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brc76

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I'm a new member. I was diagnosed with temporal lobe epilepsy about 6 years ago and i've been using Trileptal since that time. I always had doubts about it since i thought the start of my attacks were strange but the EEG showed it clearly according to the doctor. I went to 3 other doctors during this period, only one told me that i may not be epileptic and i stopped drugs as per his advice but after that, the attacks came so fast. My attacks always come with same thought. First i start thinking about death related issues and within seconds i don't know what happens but i loose myself and according to what they say it lasts about 20-30 seconds or even shorter. I had no attack since i started drugs but a week ago it came so bad. I was in the bath, i started thinking about death automatically and then suddenly i found myself in kitchen floor. Can the attacks always be started or triggered by the same though? The doctor told me that it may be the case for a person with temporal lobe epilepsy... I don't know. Is there anyone having the same things like me? Pleased to hear your experiences/thoughts
 
Welcome :hello:

There's a lot of information to be found here at CWE. I see that Robin has already supplied you with some great links to get started. I hope you make yourself at home. Feel free to ask any questions. This is a wonderful group full of caring and supportive individuals :)
 
Thanks very much for your supportive messages! I'd like to share opinions and experiences here. I never registered to anywhere for years (i guess i was thinking i might not be epileptic despite doctors' reports) but maybe it's time to share. Thanks again!
 
I am glad that you are working to help yourself.
My daughter has been put through the wringer with her seizures.
Told she does have E, she doesn't have E, she does have E, it is now possibly due to a blood sugar issue. We have been on quite a roller coaster ride.

You must take a proactive approach to your own care these days. I think especially where E is concerned, the time and expense it takes for a physician to accurately diagnose the CAUSE of the patients seizures, makes it more profitable for them to just prescribe an AED... multiple ones if it will keep you safe.

I am not so sure I trust the doctors reports all the time. I have copies of some reports which is what clued me in on the fact that they are not really listening. There is no time provided to correct the inconsistencies. We barely have time to ask our questions.

We will try to point you in the right direction when we can.
I hope you find it helpful
 
Hi brc! Welcome to CWE. :) Feel free to ask questions, chime in, or just vent. As for triggers, each of us is different, so it's hard to say yes or no. When you do think about death, it could be that it raises your stress level just high enough to trigger a seizure, or it could be that your breathing changes in response to the anxiety you are feeling and that the change in breathing is triggering the seizure, or it could very well be the thought that is acting as a trigger. I wish I could give you a cookie cutter answer, but this is definitely not a cookie cutter condition. :)
 
Welcome BRC

What you described of having a thought before a seizure made me think of how when I was younger a certain thought would come to mind. It seemed to be a very random thought & I might have the same thought for a week with my seizures before a new one starts.

That doesn't seem to happen too often anymore unless it's a nocturnal (night time) seizure that wakes me.

Meanwhile look around & see what you can find. I'm always amazed at how much info this site has.
 
Welcome BRC! :)

I'm glad you decided to participate and join us!

To answer one of your questions, the one about "death," I do not get that thought. However, I do get a series of similar thoughts before each seizure. As soon as I start getting "cues" (called an aura) that I am about to have a seizure, I feel a sense of fear/doom. So although mine is not exactly the same as yours, I wanted you to know that you aren't alone. :agree:

Again, welcome, I look forward to getting to know you!
-Julie :e:
 
I found a paragraph interesting in [ame="http://www.amazon.com/Epilepsy-New-Approach-Adrienne-Richard/dp/0802774652/ref=pd_bbs_sr_1?ie=UTF8&s=books&qid=1232758456&sr=8-1"]Amazon.com: Epilepsy: A New Approach (9780802774651): Adrienne Richard, Joel Reiter: Books@@AMEPARAM@@http://ecx.images-amazon.com/images/I/51p9fv6oOYL.@@AMEPARAM@@51p9fv6oOYL[/ame]

"Where a seizure begins with an aura, the series of preliminary sensations or images, the specific content of the aura may hold personal meaning. It can be addressed like the images of a dream. Experiencing fear to the point of terror or a sense of pending evil is typical. Although the fear may be aroused because certain areas of the temporal love and limbic system are involved, how that fear is expressed will be as personal as a dream image.

Intense fear is a common experience, either as an element in the aura or as anticipation of a seizures's onset. Sometimes there seems to be personal reasons for feeling afraid...

Addressing fear in both personal and larger terms can help enormously. A certain relaxation will occur. The writer Norman Cousins once told the Christian Science Monitor, "Fear of disease is one of the greatest intensifying factors in that disease - and so if we don't meet that fear, we're impairing the treatment." As you learn to see epilepsy in a positive light, you release yourself from fear in a very real way.
Click to expand...
 
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Hi brc76, welcome to the forum. :hello:

Make yourself at home here. :)
 
seizures4ever said:
Welcome BRC! :)

To answer one of your questions, the one about "death," I do not get that thought. However, I do get a series of similar thoughts before each seizure. As soon as I start getting "cues" (called an aura) that I am about to have a seizure, I feel a sense of fear/doom. So although mine is not exactly the same as yours, I wanted you to know that you aren't alone. :agree:

Again, welcome, I look forward to getting to know you!
-Julie :e:
Click to expand...

You are not alone at all, as I have recently found out. with my seizures, there have been a few different ways that they have come on, like different ways the aura hit me. first was right after waking up I would have to vomit violently and I would get this weird feeling, and before I know it, I wake up in a hospital somewhere. Then there have been about 5 times over the last year where I started getting that crazy a$$ed feeling and like, I couldnt stop having these recurring thoughts, the last few times i frantically called my mom and yelled at her quickly to just start talking about anything to get my mind off those bad thoughts I was having. the weird thing about it, is that I don't even remember what they are, I don't remember what the memories/dreams that send me down that dark path are about. I guess that is a good thing!

I have had a few panic attack triggered stress induced grand mal seizures in small bathrooms. Until just recently, no one had witnessed any of my seizures, however, my last two episodes were both witnessed; and both times, I had 3 full blown grand mal seizures, even while on full doses of anti seizure meds at the ER. It makes me wonder if i had 3 or more seizures every time I had seizures over the last 14 or 15 months... waking up in so much pain that i can't stand up or walk, and I wake up screaming every 4 hours for more hydromorphone for my crazy headache.

Anyway, back to my seizure types, This very last series of grand mals was the first time that I have had seizures start in the late afternoon. Normally it is right after I wake up. This last time was at like 4:30-5pm-ish, I was having a talk with my 10 year old, when all of a sudden I felt the aura come on; I jumped up and ran up stairs to get to my bag of meds, and the seizure dropped me right after I got to the top of the stairs. my girl saved me big time; and I really wish that they hadn't seen it, but she couldn't keep the boys out of the room, so they saw some of the worst of it, but they also were a big help getting the EMS crew to me and helping to clear a path to get my huge a$$ out of the house; remember I had ran upstairs to seek meds. They are ok with things, and understand that I have epilepsy and stuff. teaching them things has been beneficial for me too; I have needed to go over everything I have ever learned, just to make sure it is still up there after scrambling my brains so many times.

Best of luck to everyone, and thank you all for being here!
 
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