Drug-resistant epilepsy and no social life

CDC funded page

Not a CDC funded Page

Hi everone, This is my first time posting on this forum. I have drug-resistant epilepsy with focal seizures which happen 3-5 times a week right now. I am on a combination of meds and my neurologist and I are still trying to find the medication that works for me; the meds control my generalised seizures but not the focals. My problem is as my epilepsy became uncontrollable about 4 years ago my social life disappeared. I lost friends and feel isolated from "normal" life. I can't drive and due to the high frequency of my seizures and side effects from my medicine I have a hard time making friends and leaving the house. I feel so alone ... does anyone have any advice for me? Thanks!

Comments

I’m new to this. My 9 year

Submitted by Rialto on Mon, 2019-08-05 - 04:16

I’m new to this. My 9 year old has had the seizures but infrequently. I think this, or a support group like this is a great place to start. We’ve gone to doctors, and it seems that they don’t have many answers. So that is why I’m here, hoping to find out more about epilepsy. Hang in there!

Hi Lisa0311, Thank you for

Submitted by Anonymous on Mon, 2019-08-05 - 09:24

Hi Lisa0311, Thank you for posting, it sounds like you’ve been through a lot. It’s important to remember that you are not alone. However, we know that being diagnosed with epilepsy can be upsetting and make you feel isolated. One of the most important things to help you live with epilepsy is to find a support network. Learn more about your community support, here: https://www.epilepsy.com/learn/challenges-epilepsy/social-concerns https://www.epilepsy.com/learn/managing-your-epilepsy/self-management-programs You may also contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000, contactus@efa.org , epilepsy.com/helpline , where a trained information specialist can connect you to resources, provide referrals and additional support. Additionally, there are plenty of things you can do to reduce these feelings and manage your epilepsy: https://www.epilepsy.com/learn/managing-your-epilepsy Learn seizure first aid: https://www.epilepsy.com/learn/seizure-first-aid-and-safety Create a seizure response or action plan: https://www.epilepsy.com/living-epilepsy/toolbox/seizure-forms which is a helpful tool for those around you understand what do if you have a seizure Use a diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary Track your seizures, record your medical history, medications, side effects, moods, triggers, or other personal experiences. Have a Seizure alert device: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf It is also important to recognize that epilepsy is more than just seizures, overall well-being and emotional health is just as important: https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health The Wellness Institute: epilepsy.com/wellness ,has many helpful and easy-to-use tips & resources for maintaining a healthy lifestyle and maximizing the quality of life for you & your family. For practical & effective strategies to enhance your well-being, learn more here: https://www.epilepsy.com/living-epilepsy/toolbox/wellness-support-tools For assistance finding a specialist near you, or a second opinion, please visit: https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist or by visiting the National Association of Epilepsy Centers at: www.naec-epilepsy.org https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist/find-epilepsy-centerhttps://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinions

Hi Lisa0311, Thank you for posting, it sounds like you’ve been through a lot. It’s important to remember that you are not alone. However, we know that being diagnosed with epilepsy can be upsetting and make you feel isolated. One of the most important things to help you live with epilepsy is to find a support network. Learn more about your community support, here: https://www.epilepsy.com/learn/challenges-epilepsy/social-concerns https://www.epilepsy.com/learn/managing-your-epilepsy/self-management-programs  You may also contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000, contactus@efa.org , epilepsy.com/helpline , where a trained information specialist can connect you to resources,  provide referrals and additional support.  Additionally, there are plenty of things you can do to reduce these feelings and manage your epilepsy: https://www.epilepsy.com/learn/managing-your-epilepsy Learn seizure first aid: https://www.epilepsy.com/learn/seizure-first-aid-and-safety Create a seizure response or action plan: https://www.epilepsy.com/living-epilepsy/toolbox/seizure-forms which is a helpful tool for those around you understand what do if you have a seizure Use a diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary Track your seizures, record your medical history, medications, side effects, moods, triggers, or other personal experiences. Have a Seizure alert device:  https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf It is also important to recognize that epilepsy is more than just seizures, overall well-being and emotional health is just as important:  https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health   The Wellness Institute:  epilepsy.com/wellness   ,has many helpful and easy-to-use tips & resources for maintaining a healthy lifestyle and maximizing the quality of life for you & your family.  For practical & effective strategies to enhance your well-being, learn more here:  https://www.epilepsy.com/living-epilepsy/toolbox/wellness-support-tools For assistance finding a specialist near you, or a second opinion, please visit: https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist or by visiting the National Association of Epilepsy Centers at: www.naec-epilepsy.org https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist/find-epilepsy-centerhttps://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinions

Hi Lisa0311, Thank you for posting, it sounds like you’ve been through a lot. It’s important to remember that you are not alone. However, we know that being diagnosed with epilepsy can be upsetting and make you feel isolated. One of the most important things to help you live with epilepsy is to find a support network. Learn more about your community support, here: https://www.epilepsy.com/learn/challenges-epilepsy/social-concerns https://www.epilepsy.com/learn/managing-your-epilepsy/self-management-programs You may also contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000, contactus@efa.org , epilepsy.com/helpline , where a trained information specialist can connect you to resources, provide referrals and additional support. Additionally, there are plenty of things you can do to reduce these feelings and manage your epilepsy: https://www.epilepsy.com/learn/managing-your-epilepsy Learn seizure first aid: https://www.epilepsy.com/learn/seizure-first-aid-and-safety Create a seizure response or action plan: https://www.epilepsy.com/living-epilepsy/toolbox/seizure-forms which is a helpful tool for those around you understand what do if you have a seizure Use a diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary Track your seizures, record your medical history, medications, side effects, moods, triggers, or other personal experiences. Have a Seizure alert device: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf It is also important to recognize that epilepsy is more than just seizures, overall well-being and emotional health is just as important: https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health The Wellness Institute: epilepsy.com/wellness ,has many helpful and easy-to-use tips & resources for maintaining a healthy lifestyle and maximizing the quality of life for you & your family. For practical & effective strategies to enhance your well-being, learn more here: https://www.epilepsy.com/living-epilepsy/toolbox/wellness-support-tools For assistance finding a specialist near you, or a second opinion, please visit: https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist or by visiting the National Association of Epilepsy Centers at: www.naec-epilepsy.org https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist/find-epilepsy-centerhttps://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinions

Hi thank you for sharing. I

Submitted by 1cor12.9 on Fri, 2019-08-09 - 23:11

Hi thank you for sharing. I wish we met 25 years ago and could share our experiences. Thankfully, I already went through some of the challenges of your circumstances. I hope my experiences will help.Depakote lasted a couple of years during high school. Social awkwardness, a lot of people thought I was intoxicated. Valproic acid was great. I lost the 30 pounds of depakote weight, felt like I had a caffeine fix all day. Had 3 grand mals in one day.I can't recall the next 2 drugs.The only thing I would really like share is my progress. The journey was long and helpful because I decided to work in Healthcare. People don't understand how to help epileptics or special needs but we do. When I was healthy my epilepsy was a blessing when I volunteered or worked at a camp and not a burden or social insecurities. There are psychologist, therapist, etc that Skype. They are called mobile therapy for people who can't leave their homes. They may help you with taking that first step forward. Psychology Today website may have a list in your local area. I will pray for you. And He has said to me, "My grace is sufficient for you, for power is perfected in weakness." therefore, I will rather boast about my weaknesses, so that the power of Christ may dwell in me.