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The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
My Husband
Thu, 02/13/2020 - 13:18Topic: Share Your Story
My husband was diagnosed with epilepsy when he was 8. It was during his parents divorce and the Dr said it was from stress and that he would grow out of it. He never did. Medications subsided/controlled them until he was 29/30 years old. After that no meds worked and still don’t. He has been home from work for 5 years now. The first two years he was on long term disability through his old job until they forced him to apply for Social Security disability which he didn’t want to do and very sloppily filled out the paperwork and less than a month later he was approved with a large back pay check. We had never heard of it being that easy! The long term policy company through his work clearly had a hand in it! Shortly after his approval social security granted our two children and myself with dependent pay checks. Also rarely heard of! We all struggle with his condition but the biggest thing is that no matter what tests they run they cannot figure out what is causing the epilepsy, so surgery is not an option. He cannot be alone for long per the Dr orders so I am his sole caretaker and perform all family responsibilities and duties. He really struggled with that and the fact that he wants to help but doesn’t feel well enough to most days. He has 6 different types of seizures that are very hard on his system. They say epilepsy is not hereditary but he is 1 of 4 in his family with it so we are constantly watching for signs in our children. Wish there was more support in our area but we are an hour from the closest support group and or walks. When he could no longer work we lost all of our friends and the majority of our family. It’s just hard sometimes.
Hi, Thank you for sharing
Submitted by Anonymous on Fri, 2020-02-14 - 09:41
Hi, Thank you for sharing your story, it sounds like you all are going through a lot. It’s common for those who are in caregiver role to feel overwhelmed. It’s important to remember that you are not alone, and that you're taking care of yourself and making your health and overall well-being a priority. https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdfWe understand that living with epilepsy or caring for someone with epilepsy, is more than just knowing your type of seizures or what medicine to take. It also means learning how to handle the way epilepsy affects your life including your physical well-being, social and emotional health. https://www.epilepsy.com/living-epilepsy/healthy-livingOne of the most important things to help you live with epilepsy is to find a support network. The Epilepsy Foundation has many resources available that can help you find your support network by contacting our 24/7 Helpline: 1-800-332-1000, contactus@efa.org or your local Epilepsy Foundation: https://www.epilepsy.com/affiliates to join a support group and access to local & national resources. In addition to the forums, connect with others in our online community & participate in our online chat room: https://www.epilepsy.com/connect/chatIf you all have not already, you may want to consider seeking more specialize care for his epilepsy at an epilepsy center. A comprehensive epilepsy center is a group of health care professionals who specialize in the diagnosis, care, and treatment of people with seizures and epilepsy. Usually led by an epileptologist,(epilepsy specialist), who can help explore all treatment options and determine what individual treatment plan may be best for him. To find an epileptologist or epilepsy center near you, please visit: https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist/find-epilepsy-centerEpilepsy centers can also help connect you all with additional support groups, educational sessions and connecting you with other families. Additionally, your husband may also want to consider participating in treatment, seizure and lifestyle management programs, (from home), which can help people with epilepsy learn skills to better manage their epilepsy and its effects on daily life: https://www.epilepsy.com/learn/managing-your-epilepsy/what-managing-epilepsy-well-networkKeeping a journal or diary, like My Seizure Diary:https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryis a great tool for-identifying & tracking seizures, setting reminders, managing medications & side effects, recording medical history, moods, behaviors, triggers, and other therapies or personal experiences, that may affect seizures and wellness, which can be shared with his healthcare team. For more information,skills and resources that may help you all manage seizures and epilepsy more easily, visit: https://www.epilepsy.com/learn/managing-your-epilepsy