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EEG Understanding

Fri, 09/27/2019 - 06:52
My daughter is 25. She started having seizures at 1 yo. She is taking zonegran which has worked since she was 15 with only one breakthrough seizure at 17. No seizures since that time. She had a repeat EEG yesterday. I think since she hasn't had any seizures she and her father felt she maybe out grew her seizures. The doctor called and said it's still the same. A lot of electrical activity with 3 second electrical activity going on throughout the scan. Not all the time just through out. Same as when she had her last one at 17. Although now she showed activity during the flashing light portion. She has a drivers license and works. She said she never felt anything during this portion or any other time. Does anyone else feel different when having electrical activity? He said not seizure activity just needs to make sure always takes medicine so doesn't breakthrough. His report also says mild background disorganization. What is that? And is 3 second electrical activity bad, does everyone have this with epilepsy with no feeling that anything is happening? Just trying to help her in case she does feel something but doesn't know that's what it is.

Comments

Hi abc1212, Thanks so much

Submitted by Anonymous on Fri, 2019-09-27 - 09:38
Hi abc1212, Thanks so much for posting and we are so happy to hear that your daughter has not had a seizure since she was 17, that’s fantastic news! We are not able to interpret her EEG results for you, so it’s best for you to reach out to her healthcare team for further explanation. Treatment varies for each individual so it’s important that she continues to take her medication as prescribed by her doctor.  Learn more about EEG readings here:https://www.epilepsy.com/learn/diagnosis/eeg https://www.epilepsy.com/learn/diagnosis/eeg/how-read-eeg Your daughter my want to consider keeping and journal or a diary. My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryis a great tool for tracking changes over time, seizures, recording medical history, medications, side effects, moods, behaviors, triggers, and other personal experiences, which can be shared with her healthcare team. My Seizure Diary also helps you remember what to do - you can have reminders of when to take your medicines, when to refill a prescription, or when you have medical appointments or tests. It is common for those who are in caretaker role to feel overwhelmed. It’s important to remember that you are not alone, and that you’retaking care of yourself as well.  https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdf Additionally, you may always contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000 contactus@efa.org, where a trained information specialist can connect you to resources, provide referrals and additional support.epilepsy.com/helpline  Or contact your local Epilepsy Foundation at: https://www.epilepsy.com/affiliates to find support groups, events, and programs in your community. 

I certainly understand your

Submitted by Patriotrehab on Fri, 2019-09-27 - 12:11
I certainly understand your concern and while I cannot interpret the results as good or bad, I can tell you that her neurologist has already stated that her routine EEG shows abnormalities, which means that she is still at risk for seizures and needs to take her medication. Those of us who experience epilepsy have abnormalities in the brain much of the time that show up on an EEG that we never “feel” and often never cause us any problems. However, every person is different and so what is important is that she keeps track of her events and any changes in symptoms and that she reports them to her doctor so that any patterns or irregularities or changes in medication can be addressed through the the doctor. If she is unaware of her seizures, she may want to tell people that she is close to about her seizure history so that they know what to look out for if she is living on her own and has safety concerns related to a loss of awareness related to seizures. If she doesn’t lose awareness during seizures, this may not be necessary. I’ve lived with epilepsy for 19 years, diagnosed at 19, and have had the full spectrum of seizures. It can be hard to reconcile with oneself that you may be on medication for the remainder of your life, but once you accept it; it’s easier. I understand how hard this must be for you too as her mother. Seizures are often out of our control and that is what makes them so scary. But, remember...they’re usually over within a few minutes and hers are pretty well controlled now. So, as long as she’s taking her medication and following what the doctor tells her to do, she’s doing the best she can to be like a pilot in command authority over the situation. Even if her control panel (brain) fails for a few minutes because of a breakthrough seizure, she will have done the best that she can to prevent it and may be able to prevent a disaster because she’ll have the medication and doctor on standby to get back in the air. 

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