Community Forum Archive

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.

JME strugling for 1st time

Tue, 05/05/2020 - 04:38
Hi all, I was diagnosed with JME when I had violent twitches every morning from 18yo (2008) but wasn't under meds until I have a tonic-clonic seizure at 20 because of a messy young life. After what my neurologist prescribed me 750mg Depakine a day. All fine, not even twitches till 2016 when I switched to Keppra 500mg because Depakine had bad publicity. My neurologist approved. All fine too until fall 2019 when, without any life changes/habits and keeping a healthy life, enough sleep, I started to have like "soft twitches", tend more to be uncontrolled or outdone movements but I feel them and they occur throughout the day. Only when I make movements, not all movements and by far, with fortune. They're so soft that even my girlfriend doesn't see them. It doesn't stop here because I'm frequently feeling the etat de mal, as if I was about to have violent twitches, or seizure. My neurologist then increased the daily dose, I was under 750mg Keppra. Nothing happened. In march, my neurologist made me an EEG which was "normal" according to her. She though decided to switch back to Depakine 750mg/day. Nothing happened. She increased to 1000mg/day, it's better, way less twitches but still have that dizzy/epileptic feeling. Now I was told to do a blood test so we know Depakine rate, it's 74mg/L blood so turns to be efficient (target: between 50 and 100 mg/L). I know we're all experiencing different things through epilepsy, but have anyone of you ever experienced such a brutal change in your symptoms, your meds efficiency/balance without any changes in your life habits ? Thank y'all, never give up, Jerome

Comments

Hi, Thank you for posting.

Submitted by Anonymous on Tue, 2020-05-05 - 08:48
Hi, Thank you for posting. 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 the medication you’re taking and things to look for, visit: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effects . It’s important that you’re continuing to follow-up with your neurologist to explore this further and if you experience any additional changes in side effects, symptoms, moods, behaviors or seizure types/frequency. For many individuals with living with JME the most frequently reported causes of seizures are lack of sleep and stress, so we are glad to hear that you’ve made getting enough sleep and maintaining a healthy lifestyle a priority. For additional stress management technique & tips to help you practice healthy bedtime routine, visit: https://www.epilepsy.com/living-epilepsy/healthy-living . You may want to consider keeping a journal or a diary, to help organize your health issues and document how you are feeling, which can be shared with members of your healthcare team. They can help identify or recognize any patterns, allowing you to modify (if needed) your treatment plan, behavior, or lifestyle appropriately. https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary . 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, contactus@efa.org. epilepsy.com/helpline , or contact your local Epilepsy Foundation: https://www.epilepsy.com/affiliates

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.