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I need your help

Fri, 10/11/2019 - 00:01
I need your help. My wife is recently 30 years old and 3 years ago she had her first seizure (I thought it was simply fainting). From that time she had 18 seizures. I need to write a lot here to explain what's going on, but I want to be concise, so I will write several points. Seizures started at the age of 27. I didn't see first seizure, she only told me that she fainted, I had no idea that it could be epileptic. Two months later she became pregnant. In 3rd month of pregnancy I have seen her seizure for the first time. Since 2015 when it started she had 18 seizures. Most of them happened in the morning - also during sleep (or during waking up). Seizures last 10-30 seconds. Except for 2 seizures, all were tonic (not tonic-clonic but only tonic). Sometimes she had several seizures a day. 4 seizures happened in the afternoon, always on a day where morning seizure occured. She always regains consciousness immediately. Typical seizure - she starts to feel "stuffy and weak", sometimes she is able to sit down or lay down. They she become rigid and makes a scream. Then fall (if standing) and makes screams again, her head moves backward if she lays on her stomach. She has "blue" skin colour (not sure if this is proper word). She is on Keppra and Lamitrin (maximum doses of both medications). They seem to don't wark at all. The longest seizure-free period after it started (10 months) occured when she was on very low medication dose (further blood testing shown that it was far too low). She had EEG 4 times. 1st EEG was performed about one hour after seizure in the hospital. It has shown "abnormal epileptiform activity with predominance of the frontal lobe and left side". 2nd, 3rd and 4th EEG were totally normal. 4th EEG was performed two days after the hardest day with 4 seizures in one day. It looks like her brain functions normally except for days when she has seizures. Neurological testing has shown "tendency for Babinski reflex on the left side". MRI was normal. Cardiological testing was OK except for too high heart rate. I don't see any seizure trigger. It doesn't matter if is sleep deprived or not. Several times she drank a beer or two - nothing happened. The only possible trigger could be stress but also here I don't see relation. Most of seizures happened when she was stressed, but not all of them. Please give me any idea what could be the reason that adult person at the age 27 starts to have seizures, drugs don't work on her, the situation worsened in last year (12 out of 18 seizures happened in last 12 months). I am hopeless. We have small child that we planned before I know she has this problem and I am scared about life of my child.

Comments

1 in 26 will have epilepsy at

Submitted by Patriotrehab on Fri, 2019-10-11 - 00:40
1 in 26 will have epilepsy at some time in their life, which means that it can start at any age. While EEGs and other tests like MRIs have helped doctors to identify where the seizures are coming from in many cases of epilepsy...they still don’t know what causes the seizures for most people who have epilepsy. My epilepsy started as a result of complications related to a pregnancy 19 years ago and my son is now a healthy adult. I certainly understand your fears because of the nature of the seizures and lack of control, but many mothers who have epilepsy have been able to care for young children without there ever being a problem. It sounds like your wife needs to see an epilepsy specialist. It’s been more than a year and she’s been on two medications and still having seizures. I’m sure someone from the Epilepsy Foundation will be responding to you over the next few days with that information as well as some other resources. Seizures increase sometimes for unknown reasons with or without medication. I’ve had that happen to me over the years too. An epilepsy specialist may recommend an extended video EEG to better understand her brain abnormalities and see if they can capture her seizures.

Hi,  Thanks so much for

Submitted by Anonymous on Fri, 2019-10-11 - 10:22
Hi,  Thanks so much for posting, we understand this can be very scary and confusing for you all to experience. Treatment varies for each individual. It’s important that you all continue follow-up with her healthcare team to determine what individual treatment plan is best for her and if she experiences any changes in side effects, seizure types, frequency, behaviors and symptoms. For assistance and information regarding finding a specialist, or a second opinion please visit:https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinions https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist  As Gianna mentioned in her comment, epilepsy and seizures can develop in any person at any age. Factors such as other health conditions, age, and race may make developing epilepsy and seizures more likely. Our new to Epilepsy & Seizure tool kit is a great resource and starting point for learning about what epilepsy is, what resources are available, how to make the most of doctors' visits, how to take control of seizures, seizure first aid & safety. Learn more here: https://www.epilepsy.com/living-epilepsy/toolbox/new-seizures-and-epilepsy Review our women and epilepsy section of our website with your wife, to learn more about issues that are unique to her as a woman with epilepsy. https://www.epilepsy.com/living-epilepsy/women It is common for those who are in caretaker role to feel overwhelmed. It’s important to remember that you are not alone, and it is just as important to make sure you’re taking care of yourself as well.https://www.epilepsy.com/living-epilepsy/parents-and-caregivers  Additionally, there are plenty of things you all can do to reduce these feelings and help to manage her epilepsy: Create a seizure response or action plan: https://www.epilepsy.com/living-epilepsy/toolbox/seizure-forms which is a helpful tool for those around your wife to understand what to do if she has a seizure.  Use a journal ordiary, to track her seizures, record medical history, medications, side effects, moods, triggers, or other personal experiences. https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary Review our seizure alert device factsheet with her doctor, to see if a seizure alert device is an option for her: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdfIt can be helpful to connect with other people who live with, or care for those with epilepsy, to ask questions, share experiences, find & give support to each other, by contacting your local Epilepsy Foundation here: https://www.epilepsy.com/affiliatesAdditionally 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   

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