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.

Symptom question

Fri, 03/06/2020 - 00:55
SYMPTOM QUESTION I've been GTCS free for 2 years.. On lamictal because keppra made me very moody. Although I've been seizure free I am having a very strange feeling in my face. I've never had it before my seizures so it's not like an aura that I've had. I've been stressed and clenching my jaw a lot. But from time to time I'm getting a weird sensation in only the left side of my head. Like my face, scalp, eye and rest of the left side of my head feels like it's more sensitive. Almost like between the layers of skin is filled with air or liquid. It feels worse when I touch it. I was just curious to see if it was focal seizure related or just nerves. It's very hard to describe which is why this post is so long. I've mentioned it to my nuero multiple times and the only thing he says is it could be a headache condition or stress response but also possible focal seizures. My jaw sometimes twitches closed but I've never experienced changes in my conciousness or anything like that. It mostly starts near my eye and side of my nose and then spreads to the whole left side of my face. Any ideas would help calm my mind.. just need to know.

Comments

Hi, Thank you for posting and

Submitted by Anonymous on Fri, 2020-03-06 - 09:28
Hi, Thank you for posting and congratulations on being seizure free for the past few years! This is fantastic news and we wish you many more years of seizure freedom ahead. We cannot determine if these symptoms you describe experiencing are related to side effects of your medication or a separate issue. treatment and how the body may reaction 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 Lamictal ,and things to look for, please visit: https://www.epilepsy.com/medications/lamotrigine . It’s important that you’re continuing to follow-up with your healthcare team to express your concerns and if you continue to experience any potential changes in symptoms, side effects, seizure types/frequency and behaviors to determine what individual treatment plan is best for you. Be open and honest with your doctor about your feeling and how this is impacting your health and daily life. If you can’t talk openly with your team, or you aren't working towards the same goals, it may be time to get a second opinion. You may want to consider seeking more specialize care for your epilepsy at an epilepsy center. A comprehensive epilepsy center is a group of health care professionals who specialize in the diagnosis, care, and treatment of people with seizures and epilepsy. Usually led by an epileptologist, (epilepsy specialist), who can help explore all treatment options and determine what individual treatment plan maybe best for you. To find an epileptologist or epilepsy center near you, please visit: https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist/find-epilepsy-center Documenting how you’re feeling and the symptoms you describe experiencing in detail. (like you've done in your post), will be very helpful to review with your doctors. My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary, is a great tool for identifying & tracking seizures, setting reminders,managing medications & side effects, recording medical history, moods, behaviors, triggers, and other therapies or personal experiences, that may affect seizures and wellness, which can be shared with your healthcare team. 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 [email protected]. epilepsy.com/helpline. Or contact your local Epilepsy Foundation: https://www.epilepsy.com/affiliates , find support groups, events, and programs in your community.

Sign Up for Emails

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