Tired of Twitching

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I've had epilepsy since I was 11--I'm 21 now. Doctors never could figure out what kind of epilepsy I have, specifically, because I don't respond to sleep-deprived EEGs. I had maybe 5 grand mal seizures when I was between 11-13, but none since then. Symptoms were always the same, too--absence seizures, visual disturbances, motion sickness, etc. But just in the last couple of years, I've started getting twitches at random times, usually in my face, neck, shoulders, and hands. It's super embarrassing when my face twitches and messes up my speech. Does anyone else experience these symptoms who can maybe shed some light on their diagnoses? I'd love to hear anyone's opinion!

Comments

Hi aclockhart,Thanks so much

Submitted by Anonymous on Thu, 2019-08-08 - 09:15

Hi aclockhart,Thanks so much for posting. It’s important that you continue follow-up with your healthcare team to express your concerns and discuss any potential changes in side effects, seizure types, frequency, behaviors and symptoms, to determine what individual treatment is best for you.https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf Seizures can take on many different forms and affect different people in different ways. Learn more about seizures and the various types of seizures here: https://www.epilepsy.com/learn/about-epilepsy-basics/what-happens-during-seizure https://www.epilepsy.com/learn/types-seizures Additionally, there are plenty of things can do to reduce these feelings and manage your epilepsy: https://www.epilepsy.com/learn/managing-your-epilepsy Create a seizure response or action plan, which is a helpful tool for those close to you understand what do if you have a seizure:https://www.epilepsy.com/living-epilepsy/toolbox/seizure-forms Tracking your seizures, record your medical history, medications, side effects, moods, or other personal experiences, using a diary:https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary Have a Seizure alert device: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdfLearn seizure first aid:https://www.epilepsy.com/learn/seizure-first-aid-and-safety It is also important to recognize that epilepsy is more than just seizures, overall well-being and emotional health is just as important: https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health The Wellness Institute: epilepsy.com/wellness ,has many helpful and easy-to-use tips & resources for maintaining a healthy lifestyle and maximizing the quality of life for you & your family. For practical & effective strategies to enhance your well-being, learn more here: https://www.epilepsy.com/living-epilepsy/toolbox/wellness-support-tools Additionally 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 Or by contacting your local Epilepsy Foundation at:https://www.epilepsy.com/affiliatesto find support groups, events, and programs in your community.

Hi aclockhart,Thanks so much for posting. It’s important that you continue follow-up with your healthcare team to express your concerns and discuss any potential changes in side effects, seizure types, frequency, behaviors and symptoms, to determine what individual treatment is best for you.https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf Seizures can take on many different forms and affect different people in different ways. Learn more about seizures and the various types of seizures here: https://www.epilepsy.com/learn/about-epilepsy-basics/what-happens-during-seizure https://www.epilepsy.com/learn/types-seizures  Additionally, there are plenty of things can do to reduce these feelings and manage your epilepsy: https://www.epilepsy.com/learn/managing-your-epilepsy Create a seizure response or action plan, which is a helpful tool for those close to you understand what do if you have a seizure:https://www.epilepsy.com/living-epilepsy/toolbox/seizure-forms Tracking your seizures, record your medical history, medications, side effects, moods, or other personal experiences, using a diary:https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary Have a Seizure alert device:  https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdfLearn seizure first aid:https://www.epilepsy.com/learn/seizure-first-aid-and-safety It is also important to recognize that epilepsy is more than just seizures, overall well-being and emotional health is just as important: https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health   The Wellness Institute:  epilepsy.com/wellness   ,has many helpful and easy-to-use tips & resources for maintaining a healthy lifestyle and maximizing the quality of life for you & your family.  For practical & effective strategies to enhance your well-being, learn more here: https://www.epilepsy.com/living-epilepsy/toolbox/wellness-support-tools Additionally 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  Or by contacting your local Epilepsy Foundation at:https://www.epilepsy.com/affiliatesto find support groups, events, and programs in your community. 

Hi aclockhart,Thanks so much for posting. It’s important that you continue follow-up with your healthcare team to express your concerns and discuss any potential changes in side effects, seizure types, frequency, behaviors and symptoms, to determine what individual treatment is best for you.https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf Seizures can take on many different forms and affect different people in different ways. Learn more about seizures and the various types of seizures here: https://www.epilepsy.com/learn/about-epilepsy-basics/what-happens-during-seizure https://www.epilepsy.com/learn/types-seizures Additionally, there are plenty of things can do to reduce these feelings and manage your epilepsy: https://www.epilepsy.com/learn/managing-your-epilepsy Create a seizure response or action plan, which is a helpful tool for those close to you understand what do if you have a seizure:https://www.epilepsy.com/living-epilepsy/toolbox/seizure-forms Tracking your seizures, record your medical history, medications, side effects, moods, or other personal experiences, using a diary:https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary Have a Seizure alert device: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdfLearn seizure first aid:https://www.epilepsy.com/learn/seizure-first-aid-and-safety It is also important to recognize that epilepsy is more than just seizures, overall well-being and emotional health is just as important: https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health The Wellness Institute: epilepsy.com/wellness ,has many helpful and easy-to-use tips & resources for maintaining a healthy lifestyle and maximizing the quality of life for you & your family. For practical & effective strategies to enhance your well-being, learn more here: https://www.epilepsy.com/living-epilepsy/toolbox/wellness-support-tools Additionally 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 Or by contacting your local Epilepsy Foundation at:https://www.epilepsy.com/affiliatesto find support groups, events, and programs in your community.

Hey there. Sorry to hear you

Submitted by Brooke.AM on Tue, 2019-08-13 - 22:18

Hey there. Sorry to hear you’re having a rough go. If it’s helpful: this sounds very similar to my situation. I don’t have the facial twitching or the speech issue, but I have all the other things you listed. I was diagnosed with juvenile myoclonic epilepsy. A lot of what happens in my arms, shoulders, neck, and hands are myoclonic seizures. My timeline is a little different from yours—I developed the myoclonic seizures first, then grand mals, though all of it came on within a couple of years. Might be a helpful avenue to research.