Goundhog day EVERY day - new 58M epileptic

CDC funded page

Not a CDC funded Page

Hi all. My 58y old brother was diagnosed with IGE after 3 grand mal seizures in 2 weeks. He's had additional seizures, on KEppra 1000mg twice daily and Dilantin 200mg twice daily. Still having occasional seizures, but the worst part is that he can't remember ANYTHING??? Every single day I have to explain to him why he can't go to work or drive, and he doesn't remember having any seizures, his 3 hospital visits, 3 doctor's visits, MRI's, talking to his boss, or why I have been staying with him. He acts like he understands and is on board, but then by morning, we're back to ground zero. The secondary issue is that he lives alone, 40 miles from me with no friends or family in his town. I cannot stay with him indefinitely, but am afraid to leave him alone at all since he has no warning before a seizure and can't remember to take his medication or even not to leave the house. Any ideas????

Comments

Hi MotherTeresaK, Thanks so

Submitted by Anonymous on Thu, 2019-08-22 - 16:25

Hi MotherTeresaK, Thanks so much for posting, we understand your concerns. It important that you all continue to follow-up with your brother’s healthcare team and to discuss his difficulties with memory, as well as any changes in seizure types, frequency, behaviors, side effects and symptoms. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf It is common for those living with epilepsy to report having difficulties with thinking & memory Learn more about challenges with Epilepsy here:https://www.epilepsy.com/learn/challenges-epilepsy/thinking-and-memory For more information regarding Keppra, Dilantin and side effects, visit: https://www.epilepsy.com/medications/levetiracetamhttps://www.epilepsy.com/medications/phenytoinhttps://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effects A key part of managing epilepsy is knowing how it can affect a person's independence and day-to-day needs. Visit our independent living pages here: https://www.epilepsy.com/living-epilepsy/independent-living to learn more about things to consider for independent living , resources that are available & when help is needed. Additionally, there are plenty of things you all can do to help your brother manage his epilepsy 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-safeCreate a seizure response or action plan: https://www.epilepsy.com/living-epilepsy/toolbox/seizure-forms which is a helpful tool for those around your brother to understand what to do if he has a seizure: Use a diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary Track his 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 It’s important to remember that you are not alone, and as caretaker 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 Sometimes 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. 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

Hi MotherTeresaK, Thanks so much for posting, we understand your concerns. It important that you all continue to follow-up with your brother’s healthcare team and to discuss his difficulties with memory, as well as any changes in seizure types, frequency, behaviors, side effects and symptoms. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf It is common for those living with epilepsy to report having difficulties with thinking & memory Learn more about challenges with Epilepsy here:https://www.epilepsy.com/learn/challenges-epilepsy/thinking-and-memory  For more information regarding Keppra, Dilantin and side effects, visit: https://www.epilepsy.com/medications/levetiracetamhttps://www.epilepsy.com/medications/phenytoinhttps://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effects A key part of managing epilepsy is knowing how it can affect a person's independence and day-to-day needs. Visit our independent living pages here: https://www.epilepsy.com/living-epilepsy/independent-living to learn more about things to consider for independent living , resources that are available & when help is needed. Additionally, there are plenty of things you all can do to help your brother manage his epilepsy 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-safeCreate a seizure response or action plan: https://www.epilepsy.com/living-epilepsy/toolbox/seizure-forms which is a helpful tool for those around your brother to understand what to do if he has a seizure: Use a diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary Track his 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 It’s important to remember that you are not alone, and as caretaker 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  Sometimes 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. 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   

Hi MotherTeresaK, Thanks so much for posting, we understand your concerns. It important that you all continue to follow-up with your brother’s healthcare team and to discuss his difficulties with memory, as well as any changes in seizure types, frequency, behaviors, side effects and symptoms. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf It is common for those living with epilepsy to report having difficulties with thinking & memory Learn more about challenges with Epilepsy here:https://www.epilepsy.com/learn/challenges-epilepsy/thinking-and-memory For more information regarding Keppra, Dilantin and side effects, visit: https://www.epilepsy.com/medications/levetiracetamhttps://www.epilepsy.com/medications/phenytoinhttps://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effects A key part of managing epilepsy is knowing how it can affect a person's independence and day-to-day needs. Visit our independent living pages here: https://www.epilepsy.com/living-epilepsy/independent-living to learn more about things to consider for independent living , resources that are available & when help is needed. Additionally, there are plenty of things you all can do to help your brother manage his epilepsy 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-safeCreate a seizure response or action plan: https://www.epilepsy.com/living-epilepsy/toolbox/seizure-forms which is a helpful tool for those around your brother to understand what to do if he has a seizure: Use a diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary Track his 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 It’s important to remember that you are not alone, and as caretaker 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 Sometimes 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. 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

I have violent generalized

Submitted by Megferra on Thu, 2019-09-05 - 23:37

I have violent generalized grand mal clonic tonic seizures since I was a 8...have been on every drug and combination AND NONE WORKED..MY MEMORY LOSS WAS SUBSTANTIAL..BUT, AND HERE IT IS !!-15 YEARS AGO I WENT TO JEFFERSON EPILEPSY CENTER FOR 10 DAYS...LONG AND SHORT ZONIGRAM OR ALSO KNOWN AS ZONISAMIDE IS WHAT WORKED....IM 54 TODAY...AND AS I ALSO HAVE TYPE2 OSTEOGENESIS IMPERFECTA WITH EVERY SEIZURE I BREAK SOMETHING SO ZONIGRAM IS HEAVENLY I STILL HAVE BREAKTHRU NOW AND AGAIN AND DONT GET A WARNING (never did or will ) but after 13 back fractures I various other bones ZONISAMIDE is giving me some breathing room..maybe your brother could be helped by ZONISAMIDE..