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help

Wed, 01/01/2020 - 13:06

Hi thanks for taking the time to read, I won’t make this long. My car was rear ended at 90 mph and my airbags did not go off, I broke my spine in a few places, including one c-spine fracture. My body was mangled and it has taken me years to rebuild my body. I am very lucky in that I never lost lotion completely, but it is difficult to move. I get strange seizures that I will try to explain. I also want to add that I am seeing a neurologist for this and we are waiting for insurance to approve scans at the moment. I never lose consciousness, but I shake. Sometimes I remember if I try really hard to remember as I am shaking, but usually my memory is wiped. If I am standing and I shake, I will hold onto something until it passes, usually less than 20 seconds, or I will sit down. My memory is awful, it hurts to use my eyes in any capacity but light is painful. My hearing is off and I find myself using too much volume without realizing. I know I must seem off. Wondering if anyone has ever experienced something like this? These weird seizures where I am always awake? I get deja vu and I become very fearful and confused. Any insight or anything is appreciated, I am just trying to understand what’s happening so I can try to repair it and move forward. Thanks again :)

Comments

I cannot say that I

Submitted by birdman on Wed, 2020-01-01 - 19:25
I cannot say that I experience the same sensations you do; we are all unique and experience our seizures just a little differently.  But as a child I had the "funny feelings" that scared me and caused me to grab for mom.  Later I made strong attempts to relax despite the scary feeling.  Now I still have those scary sensations, but just knowing that they are seizures and have a limited life makes me less afraid.  It also helps me to know that my seizures arise from the temporal lobes.  The right temporal lobe amygdala is responsible for emotion and the fear that come with the seizures.  The left temporal lobe is my "dominate" temporal lobe meaning that it is responsible for managing my memory.  Understanding is good medicine so keep learning.  Mike

Hi, Thank you for posting, it

Submitted by Anonymous on Thu, 2020-01-02 - 09:46
Hi, Thank you for posting, it sounds like you've been through a lot. We are happy to hear that you’re seeing a neurologist to explore this further and are scheduled for additional diagnostic testing. It's important that you review any changes in behaviors, moods and symptoms with your healthcare team as well. Documenting these episodes in detail, (like you’ve done in your post), will be very helpful to review with your neurologist. My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryis a great tool for tracking seizures, setting reminders, managing medications & side effects, recording medical history, moods, behaviors, triggers, and other personal experiences, that may affect seizures and wellness, which can be shared with your healthcare team. As Michael mentioned in his response,seizures can take on many different forms and affect different people in different ways. To learn more about seizures, visit: https://www.epilepsy.com/learn/about-epilepsy-basics/what-happens-during-seizure  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, and how to take control of seizures, seizure first aid & safety. Learn more here: https://www.epilepsy.com/living-epilepsy/toolbox/new-seizures-and-epilepsyAdditionally, you may always contact our Epilepsy and Seizures 24/7 Helpline: epilepsy.com/helplinewhere 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, contactus@efa.org 

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