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Myoclonic seizures
Thu, 08/15/2019 - 19:40Topic: New to Epilepsy.com
My 12 year old son was diagnosed with nonintractable generalized idiopathic epilepsy without status epilepticus after presenting with myoclonic jerks just after waking in the morning. The jerking was worse when he had not gotten good sleep the night before. EEG detected absence seizures triggered by hyperventilation that we were completely unaware of. The last around 3 seconds. He’s been on Depakote 750mg twice a day since February and has not had a wakeful myoclonic episode since his second dose of medication. Praise Jesus!! However, sometimes he jerks in his sleep before he wakes up in the morning on occasion. Are these seizures? He still doesn’t have the ones he had before while awake. He’s never had a grand mal (tonic clonic) seizure. After 1 month or so on medication he had an inpatient 72 hour EEG done and NO seizure activity was detected. I’m thankful beyond measure, but still scared and confused. I was told he may “outgrow” the epilepsy??
I’m also reading about progressive myoclonic epilepsy and am now terrified!
Hi Awc, Thanks so much for
Submitted by Anonymous on Thu, 2019-08-15 - 22:58
Hi Awc, Thanks so much for posting. We are glad to hear that your son’s most recent EEG showed no seizure activity, that’s great news! We cannot determine if these jerks you describe are seizures, so it’s very important that you all continue to follow-up with your son’s healthcare team, express your concerns and any changes in seizure types, frequency, behaviors, side effects and symptoms. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdfOur new to Epilepsy & Seizure tool kit is a great resource and starting point for learning about epilepsy, what resources are available, how to make the most of doctors' visits, and how to take control of seizures & find self-management tools. Learn more, by visiting: https://www.epilepsy.com/living-epilepsy/toolbox/new-seizures-and-epilepsy It is common for those who are in caretaker role to feel overwhelmed. It’s important to remember that you are not alone, and it is 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.pdfTheWellness 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 Additionally, there are plenty of things you all can do to reduce these feelings and stay safe: https://www.epilepsy.com/learn/managing-your-epilepsy Learn seizure first aid: https://www.epilepsy.com/learn/seizure-first-aid-and-safety Learn how to live with seizures, potential risks and safety tips: https://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safe Create a seizure response or action plan: https://www.epilepsy.com/living-epilepsy/toolbox/seizure-forms which is a helpful tool for those around your son 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 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/affiliatesto find support groups, events, and programs in your community. https://www.epilepsy.com/living-epilepsy/our-programs/individual-family-servicesAdditionally our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000, contactus@efa.org, can assist in connecting you to resources, provide referrals and additional support. epilepsy.com/helpline