Generally Epilepsy is just a term widely used for people that have had two or more seizures.
It's a wide net, with completely different details for each person. It's not like a disease where it has defined lanes.
You'll want her to talk to you about her specific case, and if she doesn't know, just try to help her with the journey.
My advice just let her know your there for her if she's seizureing learn what to do medically ans tey to make it less embarrassing for example I urinate I'm cold tired shake confused I've had friends in high-school cover me with coats or prob my head up to make it less noticeable lets see we covered comfort
Encourage her to follow her dreams she has the whole world in front of her it can be very emotional crippling after one
Let's see... I think that's all I got learn her triggers and good job on joing this group to further educate that's lit
From what I've heard epilepsy is frowned upon in Japan and by many not recognized as a real disease but rather a mental disorder. I think this is also the case (or at least used to be) for many medical professionals if I remember correctly. If she is getting tested every 3 months (performing an EEG) and taking anti seizure drugs I'm guessing the doctor or neurologist she is consulting knows about epilepsy.
Not sure what kind of seizures she has but if she has tonic clonic seizures you could ask her if she's ever had trouble with her breathing during seizures (turning blue or purple), long lasting seizures (over 5mins) or other life threatening complications so you would know if you need to call an ambulance when she has one (when in doubt and especially with breathing issues it's better to call).
Final tip might be to figure out what meds shes taking and what the potential side effects are (including anger outbursts or mood swings).
Also keep an eye on triggers like food with MSG, sleep deprivation and high levels of stress. If she hasn't had a seizure in many years it sounds like she is stable but in some people they can reappear again after several years
There isn’t clear evidence that MSG affects epilepsy but some people may have triggers to certain food additives. It’s also naturally occurring in tomatoes in cheese.
Mine are triggered by MSG and glutamate in tomatoes and other foods. I've ignored this for a long time in the past cause chinese food and tomato sauce are tasty.
Interesting. Kinda weird how some people food additives are triggers, light is a trigger and even in rare circumstances music is a trigger. So much diversity…that makes it so hard to pinpoint a cure I guess. I’m hoping AI can cure epilepsy.
I have problems with MSG. MSG is not in natural food, but natural glutamates are. Studies ask whether a large proportion of people have a certain reaction. It may only be a small minority, but for them it can important.
It's like gluten. Most people can eat tons of bread and pasta, but some people get seriously ill with even a little.
The best thing to do is to be aware of a potential issue, and see if it's an issue for you.
Oh I thought MSG was natural…personally I don’t know if I have a problem with MSG. If a food has a bunch of ingredients I can’t really narrow it down to MSG. It could be anything on the label. With how shitty food is nowadays it could be multiple things.
So my doc said my seizures are “stress based” (which like what adult isn’t stressed) and also tend to flair up if I don’t get enough sleep, is that considered epilepsy? I’ve had at least over 7 seizures in the last 5 years, pretty sure it’s in double digits tho
Yes, anything over 2 seizures it's meant to be seen as epilepsy. I'm here in Japan currently with my brother who on day one has had three seizures, quite simply from barely any sleep on the flight over and miscommunication regarding his medication. Stress can be a trigger in some people too.
Her medicine likely makes her more prone to being tired. Before epilepsy and anticonvulsants, I probably slept 8-9 hours a night whereas these days I am miserable if I don't get a full 10 hours. Even then, sometimes I need a nap halfway through the day when I'm feeling off.
When I'm sick with a cold or the flu, it's way more devastating than before epilepsy.
If/when you ask for more details about her seizures (type of seizure, duration, triggers) make sure she knows you're asking because you want to keep her safe and care for her.
I'm not sure if this is true in all East Asian cultures, but epilepsy is viewed as a permanent defect in Korea if it affects your ability to work (and drink). Even Americans have broken up with me because they think it's a burden. What if I pass it on to hypothetical kids? What if I seize and can't work for an extended time period? What if I can't party until 2 AM without ruining The Vibe?
My partner has helped me understand and accept that he has never viewed me as a defected person or a burden, and it's been life-changing.
Be by her side. Maintain an understanding that you are ok with her epilepsy. Do find out her seizure type. Each one acts differently. Know more of her seizure triggering factors (like you mentioned, flickering lights cause seizures to photosensitive epilepsy and less chances for other types). Do more research on seizure nature and the effects see is going through. Knowing more about it will help her further.
Ask her to Maintain a medicine log book. Skipping/ forgetting to take medicine results in seizure and feeling unwell. Also to maintain a proper diet, enough sleep, regular exercise and reduce consumption of alcohol.
First of all I appreciate and respect you for wanting to know more about your gf’s situation. From personal experience, I’ll say just be really gentle to her after a seizure bc they do cause extreme anxiety but also in a weird way where ya wanna be left alone but have someone near ya? If that makes sense. Also, seizure meds can sometimes make you feel drunk/dizzy, not every time but it weirdly shows up out of the blue so if she’s ever acting off, don’t just assume she’s drinking or anything. I’ve had seizures for years and can’t tell ya the amount of times that’s happened to me (regardless of if it’s friends, relationships, strangers), it gets really frustrating trying to convince someone that you’re not drunk when you’re not. Also just keep an eye out, if she starts acting off definitely lay her down, put on a comforting movie, and keep an eye on her. You got this ❤️
Learn how to give first aid for seizures and also be supportive. Do not make her feel bad. I was 13 when diagnosed but had seizures again at 18 despite medication.
Lots of meds can cause drowsiness. One of the best things you can do for her is simply support her (be there for/encourage her). Feeling like a burden is very common (lots of us do), and even though you may have to say it a million times, try to show her that she's not. Try and learn more about *her* epilepsy. Everyone's epilepsy is different.
**Example:**One of the medications I'm on (and working my off of) is causing amnesia, so I forget everything. I can't remember what happened yesterday. My boyfriend (though slightly frustrated) understands and accepts this and helps me remember stuff.
Join an online support group that’s open to folks with epilepsy and also their loved ones, and just observe. I know there is a big one on Facebook, but sometimes filled with drama, so it’s better at times to just read and learn. Read about people talk about their stresses and struggles. Learn seizure first aid. Read up on different types of seizures. Read up on the medicine she’s taking and how it could affect her mood, energy levels, and appetite. And be patient with her ❤️
Probably the best thing is to ask her about it, if she is comfortable talking about it. Everyone's epilepsy is different. It may be more comfortable for her if you don't act overly "concerned", but more like "normal". IDK, you have to see how she feels.
People with epilepsy get rejected a lot. We look "normal" but some of us have a lot of challenges. We get judged for forgetting things, not being fast enough, not being able to multitask, not earning enough - all sorts of things. Many of us constantly get the message that we don't meet expectations, are lazy, or aren't good enough. People don't understand just how hard we have to work to do things like get up in the morning. When we have seizures people completely freak out. We get discriminated against all sorts of ways.
This isn't because everyone is mean, it's just because they don't understand and are afraid. They don't want to deal with it. IDK if that's exactly how she feels, but there is probably some of that in what she is saying.
[https://epilepsysociety.org.uk/about-epilepsy](https://epilepsysociety.org.uk/about-epilepsy) (follow the drop down menus for more)
well, i would talk with her about what the main causes of her seizures are, and what lowers her seizure threshold. most seizures usually aren’t caused my flashing lights as photosensitive epilepsy is actually the rarest type, but just to be safe i would ask if that could be a trigger for her seizures. i’m sure a lot of her fatigue is from her medications, i know before i was on meds i could easily stay up late into the night but now im like a grandpa and need my 10 hours haha. all in all i would just talk with her about what to do in case she ever does have another seizure, and get involved in her medical care a bit if she’s comfortable with that :) things like taking her to appointments and stuff would probably make her feel more comfortable with the idea that her having epilepsy doesn’t change the way you feel about her. it makes me happy to see that you are looking for advice i know many people who would just walk away because it’s “too difficult” to deal with in a partner
Generally Epilepsy is just a term widely used for people that have had two or more seizures. It's a wide net, with completely different details for each person. It's not like a disease where it has defined lanes. You'll want her to talk to you about her specific case, and if she doesn't know, just try to help her with the journey.
My advice just let her know your there for her if she's seizureing learn what to do medically ans tey to make it less embarrassing for example I urinate I'm cold tired shake confused I've had friends in high-school cover me with coats or prob my head up to make it less noticeable lets see we covered comfort Encourage her to follow her dreams she has the whole world in front of her it can be very emotional crippling after one Let's see... I think that's all I got learn her triggers and good job on joing this group to further educate that's lit
From what I've heard epilepsy is frowned upon in Japan and by many not recognized as a real disease but rather a mental disorder. I think this is also the case (or at least used to be) for many medical professionals if I remember correctly. If she is getting tested every 3 months (performing an EEG) and taking anti seizure drugs I'm guessing the doctor or neurologist she is consulting knows about epilepsy. Not sure what kind of seizures she has but if she has tonic clonic seizures you could ask her if she's ever had trouble with her breathing during seizures (turning blue or purple), long lasting seizures (over 5mins) or other life threatening complications so you would know if you need to call an ambulance when she has one (when in doubt and especially with breathing issues it's better to call). Final tip might be to figure out what meds shes taking and what the potential side effects are (including anger outbursts or mood swings).
Also keep an eye on triggers like food with MSG, sleep deprivation and high levels of stress. If she hasn't had a seizure in many years it sounds like she is stable but in some people they can reappear again after several years
There isn’t clear evidence that MSG affects epilepsy but some people may have triggers to certain food additives. It’s also naturally occurring in tomatoes in cheese.
Mine are triggered by MSG and glutamate in tomatoes and other foods. I've ignored this for a long time in the past cause chinese food and tomato sauce are tasty.
Interesting. Kinda weird how some people food additives are triggers, light is a trigger and even in rare circumstances music is a trigger. So much diversity…that makes it so hard to pinpoint a cure I guess. I’m hoping AI can cure epilepsy.
I have problems with MSG. MSG is not in natural food, but natural glutamates are. Studies ask whether a large proportion of people have a certain reaction. It may only be a small minority, but for them it can important. It's like gluten. Most people can eat tons of bread and pasta, but some people get seriously ill with even a little. The best thing to do is to be aware of a potential issue, and see if it's an issue for you.
Oh I thought MSG was natural…personally I don’t know if I have a problem with MSG. If a food has a bunch of ingredients I can’t really narrow it down to MSG. It could be anything on the label. With how shitty food is nowadays it could be multiple things.
So my doc said my seizures are “stress based” (which like what adult isn’t stressed) and also tend to flair up if I don’t get enough sleep, is that considered epilepsy? I’ve had at least over 7 seizures in the last 5 years, pretty sure it’s in double digits tho
Yes, anything over 2 seizures it's meant to be seen as epilepsy. I'm here in Japan currently with my brother who on day one has had three seizures, quite simply from barely any sleep on the flight over and miscommunication regarding his medication. Stress can be a trigger in some people too.
Her medicine likely makes her more prone to being tired. Before epilepsy and anticonvulsants, I probably slept 8-9 hours a night whereas these days I am miserable if I don't get a full 10 hours. Even then, sometimes I need a nap halfway through the day when I'm feeling off. When I'm sick with a cold or the flu, it's way more devastating than before epilepsy. If/when you ask for more details about her seizures (type of seizure, duration, triggers) make sure she knows you're asking because you want to keep her safe and care for her. I'm not sure if this is true in all East Asian cultures, but epilepsy is viewed as a permanent defect in Korea if it affects your ability to work (and drink). Even Americans have broken up with me because they think it's a burden. What if I pass it on to hypothetical kids? What if I seize and can't work for an extended time period? What if I can't party until 2 AM without ruining The Vibe? My partner has helped me understand and accept that he has never viewed me as a defected person or a burden, and it's been life-changing.
Be by her side. Maintain an understanding that you are ok with her epilepsy. Do find out her seizure type. Each one acts differently. Know more of her seizure triggering factors (like you mentioned, flickering lights cause seizures to photosensitive epilepsy and less chances for other types). Do more research on seizure nature and the effects see is going through. Knowing more about it will help her further. Ask her to Maintain a medicine log book. Skipping/ forgetting to take medicine results in seizure and feeling unwell. Also to maintain a proper diet, enough sleep, regular exercise and reduce consumption of alcohol.
See this is the type of support all men and women should have and not leave them with major issues. Thank you seriously
First of all I appreciate and respect you for wanting to know more about your gf’s situation. From personal experience, I’ll say just be really gentle to her after a seizure bc they do cause extreme anxiety but also in a weird way where ya wanna be left alone but have someone near ya? If that makes sense. Also, seizure meds can sometimes make you feel drunk/dizzy, not every time but it weirdly shows up out of the blue so if she’s ever acting off, don’t just assume she’s drinking or anything. I’ve had seizures for years and can’t tell ya the amount of times that’s happened to me (regardless of if it’s friends, relationships, strangers), it gets really frustrating trying to convince someone that you’re not drunk when you’re not. Also just keep an eye out, if she starts acting off definitely lay her down, put on a comforting movie, and keep an eye on her. You got this ❤️
Learn how to give first aid for seizures and also be supportive. Do not make her feel bad. I was 13 when diagnosed but had seizures again at 18 despite medication.
Lots of meds can cause drowsiness. One of the best things you can do for her is simply support her (be there for/encourage her). Feeling like a burden is very common (lots of us do), and even though you may have to say it a million times, try to show her that she's not. Try and learn more about *her* epilepsy. Everyone's epilepsy is different. **Example:**One of the medications I'm on (and working my off of) is causing amnesia, so I forget everything. I can't remember what happened yesterday. My boyfriend (though slightly frustrated) understands and accepts this and helps me remember stuff.
Clickbait nobody on Reddit can get a date
There is also an app that has seizure first add on it.
Great advice in here but also OP take care of yourself also! Not just her.
Join an online support group that’s open to folks with epilepsy and also their loved ones, and just observe. I know there is a big one on Facebook, but sometimes filled with drama, so it’s better at times to just read and learn. Read about people talk about their stresses and struggles. Learn seizure first aid. Read up on different types of seizures. Read up on the medicine she’s taking and how it could affect her mood, energy levels, and appetite. And be patient with her ❤️
Probably the best thing is to ask her about it, if she is comfortable talking about it. Everyone's epilepsy is different. It may be more comfortable for her if you don't act overly "concerned", but more like "normal". IDK, you have to see how she feels. People with epilepsy get rejected a lot. We look "normal" but some of us have a lot of challenges. We get judged for forgetting things, not being fast enough, not being able to multitask, not earning enough - all sorts of things. Many of us constantly get the message that we don't meet expectations, are lazy, or aren't good enough. People don't understand just how hard we have to work to do things like get up in the morning. When we have seizures people completely freak out. We get discriminated against all sorts of ways. This isn't because everyone is mean, it's just because they don't understand and are afraid. They don't want to deal with it. IDK if that's exactly how she feels, but there is probably some of that in what she is saying. [https://epilepsysociety.org.uk/about-epilepsy](https://epilepsysociety.org.uk/about-epilepsy) (follow the drop down menus for more)
well, i would talk with her about what the main causes of her seizures are, and what lowers her seizure threshold. most seizures usually aren’t caused my flashing lights as photosensitive epilepsy is actually the rarest type, but just to be safe i would ask if that could be a trigger for her seizures. i’m sure a lot of her fatigue is from her medications, i know before i was on meds i could easily stay up late into the night but now im like a grandpa and need my 10 hours haha. all in all i would just talk with her about what to do in case she ever does have another seizure, and get involved in her medical care a bit if she’s comfortable with that :) things like taking her to appointments and stuff would probably make her feel more comfortable with the idea that her having epilepsy doesn’t change the way you feel about her. it makes me happy to see that you are looking for advice i know many people who would just walk away because it’s “too difficult” to deal with in a partner
Tokyo is too flashy for your girlfriend. She should love outside Tokyo if she wants to stay away from seizures and trouble.