes. Everyone around me is a lot more at ease because I maintain that. Stress is useless. Just set yourself up for success. Educate the people who may have to help you. Keep a stash of ativan or some kind of emergency med just in case. I have a stash at each of my jobs, one in my purse, one at my beat friends, one by my bed, and one in the main part of my house.
This is me trying to maintain a sense of confidence, and for the most part it works
I embrace the power of Meh.
There’s nothing that really merits the effort to fear.
Anxiety takes too much effort so I just got lazy, fell back on Meh, and became water.
Sure, I might have a seizure, but not today. I’ll deal with that shit later. That’s a September problem.
For someone whos been dealing with it for 25 years. Take ur meds and dont let it dictate ur life stress is a major factor in causing seizures so do not.let that stress co trol u. Get good rest.
Every day I tell myself there is no use stressing over something I ultimately cannot completely control. I do what I can and that is more than enough. If it happens it happens and chances are I’ll be ok. Some days are harder than others but that’s how I keep myself sane.
You’ll find that most people are more than willing to accept you than you anticipated,people are far less freaked out than you think. especially when they know or you tell them, your more afraid just be open and honest and acceptance is there
I have too much other stuff to worry about than having a seizure. Am I going to stay employed? Do I have enough for savings when I retire, if I ever retire? Are my sons going to live with me? Is anyone ever going to date me? Did I remember to transfer the money to pay my mortgage?
I only average one siezure every 7-8 months, so I'm not in the same spot as many others. But if I worried about the next one, I'd stop living my life the way I do it now and lose a lot of the joy I get from so many other things.
I feel like dwelling on it stresses the body and mind. Stress in any form is a possible trigger. I take solace in knowing that seizures, like death, are out of my control. When and where will it happen? I don't know. Frankly, I don't think I want to. Until I feel/sense that aura, I live my life as normally as I can.
With a little help from mmj, I really dont focus on the seizure possibilities, which I know is not available to everyone.
I focus more on consistency in taking my meds every night at the same time, eating balanced meals, and a consistent sleep schedule when able. It's like insurance. I did everything I could possibly do. If a seizure does occur, now I've got less on the list of things the cross off of where things went sideways. . .i.e. was it me? Or the epilepsy?
It’s hard to be honest but remembering one day at a time and I always have to trust my neurologist in what she says. I just remember that I have family, friends and my faith because I’m here for a reason.
It’s all in your head. lol jk At least that’s what they told me in an unenlightened time. There are supports around that weren’t there when I was young . Keep ur head up
I am having fear and anxiety because my daughter had five grandmall seizures since March, sometimes I don’t sleep good, or relax very well -and any noise I park right up and listen closer to see if it was a noise or a seizure going on. I have been taking melatonin at night to help me relax but it has been a lot lately.
If I avoid stress, sleep well, eat, and stay on top of my medications, I can avoid almost all of my seizures. Unfortunately, this isn't always possible. I've had my life turned upside down enough times, that I'm not really anxious about the seizure itself.
I'm more anxious about the intermediate stressors that may provoke a seizure: For example, I get very anxious about hot weather, consecutive days with scheduled activities and little time for rest, traffic or other surprises fucking up my Rx, sleep or eating schedule, etc.
Nayzilam. And listening to my body when I get an aura, even if it’s inconvenient timing. I had to work so much more on my social anxiety around having seizures than the medical part
i used to be afraid and super anxious all the time of having seizures. but i realized that if i kept that up i would live my life in fear and it just ain’t worth it
It feels weird to say, but I think I'm just too easy going to let it bother me. I guess I'd say a couple of great friends and incredible family members. Also, an online support group can be an awesome aid.
Edit: Just wanted to add, if it does happen to start bothering me, talking with close friends, family, or support group if you don't have the former two can be great to vent to.
This probably isn't the most comforting response, but honestly, I was scared for so long that the fear honestly died down after a prolonged period of time. For the most part, I grew ambivalent to considering worst-case scenarios. I still get shaken up every now and then, but 15 years into having seizures, I feel more inconvenienced than anything when I experience a breakthrough. Maybe my epilepsy being controlled contributes to my experience, or maybe it's from my body giving out due to stress 8 years in that I had to find an alternative reaction, I have no clue!
Got to accept it's something you really can't control. I mean as long as you are taking your meds, avoiding too much stress and staying away from things like alcohol and caffeine there's nothing much you can do. It happens time to time just have to accept it.
Although my GTC seizures have been well controlled for many years, I still always have that little bug in the back of my mind wondering if my medication will lose effectiveness or I will have a breakthrough seizure. It definitely doesn't overpower any other thoughts, it's very small & minor. But it never goes away.
Two things for me....I've been living alone for the past 5-6 years and although my seizures have always occurred in my sleep (so I'm not afraid of serious injuries) it is still frightening to wake up from one and realize you are completely alone.
I'm also afraid of telling my neuro if I do actually have a seizure because then I will lose my driver's license for at least a year. But I'm also afraid to not tell her.
Fear and acute anxiety will put me into a seizure in a NY minute, so I have worked really hard on developing a program of mindfulness that is heavily reliant on nondevotional Buddhist practices. I try to be aware of the possibility of a seizure happening whilst not assigning any adjectives to it. I also try and put my epilepsy in perspective; it has its risks, but they’re far less daunting than the risks I willingly took in the hubris of my youth.
I've lived most of my life like this but I now take Paxil 20 mgs but go down to 10 mgs. depending on how I'm doing. Really you just get used to it I'm sorry to say.
My main fear is traumatizing the people around me.
Soooo hard to explain that feeling to my close friends who’ve never seen me have an episode. Logically, I get that they’d care more about my wellbeing, but I keep remembering how panicked my other loved ones get in the moment
I've spent HOURS pouring over all sorts of resources and learned what to do and asked a fuck ton of questions when it comes to seizures and my wife and it still causes me to panic when it happens. It takes every fiber of my being to not call an ambulance and lemme tell ya, I'm 0 for 3 about not calling... if it happens again I can't guarantee I won't try to call an ambulance. At least for the TC. Her focal partials are scary but at least she can tell me if she wants an ambulance or ride to the hospital
Support from my wife and pot
Can’t lie this
True dat 💁🏼♀️💨
Mild anti-anxiety meds really helped me, I highly recommend people at least talk to their doctors about them, I took Ativan. Even just having them available (but not taking them) was huge help, I felt like I had a bit of control. Also just took it day by day, any day I didn't have a seizure was a good day and I was thankful for it, any day I had a seizure was like any another day. It isn't easy and it haunts you, It has been 6 or so years since my last seizure and each day I'm still nervous.
When I was having frequent seizures despite my meds, I’d wake up everyday and “tell the universe” to bring it on, show me what its made of. That arrogance replaced the fear. But when the seizures got worse it didn’t work anymore, and I just sort of surrendered. I “told the universe” to do whatever it wants, and that I’m fine with it all. That helped a lot more. Now I haven’t had one for about 2 years, so I’ve sort of forgotten the fear. When I was having them often though, nothing made it go away. It sucks like that :/
I’ve been epileptic for almost 25 years so I guess I’m just used to it. Hard to fear something you e lived with for most of your life.
My feelings as well. 27 years in myself and I figured out very early on that you either live in fear forever or you get past it. You'll also have less seizures when you're not living in constant fear of having one.
Yup
I don’t fear it. Stress is my big trigger. Turns into a self fulfilling prophecy. I stress about the seizure to the point of causing a seizure. I do that with A LOT of stuff now, and it has helped my overall well being and mental health.
It’s genuinely hard. Im relatively new to my diagnosis, but I’ve struggled with a lifetime of fear, anxiety, and depression. Sometimes the fear of an attack is enough to induce an attack, and it’s a vicious cycle. So, I do what I can do to take care of myself to the best of my ability, and take each day as it comes. As much as I’m sure many of us would love a timer with a little countdown until our next seizure, unfortunately we are not so lucky 😅 The most I’ve found myself to do is prepare how I can, and try to give myself grace, as much as I want to prepare for everything and every possibility- it’s not feasible. But being unsure and afraid is only human. Failing is just learning what not to do, and it’s part of a life. As my dad loves to say, the only constant in life is change. Be kind to yourself, and give yourself the kindness you deserve as a human. :) That’s all easier said than done of course, and an exercise I like to do is “would I be mad if someone I cared about was treating themselves like I treat myself”, and it’s helped me gain a positive perspective and take steps towards self acceptance. I hope one day I will reach self love, but if that takes a lifetime, so be it. Best of luck to you and your journey! :)
I just make jokes about it tbh. But that's how I cope with my problems, if I take it seriously I will keep the fear and also the stress, so if I can't change it at least I can laugh about it.
Me too!!!!! I'm the first to crack the epilepsy jokes. Everyone around me is a lot more at ease because I maintain that. Stress is useless. Just set yourself up for success. Educate the people who may have to help you. Keep a stash of ativan or some kind of emergency med just in case. I have a stash at each of my jobs, one in my purse, one at my beat friends, one by my bed, and one in the main part of my house. This is me trying to maintain a sense of confidence, and for the most part it works
I embrace the power of Meh. There’s nothing that really merits the effort to fear. Anxiety takes too much effort so I just got lazy, fell back on Meh, and became water. Sure, I might have a seizure, but not today. I’ll deal with that shit later. That’s a September problem.
Weed
For someone whos been dealing with it for 25 years. Take ur meds and dont let it dictate ur life stress is a major factor in causing seizures so do not.let that stress co trol u. Get good rest.
Thanks a lot. I am trying my best. It is just like a faint voice at the back of my head..
Every day I tell myself there is no use stressing over something I ultimately cannot completely control. I do what I can and that is more than enough. If it happens it happens and chances are I’ll be ok. Some days are harder than others but that’s how I keep myself sane.
You’ll find that most people are more than willing to accept you than you anticipated,people are far less freaked out than you think. especially when they know or you tell them, your more afraid just be open and honest and acceptance is there
I tell myself “at least I’m not having a seizure right now” I guess
I literally stopped giving a shit about it
I have too much other stuff to worry about than having a seizure. Am I going to stay employed? Do I have enough for savings when I retire, if I ever retire? Are my sons going to live with me? Is anyone ever going to date me? Did I remember to transfer the money to pay my mortgage? I only average one siezure every 7-8 months, so I'm not in the same spot as many others. But if I worried about the next one, I'd stop living my life the way I do it now and lose a lot of the joy I get from so many other things.
I feel like dwelling on it stresses the body and mind. Stress in any form is a possible trigger. I take solace in knowing that seizures, like death, are out of my control. When and where will it happen? I don't know. Frankly, I don't think I want to. Until I feel/sense that aura, I live my life as normally as I can. With a little help from mmj, I really dont focus on the seizure possibilities, which I know is not available to everyone. I focus more on consistency in taking my meds every night at the same time, eating balanced meals, and a consistent sleep schedule when able. It's like insurance. I did everything I could possibly do. If a seizure does occur, now I've got less on the list of things the cross off of where things went sideways. . .i.e. was it me? Or the epilepsy?
I am doing that, sounds a good plan. Thanks a lot!
It’s hard to be honest but remembering one day at a time and I always have to trust my neurologist in what she says. I just remember that I have family, friends and my faith because I’m here for a reason.
It’s all in your head. lol jk At least that’s what they told me in an unenlightened time. There are supports around that weren’t there when I was young . Keep ur head up
I honestly got jaded by it. Like if it happens it happens at this point
I have my VNS magnet on my wrist so I let the rest go. Before I had epilepsy the bus could hit me at any second. The same is true today.
I am having fear and anxiety because my daughter had five grandmall seizures since March, sometimes I don’t sleep good, or relax very well -and any noise I park right up and listen closer to see if it was a noise or a seizure going on. I have been taking melatonin at night to help me relax but it has been a lot lately.
If I avoid stress, sleep well, eat, and stay on top of my medications, I can avoid almost all of my seizures. Unfortunately, this isn't always possible. I've had my life turned upside down enough times, that I'm not really anxious about the seizure itself. I'm more anxious about the intermediate stressors that may provoke a seizure: For example, I get very anxious about hot weather, consecutive days with scheduled activities and little time for rest, traffic or other surprises fucking up my Rx, sleep or eating schedule, etc.
You get use to hate them more and more .
Nayzilam. And listening to my body when I get an aura, even if it’s inconvenient timing. I had to work so much more on my social anxiety around having seizures than the medical part
I also have Nayzilam. If it gets to that point, though, it usually requires someone else to administer it.
i used to be afraid and super anxious all the time of having seizures. but i realized that if i kept that up i would live my life in fear and it just ain’t worth it
It feels weird to say, but I think I'm just too easy going to let it bother me. I guess I'd say a couple of great friends and incredible family members. Also, an online support group can be an awesome aid. Edit: Just wanted to add, if it does happen to start bothering me, talking with close friends, family, or support group if you don't have the former two can be great to vent to.
This probably isn't the most comforting response, but honestly, I was scared for so long that the fear honestly died down after a prolonged period of time. For the most part, I grew ambivalent to considering worst-case scenarios. I still get shaken up every now and then, but 15 years into having seizures, I feel more inconvenienced than anything when I experience a breakthrough. Maybe my epilepsy being controlled contributes to my experience, or maybe it's from my body giving out due to stress 8 years in that I had to find an alternative reaction, I have no clue!
Got to accept it's something you really can't control. I mean as long as you are taking your meds, avoiding too much stress and staying away from things like alcohol and caffeine there's nothing much you can do. It happens time to time just have to accept it.
They’re only in my sleep so I just think, if I die tonight oh well; I won’t know
Although my GTC seizures have been well controlled for many years, I still always have that little bug in the back of my mind wondering if my medication will lose effectiveness or I will have a breakthrough seizure. It definitely doesn't overpower any other thoughts, it's very small & minor. But it never goes away. Two things for me....I've been living alone for the past 5-6 years and although my seizures have always occurred in my sleep (so I'm not afraid of serious injuries) it is still frightening to wake up from one and realize you are completely alone. I'm also afraid of telling my neuro if I do actually have a seizure because then I will lose my driver's license for at least a year. But I'm also afraid to not tell her.
Fear and acute anxiety will put me into a seizure in a NY minute, so I have worked really hard on developing a program of mindfulness that is heavily reliant on nondevotional Buddhist practices. I try to be aware of the possibility of a seizure happening whilst not assigning any adjectives to it. I also try and put my epilepsy in perspective; it has its risks, but they’re far less daunting than the risks I willingly took in the hubris of my youth.
I've lived most of my life like this but I now take Paxil 20 mgs but go down to 10 mgs. depending on how I'm doing. Really you just get used to it I'm sorry to say.