EEG worries

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Hi everyone, I was dxed with epilepsy at 7 (petit mal). I stopped having seizures at 13 but at 14-16 I started getting myoclonics, and tingling in my face. I went for an EEG and it was negative, my neurologist told me I was making it up and I never pursued help again. I’m 22 now and have headaches,tingling, confusion, feelings of immense anxiety/fear, heart palpitations, and muscle twitches. I’m seeing a neuro again and I have an EEG coming soon but I’m anxious it’s going to be negative and they’ll say I’m lying again. Has this happened to anyone else?

Comments

Hi, Thank you for posting and

Submitted by Anonymous on Tue, 2020-03-10 - 09:38

Hi, Thank you for posting and we understand your concerns. A normal EEG does not mean that you are lying or that you are not experiencing the symptoms you’ve described experiencing. Approximately one-half of all EEGs done for patients with seizures are interpreted as normal. Even someone who has seizures every week can have a normal EEG test. This is because the EEG only shows brain activity during the time of the test. If you aren't having a seizure at that time,there may not be any unusual brain waves for the test to record. https://www.epilepsy.com/learn/diagnosis/eeg/what-if-its-normal .We are glad that you’re following up with your neurologist for additional EEG testing and to discuss your changes in symptoms, further. Be open and honest with your doctor about your feeling and how this is impacting your health and daily life. If you feel 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 contactus@efa.org. epilepsy.com/helpline. Or contact your local Epilepsy Foundation: https://www.epilepsy.com/affiliates, find support groups, events, and programs in your community.

Hi, Thank you for posting and we understand your concerns. A normal EEG does not mean that you are lying or that you are not experiencing the symptoms you’ve described experiencing. Approximately one-half of all EEGs done for patients with seizures are interpreted as normal. Even someone who has seizures every week can have a normal EEG test. This is because the EEG only shows brain activity during the time of the test. If you aren't having a seizure at that time,there may not be any unusual brain waves for the test to record.  https://www.epilepsy.com/learn/diagnosis/eeg/what-if-its-normal .We are glad that you’re following up with your neurologist for additional EEG testing and to discuss your changes in symptoms, further. Be open and honest with your doctor about your feeling and how this is impacting your health and daily life. If you feel 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 contactus@efa.org. epilepsy.com/helpline. Or contact your local Epilepsy Foundation: https://www.epilepsy.com/affiliates, find support groups, events, and programs in your community. 

Hi, Thank you for posting and we understand your concerns. A normal EEG does not mean that you are lying or that you are not experiencing the symptoms you’ve described experiencing. Approximately one-half of all EEGs done for patients with seizures are interpreted as normal. Even someone who has seizures every week can have a normal EEG test. This is because the EEG only shows brain activity during the time of the test. If you aren't having a seizure at that time,there may not be any unusual brain waves for the test to record. https://www.epilepsy.com/learn/diagnosis/eeg/what-if-its-normal .We are glad that you’re following up with your neurologist for additional EEG testing and to discuss your changes in symptoms, further. Be open and honest with your doctor about your feeling and how this is impacting your health and daily life. If you feel 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 contactus@efa.org. epilepsy.com/helpline. Or contact your local Epilepsy Foundation: https://www.epilepsy.com/affiliates, find support groups, events, and programs in your community.

This happens frequently and I

Submitted by Patriotrehab on Thu, 2020-03-12 - 01:01

This happens frequently and I agree with the advice of ConnectHelp on the importance of seeing an epilepsy specialist because they have access to long term video EEG monitoring, which is usually the only way to confirm a diagnosis of epilepsy for many people or to determine if it is something else that mimics epilepsy. I have several different types of seizures and my epilepsy started under unusual circumstances so my new epilepsy specialist was originally suspicious and even went so far as to accuse me of having psychogenic non epileptic seizures. But, he had me gather all of my previous medical records, EEGs, and then admitted me for a 7 day video EEG and a high resolution MRI and he confirmed that I have multifocal epilepsy and that it’s not “all in my head” nor are my seizures “psychological”. If this happens to you, go ahead and get an epilepsy specialist and submit to a video EEG monitoring for a week to see what they find. They have ways to try to stress the brain out to try to help you have a seizure.

It's one EEG and when I was a

Submitted by Plan-To-Succeed on Tue, 2020-03-17 - 20:17

It's one EEG and when I was a little boy my ma and dad went around with the doctors so so much and the day I passed out in the hospital and peed myself at 8 years old and then they walked out and fear of a lawsuit was the thing so if you can prove this and your then getting told your a liar get a free layer with your proof and you will win or even with the camera on the phones computers now it is not hard to show are case and way we live and then you say I have proof if your told your making it up,Right!