Grand Mal's and Scary Side Effects

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New Member

Date Joined Nov 2008
Total Posts : 3
   Posted 11/10/2008 4:24 PM (GMT -6)   
Hi, I'm new here. I have been having seizures for a little over two years. I have mostly grand mal, but also petit-mal and psuedo seizures. It's like getting in a severe car accident sometimes, waking up and having amnesia. I have many scary side effects from my seizures including, taste of blood, smell of blood, hallucinations, disorientation, and forgetfulness; not to mention the MASSIVE bruising and pain I go through. I've been without a seizure for about 2 and a half months, I am starting to have deja-vu, and I know when that happens I'm getting ready for a bad one. They, (neurologists and doctors), do not know why I am having seizures, they have put me on all kinds of medications, most made the seizures and my awareness worse. I have been prescribed amitriptiline, in hopes of some help, but alas, I am too afraid to take it. Does anyone else have the intensity of negative side-effects I am having, and have you ever gotten any answers as to why and how to help it get better. This disease, (epilepsy), has torn my world apart. I didn't even know who my husband and kids were after one of my last bad ones this last spring. I KNEW that they were my family, they just weren't familiar to me, and most of my 4 year old daughter's infancy is lost to me, I don't remember it. . . Some things come back and some things don't. Any feedback will be greatly appreciated, I feel so lost. .

Veteran Member

Date Joined Jan 2006
Total Posts : 2408
   Posted 11/21/2008 7:32 AM (GMT -6)   

Im sorry you have had to wait so long for a reply.

I am not a medical professional but l I have to be honest here and say that this does not sound like Epilepsy on its own. (Perhaps in part but not completely). I have never heard of anmesia like that being caused solely by Epilepsy. There is a certain amount of retrograde amnesia (Amnesia prior to the seizure) and Anterograde Amnesia (Amnesia after the seizure) and the length of time can vary from person to person but normally it would not be too long.

What specialists have you seen at the hospital?

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Veteran Member

Date Joined Feb 2003
Total Posts : 662
   Posted 11/21/2008 2:57 PM (GMT -6)   


What meds are you on? It is a proven fact that some anti-epilectic drugs can cause SHORT TERM memory loss but over the years, you start to remember things that you thought were lost forever.

TRIGGERS ~ There are many things that can "trigger" a seizure such as STRESS (that's the big one), certain smells, sounds, flashing lights, lack of sleep, head trauma, or combination of some of these together.

If you can figure out what your trigger(s) are, maybe you can illiminate it or avoid it.


Diagnosed with Epilepsy & Ulcerative Colitis.
Current Medications: Diantin 275mg, Pheonobarb 150mg, Asocol 3,000 mg.

Veteran Member

Date Joined Jul 2006
Total Posts : 1249
   Posted 11/23/2008 4:59 PM (GMT -6)   

Nibbor,  I would definitely try to find another neurologist for a 2nd opinion.  You may not be on the right meds or have the right diagnosis. Things to do if you have epilepsy are - keep yourself and especially your hands very clean.  Getting sick and having a fever can metabolize you med faster and then you have no protection.  It is very important to get enough sleep each night - at least 8 hrs.  Things to avoid - anything with caffeine in it so no coffee!  Also, no alcohol which can cause seizures.  Try to avoid stressful situations and don't get too upset over something.  The best advice I can give you is to try another dr. and to look around carefully for a neurologist who specializes in epilepsy.  My son has this condition and he is very much under control and living a normal life thanks to an excellent neurologist.  Please keep posting so we know how you are doing. Take care of yourself.


New Member

Date Joined Nov 2008
Total Posts : 3
   Posted 11/25/2008 10:23 AM (GMT -6)   
Hey you guys, thank you for the responses. I think you're all right, I need to keep trying, I need to find out what the triggers are, STRESS I have always suspected was a factor. And I need to find a second opinion. I really appreciate your help. I'm supposed to go and do a sleep study, they only happen during REM sleep for some reason, and the amnesia? It's lasted a whole week before. It comes back when people say certain words, or mention certain happenings, sometimes that's all it takes, is one word, and a whole memory will come flooding back to me, I know it's all in there somewhere, just the circuits going there get a little fried. Thanks again, and know that you helped, really, I needed to smile this morning. idea
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