Scared of SUDEP

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I’m a 29 year old male , I had my first convulsion when I was 15 taken to the hospital they said I had epilepsy. I take depakote 500mg at night to control it . Had another seizure at the age of 17 because I wasn’t taking my medication. That was the last seizure since I’ve been seizure free but still epileptic. I’ve read so many articles of SUDEP which scares me soooo much . I’m a hypochondriac hahah which does not help . I have to laugh because what else can I do . I’m so scared and depressed about SUDEP I wish people would pay more attention to our condition .

Comments

Hi Yancy61,Thank you for

Submitted by Anonymous on Fri, 2019-10-18 - 12:12

Hi Yancy61,Thank you for posting and congratulations on being seizure free, we wish you many years of seizure freedom ahead! We understand your concerns, talking about SUDEP and early death in epilepsy is tough, but it is important and necessary. Discussing ways to lower risk for SUDEP with your healthcare team can help you take actions to stay healthy, improve seizure control and guide you to making the safest lifestyle choices. Open, honest communication with your epilepsy care providers is critical. If you can’t talk openly with your healthcare team, or you feel that you aren’t working towards the same goals, it may be time to get a second opinion. For information regarding second opinions, or assistance finding a specialist please visit:https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinionshttps://www.epilepsy.com/living-epilepsy/find-epilepsy-specialistIf your doctor has not spoken to you about the health risks associated with epilepsy, you should ask your healthcare team about SUDEP. Learn more about questions to ask your healthcare provider by visiting: https://www.epilepsy.com/learn/early-death-and-sudep/sudep/preventing-sudep Join us October 30 at 8 p.m. ET for an educational webinar about understanding sudden unexpected death in epilepsy (SUDEP). Find out what is known and unknown, potential causes, what research is being done to help find answers, and how to ask your health care team about SUDEP. Learn more and register: https://bit.ly/2MxcMnT Participate in SUDEP Action Day https://www.epilepsy.com/learn/early-death-and-sudep/sudep/sudep-action-day, on October 23rd. . The day is devoted to raising awareness about sudden unexpected death in epilepsy, encouraging people with epilepsy to learn about SUDEP and their risk, and honoring the lives of those we have lost. Additionally, you may always contact our 24/7 Helpline, where trained information specialists are available to answer your questions about epilepsy and seizures. Specialists offer help, hope, support, guidance, and access to national and local resources. You can reach the 24/7 Helpline by calling 1-800-332-1000, emailing contactus@efa.org, or visiting us on the web at: epilepsy.com/helpline

Hi Yancy61,Thank you for posting and congratulations on being seizure free, we wish you many years of seizure freedom ahead! We understand your concerns, talking about SUDEP and early death in epilepsy is tough, but it is important and necessary. Discussing ways to lower risk for SUDEP with your healthcare team can help you take actions to stay healthy, improve seizure control and guide you to making the safest lifestyle choices. Open, honest communication with your epilepsy care providers is critical. If you can’t talk openly with your healthcare team, or you feel that you aren’t working towards the same goals, it may be time to get a second opinion. For information regarding second opinions, or assistance finding a specialist please visit:https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinionshttps://www.epilepsy.com/living-epilepsy/find-epilepsy-specialistIf your doctor has not spoken to you about the health risks associated with epilepsy, you should ask your healthcare team about SUDEP. Learn more about questions to ask your healthcare provider by visiting: https://www.epilepsy.com/learn/early-death-and-sudep/sudep/preventing-sudep Join us October 30 at 8 p.m. ET for an educational webinar about understanding sudden unexpected death in epilepsy (SUDEP). Find out what is known and unknown, potential causes, what research is being done to help find answers, and how to ask your health care team about SUDEP. Learn more and register: https://bit.ly/2MxcMnT Participate in SUDEP Action Day https://www.epilepsy.com/learn/early-death-and-sudep/sudep/sudep-action-day, on October 23rd. . The day is devoted to raising awareness about sudden unexpected death in epilepsy, encouraging people with epilepsy to learn about SUDEP and their risk, and honoring the lives of those we have lost. Additionally, you may always contact our 24/7 Helpline, where  trained information specialists are available to answer your questions about epilepsy and seizures. Specialists offer help, hope, support, guidance, and access to national and local resources. You can reach the 24/7 Helpline by calling 1-800-332-1000, emailing contactus@efa.org, or visiting us on the web at: epilepsy.com/helpline

Hi Yancy61,Thank you for posting and congratulations on being seizure free, we wish you many years of seizure freedom ahead! We understand your concerns, talking about SUDEP and early death in epilepsy is tough, but it is important and necessary. Discussing ways to lower risk for SUDEP with your healthcare team can help you take actions to stay healthy, improve seizure control and guide you to making the safest lifestyle choices. Open, honest communication with your epilepsy care providers is critical. If you can’t talk openly with your healthcare team, or you feel that you aren’t working towards the same goals, it may be time to get a second opinion. For information regarding second opinions, or assistance finding a specialist please visit:https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinionshttps://www.epilepsy.com/living-epilepsy/find-epilepsy-specialistIf your doctor has not spoken to you about the health risks associated with epilepsy, you should ask your healthcare team about SUDEP. Learn more about questions to ask your healthcare provider by visiting: https://www.epilepsy.com/learn/early-death-and-sudep/sudep/preventing-sudep Join us October 30 at 8 p.m. ET for an educational webinar about understanding sudden unexpected death in epilepsy (SUDEP). Find out what is known and unknown, potential causes, what research is being done to help find answers, and how to ask your health care team about SUDEP. Learn more and register: https://bit.ly/2MxcMnT Participate in SUDEP Action Day https://www.epilepsy.com/learn/early-death-and-sudep/sudep/sudep-action-day, on October 23rd. . The day is devoted to raising awareness about sudden unexpected death in epilepsy, encouraging people with epilepsy to learn about SUDEP and their risk, and honoring the lives of those we have lost. Additionally, you may always contact our 24/7 Helpline, where trained information specialists are available to answer your questions about epilepsy and seizures. Specialists offer help, hope, support, guidance, and access to national and local resources. You can reach the 24/7 Helpline by calling 1-800-332-1000, emailing contactus@efa.org, or visiting us on the web at: epilepsy.com/helpline

I understand being scared of

Submitted by notesofastranger on Wed, 2019-10-23 - 09:05

I understand being scared of SUDEP, essentially, for me, it is fear of the unknown and not having control. That's a frightening concept. However, there are a few things you can do. The first, is to stop feeding your fear monster. By this, I mean, however tempting, don't read anymore articles about SUDEP. Yes it could happen and it's important to acknowledge that, but it is also rare. Secondly (and I am someone who needs to listen to their own advice!) get to know your epilepsy. You might be seizure free, but it is still a part of you and that can be a difficult concept to get your head around sometimes. It will also still be affecting you in one way or another, whether that be the decisions you make or the medications you take and the side effects. Start a dialogue between you and your epilepsy, maybe in a spare notebook. See where it takes you. What's your relationship with your epilepsy? How do you address it subconsciously? Don't be scared of it, talk to it, it wants to be listened to, just as much as you do. However, like I said, this is a lesson that I myself am still trying to learn!

I worry about it daily but

Submitted by marshmallow on Thu, 2019-10-31 - 11:23

I worry about it daily but everyone tells me I'm over-reacting yet. But they don't understand they don't have epilepsy. People here understand though :)