Chat and Community Forums Closed

Due to the popularity of social media, we have seen decreasing engagement on our forums and chat. Please know we want to keep talking to you about epilepsy, seizures, and what you need. We want to stay connected with you.

Community Forum

Seudo-seziures Please Help

Topic: 

Hi I am 15 years old and my doctor has told me abaut this thing called "Sudo-Seziures" where your body cats like it is having a seziure but really its not. She even said you could have a genalized Tonic Clonic and it would just be a suedo seziure. Basically it is when an MRI, EEG, ect. does not show anything abnormal with your brain waves. This infromation bothers me because whenever I call my parents they say its probally not a real seziure and its no big deal. This is true but it just really bothers me that when i am actually haveing a real seziure my parents dont want to listen to my they are hoping that its all fake. My parents are the best people in the world but i am upset. Any Ideas? Please help me!

Comments

I am a licensed clinical

I am a licensed clinical social worker and certified rehabilitation counselor as well as a person with epilepsy. I have experience treating people become symptom free from what are called psychogenic nonepileptic seizures (PNES). Most doctors have stopped using the term psuedo seizures because of the reaction that often comes from it. Here is a website that is very informative about PNES and even has a documentary about others that have experienced the same kind of thing. https://nonepilepticseizures.com/. I personally disagree with some of what they say because I take a different approval with clients, but in general they have some information that is consistent with most of what the medical and psychological believes about PNES and how to treat it. Someone from the Epilepsy Foundation will probably offer you some information later this week on the subject too. Psychotherapy is generally necessary for you to become free of PNES though. 

Hi,  Thanks so much for

Hi,  Thanks so much for posting and we understand your frustrations and concerns. Treatment varies for each individual, so it's important that you consult with your healthcare team (that you’re comfortable with), to determine what is best for you and express your concerns, any changes in seizure types, frequency, behaviors,side effects and symptoms. Gianna has offered some great advice and it's important to remember that you are not alone. However, we know that being diagnosed with PNES can be upsetting and make you feel isolated. One of the most important things to help you live with PNES is to find a support network.  Learn more about your community support resources, here: https://www.epilepsy.com/learn/challenges-epilepsy/social-concernsIt is also important to remember that your 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 Seizures can take on many different forms and affect different people in different ways. Learn more about seizuresand the various types of seizures & PNES, here:https://www.epilepsy.com/learn/about-epilepsy-basics/what-happens-during... https://www.epilepsy.com/learn/types-seizures https://www.epilepsy.com/learn/types-seizures/nonepileptic-seizures-or-e... A key part of managing Epilepsy and PNES is knowing how it can affect a person's independence and day-to-day needs. Visit our independent living pages here: https://www.epilepsy.com/living-epilepsy/independent-living  to learn more about resources that are available & when help is needed. We know this can feel overwhelming. However, there are plenty of things you can do to reduce these feelings.Use a diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-... Track your episodes,record your medical history, medications, side effects, moods, triggers, or other personal experiences. Create a seizure response or action plan: https://www.epilepsy.com/living-epilepsy/toolbox/seizure-forms which is a helpful tool for those around you to understand what to do if you have an episode. Learn about potential risks and safety tips: https://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safeYou may also contact our Epilepsy and Seizures 24/7 Helpline:1-800-332-1000, contactus@efa.org   epilepsy.com/helpline , where a trained information specialist can connect you to resources,  provide referrals and additional support. 

Thank you so much. You did

Thank you so much. You did mention one thing that sounds better than what I actually have I was NOT diagnosed with this so my parents just tell me that that is probably what it is without even knowing if it’s possible for me to have these But once again thank you so much !!!

Our Mission

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

 
24/7 helpline
P