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Do I have epilepsy?

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Epilepsy
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Posted 3/31/2005 8:32 AM (GMT 0)
Hi,

I'm 39 and a mother to a baby (whom I am still breastfeeding) and toddler. About a week ago I had a seizure with tongue biting and I lost conciousness for 10-15 minutes. The seizure occurred in my sleep and probably the only one who saw it was my 3 year old daughter but she could not tell what happened. I have been to two doctors with very different diagnosis and this is so confusing. I had an EEG as well as a CT Scan done.

Prior to this seizure over the past 10 years I have the occassional feeling of discomfort where for about a minute or less I would feel cold, scared, sometimes stomach discomfort and as though something was terribly wrong with me. Just before my seizure last week I felt that familiar discomfort. I am not sure if that was an aura or not.

Doctor 1 (who is a physician and cardio expert) told me I had a seizure disorder (based on reports he received from the neurologist), that what I felt was and aura , put me on 1000 mg Epilium and told me to wean my baby.

Doctor 2 (who is a proffesor and consultant neurologist) told me there is no need for me to be on medications since it is only the first seizure as epilium may affect my fertility and may cause birth defects should I wish to have another child. He told me that what I described to him does not sound like and aura and he was not worried about the EEG. He told me there was a 50/50 possibility of another seizure but I should go on with my life as normal, that it was unneccessary to be treated. He suggested that I do an MRI to be sure.

I am sooooo confused. Should I seek a third opinion? What exactly is my diagnosis? Do I have epilepsy? Was what I had an aura? Can somebody please help me? I feel so lost and scared as I am a SAHM with two kids under 3 at home.

 

Thank you.

Posted 3/31/2005 11:49 AM (GMT 0)
hi there-
your story sounds a lot like mine, and the first time i ever had a convulsive seizure i was told that i do have epilepsy, and i've been on medication since that day. i've also been having seizures since that day. now, about the auras... i had the same symptoms as you, and when i told my pcp about it, he said they were small panic attacks. i came to find that they were partial seizures or auras. they would hit me randomly, meaning i didn't have to be doing anything in particular. i could be watching tv, eating dinner, at work, taking a walk, at a party, sleeping in the middle of the night, etc... i would suddenly get the chills and the goosebumps, start sweating, get a strange salty taste in my mouth and smell in my nose, feel lightheaded, have a very strange feeling of deja vu, and get butterflies in my stomach along with terrible fear or feeling of uneasiness. it would last for a minute or so, and then i'd go on with whatever i was doing. when i have these auras now years later, it always means that a seizure is about to hit.
i don't mean to sound crass or scare you, but i would get another opinion personally. i would suggest trying to remember what you were doing, where you were, what the date and time were, and exactly how you felt and how long it lasted. write all of the information that you can remember down, and keep a journal of the same information, for each time it happens between now and when you see your doctor,(which probably should be a qualified neurologist). read up some more on the disease and look for any similarities in your symptoms, to people who have the disease. write all of those down and bring them to your doctor too. good luck.
Posted 3/31/2005 1:33 PM (GMT 0)
I am so sorry this is going on!! I would talk to another neuro about this. While this neuro is accurate that many who have ONE seizure do not go on to having a second one, you sound like you have had some small ones for 10 years. (an aura is a simple partial seizure, sometimes they progress to a bigger seizure, sometimes they remain simple partial)>....


It is so common for doctors to disagree, frustratingly so!!


There are other seizure meds that are less likely to cause problems for a baby. I would get yet another opinion. Sounds like the EEG showed that something more is going on than a one time event!
Posted 4/1/2005 1:55 AM (GMT 0)
Thank you! Thank you for replying to me. I have decided to go for a 3rd opinion and I will post an update here after that. I have so many questions, so much confusion and fear within me and lots to post but for now I think rest is the most important so I mustn't overdo my 'research' on the internet for answers.
Posted 4/1/2005 10:17 PM (GMT 0)
((((Sahmof2)))) Glad you will keep seeking a better answer from another doctor. Hang in there!
Posted 4/5/2005 6:00 AM (GMT 0)
You sound so much like me! I am a 36 year old mother of 2 (P/T SAHM), kids are both under 4 years old. I had my 1st seizure last week at home, involving a partial complex episode, with about 5-15 minutes loss of consciousness. It was very frightening. Loss of my Driver's license, put on medication. I don't want any more kids so the fertility piece is not an issue for me. I am so worried about having another one, I want to be on the medication.

I had a CAT scan, EKG, going for EEG and MRI tomorrow. I think you should get a 3rd opinion if you aren't really sure and get dx tests such as what I am getting. From the reading though, it does seem to happen like this "out of the blue". I am sorry it happened to you, to me, to all of us. I hope you find what helps and that I do too.
Posted 4/12/2005 2:37 AM (GMT 0)
I'm so glad to find this forum.  SAHM, I can totally relate to your story.  Even though I didn't have a classic "seizure" or lose consciousness, I'd like some advice...I am going tomorrow morning for an MRI and EEG and am really scared.  Last summer I started having what I thought were panic attacks.  I'd get short of breath and feel like I was in a tunnel for about 30 seconds-1 minute and not really be aware of what was going on around me.  I was prescribed Xanax which I took on days when I felt extra anxious.  Last Friday evening I was about to leave work and I was talking to a friend of mine.  She was standing and I was sitting in a chair.  She said I started kind of rocking back and forth, turning around in the chair and my eyes were closing and rolling from side to side.  I was unresponsive, but I do remember "coming to" (I guess?) and hearing her call my name and seeing her face.  A few minutes before this I had called a friend and asked him a question, then called him right back and basically had the same conversation with him that I had just finished.  He rushed over and told me he was taking me straight to the ER, which he did.  The doctors didn't really offer much help and dismissed it as another panic attack.  The MOST UNSETTLING THING is that I don't recall hardly anything about the few days leading up to that episode, and I don't remember much of anything the rest of that night.  Since then, I've felt a very strange sense of things being unreal.  It's like I'm in a constant dreamlike state, which is very unsettling.  I constantly feel like I'm reminiscing about things--recalling memories and certain feelings from my past--not major life-changing memories, but very small, random things.  Also, everything tastes and smells a little strange, which has improved since Friday night.  Did I have a seizure?  If so, is it common for these feelings to keep going on like this?  Any help would be soooooo appreciated.  sad sad sad
Posted 4/26/2005 7:56 PM (GMT 0)
Bump . . . I think post above was overlooked. I'm from another forum but was checking into some symptoms.
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