Any experience with Fycompa?

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My daughter's (age 15) neurologist wants to start her on Fycompa, in addition to her current epilepsy meds. I'm wondering if anyone has any experience with Fycompa? Specifically, the side effects.

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Hi epilepsymomky, Thanks so

Submitted by Anonymous on Tue, 2019-08-06 - 15:22

Hi epilepsymomky, Thanks so much for posting. Treatment varies for each individual, so it’s important that you all continue to follow-up with your daughter’s neurologist to discuss any potential changes in side effects, seizure types, frequency, behaviors and symptoms.https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdfFor more information regarding Fycompa & side effects visit: https://www.epilepsy.com/medications/perampanel https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effects https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/drug-interactions You all may want to consider with her healthcare team having a device, that can help track seizures, by visiting: https://www.dannydid.org/ https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf and by keeping a seizure diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary These tools may be helpful in identifying & tracking seizures, other symptoms, managing medication & other therapies, recognizing triggers and health events that may affect seizures and wellness, which you can share with her providers. https://www.epilepsy.com/learn/managing-your-epilepsy As a caretaker, it’s just as important to make sure you’re taking care of yourself as well. https://www.epilepsy.com/living-epilepsy/parents-and-caregivers https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdf. The Wellness Institute: epilepsy.com/wellness ,provides tools and strategies to better assist your loved one and support you in your important role. For practical & effective strategies to enhance your well-being, learn more here: https://www.epilepsy.com/living-epilepsy/toolbox/wellness-support-tools It can be 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: https://www.epilepsy.com/living-epilepsy/parents-and-caregivers/parents-helping-parents Contact your local Epilepsy Foundation here: https://www.epilepsy.com/affiliates to find support groups, events, and programs in your community. Additionally, you may also contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000contactus@efa.org , where a trained information specialist can connect you to resources, provide referrals and additional support.epilepsy.com/helpline https://www.epilepsy.com/living-epilepsy/our-programs/individual-family-services

Hi epilepsymomky, Thanks so much for posting. Treatment varies for each individual, so it’s important that you all continue to follow-up with your daughter’s neurologist to discuss any potential changes in side effects, seizure types, frequency, behaviors and symptoms.https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdfFor more information regarding Fycompa & side effects visit: https://www.epilepsy.com/medications/perampanel https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effects https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/drug-interactions You all may want to consider with her healthcare team having a device, that can help track seizures, by visiting:  https://www.dannydid.org/ https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf and by keeping a seizure diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary These tools may be helpful in identifying & tracking seizures, other symptoms, managing medication & other therapies, recognizing triggers and health events that may affect seizures and wellness, which you can share with her providers.  https://www.epilepsy.com/learn/managing-your-epilepsy  As a caretaker, it’s just as important to make sure you’re taking care of yourself as well. https://www.epilepsy.com/living-epilepsy/parents-and-caregivers  https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdf. The Wellness Institute: epilepsy.com/wellness  ,provides tools and strategies to better assist your loved one and support you in your important role. For practical & effective strategies to enhance your well-being, learn more here:  https://www.epilepsy.com/living-epilepsy/toolbox/wellness-support-tools It can be 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:  https://www.epilepsy.com/living-epilepsy/parents-and-caregivers/parents-helping-parents  Contact your local Epilepsy Foundation here: https://www.epilepsy.com/affiliates to find support groups, events, and programs in your community. Additionally, you may also contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000contactus@efa.org , where a trained information specialist can connect you to resources,  provide referrals and additional support.epilepsy.com/helpline https://www.epilepsy.com/living-epilepsy/our-programs/individual-family-services

Hi epilepsymomky, Thanks so much for posting. Treatment varies for each individual, so it’s important that you all continue to follow-up with your daughter’s neurologist to discuss any potential changes in side effects, seizure types, frequency, behaviors and symptoms.https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdfFor more information regarding Fycompa & side effects visit: https://www.epilepsy.com/medications/perampanel https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effects https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/drug-interactions You all may want to consider with her healthcare team having a device, that can help track seizures, by visiting: https://www.dannydid.org/ https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf and by keeping a seizure diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary These tools may be helpful in identifying & tracking seizures, other symptoms, managing medication & other therapies, recognizing triggers and health events that may affect seizures and wellness, which you can share with her providers. https://www.epilepsy.com/learn/managing-your-epilepsy As a caretaker, it’s just as important to make sure you’re taking care of yourself as well. https://www.epilepsy.com/living-epilepsy/parents-and-caregivers https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdf. The Wellness Institute: epilepsy.com/wellness ,provides tools and strategies to better assist your loved one and support you in your important role. For practical & effective strategies to enhance your well-being, learn more here: https://www.epilepsy.com/living-epilepsy/toolbox/wellness-support-tools It can be 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: https://www.epilepsy.com/living-epilepsy/parents-and-caregivers/parents-helping-parents Contact your local Epilepsy Foundation here: https://www.epilepsy.com/affiliates to find support groups, events, and programs in your community. Additionally, you may also contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000contactus@efa.org , where a trained information specialist can connect you to resources, provide referrals and additional support.epilepsy.com/helpline https://www.epilepsy.com/living-epilepsy/our-programs/individual-family-services

Yes and I had to get off it.

Submitted by john420 on Thu, 2019-08-29 - 17:58

Yes and I had to get off it. My experience shouldn't really put you off as they affect people diferently. I was a right crazy twat on it. Very short tempered and also honestly a bit of paranoia. It's the only one to make me paranoid and I've had not the greatest experience with keppra and epilem either but no paranoia.