Lost and scared parent- medication issues

CDC funded page

Not a CDC funded Page

Hello, new to this. My 20 year old son was diagnosed with epilepsy a couple weeks ago. He started Keppra but the side effects are awful. Doctor told him to stop and take Lamictal instead. Please, can someone provide feedback on your experience with these meds. We are so lost right now.

Comments

Hi, Thank you for posting, we

Submitted by Anonymous on Fri, 2020-01-31 - 09:44

Hi, Thank you for posting, we understand this can feel very scary and upsetting to experience. Treatment and how the body may react to certain medications varies for each individual. The goal of treatment with medicines should be –No Seizures and No Side Effects.However, we know that some individuals may experience too many side effects, that are very bothersome or cause other health problems. To learn more about medications he takes, please visit: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effectsOur new to Epilepsy & Seizure tool kit is a great resource and starting point for learning about what epilepsy is, what resources are available, how to make the most of doctors' visits, and how to take control of seizures, seizure first aid & safety. Learn more here: https://www.epilepsy.com/living-epilepsy/toolbox/new-seizures-and-epilepsyYou all may want to consider keeping a journal or a diary to help him track his seizure and for assistance identify potential side effects. My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary is a great tool, which can help with this and organize his medical history, manage medications, symptoms, moods, behaviors or other personal experiences or therapies that may affect wellness and seizures, which can be shared with his healthcare team.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.pdfIt may be helpful to find someone you trust to talk about your concerns and worries. Some confide in their partner and others to close friends and family, or your child’s doctor or other professionals they work with (such as nurses and social workers) are also good resources. It may also be helpful to connect with other parents who may have similar experiences, to ask questions, find & give support to each other,by visiting: https://www.epilepsy.com/living-epilepsy/parents-and-caregivers/parents-helping-parents Additionally, 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 Or contact your local Epilepsy Foundation: https://www.epilepsy.com/affiliates , to find support groups, events, and programs in your community.

Hi, Thank you for posting, we understand this can feel very scary and upsetting to experience. Treatment and how the body may react to certain medications varies for each individual. The goal of treatment with medicines should be –No Seizures and No Side Effects.However, we know that some individuals may experience too many side effects, that are very bothersome or cause other health problems. To learn more about medications he takes, please visit: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effectsOur new to Epilepsy & Seizure tool kit is a great resource and starting point for learning about what epilepsy is, what resources are available, how to make the most of doctors' visits, and how to take control of seizures, seizure first aid & safety. Learn more here: https://www.epilepsy.com/living-epilepsy/toolbox/new-seizures-and-epilepsyYou all may want to consider keeping a journal or a diary to help him track his seizure and for assistance identify potential side effects. My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary is a great tool, which can help with this and organize his medical history, manage medications, symptoms, moods, behaviors or other personal experiences or therapies that may affect wellness and seizures, which can be shared with his healthcare team.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.pdfIt may be helpful to find someone you trust to talk about your concerns and worries. Some confide in their partner and others to close friends and family, or your child’s doctor or other professionals they work with (such as nurses and social workers) are also good resources. It may also be helpful to connect with other parents who may have similar experiences, to ask questions, find & give support to each other,by visiting: https://www.epilepsy.com/living-epilepsy/parents-and-caregivers/parents-helping-parents  Additionally, 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 Or contact your local Epilepsy Foundation: https://www.epilepsy.com/affiliates , to find support groups, events, and programs in your community. 

Hi, Thank you for posting, we understand this can feel very scary and upsetting to experience. Treatment and how the body may react to certain medications varies for each individual. The goal of treatment with medicines should be –No Seizures and No Side Effects.However, we know that some individuals may experience too many side effects, that are very bothersome or cause other health problems. To learn more about medications he takes, please visit: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effectsOur new to Epilepsy & Seizure tool kit is a great resource and starting point for learning about what epilepsy is, what resources are available, how to make the most of doctors' visits, and how to take control of seizures, seizure first aid & safety. Learn more here: https://www.epilepsy.com/living-epilepsy/toolbox/new-seizures-and-epilepsyYou all may want to consider keeping a journal or a diary to help him track his seizure and for assistance identify potential side effects. My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary is a great tool, which can help with this and organize his medical history, manage medications, symptoms, moods, behaviors or other personal experiences or therapies that may affect wellness and seizures, which can be shared with his healthcare team.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.pdfIt may be helpful to find someone you trust to talk about your concerns and worries. Some confide in their partner and others to close friends and family, or your child’s doctor or other professionals they work with (such as nurses and social workers) are also good resources. It may also be helpful to connect with other parents who may have similar experiences, to ask questions, find & give support to each other,by visiting: https://www.epilepsy.com/living-epilepsy/parents-and-caregivers/parents-helping-parents Additionally, 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 Or contact your local Epilepsy Foundation: https://www.epilepsy.com/affiliates , to find support groups, events, and programs in your community.

Hi,I was also just recently

Submitted by rachel55 on Sun, 2020-02-09 - 21:01

Hi,I was also just recently diagnosed with epilepsy, specifically focal impaired seizures. I am also 20 and have had a pretty good experience so far on Lamotrigine. I have been on it for a month and a half now and have been slowly increasing the dosage. The first medication I was put on was Tokendi XR and the side effects were horrible! I couldn’t sleep, couldn’t concentrate or focus. After switching medications, it has gotten much better. The only side effect I have been experiencing from the Lamotrigine has been vivid dreams/nightmares. I have also been having vision changes which may or may not be related.I’m sorry that you are struggling to find the right medication and I hope this medication works out for your son.

Please my Son was on keppra

Submitted by Jamie marie on Fri, 2020-03-06 - 02:26

Please my Son was on keppra and he ended up taking his own life .. I CAN NOT STRESS HOW IMPORTANT IT IS TO REMOVE YOUR SON OFF THIS MEDICATION BUT DO IT UNDER A DOCTORS CARE ...when my Son tried weaning himself off because he had major side effects like major anger problems depression ECT... It just got worse ... I miss him so