Community Forum Archive

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.

2 types of seizures. How do I keep working?

Wed, 03/04/2020 - 22:30
Hello. I am a 34 year old mother of 4. I have partial complex seizures and pseudoseizures. We are a one income household. I HAVE to work. I cant miss work, I cant cut back. We are on a third type of seizure medication to try to control them. Not going well. I have a referral to a specialty center but I am terrified they are going to tell me what they told me three years ago, keep trying pills and therapy. Like I can get days off for therapy and rides there an hour away. My neurologist told me I was "too young" to consider disability for. But it seems like each time I work seizures build up to this point. I don't know what to do. I cant work but I cant not work.

Comments

Hi,Thank you for posting, it

Submitted by Anonymous on Thu, 2020-03-05 - 10:29
Hi,Thank you for posting, it sounds like you’re dealing with a lot right now. We are glad to hear that you have a referral to 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. The specialized center should also include other health care professionals to meet the diverse needs of people with seizures and their families and can also help connect you with additional support groups and educational sessions. It may be helpful to see a vocational rehabilitation counselor to help you navigate your career. https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/vocational-rehabilitation-counselors In many communities the local Epilepsy Foundation: https://www.epilepsy.com/affiliates offers programs and resources to help connect you with vocational counselor, and the employment section of our website, to help manage the impact of epilepsy on your work: https://www.epilepsy.com/living-epilepsy/independent-living/employment-help-what-you-need-knowFor additional resources regarding disability, visit: https://www.epilepsy.com/living-epilepsy/legal-help/disability-resources .We understand that living with epilepsy is more than seizures, 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-living/emotional-healthAdditionally you may want to consider participating in treatment, seizure and lifestyle management programs, (which can be done from home), that 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-network .It’s important to remember that you are not alone, and we are here to help support you. You may always contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, or contactus@efa.org. epilepsy.com/helpline    

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.