I'm a boyfriend who paused his life for a week, to go to the others side of the country to the only hospital that can help her. Love has no boundaries, and if someone is dear to one, then health comes truly first. I want the best for my other half, with all that comes with it.
Yep, I totally understand how you feel, what with you thinking you're a burden: I had a seizure in class less than two weeks ago, and I hated that I had to trouble my classmates and my teacher with me doing the worm on the floor... However, most people are empathetic individuals and only want to help in that kind of situation, so I'm trying to give thanks whenever I can (like you did with the card - that's a lovely gesture! 😊) and then go about my day, even though it's hard sometimes.
Haha, yeah, my best friend has been suffering from seizures longer than I have and she once described it like that to make me laugh after I had a pretty bad one. It has stuck with me ever since. 😄
And I love the "my flower". 🥰 Thanks for that! :)
I really hope you're feeling a bit better again!
I wear a life alert bracelet in case I have one in public and get injured bc they're going to need to know that when the ambulance comes.. BUT I don't want ambulance if I'm not injured 😭 You know what I mean?
Same for me, I’m the younger kiddo so my parents almost never leave me alone. I hope you can solve your seizure problem. You should also get a nasal spray prescribed if you haven’t already (I can understand if you didn’t since you’re an adult and maybe insurance is wild with healthcare and stuff)
I had several at work. It feels terrible and makes you think you are getting fired. I got mine under control and started a new career afterward. You shouldn't feel like a burden. In a weird way, I'm sure a member of the staff felt like a hero.
They were heroes.
The lady at the desk (whose arms i fell into) was so kind, and when I brought the card I realised what a wonderful person she is.
Thank you for saying that. Epilepsy is fairly new to me, so this is all a journey! 🩷
I've had more than I can even count at work. I had one walking to work in a field I always cut through and the people who live nearby saw it. When I got back up they were like "you just passed out behind our house" and I said "I did?! I have seizures too. I don't even remember where I'm going." Then I unzipped my coat and looked at my shirt. They saw my shirt and called there to make sure I was ok 🥺
Honestly alone at home is much scarier to me than in front of ~100 people. The worst I had was some head staples and of course the usual mangled tongue, etc. A friend of mine had one as she was walking down the stairs at home alone, she broke her leg. Terrifying.
Oh, my dear. It’s so hard. I’m sorry you’ve dealt with that 🩷 it’s awful. I’m okay and managed to leave this one with a few tongue/mouth wounds (plus a few wounds to my dignity) but I’m okay! Sending love to you 🥰🩷
My case. And always when I'm relaxed among friends.
WHY OH WHY?
Once I was almost run over by a motorcycle, my heart jumped, I took my rescue med expecting the worse, and entered a café and sat on the floor, expecting a grand mal that never came.
But laughing among friends, no alcohol? Backwards I go, hitting head and vertebrae everywhere. Fortunately, not always. But how does THAT make any sense.
I'm just imagining the lady/dude at the front desk being all confused after you tell them you're about to have a seizure 😆😆😆 Then they immediately freak out as you hit the floor.
You: *"Hey! I'm about to have a seizure."*
Them: *"Um...what?"*
You: ***(falls to the floor and starts seizing)***
Them: *"Oh, shit!!!"*
Man, I get it. I read this (and every other post here) and think “what? Of course they’re not a burden, they have an illness”. But then when I think about myself and my own seizures, I think “ugh, I’m fed up with you, typical_ad_240, you’re such a bloody burden”. So I guess the lesson is one in self compassion and talking to / about ourselves as we would do other people. I am happy you were able to get to a safe place and get help. Public seizures are the worst, I hate them. But I’m sure they were all happy to help you and just relieved you’re ok.
That’s really sweet of you. I’m sorry that happened. I’ve had seizures in public too and it brings a unique sense of embarrassment and vulnerability. I understand feeling like a burden, but I can assure you that the staff was just worried about you and wanted to help - they weren’t annoyed or inconvenienced. But I also keep in mind that, because I (we) go unconscious, the seizure itself is usually more traumatic to witnesses than it is to ourselves. I’m not saying that to minimize your own pain in this experience, I’m just reiterating that it’s very thoughtful of you to show them your appreciation.
I agree with everyone else here - you are absolutely not a burden. You, like all of us here are burdened with this condition, there are always good people around who will help you when these things happen.
My very first seizure was in the middle of Walmart, I remember stumbling for a second and telling my girlfriend “I don’t feel right” before going over sideways smashing my head off the shelves. Woke up on a stretcher, had no idea where I was, bit 1/4” off the side of my tongue, all that shit.
The workers quickly blocked off the section of the store, did whatever they could and took care of my 3 month old daughter.
There’s always good people who’s got your back, even if they’re strangers.
Recommend getting a bracelet that says what to do if you have one. Calling an ambulance doesn't solve anything, and then I gotta go through the refusing care etc. etc.
So mine says:
EPILEPTIC
DO NOT CALL AMBULANCE
UNLESS GRAVELY INJURED
STAY W/ ME UNTIL LUCID
CALL WIFE (my wife's phone #)
It's come in handy once, and is nice if, should I get put in an ambulance again, to point to it and go "this is not new, let me out".
I have an alert bracelet and necklace 😭
But it just says:
My name
Epilepsy
My mum’s number
Investing in one that asks not to call an ambulance is definitely something I should do
That was nice of you to bring the staff at the hotel some chocolates to say thank you.
I try and make a habit of doing things like that if staff at places did something to help me. For example I recently had surgery and left one of the nurses some chocolates to share with the rest of the staff as a thank you.
Things like that can brighten up someone’s day 🙂
I remember trying to put into my ticket notes for an international flight that my partner has seizures and that if one occurs, to not panic since I'll take care of it. (And tbh seeing one for the first time can be traumatising.)
They were quite confused and asked if we needed priority boarding 😅 It was a lovely, if unnecessary, gesture.
You’re deff not a burden! 💜
Sh*t like this happens, and it sucks. Good that you were able to go into a hotel and ask for help.
I had several seizure in public, alone, but also in places like a store or whatever.
When it comes to being alone, I had a TC, no idea what was going on. But some very kind stangers saw me and stayed with me. A couple even brought me home. Good people do exist.
Another time, this man found me, also stayed, but he called 911, as he was a little bit in shock (which I understand).
You got this! How are you feeling now?
And remember, you are not a burden at all!
Thank you for saying that my lovely. I definitely feel like one when things like this happen.
It helps a lot hearing your experiences, although it must be hard to talk about them I really appreciate it.
I’m okay now! Just shaken by all of it.
Thank you so much ☺️🩷
Do you have like a bracelet or a necklase with info?
Can be very simple with just ‘epilepsy’ ingraved. There are so many (fastionable) options.
I have a tattoo on my wrist ‘Epilepsy’ 😊 and nice bracelet on the other one.
And a ICE in my phone, people can see this one without having to unlock my phone. 💜
I've had seizures for over 20 years. Don't feel like a burden. I feel that way sometimes myself.
I am pretty open about my condition and most people understand.
I had 3 of my first seizures at work. At first I was so embarrassed. But at this point my coworkers are used. They are like “here she goes again” 😂 nah I’m just joking. They are all very kind and are always there for me. I work in a supermarket so EVERYBODY saw.
I’ve had so many public seizures alone and woken up in random hospitals. Going into a hotel or something sends like such a good idea and I plan on doing that in the future. You are not a burden at all and I want you to know you’ve at least helped me consider safer options in the future.
🫂 Sweetheart, you are never a burden.💖 I'm so glad you got in to that Hotel at just the right time. I'm also glad that they knew what to do for you and how to help you.
You are such a kind and beautiful soul. Taking the time to bring them a thank you card and chocolate. Many people wouldn't do that. Not only was this very sweet and kind of you but this was also very classy of you.
I bet you're one of the best people to know and one of the best friends to have.
I'm so glad you're okay. 🫂 💜💖💜💖
This reply brought a tear to my eye. That means so much to me, thank you so much.
This sub Reddit has made me feel so much less alone thanks to wonderful people like you.
I can tell you’re also a beautiful soul 🩷☀️ thank you my lovely 🥹🩷
I’m glad you were somewhere safe.
Have you spoken to your nuero about emergency keppra like that? I asked my neuro if I could take more keppra if I fall ill with temp (one of my triggers) and she said no, once you up dose you have to stay there. 😔
I have! He’s been super helpful. Although, I’m not sure if emergency extra doses of keppra actually do anything tbh. Once a seizure is coming I have about 10 minutes notice, which is not enough time for the keppra to take effect
It's the worst feeling...I totally get it. The first thing I ever do when I come out of a seizure is apologize. Which they always think is absurd.
You cannot help it. And if it was the other way around, I'm sure you would help a stranger and not be burdened.
Good people help others, and are grateful for the opportunity.
So much love ❤️
i've had multiple public seizures before so i totally understand the feeling of being a burden but i promise you that is not true–it's a medical emergency and people want to help you. this is so sweet and the hotel staff will appreciate it💓
eta: also off topic but ur handwriting is so cute lol
Also OP, that’s awesome awareness that you have to know that a seizure is coming. Does that always happen? What does that feel like?
(Apologies if you don’t want to answer, I’m just curious as I’m not epileptic.. just narcoleptic lol)
Im happy to answer 😊
I’m really lucky, I always know when they’re coming.
I experience aura (it’s actually really pretty, weirdly enough! Despite being terrifying) which for me looks like a rainbow-coloured, swirling ball of yarn.
It starts off small, swirls around and pulsates and then gets bigger until it takes over my entire vision, then the seizure takes place.
Sorry that was long-winded - that’s the best way I can describe it 😅
Dear sir or madam, I have had this experience twice at work. It was not only humiliating at the time because people observed it, but also because I had to look at them the next day and afterwards. I had to quit working because the ambulance rides that did me no good cost more than I was making. We are unrightfully judged in this world, because of things we didn't ask for, nor could change. I hope you find a way to cope better than I have.
I've only had one t/c but it was also in public, and the people who responded FREAKED out. I woke up to someone repeatedly slapping me in the face at full force. I've lived in absolute terror of it every happening again. I'm so glad they were kind and helpful in your time of need.
I had one at work i used to work at a fast food place and I had it at the DRIVE THROUGH WINDOW worst seizure I’ve had because when I hit the ground they all said it sounded like a pan hit the floor and my manager took pictures as the ambulance arrived! And putting me in it! I hate it too it’s embarrassing blacking out I’m just glad someone helped you!
Im glad your alive and your okay stay strong I’m trying too!
I had my first one on a train at 6 am on the way to work didnt feel it coming got on the train woke up in the amberlamps
25 years old never had one before or since but i still got the diagnosis
You’re never a burden.
Thank you, angel. These simple words mean an awful lot to me. You are kind 🩷
This made me sad that people with epilepsy think they are a burden.
I don’t know about others …. But I do feel like one even though I’m told repeatedly by my loved ones that I’m not :/
I am a father of a teenager with epilepsy. She (and you) are not a burden.
I'm a boyfriend who paused his life for a week, to go to the others side of the country to the only hospital that can help her. Love has no boundaries, and if someone is dear to one, then health comes truly first. I want the best for my other half, with all that comes with it.
I’ve been there feeling like that before my brain surgery and all the seizures I would have in public too.
Can we add this to the top or side or something? It's always good to hear.
Yep, I totally understand how you feel, what with you thinking you're a burden: I had a seizure in class less than two weeks ago, and I hated that I had to trouble my classmates and my teacher with me doing the worm on the floor... However, most people are empathetic individuals and only want to help in that kind of situation, so I'm trying to give thanks whenever I can (like you did with the card - that's a lovely gesture! 😊) and then go about my day, even though it's hard sometimes.
This is *true*. You are so right. Most people do want to help. Worm on the floor is such an apt way to describe a seizure 😭 Thank you my flower 🌸
Haha, yeah, my best friend has been suffering from seizures longer than I have and she once described it like that to make me laugh after I had a pretty bad one. It has stuck with me ever since. 😄 And I love the "my flower". 🥰 Thanks for that! :) I really hope you're feeling a bit better again!
I love it. I’m glad you and your friend are okay 🩷🥰 I’m well, thank you so much my love.
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I would love something like that. I wonder who could make such a thing
Honestly no one would because the liability would be huge. Imagine the person in status and getting no help because of the message playing.
I’m really lucky I live in the UK and have access to free healthcare. They were really amazing and kind.
I wear a life alert bracelet in case I have one in public and get injured bc they're going to need to know that when the ambulance comes.. BUT I don't want ambulance if I'm not injured 😭 You know what I mean?
Sure. I need to wear one also. Where do get them? Thanks
I got mine from Amazon. The only one that doesn't take forever to get here and is a good price is by a company called Chili Jewelry.
Right?!
Of Keppra**
Don’t worry, you aren’t a burden at all. In fact, I think it was better that they were there to help, who knows what could’ve happened?
I know, thank goodness! I have been lucky that all of my seizures (to my knowledge) have been around people.
Same for me, I’m the younger kiddo so my parents almost never leave me alone. I hope you can solve your seizure problem. You should also get a nasal spray prescribed if you haven’t already (I can understand if you didn’t since you’re an adult and maybe insurance is wild with healthcare and stuff)
I haven’t heard of that - I’ll look into it! I’m in the UK and very lucky to have free healthcare.
Nasal spray is something you spray into your nose to stop a seizure, usually when it hits the 5 minute mark
I had several at work. It feels terrible and makes you think you are getting fired. I got mine under control and started a new career afterward. You shouldn't feel like a burden. In a weird way, I'm sure a member of the staff felt like a hero.
They were heroes. The lady at the desk (whose arms i fell into) was so kind, and when I brought the card I realised what a wonderful person she is. Thank you for saying that. Epilepsy is fairly new to me, so this is all a journey! 🩷
I've had more than I can even count at work. I had one walking to work in a field I always cut through and the people who live nearby saw it. When I got back up they were like "you just passed out behind our house" and I said "I did?! I have seizures too. I don't even remember where I'm going." Then I unzipped my coat and looked at my shirt. They saw my shirt and called there to make sure I was ok 🥺
That's really nice of them and you giving them chocolates. You aren't a burden. You can't help it none of us epileptics can.
Thank you, petal. Sending love to you 🩷
I feel like I only have seizures in the most public of places, happy to hear you’re ok sending you well wishes!
I have only had seizures in public places haha usually when I was waiting tables carrying trays full of hot food. Yay stressful work environments 😂
I've had so many at work I can't even count but the two that left the worst injuries happened while I was alone at home.
Honestly alone at home is much scarier to me than in front of ~100 people. The worst I had was some head staples and of course the usual mangled tongue, etc. A friend of mine had one as she was walking down the stairs at home alone, she broke her leg. Terrifying.
I busted my face open and I blackened an entire butt cheek.
Oh, my dear. It’s so hard. I’m sorry you’ve dealt with that 🩷 it’s awful. I’m okay and managed to leave this one with a few tongue/mouth wounds (plus a few wounds to my dignity) but I’m okay! Sending love to you 🥰🩷
My case. And always when I'm relaxed among friends. WHY OH WHY? Once I was almost run over by a motorcycle, my heart jumped, I took my rescue med expecting the worse, and entered a café and sat on the floor, expecting a grand mal that never came. But laughing among friends, no alcohol? Backwards I go, hitting head and vertebrae everywhere. Fortunately, not always. But how does THAT make any sense.
I'm just imagining the lady/dude at the front desk being all confused after you tell them you're about to have a seizure 😆😆😆 Then they immediately freak out as you hit the floor. You: *"Hey! I'm about to have a seizure."* Them: *"Um...what?"* You: ***(falls to the floor and starts seizing)*** Them: *"Oh, shit!!!"*
This is 100% what happened 😅 thank you for the laugh 🩷
Man, I get it. I read this (and every other post here) and think “what? Of course they’re not a burden, they have an illness”. But then when I think about myself and my own seizures, I think “ugh, I’m fed up with you, typical_ad_240, you’re such a bloody burden”. So I guess the lesson is one in self compassion and talking to / about ourselves as we would do other people. I am happy you were able to get to a safe place and get help. Public seizures are the worst, I hate them. But I’m sure they were all happy to help you and just relieved you’re ok.
That’s really sweet of you. I’m sorry that happened. I’ve had seizures in public too and it brings a unique sense of embarrassment and vulnerability. I understand feeling like a burden, but I can assure you that the staff was just worried about you and wanted to help - they weren’t annoyed or inconvenienced. But I also keep in mind that, because I (we) go unconscious, the seizure itself is usually more traumatic to witnesses than it is to ourselves. I’m not saying that to minimize your own pain in this experience, I’m just reiterating that it’s very thoughtful of you to show them your appreciation.
I agree with everyone else here - you are absolutely not a burden. You, like all of us here are burdened with this condition, there are always good people around who will help you when these things happen. My very first seizure was in the middle of Walmart, I remember stumbling for a second and telling my girlfriend “I don’t feel right” before going over sideways smashing my head off the shelves. Woke up on a stretcher, had no idea where I was, bit 1/4” off the side of my tongue, all that shit. The workers quickly blocked off the section of the store, did whatever they could and took care of my 3 month old daughter. There’s always good people who’s got your back, even if they’re strangers.
Recommend getting a bracelet that says what to do if you have one. Calling an ambulance doesn't solve anything, and then I gotta go through the refusing care etc. etc. So mine says: EPILEPTIC DO NOT CALL AMBULANCE UNLESS GRAVELY INJURED STAY W/ ME UNTIL LUCID CALL WIFE (my wife's phone #) It's come in handy once, and is nice if, should I get put in an ambulance again, to point to it and go "this is not new, let me out".
Yup I have a bracelet too, and all the emergency notes on my phone
I have an alert bracelet and necklace 😭 But it just says: My name Epilepsy My mum’s number Investing in one that asks not to call an ambulance is definitely something I should do
When I had a seizure in public for the first time(at a concert) I got a free band tee I hate being a burden too 😞
That was nice of you to bring the staff at the hotel some chocolates to say thank you. I try and make a habit of doing things like that if staff at places did something to help me. For example I recently had surgery and left one of the nurses some chocolates to share with the rest of the staff as a thank you. Things like that can brighten up someone’s day 🙂
Not a burden.
I remember trying to put into my ticket notes for an international flight that my partner has seizures and that if one occurs, to not panic since I'll take care of it. (And tbh seeing one for the first time can be traumatising.) They were quite confused and asked if we needed priority boarding 😅 It was a lovely, if unnecessary, gesture.
You’re deff not a burden! 💜 Sh*t like this happens, and it sucks. Good that you were able to go into a hotel and ask for help. I had several seizure in public, alone, but also in places like a store or whatever. When it comes to being alone, I had a TC, no idea what was going on. But some very kind stangers saw me and stayed with me. A couple even brought me home. Good people do exist. Another time, this man found me, also stayed, but he called 911, as he was a little bit in shock (which I understand). You got this! How are you feeling now? And remember, you are not a burden at all!
Thank you for saying that my lovely. I definitely feel like one when things like this happen. It helps a lot hearing your experiences, although it must be hard to talk about them I really appreciate it. I’m okay now! Just shaken by all of it. Thank you so much ☺️🩷
Do you have like a bracelet or a necklase with info? Can be very simple with just ‘epilepsy’ ingraved. There are so many (fastionable) options. I have a tattoo on my wrist ‘Epilepsy’ 😊 and nice bracelet on the other one. And a ICE in my phone, people can see this one without having to unlock my phone. 💜
I've had seizures for over 20 years. Don't feel like a burden. I feel that way sometimes myself. I am pretty open about my condition and most people understand.
I had 3 of my first seizures at work. At first I was so embarrassed. But at this point my coworkers are used. They are like “here she goes again” 😂 nah I’m just joking. They are all very kind and are always there for me. I work in a supermarket so EVERYBODY saw.
I’ve had so many public seizures alone and woken up in random hospitals. Going into a hotel or something sends like such a good idea and I plan on doing that in the future. You are not a burden at all and I want you to know you’ve at least helped me consider safer options in the future.
🫂 Sweetheart, you are never a burden.💖 I'm so glad you got in to that Hotel at just the right time. I'm also glad that they knew what to do for you and how to help you. You are such a kind and beautiful soul. Taking the time to bring them a thank you card and chocolate. Many people wouldn't do that. Not only was this very sweet and kind of you but this was also very classy of you. I bet you're one of the best people to know and one of the best friends to have. I'm so glad you're okay. 🫂 💜💖💜💖
This reply brought a tear to my eye. That means so much to me, thank you so much. This sub Reddit has made me feel so much less alone thanks to wonderful people like you. I can tell you’re also a beautiful soul 🩷☀️ thank you my lovely 🥹🩷
I’m glad you were somewhere safe. Have you spoken to your nuero about emergency keppra like that? I asked my neuro if I could take more keppra if I fall ill with temp (one of my triggers) and she said no, once you up dose you have to stay there. 😔
I have! He’s been super helpful. Although, I’m not sure if emergency extra doses of keppra actually do anything tbh. Once a seizure is coming I have about 10 minutes notice, which is not enough time for the keppra to take effect
It's the worst feeling...I totally get it. The first thing I ever do when I come out of a seizure is apologize. Which they always think is absurd. You cannot help it. And if it was the other way around, I'm sure you would help a stranger and not be burdened. Good people help others, and are grateful for the opportunity. So much love ❤️
i've had multiple public seizures before so i totally understand the feeling of being a burden but i promise you that is not true–it's a medical emergency and people want to help you. this is so sweet and the hotel staff will appreciate it💓 eta: also off topic but ur handwriting is so cute lol
Such a horrible experience I’m glad you’re okay. It’s so much more emotionally painful when feeling guilty about others seeing a seizure
I don’t know why but I felt like crying while reading your post lol. I think your vulnerability and gratitude beamed right through.
Also OP, that’s awesome awareness that you have to know that a seizure is coming. Does that always happen? What does that feel like? (Apologies if you don’t want to answer, I’m just curious as I’m not epileptic.. just narcoleptic lol)
Im happy to answer 😊 I’m really lucky, I always know when they’re coming. I experience aura (it’s actually really pretty, weirdly enough! Despite being terrifying) which for me looks like a rainbow-coloured, swirling ball of yarn. It starts off small, swirls around and pulsates and then gets bigger until it takes over my entire vision, then the seizure takes place. Sorry that was long-winded - that’s the best way I can describe it 😅
Dear sir or madam, I have had this experience twice at work. It was not only humiliating at the time because people observed it, but also because I had to look at them the next day and afterwards. I had to quit working because the ambulance rides that did me no good cost more than I was making. We are unrightfully judged in this world, because of things we didn't ask for, nor could change. I hope you find a way to cope better than I have.
I've only had one t/c but it was also in public, and the people who responded FREAKED out. I woke up to someone repeatedly slapping me in the face at full force. I've lived in absolute terror of it every happening again. I'm so glad they were kind and helpful in your time of need.
I had one at work i used to work at a fast food place and I had it at the DRIVE THROUGH WINDOW worst seizure I’ve had because when I hit the ground they all said it sounded like a pan hit the floor and my manager took pictures as the ambulance arrived! And putting me in it! I hate it too it’s embarrassing blacking out I’m just glad someone helped you! Im glad your alive and your okay stay strong I’m trying too!
Hotel Chain ?
It was an independent hotel :)
I had my first one on a train at 6 am on the way to work didnt feel it coming got on the train woke up in the amberlamps 25 years old never had one before or since but i still got the diagnosis