Talking to family about newly diagnosed epilepsy

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I'm 25 and have recently been diagnosed with focal aware seizures and secondary generalized seizures. I had my first grandmal seizure back in June, a week after telling my dad that I was thinking about talking to my doctor about getting checked for seizures (due to an increase in episodes of difficulty with speech and understanding speech/ metallic or rotting smells/ high frequency buzzing/jamais vu/ disorientation and memory lapse.) My neuro believes that I have been having these episodes since I was a child. My problem is that I have no idea how to talk or explain to my family about my epilepsy. I have had issues with anxiety, major depression and severe insomnia since I was a very young child (my neuro thinks this is partially due to my seizures) and i've never bothered discussing these seizure symptoms with my family prior; I thought it was just a normal experience because i've had it since early childhood and was told that it was due to my mental health. I'm not sure how to explain to my family after all these years that these little episodes aren't just a symptom of my mental health and that not all seizures look like tonic-clonics. Has anyone else had an experience even vaguely like this? It would be nice to know how others talked to family and friends after being diagnosed as an adult.

Comments

This truly sounds like a

Submitted by Amy Jo on Fri, 2018-12-07 - 14:10

This truly sounds like a classic presentation for someone with partial seizures that started in childhood. Have met a number of people who have a story just like this, esp with respect to not knowing seizures were happening and that others have completely different experiences (your normal wasn't normal but how were you to know?). Check out the details on this site (under LEARN section) about seizures, it may give you some resources to refer people to as well. If your local affiliate is nearby or has support groups, they may have additional resources that help.

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By family are you referring

Submitted by Jazz101 on Mon, 2018-12-10 - 19:42

By family are you referring to your parents and your siblings?The trick with explaining Epilepsy to anyone is that you have to gear yourself for the fact that some simply will not understand. I think that is the most frustrating part for anyone. But do like me prior to undergoing surgery. My neurosurgeon sat me down and in the process outlined the immediate upsides and downsides. By downsides I mean things like you may have some extra challenges post surgery, such as speech and memory. The biggest letdown to any human is when we aren't realistic about what we can meet, or challenges we may face, in life on the whole. With Epilepsy, it's the same. So let's draw a parallel to my surgery and you trying to explain your diagnosis to your family or whomever it may be.Rule number 1.Stick to the fact that some simply may not understand even if they understand; meaning denial. As a result, they may respond in a way that may frustrate you, like probably saying; "I am not sure I want to hear about it." Key word it "might" because you just don't know. Nonetheless, factoring in that at least doesn't leave you overwhelmingly surprised should it happen.Rule number 2.Be simple. Don't tell yourself that you have to breakdown your diagnosis like a neurologist who may say; "Well, it looks like your temporal lobe is the center of the activity." Although it is neurologically correct to phrase it that way, you are talking to some individuals who may shake their head when you say "temporal lobe." So here is the best way to break it down. Do the Physics side. Draw a parallel to a device they can relate to. Probably a computer. Say: "So do you know that sometimes computer's freeze?" Then go on to say; "When it freezes, well, you are just left with a fixed image."From there, go on to say; "Well, with Epilepsy, it's sort of like the opposite." Then say; "Instead of just freezing and everything remains pretty calm, well, with Epilepsy, it's as if you have a rush of power/electricity on a device." Then ask, "what happens?" Say; "It responds in an odd way and then shuts down, right?"Well, with Epilepsy, it's the rush of power side. Because a particular area of the brain overreacts (what they term the focal(s)), it's initiates other parts of the brain to respond. Sort of like when someone jumps into a pool. It creates waves and those waves can change the behavior of the rest of the water in the pool.That is what a seizure is. And because seizures come in so many different forms, well, not every person with Epilepsy will respond the same. Some may lose a good bit of their motor skills, and that may cause them to fall. In others, that may not happen because those motor skills aren't significantly affected. The points is this lws5. Find parallels when you are speaking to others. Find something they can relate to, like storms and how the air can cause other areas to respond. If someone for you is a mechanic, ask him or her about how the engines work and then say: "So when the engine suddenly shots down, what are some of the causes." If he or she tells you of the causes, respond by saying; "It's the same with the brain. Because areas are interconnected, a shutdown or a sort-of spark, so to speak, can throw off the engine. Make sure you close by saying; "But the pool we saw the wave in is still usable, right? Or the car the shuts down in a particular engine area is still usable as long as it is controlled to some extent, right? Same with individuals who have seizures. We have incidental interference in the brain but we are still good to go when that eases, right?Best Regards

By family are you referring to your parents and your siblings?The trick with explaining Epilepsy to anyone is that you have to gear yourself for the fact that some simply will not understand. I think that is the most frustrating part for anyone. But do like me prior to undergoing surgery. My neurosurgeon sat me down and in the process outlined the immediate upsides and downsides. By downsides I mean things like you may have some extra challenges post surgery, such as speech and memory. The biggest letdown to any human is when we aren't realistic about what we can meet, or challenges we may face, in life on the whole. With Epilepsy, it's the same. So let's draw a parallel to my surgery and you trying to explain your diagnosis to your family or whomever it may be.Rule number 1.Stick to the fact that some simply may not understand even if they understand; meaning denial. As a result, they may respond in a way that may frustrate you, like probably saying; "I am not sure I want to hear about it." Key word it "might" because you just don't know. Nonetheless, factoring in that at least doesn't leave you overwhelmingly surprised should it happen.Rule number 2.Be simple. Don't tell yourself that you have to breakdown your diagnosis like a neurologist who may say; "Well, it looks like your temporal lobe is the center of the activity." Although it is neurologically correct to phrase it that way, you are talking to some individuals who may shake their head when you say "temporal lobe."  So here is the best way to break it down. Do the Physics side. Draw a parallel to a device they can relate to. Probably a computer. Say: "So do you know that sometimes computer's freeze?" Then go on to say; "When it freezes, well, you are just left with a fixed image."From there, go on to say; "Well, with Epilepsy, it's sort of like the opposite." Then say; "Instead of just freezing and everything remains pretty calm, well, with Epilepsy, it's as if you have a rush of power/electricity on a device." Then ask, "what happens?" Say; "It responds in an odd way and then shuts down, right?"Well, with Epilepsy, it's the rush of power side. Because a particular area of the brain overreacts (what they term the focal(s)), it's initiates other parts of the brain to respond. Sort of like when someone jumps into a pool. It creates waves and those waves can change the behavior of the rest of the water in the pool.That is what a seizure is. And because seizures come in so many different forms, well, not every person with Epilepsy will respond the same. Some may lose a good bit of their motor skills, and that may cause them to fall. In others, that may not happen because those motor skills aren't significantly affected. The points is this lws5. Find parallels when you are speaking to others. Find something they can relate to, like storms and how the air can cause other areas to respond. If someone for you is a mechanic, ask him or her about how the engines work and then say: "So when the engine suddenly shots down, what are some of the causes." If he or she tells you of the causes, respond by saying; "It's the same with the brain. Because areas are interconnected, a shutdown or a sort-of spark, so to speak, can throw off the engine. Make sure you close by saying; "But the pool we saw the wave in is still usable, right? Or the car the shuts down in a particular engine area is still usable as long as it is controlled to some extent, right? Same with individuals who have seizures. We have incidental interference in the brain but we are still good to go when that eases, right?Best Regards

By family are you referring to your parents and your siblings?The trick with explaining Epilepsy to anyone is that you have to gear yourself for the fact that some simply will not understand. I think that is the most frustrating part for anyone. But do like me prior to undergoing surgery. My neurosurgeon sat me down and in the process outlined the immediate upsides and downsides. By downsides I mean things like you may have some extra challenges post surgery, such as speech and memory. The biggest letdown to any human is when we aren't realistic about what we can meet, or challenges we may face, in life on the whole. With Epilepsy, it's the same. So let's draw a parallel to my surgery and you trying to explain your diagnosis to your family or whomever it may be.Rule number 1.Stick to the fact that some simply may not understand even if they understand; meaning denial. As a result, they may respond in a way that may frustrate you, like probably saying; "I am not sure I want to hear about it." Key word it "might" because you just don't know. Nonetheless, factoring in that at least doesn't leave you overwhelmingly surprised should it happen.Rule number 2.Be simple. Don't tell yourself that you have to breakdown your diagnosis like a neurologist who may say; "Well, it looks like your temporal lobe is the center of the activity." Although it is neurologically correct to phrase it that way, you are talking to some individuals who may shake their head when you say "temporal lobe." So here is the best way to break it down. Do the Physics side. Draw a parallel to a device they can relate to. Probably a computer. Say: "So do you know that sometimes computer's freeze?" Then go on to say; "When it freezes, well, you are just left with a fixed image."From there, go on to say; "Well, with Epilepsy, it's sort of like the opposite." Then say; "Instead of just freezing and everything remains pretty calm, well, with Epilepsy, it's as if you have a rush of power/electricity on a device." Then ask, "what happens?" Say; "It responds in an odd way and then shuts down, right?"Well, with Epilepsy, it's the rush of power side. Because a particular area of the brain overreacts (what they term the focal(s)), it's initiates other parts of the brain to respond. Sort of like when someone jumps into a pool. It creates waves and those waves can change the behavior of the rest of the water in the pool.That is what a seizure is. And because seizures come in so many different forms, well, not every person with Epilepsy will respond the same. Some may lose a good bit of their motor skills, and that may cause them to fall. In others, that may not happen because those motor skills aren't significantly affected. The points is this lws5. Find parallels when you are speaking to others. Find something they can relate to, like storms and how the air can cause other areas to respond. If someone for you is a mechanic, ask him or her about how the engines work and then say: "So when the engine suddenly shots down, what are some of the causes." If he or she tells you of the causes, respond by saying; "It's the same with the brain. Because areas are interconnected, a shutdown or a sort-of spark, so to speak, can throw off the engine. Make sure you close by saying; "But the pool we saw the wave in is still usable, right? Or the car the shuts down in a particular engine area is still usable as long as it is controlled to some extent, right? Same with individuals who have seizures. We have incidental interference in the brain but we are still good to go when that eases, right?Best Regards