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Post TBI seizures???
Sun, 10/22/2017 - 22:58Topic: Share Your Story
Sorry in advance about the length of this post...But I need help.
I was in a car accident and had a TBI. I was diagnosed with having seizures shortly after. I have had an EEG and it was "normal"...However it said that I had deep V waves during sleep...The kicker is, I was NOT sleep or tired during the test. My daughter-in-law said that she tried to wake me one day because I was grunting "hard" and making weird sounds while sleeping, but she couldn't wake me up. I read that I should record me sleeping so I did. I noticed that my hand was moving up and down on its own and I was constantly shifting my head up and down too. Later that night (same video) I jerked extremely hard and my eyes rolled hard at the same time but I never actually woke up.
Is this signs that I am still having seizures? I don't know what to do because my neurologists just treating me for the migraines and not actual seizures. But I know my body and something isn't right. Can anyone help me?
Comments
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I have post TBI Epilepsy. For
Submitted by james_ware03 on Mon, 2017-10-30 - 15:37
I have post TBI Epilepsy. For a long time, my neurologist was treating me for seizures, trying different medications and seeing if anything changed or got better. I usually have 1-4 seizures a week, but without my medication, I get them multiple times a day and they are really strong. Anyway, they didn't get any better, so my neurologist had me do an ambulatory EEG that I wore around for 3 days. Of course, nothing happened during that time, and the EEG was pretty normal. After that my Neurologist sent me to an Epilepsy Monitoring Unit. Basically, I checked into a hospital, they hooked me up with and EEG, IV, all that good stuff. There were also 2 cameras pointed at me. Someone was literally watching me 24-7. The neurologist there was slowly taking my medications away until I had a few seizures that she could watch, look at all my vitals, and EEG. That's when I was officially diagnosed with Medication Resistant Post TBI Epilepsy. So if you haven't had an ambulatory EEG yet, that you can wear over 3-5 days, then maybe suggest that, if you have done that, then maybe the EMU could be a suggestion.
Also...I have been on seizure
Submitted by lyn_B on Sun, 2017-10-22 - 23:01
Also...I have been on seizure medications at least one year or so and still on them now