Infrequent Seizures with No Warning

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Joined: Tue Feb 26, 2008 8:54 am
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Infrequent Seizures with No Warning

Postby tgilizard » Tue Feb 26, 2008 9:17 am

I am a 39 year old female and 7 years ago I had my first seizure, well, so I am assuming. I have no history of them, nor does anyone in my family. Depending on which doctor I see, I have been given a different opinion. Since that time, I have had about 15 "episodes", where I have no memory of them, I have bitten my tongue on the sides severely (I have even had to have stitches), and have a hard time recovering. Most of them happened while I was sleeping, but a few of them did happen when I was awake, with absolutely no warning, I literally wake up on the floor or ambulance, and have no recollection of the time lost. It takes a couple of hours for me realize fully what has happened and for the pain in my body to start hurting (tongue biting, pulled muscles in my neck or back). And yet, I have 2 normal EEG's & MRI. My neurologist is now telling me he doesn't think I am having seizures and may take me off of Topomax. I am scared to death. I feel like no one is listening. I have asked him to send me to a place that specializes in seizures and he has done that. I am waiting now for the information. Can you let me know what I should be asking at the new place?

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John Kenyon, CNA
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Re: Infrequent Seizures with No Warning

Postby John Kenyon, CNA » Mon Aug 04, 2008 8:49 pm

Hello -

There's almost no doubt you've been having seizures. Since they have mostly occurred during sleep I assume there's very little information to gained from witnesses, who apparently don't realize it's happening either. Nocturnal seizures seem to be more common than generally thought and are often difficult to diagnose. When you had the EEGs done did anyone use a strobe to try and induce seizures or at least brain wave changes? I'm not sure even that is always accurate, but if it's positive it's accurate at least.

You've done the right things, and hopefully by now you've been to the seizure specailist and know more. If the Tomamax has seemed to be preventing the seizures or at least reducing the frequency, then that or something equally (or more) effective should be continued or added. I can't see stopping the medication if it's helping and every bit of your story is consistent with nocturnal seizures. Many people experience random, seizure-like activity when falling asleep, so I'm sure there's a period where some people cross that threshold. I'd simply make my statement as strong as possible and not allow myself to be intimidated by skeptical clinicians. This would seem to be a case where "If it walks like a duck and quacks like a duck it probably is a duck."

Hang in there. Best of luck to you, and please do follow up with us here.
John Kenyon, EMT, CCT
Non-invasive cardiology tech, Emergency and Critical Care technician, Critical Incident Stress Mgmt. specialist

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