Losing hope

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My wife and I have been together almost 3 years. She's 21 and I'm 20. We have a 1 year old together and a 4 year old just starting school (I'm her stepdad). My wife started having seizures around the time we find out she was pregnant with my son. Through the course of 2 years we have went through constant tests, medication switches, and now we are at a point where we nor her doctors know what else to do. We are on a waiting list to see an epileptic specialist. While we wait, her episodes are getting worse and worse. Her memory is worse, she has probably around 10 episodes a day and I don't really know what we can do. I work 4 10 hour shifts per week and she stays with the kids but can hardly do that and mostly she can't do that. It's almost like she's another child of mine. I try to stay positive for her and the kids and do everything I can, but I'm slowly losing hope and am convinced we will live like this forever. We can't go out and do stuff normal 20 and 21 year olds do. She has good and bad days but mostly bad. I'm not really sure why I made this post, maybe just for some insight and maybe to see if there are others out there like us? Anyways, thanks for reading. God bless. Kren10.

Comments

Hi Kren10, Thanks so much for

Submitted by Anonymous on Thu, 2019-08-01 - 08:04

Hi Kren10, Thanks so much for sharing your story, it sounds like you all have been through a lot. It’s very important that you continue to follow-up with your wife’s healthcare team to determine what treatment is best for her and any potential changes in seizure types, frequency, side effects, behaviors, or symptoms. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf . To help prepare for your visit with the epileptologist, please visit, https://www.epilepsy.com/sites/core/files/atoms/files/717QHT_QuestionsHealthcareTeam_05-2019.pdf For assistance finding a specialist near you, please visit: https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist https://www.epilepsy.com/affiliates Additionally you may contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000 contactus@efa.org , where a trained information specialist can connect you to resources, provide referrals and additional support.epilepsy.com/helpline Learn more about the challenges with epilepsy related to thinking and memory here: https://www.epilepsy.com/learn/challenges-epilepsy/thinking-and-memory It is common for those who are in caretaker role to feel overwhelmed. It’s important to remember that you are not alone, and it is just as important to make sure you’re taking care of yourself as well. https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdf.Additionally,there are plenty of things you all can do to reduce these feelings and stay safe: https://www.epilepsy.com/learn/managing-your-epilepsy Learn seizure first aid: https://www.epilepsy.com/learn/seizure-first-aid-and-safetyLearn how to live with seizures, potential risks and safety tips: https://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safe Create a seizure response or action plan: https://www.epilepsy.com/living-epilepsy/toolbox/seizure-forms which is a helpful tool for those around your wife to understand what do if she has a seizure: Use a diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary Track her seizures, record his 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 The Wellness Institute: epilepsy.com/wellness ,provides tools and strategies to better assist your loved one and support you in your important role. For practical & effective strategies to enhance your well-being, learn more here: https://www.epilepsy.com/living-epilepsy/toolbox/wellness-support-toolsSometimes it's helpful to connect with other people who live with or care for those with epilepsy, to ask questions,share experiences, find & give support to each other, by contacting your local Epilepsy Foundation at: https://www.epilepsy.com/affiliates to find support groups, events, and programs in your community.

Hi Kren10, Thanks so much for sharing your story, it sounds like you all have been through a lot. It’s very important that you continue to follow-up with your wife’s healthcare team to determine what treatment is best for her and any potential changes in seizure types, frequency, side effects, behaviors, or symptoms. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf .          To help  prepare for your visit with the epileptologist, please visit, https://www.epilepsy.com/sites/core/files/atoms/files/717QHT_QuestionsHealthcareTeam_05-2019.pdf     For assistance finding a specialist near you, please visit: https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist https://www.epilepsy.com/affiliates Additionally you  may contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000 contactus@efa.org , where a trained information specialist can connect you to resources,  provide referrals and additional support.epilepsy.com/helpline   Learn more about the challenges with epilepsy related to thinking and memory here: https://www.epilepsy.com/learn/challenges-epilepsy/thinking-and-memory   It is common for those who are in caretaker role to feel overwhelmed. It’s important to remember that you are not alone, and it is just as important to make sure you’re taking care of yourself as well.  https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdf.Additionally,there are plenty of things you all can do to reduce these feelings and stay safe: https://www.epilepsy.com/learn/managing-your-epilepsy Learn seizure first aid: https://www.epilepsy.com/learn/seizure-first-aid-and-safetyLearn how to live with seizures, potential risks and safety tips: https://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safe Create a seizure response or action plan: https://www.epilepsy.com/living-epilepsy/toolbox/seizure-forms which is a helpful tool for those around your wife to understand what do if she has a seizure: Use a diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary Track her seizures, record his 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 The Wellness Institute: epilepsy.com/wellness  ,provides tools and strategies to better assist your loved one and support you in your important role. For practical & effective strategies to enhance your well-being, learn more here:  https://www.epilepsy.com/living-epilepsy/toolbox/wellness-support-toolsSometimes it's helpful to connect with other people who live with or care for those with epilepsy, to ask questions,share experiences, find & give support to each other, by contacting your local Epilepsy Foundation at: https://www.epilepsy.com/affiliates to find support groups, events, and programs in your community. 

Hi Kren10, Thanks so much for sharing your story, it sounds like you all have been through a lot. It’s very important that you continue to follow-up with your wife’s healthcare team to determine what treatment is best for her and any potential changes in seizure types, frequency, side effects, behaviors, or symptoms. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf . To help prepare for your visit with the epileptologist, please visit, https://www.epilepsy.com/sites/core/files/atoms/files/717QHT_QuestionsHealthcareTeam_05-2019.pdf For assistance finding a specialist near you, please visit: https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist https://www.epilepsy.com/affiliates Additionally you may contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000 contactus@efa.org , where a trained information specialist can connect you to resources, provide referrals and additional support.epilepsy.com/helpline Learn more about the challenges with epilepsy related to thinking and memory here: https://www.epilepsy.com/learn/challenges-epilepsy/thinking-and-memory It is common for those who are in caretaker role to feel overwhelmed. It’s important to remember that you are not alone, and it is just as important to make sure you’re taking care of yourself as well. https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdf.Additionally,there are plenty of things you all can do to reduce these feelings and stay safe: https://www.epilepsy.com/learn/managing-your-epilepsy Learn seizure first aid: https://www.epilepsy.com/learn/seizure-first-aid-and-safetyLearn how to live with seizures, potential risks and safety tips: https://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safe Create a seizure response or action plan: https://www.epilepsy.com/living-epilepsy/toolbox/seizure-forms which is a helpful tool for those around your wife to understand what do if she has a seizure: Use a diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary Track her seizures, record his 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 The Wellness Institute: epilepsy.com/wellness ,provides tools and strategies to better assist your loved one and support you in your important role. For practical & effective strategies to enhance your well-being, learn more here: https://www.epilepsy.com/living-epilepsy/toolbox/wellness-support-toolsSometimes it's helpful to connect with other people who live with or care for those with epilepsy, to ask questions,share experiences, find & give support to each other, by contacting your local Epilepsy Foundation at: https://www.epilepsy.com/affiliates to find support groups, events, and programs in your community.

Hi there. My wife also has

Submitted by Charles_ on Wed, 2019-12-11 - 01:36

Hi there. My wife also has epilepsy. She has had seizures for 20 years. We have been together for 10 years. She has any where from 1 to 10 seizures every day. We also have a son. I just wanted to reach out to you and say you aren't alone. I commend you for your efforts and dedication to your family. I have too experience many times that "losing hope" feeling. My advice would be to try your best to find joy and happiness in the adjustments you're making, hope that makes sense. Always try to calm down in these moments of chaos and just be present for your wife and children. I imagine you have so many hospital visits and emergency room visits and all of that, try not to let it all weigh you down. I don't know why these awful health issues happen to so many people in the world, but I do know that regardless of how tough it gets you can do it, so can your wife. Your children will be learning some really valuable things as they see how much you care for her. My wife has almost no independency, she has never been able to drive, she doesn't go anywhere with our son alone. We are pretty much with each other 24/7 in case she falls over, which she has done so many times. I have lost track of how many ER trips we have had. I am learning though that the most satisfaction and happiness I can experience is when I try to lift my wife, because she is the one who has to suffer and she has no control over what is happening. This might be a short term experience or life long, I hope it is shorter for your wife and mine, but regardless of how long it takes, don't give it, and try things that are in your control, like earlier nights to sleep, eating healthy and exercising. I also keep a journal to see if there's anything that might trigger more seizure activity. Also research CBD from whole plants, not seeds, like Charlotte's web. We have tried so much, Keto and everything, but nothing works very well yet, but it might for you. You might get a good combination of medications that help. Anyways, sorry for the long message. I hope something I wrote helps. You are in our prayers.