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Old 03-13-2010, 08:28 AM   #1
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Join Date: Mar 2010
Posts: 40
amy1021 HB User
First seizure

I am new to the board and also new to having seizures...or so I thought. Last wednesday I woke up to paramedics standing over me. Apparently I had had a grand mal seizure in my sleep and my boyfriend had called emergency when I stopped breathing. I was extremely disoriented and confused. I had no idea what was going on until they explained it to me afterwards. I was quickly sent to the hospital where they did a CT scan and blood work. The CT scan came back clear, so the doctor sent me home and told me I would get a call soon for an appointment with a neurologist.
What I later realized, and had also explained to the doctor, was that I have been having simple partial seizures or aura's for about a year now. I had not seen a doctor about it because I thought it was episodes of 'derealization' brought on by stress and anxiety. The day before I had the grand mal seizure, I had had several of these aura's...which was likely a warning sign that something more was coming.
It's very hard to explain an aura. The simplest way to describe it is like a deja vu, a dream, or a memory of some sort. I think of something that I have thought of before in the past, or hear a song, then I get this strange sensation throughout my whole body, get a certain burny smell in my nose, and become nausated. They usually last only a minute, and I feel pretty much fine afterwards.

Has anyone else experienced these aura's? I would like to hear about them to see if they are similar to mine.

I'm still waiting to hear from the neurologist and hopefully I can get some answers. I do know that epilepsy runs in both sides of my family, so it's quite possible this is what I have. It's very scary to think about, but hopefully with the right meds I will never have to experience any type of seizure again.

Last edited by amy1021; 03-13-2010 at 08:31 AM.

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Old 03-13-2010, 05:25 PM   #2
Join Date: Mar 2010
Posts: 2
RYLH8605 HB User
Re: First seizure

Hi Im new to the board to. My daughter was just dx with epilepsy. Shes only 8 so its kind of hard for her to explain, but mostly she says she sees colors around things and smells burnt rubber. She has Tonic Colonic seziures which I think is the same thing as Grand Mals. Do you see the colors also?

Old 03-14-2010, 07:38 AM   #3
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Join Date: Mar 2010
Posts: 40
amy1021 HB User
Re: First seizure

Hi RYLH8605,
Sorry to hear about your daughter. I hope she is doing well. Being 24 years old myself, even I have trouble explaining these episodes/aura's. I've told people the best thing they can do is look it up. I have not seen color, but I do get a strange smell and often times I will hear a song playing in my head (if that even makes sense?). I'm sure everyone's experience with aura's are different, but it sounds as if what your daughter and I are experiencing is same, which leads me to further believe that I do in fact have epilepsy. If you don't mind me asking, what kind of epilepsy was she diagnosed with (frontal, temporal,..?) and what medications is she now taking?

Old 03-15-2010, 12:26 PM   #4
Join Date: Mar 2010
Posts: 2
RYLH8605 HB User
Re: First seizure

Well, she has temporal lobe damage from a car accident that happened in Sept 07. She just had her 1st sezuire this past Jan and has had 3 tonic colonic since then. The 1st nero we saw was just horrible who had her taking 750 mgs of Depakote a day. Thats 2 pills 3 x a day ( alot for a little girl). We finally got into a pedi nero and we are weaning her off the Depakote and putting her on Keppra. Im trying to learn as much as I can about epilepsy. There is just so much to take in. Im really thankfull for the new Dr though.

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