Just disgioned

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Hi guys, so i believe i was just diogionsed with ep last friday, went to see neuro who previously thought i was having breath holding spells, and was a strange case. To coming home with meds and ep nurses number from our last vist... not quiet sure if neuro did explain things to me as i stupidly went alone. Heard mini onset focal seizures. Which i believe is the funny feelings i have been having for over 10years, and have had 4 full convulsive seizures in last 4 years. I am really just looking to find other people in the same situation as me to talk to. I feel like no one understands what its like to have a digonises after so many years of getting by with this. And that it is impacting me mentally.

Comments

Sorry for terrible spelling

Submitted by Kat89 on Sun, 2018-12-30 - 05:24

Sorry for terrible spelling in post lol

Hi Kathryn:So sometimes the

Submitted by Jazz101 on Sun, 2018-12-30 - 20:25

Hi Kathryn:So sometimes the biggest challenge in life is explaining to others, who may have no idea of medical conditions, how it is affecting you. What's more is the Epilepsy is very misunderstood, even by many in the medical field. No all. A few.As a result, with Epilepsy you have to be selective in even your medical team, meaning the hospital and the neurologist. Remember that not all neurologists specialize in Epilepsy. Some specialize in other neurological conditions, such as a stroke. My advice to you is to find a hospital with pretty good ratings in neurology and neurosurgery. The source I used and that I recommend is US News and World Report. Here is the link to neurology and neurosurgery and the hospitals with the best ratings, if you are in the United States.https://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgeryIf you find one that is in your state, call them and find out if they have what's called a "Comprehensive Epilepsy Center." I am in New York City and I know a few who do. In terms of others, as in friends or family members who might not get it, well, many of them usually need time. I say that because they may not know much about Epilepsy. Heck, they may not know much about the brain and how neurological activity sort of plays a role in so many areas. I think it's a good start to come to this site and lay out your scenario. Many here can identify with some of the challenges that can arise with Epilepsy. While Epilepsy has its own medical challenges, the irony is that the top challenge for many is not Epilepsy. Instead it's how many close to them respond to their diagnosis all because of how little they know. That and some of the old nonsensical beliefs of this condition, things individuals should now longer be believing given we know the earth is round and not flat. :)Given your diagnosis is new, although it looks like they evidence was there a while ago, well, it will take time for you to adjust especially given no one close to you seems to get it. That said, everyone here with Epilepsy, myself included, gets it. So don't allow their feelings to govern how you feel about yourself. Key word there is "govern" because I can imagine it has to be annoying. The upside for anyone with Epilepsy is that neurology has advanced significantly Kathryn. As a result it's not like you are on your own there either. Also, having Epilepsy doesn't mean it has to define you Kathryn. it doesn't mean you are less smart or less something else. I have it and I sure won't buy into making anyone make me feel any less. Instead I remind myself that in life we will meet individuals who simply don't have much knowledge of the brain. But that doesn't mean we have to allow their lack of knowledge to make us question ourselves to the point where we get lost. Your diagnosis is new so it will take time for you to adjust. That means at times you might feel down, as you seem to be at this time. It's just natural. That said, your focus at this time shouldn't be about convincing everyone of how you feel. I say that because in no area of life can anybody convince everyone in any area. I sure can't do it. If you're telling someone "truck" is spelt "truck" and they are telling you no it's "truk", why try to convince that individual? See what I am saying? Instead it should make you laugh. We're here Kathryn. We have the diagnosis, and we are trying to take it on by looking into hospitals who do a good job there. You have a lot of company in this area so go easy on yourself for now if others are making you beat down yourself. Best Regards

Hi Kathryn:So sometimes the biggest challenge in life is explaining to others, who may have no idea of medical conditions, how it is affecting you. What's more is the Epilepsy is very misunderstood, even by many in the medical field. No all. A few.As a result, with Epilepsy you have to be selective in even your medical team, meaning the hospital and the neurologist. Remember that not all neurologists specialize in Epilepsy. Some specialize in other neurological conditions, such as a stroke. My advice to you is to find a hospital with pretty good ratings in neurology and neurosurgery. The source I used and that I recommend is US News and World Report. Here is the link to neurology and neurosurgery and the hospitals with the best ratings, if you are in the United States.https://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgeryIf you find one that is in your state, call them and find out if they have what's called a "Comprehensive Epilepsy Center." I am in New York City and I know a few who do. In terms of others, as in friends or family members who might not get it, well, many of them usually need time. I say that because they may not know much about Epilepsy. Heck, they may not know much about the brain and how neurological activity sort of plays a role in so many areas. I think it's a good start to come to this site and lay out your scenario. Many here can identify with some of the challenges that can arise with Epilepsy. While Epilepsy has its own medical challenges, the irony is that the top challenge for many is not Epilepsy. Instead it's how many close to them respond to their diagnosis all because of how little they know. That and some of the old nonsensical beliefs of this condition, things individuals should now longer be believing given we know the earth is round and not flat. :)Given your diagnosis is new, although it looks like they evidence was there a while ago, well, it will take time for you to adjust especially given no one close to you seems to get it. That said, everyone here with Epilepsy, myself included, gets it. So don't allow their feelings to govern how you feel about yourself. Key word there is "govern" because I can imagine it has to be annoying. The upside for anyone with Epilepsy is that neurology has advanced significantly Kathryn. As a result it's not like you are on your own there either. Also, having Epilepsy doesn't mean it has to define you Kathryn. it doesn't mean you are less smart or less something else. I have it and I sure won't buy into making anyone make me feel any less. Instead I remind myself that in life we will meet individuals who simply don't have much knowledge of the brain. But that doesn't mean we have to allow their lack of knowledge to make us question ourselves to the point where we get lost. Your diagnosis is new so it will take time for you to adjust. That means at times you might feel down, as you seem to be at this time. It's just natural. That said, your focus at this time shouldn't be about convincing everyone of how you feel. I say that because in no area of life can anybody convince everyone in any area. I sure can't do it. If you're telling someone "truck" is spelt "truck" and they are telling you no it's "truk", why try to convince that individual? See what I am saying? Instead it should make you laugh. We're here Kathryn. We have the diagnosis, and we are trying to take it on by looking into hospitals who do a good job there. You have a lot of company in this area so go easy on yourself for now if others are making you beat down yourself. Best Regards

Hi Kathryn:So sometimes the biggest challenge in life is explaining to others, who may have no idea of medical conditions, how it is affecting you. What's more is the Epilepsy is very misunderstood, even by many in the medical field. No all. A few.As a result, with Epilepsy you have to be selective in even your medical team, meaning the hospital and the neurologist. Remember that not all neurologists specialize in Epilepsy. Some specialize in other neurological conditions, such as a stroke. My advice to you is to find a hospital with pretty good ratings in neurology and neurosurgery. The source I used and that I recommend is US News and World Report. Here is the link to neurology and neurosurgery and the hospitals with the best ratings, if you are in the United States.https://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgeryIf you find one that is in your state, call them and find out if they have what's called a "Comprehensive Epilepsy Center." I am in New York City and I know a few who do. In terms of others, as in friends or family members who might not get it, well, many of them usually need time. I say that because they may not know much about Epilepsy. Heck, they may not know much about the brain and how neurological activity sort of plays a role in so many areas. I think it's a good start to come to this site and lay out your scenario. Many here can identify with some of the challenges that can arise with Epilepsy. While Epilepsy has its own medical challenges, the irony is that the top challenge for many is not Epilepsy. Instead it's how many close to them respond to their diagnosis all because of how little they know. That and some of the old nonsensical beliefs of this condition, things individuals should now longer be believing given we know the earth is round and not flat. :)Given your diagnosis is new, although it looks like they evidence was there a while ago, well, it will take time for you to adjust especially given no one close to you seems to get it. That said, everyone here with Epilepsy, myself included, gets it. So don't allow their feelings to govern how you feel about yourself. Key word there is "govern" because I can imagine it has to be annoying. The upside for anyone with Epilepsy is that neurology has advanced significantly Kathryn. As a result it's not like you are on your own there either. Also, having Epilepsy doesn't mean it has to define you Kathryn. it doesn't mean you are less smart or less something else. I have it and I sure won't buy into making anyone make me feel any less. Instead I remind myself that in life we will meet individuals who simply don't have much knowledge of the brain. But that doesn't mean we have to allow their lack of knowledge to make us question ourselves to the point where we get lost. Your diagnosis is new so it will take time for you to adjust. That means at times you might feel down, as you seem to be at this time. It's just natural. That said, your focus at this time shouldn't be about convincing everyone of how you feel. I say that because in no area of life can anybody convince everyone in any area. I sure can't do it. If you're telling someone "truck" is spelt "truck" and they are telling you no it's "truk", why try to convince that individual? See what I am saying? Instead it should make you laugh. We're here Kathryn. We have the diagnosis, and we are trying to take it on by looking into hospitals who do a good job there. You have a lot of company in this area so go easy on yourself for now if others are making you beat down yourself. Best Regards

Hi nigel. Thank you very much

Submitted by Kat89 on Tue, 2019-01-01 - 13:48

Hi nigel. Thank you very much for your responce. And what a responce it was. Wishing you a happy, healthy and prosperous New year. Unfortuntaly i am not from the U.S. Im from Ireland. Although it is so good to talk to others in the same situation and feel less alone. You are completley right in regard to others not truley understanding. No fault on there part, i am the first to have epelipsy in family and friends. I will deffo try to hold my head up, get plenty of info and hopefully some new friends along the way who understand. Thank you so much for your responce again. Im going to save that... lots of good points... makes for an intresting read... esepicially when im feeling low, it will pick me up.