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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.

Coming to terms and general concerns/questions?

Wed, 04/15/2020 - 16:28
Hi. New to here. Finally coming to terms with my diagnosis. Taken since November and went through a very down period from being in denial. I am struggling with being reliant on everything - medication, public transport, the weather, online supermarket deliveries, friends and family getting me to appointments. I feel very guilty for feeling like this as there are so many people out in the world going through worse things. Has anyone else felt like this and if so do you have any advice? Also I am having a problem with finding words. I want to say a sentence, but I can’t think of the word. I know I know the word but I can’t vision (ironically couldn’t think of this word for a few minutes) it so I skip the word and hope the sentence makes sense or just stop talking. It happens with all kinds of words. I was talking to someone the other day about ‘outlook’ and I couldn’t find the word outlook in my brain. This can go on for a few seconds (feels like forever) or anything up to 10 or so minutes where I’ll be like “OUTLOOK - this is the word I wanted earlier!” Does anyone get this? If so is it medicine related or condition related? Thank you for any help I’m advance.


Hi, Thank you for posting. It

Submitted by Anonymous on Thu, 2020-04-16 - 08:32
Hi, Thank you for posting. It’s important to remember that you are not alone,and we are here to help support you. 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. . A key part of managing seizures and epilepsy is knowing how it can affect a person's independence and day-to-day needs. Visit our independent living pages here:  to learn more about resources that are available & when help is needed. You may want to consider participating in treatment,seizure and lifestyle management programs, which can help people with epilepsy learn skills to better manage their epilepsy and its effects on daily life: .  One 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 and build upon your support network. Contact your local  Epilepsy Foundation, here: , or contact our 24/7 Helpline:1-800-332-1000, [email protected], where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources, . Cognitive problems - problems with thinking, remembering,paying attention or concentrating, finding the right words, or other symptoms –can be related to a number of issues, including side effects of some seizure medicines. For additional information about the effects of epilepsy and seizure medicines on cognition, visit: . It’s important that you’re continuing to address these challenges with your healthcare team who can work with you to help determine what individual treatment plan is best for you. Be open and honest about how you're feeling, and how this is affecting your health and daily life. .You may also want to consider keeping a journal or diary to help track your seizures and document how you’re feeling. My Seizure Diary can be used to organize your health issues, manage medications, develop seizure response plans, and more which can be shared with members of your healthcare team.

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