Feel Like Two Different People???

Hello, you didn’t mention anything about other complications with your pregnancy, but I do wonder about it because your history sounds similar to mine except that I also experienced medical neglect that complicated my history and is part of the cause of my epilepsy. I’ve had intractable epilepsy for 19 years that started as a result of medical neglect when I had untreated pre-eclampsia for several months while pregnant. I had an emergency c-section when I was 33 1/2 weeks pregnant and my son is now a healthy adult. I did have to receive steroids for fetal lung development and he was in the NICU for a couple weeks. But, two days after delivery I had 3 tonic clonic eclamptic seizures went into cardiac arrest, stopped breathing for four minutes and was in a coma for several days. They initially said that I had vasculitis, encephalopathy, and multiple strokes, but now they believe that it may have only been vasculitis and this thing called PRES, which is called posterior reversible encephalopathy syndrome. The reason that I am mentioning PRES is because while neurologists see it often in the acute phase...it’s rare to see it in this stage even though someone who has seizures while pregnant and especially if they have high blood pressure may actually have irreversible brain damage that can lead to intractable epilepsy even though it may be microscopic and undetectable by an MRI within a few weeks. The initial symptoms and initial MRI often mimic stroke, but like I said it doesn’t show up on the MRI later. Cognitive impairment also tends to be an ongoing problem, which may only show up in neuropsychological testing. Sometimes vision problems are an issue in the beginning and can lead to permanent changes as well in severe cases. I guess a potential starting point to see if PRES is applicable to you is to see if you had high blood pressure and if there is an MRI report and EEG from that period of time when you were in a coma/pregnant/delivery. It took 19 years before an epileptologist suggested the PRES thing to me and she said that it can result in the brain constantly making adjustments. I’m still waiting on my epileptologist who treats me to help me understand more. The medication that has helped me most with my epilepsy and migraines is Topamax, which I now take 400mg daily (200 mg AM and 200 mg bedtime). I anticipate that I may be adding another medication when I see my doctor after the first of the year. 

Hi Hannah, Thank you for posting, it sounds like you’ve been through a lot. It’s important to remember that you are not alone. We know that being diagnosed with epilepsy can be upsetting and make you feel isolated. One of the most important things to help you live with epilepsy is to find a support network. Learn more about your community support, here: https://www.epilepsy.com/learn/challenges-epilepsy/social-concerns It's important that you continue to follow-up with your healthcare team discuss your concerns and any changes in seizure frequency, side effects, seizure types, changes in behaviors and symptoms. As you stated we are not able to interpret your MRI results for you. If you decide to have surgery, your epilepsy team will help prepare you and your family. Your healthcare team will also review what options are possible for you and will help guide you through the proper evaluation and testing,prior to making a decision about surgery and discuss your personal goals and expectations. Working together with your epilepsy team is the key to understanding your epilepsy and the best treatment options for youIt is also important to remember when preparing for epilepsy surgery that every individual experience and path is different. Review our list of commonly asked questions about epilepsy surgery, learn more about the recovery process and common themes for people living with epilepsy & family members during their journey through epilepsy surgery, here: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/surgeryThere are several different types of surgery that are available to treat people still having seizures after trying medications, or other therapies and if their seizures are uncontrolled. To learn more about various types of epilepsy surgery and questions to review with your healthcare team, please visit: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/surgery/types-epilepsy-surgery  My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryis a great tool for identifying & tracking seizures, setting reminders, managing medications & side effects, setting reminders, recording medical history, moods,behaviors, triggers, and other personal experiences, that may affect seizures and wellness, which can be shared with your healthcare team. For more information regarding seizure safety at while sleeping, please visit: https://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safe/safety-while-sleeping  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  

Wow!!! Thank you for the info we sound a lot alike I have high blood pressure and actually the day I wrecked I was going for my stress test. Would like to chat with you more if I could and compare notes.