My story of epilepsy

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Hello all so I want to share my story. I was diagnosed with epilepsy around 4 or 5 years old, it is genetic and runs strong in my family and unfortunately I am the only daughter with it. I was told every time I went into a grandmal seizure my heart would stop. Eventually I grew out of them in 4th grade after I completed school I tried to join the army to be a nurse out on the battle field to help our soldiers but I was denied and now I can see why. In June my epilepsy showed its ugly face again as I have had a atonic drop attack a petite mal and myoclonic seizures. As of right now I am no longer allowed to work under doctors orders I have numerous test I gotta go through all over again. My dream and my hard work in college to be a state cop has also been crushed I have lost so I much and can’t afford to make a living or yet get stuff I need along with trying to get a embrace seizure alert watch donated to me which seems to be failing me along with everything else. This is my sucky feel like giving up hopeless story

Comments

So the upside is that you are

Submitted by Jazz101 on Wed, 2018-09-12 - 20:53

So the upside is that you are talking about it. That is usually the first step. Whenever you get that, as you put it, "sucky feel like giving up", talking is usually the best start.I say that because with Epilepsy, there are a few things every person with this condition needs to know, and that is; "It's going to be a bumpy ride." That said, it doesn't mean you throw in the towel just like that. In my case it was about research, especially involving hospitals and how they were rated in the field of "neurology and neurosurgery."A good start for that is US News and World Report. The link is:https://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgeryWhen you go get there, try to see which hospital, with good ratings, is in your reach. That could mean a hospital in your state or one in a neighboring state that might not be far away from you. For example, if you live in New Jersey, and you are close to the George Washington bridge, then New York Presbyterian, Columbia, which is rated number one in the New York in neurology and neurosurgery, and number five in the US, well, you can start there. I'm just trying to give an example of a hospital that, while it may not be in your state, it may still be close to you. The other thing I would say to you is what my neurosurgeon said to me pre and post surgery, and that is "patience." Dealing with Epilepsy requires patience as you keep on looking into all of your options. For many it might not be surgery, nonetheless there are other options, such as the VNS and RNS and editing medication, all according to your neurologist. Given you have gone for a while without seizures only to see it pop up again, well, it comes down to their being able to do tests like a video EEG. That way they can get a first-hand look at where the seizures and compare it to old tests and decide what options you might have. I pushed for surgery because I was a candidate. That said, I still have to remain practical that the surgery cannot guarantee my being seizure free. After all, there was a tiny area that was way too close to language and speech that we could not remove in its entirety. Nonetheless, simply knowing that we went as far as we safely could in terms of surgery, well, that's enough for me.As a result, should seizures show up later, I am ready to look into the other options, such as increasing the medication, maybe changing the medication, just to see if it makes a difference. And if it doesn't, then it doesn't. But I am a firm believer in taking on challenges Epilepsy can throw your way. I can see, just from your username, that being a state cop means a lot to you. That said, being a member of the police department sometimes is more than just being in uniform on the beat. I am sure they may have other positions that might not involve being out driving. I majored in Journalism and I have been on the beat with cops once just to see what it's like and I can see why they really have a passion for it, hence why it also probably means so much to you too. That said, I am sure there are other areas you might be able to be a part of. But first things first. And that's taking on the tests your neurologists may want you to undergo so they can know more about what the specifics are today, compared to years ago. One step at a time staterookie. Let's see what the medical specifics show. Epilepsy is more common than many may think, hence it's not something where you are alone. According to this site, "There are 150,000 New Cases of Epilepsy Every Year" and "1 in 26 People in the United States will develop Epilepsy at some point in their lives." As a result, many of us can identify with you to some extent. After all, every patient is unique. That said, you have other fighters in this game. For all of us, Epilepsy comes down to; "The more we know."

So the upside is that you are talking about it. That is usually the first step. Whenever you get that, as you put it, "sucky feel like giving up", talking is usually the best start.I say that because with Epilepsy, there are a few things every person with this condition needs to know, and that is; "It's going to be a bumpy ride." That said, it doesn't mean you throw in the towel just like that. In my case it was about research, especially involving hospitals and how they were rated in the field of "neurology and neurosurgery."A good start for that is US News and World Report. The link is:https://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgeryWhen you go get there, try to see which hospital, with good ratings, is in your reach. That could mean a hospital in your state or one in a neighboring state that might not be far away from you. For example, if you live in New Jersey, and you are close to the George Washington bridge, then New York Presbyterian, Columbia, which is rated number one in the New York in neurology and neurosurgery, and number five in the US, well, you can start there. I'm just trying to give an example of a hospital that, while it may not be in your state, it may still be close to you. The other thing I would say to you is what my neurosurgeon said to me pre and post surgery, and that is "patience." Dealing with Epilepsy requires patience as you keep on looking into all of your options. For many it might not be surgery, nonetheless there are other options, such as the VNS and RNS and editing medication, all according to your neurologist.  Given you have gone for a while without seizures only to see it pop up again, well, it comes down to their being able to do tests like a video EEG. That way they can get a first-hand look at where the seizures and compare it to old tests and decide what options you might have. I pushed for surgery because I was a candidate. That said, I still have to remain practical that the surgery cannot guarantee my being seizure free. After all, there was a tiny area that was way too close to language and speech that we could not remove in its entirety. Nonetheless, simply knowing that we went as far as we safely could in terms of surgery, well, that's enough for me.As a result, should seizures show up later, I am ready to look into the other options, such as increasing the medication, maybe changing the medication, just to see if it makes a difference. And if it doesn't, then it doesn't. But I am a firm believer in taking on challenges Epilepsy can throw your way. I can see, just from your username, that being a state cop means a lot to you. That said, being a member of the police department sometimes is more than just being in uniform on the beat. I am sure they may have other positions that might not involve being out driving. I majored in Journalism and I have been on the beat with cops once just to see what it's like and I can see why they really have a passion for it, hence why it also probably means so much to you too. That said, I am sure there are other areas you might be able to be a part of. But first things first. And that's taking on the tests your neurologists may want you to undergo so they can know more about what the specifics are today, compared to years ago. One step at a time staterookie. Let's see what the medical specifics show. Epilepsy is more common than many may think, hence it's not something where you are alone. According to this site, "There are 150,000 New Cases of Epilepsy Every Year" and "1 in 26 People in the United States will develop Epilepsy at some point in their lives." As a result, many of us can identify with you to some extent. After all, every patient is unique. That said, you have other fighters in this game. For all of us, Epilepsy comes down to; "The more we know."

So the upside is that you are talking about it. That is usually the first step. Whenever you get that, as you put it, "sucky feel like giving up", talking is usually the best start.I say that because with Epilepsy, there are a few things every person with this condition needs to know, and that is; "It's going to be a bumpy ride." That said, it doesn't mean you throw in the towel just like that. In my case it was about research, especially involving hospitals and how they were rated in the field of "neurology and neurosurgery."A good start for that is US News and World Report. The link is:https://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgeryWhen you go get there, try to see which hospital, with good ratings, is in your reach. That could mean a hospital in your state or one in a neighboring state that might not be far away from you. For example, if you live in New Jersey, and you are close to the George Washington bridge, then New York Presbyterian, Columbia, which is rated number one in the New York in neurology and neurosurgery, and number five in the US, well, you can start there. I'm just trying to give an example of a hospital that, while it may not be in your state, it may still be close to you. The other thing I would say to you is what my neurosurgeon said to me pre and post surgery, and that is "patience." Dealing with Epilepsy requires patience as you keep on looking into all of your options. For many it might not be surgery, nonetheless there are other options, such as the VNS and RNS and editing medication, all according to your neurologist. Given you have gone for a while without seizures only to see it pop up again, well, it comes down to their being able to do tests like a video EEG. That way they can get a first-hand look at where the seizures and compare it to old tests and decide what options you might have. I pushed for surgery because I was a candidate. That said, I still have to remain practical that the surgery cannot guarantee my being seizure free. After all, there was a tiny area that was way too close to language and speech that we could not remove in its entirety. Nonetheless, simply knowing that we went as far as we safely could in terms of surgery, well, that's enough for me.As a result, should seizures show up later, I am ready to look into the other options, such as increasing the medication, maybe changing the medication, just to see if it makes a difference. And if it doesn't, then it doesn't. But I am a firm believer in taking on challenges Epilepsy can throw your way. I can see, just from your username, that being a state cop means a lot to you. That said, being a member of the police department sometimes is more than just being in uniform on the beat. I am sure they may have other positions that might not involve being out driving. I majored in Journalism and I have been on the beat with cops once just to see what it's like and I can see why they really have a passion for it, hence why it also probably means so much to you too. That said, I am sure there are other areas you might be able to be a part of. But first things first. And that's taking on the tests your neurologists may want you to undergo so they can know more about what the specifics are today, compared to years ago. One step at a time staterookie. Let's see what the medical specifics show. Epilepsy is more common than many may think, hence it's not something where you are alone. According to this site, "There are 150,000 New Cases of Epilepsy Every Year" and "1 in 26 People in the United States will develop Epilepsy at some point in their lives." As a result, many of us can identify with you to some extent. After all, every patient is unique. That said, you have other fighters in this game. For all of us, Epilepsy comes down to; "The more we know."

My story of epilepsy

Comments

So the upside is that you are

Submitted by Jazz101 on Wed, 2018-09-12 - 20:53

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