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Posted 11/26/2005 4:16 AM (GMT 0)
After a seizure, how do you all keep yourselves from focusing on when/if you will have another?  I just had one.  I don't know what type though.  I was sitting at the computer and fell forward an inch or so.  I lost consciousness for a few seconds.  I'm slightly tired but ok physically.  I know I can't focus on if I will have another one and that thinking about it will mean I'm more likely to have more. 

Any advice would be appreciated-how do I relax and not think about it?

Uhura

Posted 12/4/2005 9:50 PM (GMT 0)
Yesterday, I talked with my principal at the book fair at school. She asked how I was doing, if the sz's had stopped, etc. I told her yes, she said that I didn't look very happy, and I commented, "I'm just waiting for the other shoe to drop." In retrospect, that's how I've felt for 32 years -- I'm continuously waiting for that seizure to break through the meds -- the other shoe to drop. Anyone else feel that way?
Posted 12/5/2005 1:25 AM (GMT 0)
It's like having this fear in the back of your mind as you go along with life. This fear, this waiting for a seizure, is just there existing. I guess the best we can do is focus on the present, not fear of things in the future. It's not easy but it is possible (I can do it when my seizes are controlled for long enough that I stop being afraid of them. So I know it is possible. It's when the seizures are frequent that I am more likely to have that fear in the back of my mind.) So yes, you've got company in feeling that way.

Uhura

Post Edited (Uhura) : 12/4/2005 9:07:50 PM (GMT-7)

Posted 9/25/2006 10:04 PM (GMT 0)

sad  HI,  I had my first seizure on August 5th of this year. As a result of the seizure, I broke my lower orbital ridge, had a maxillary sinus bleed and clot...and basically looked like someone sucker-punched me in the left eye, cheek, and my nose.  I was started on meds in the hospital after they figured out it was a seizure (after EEG). I was initially on Tripletal and was free of seizures.  I have since been changed to Lamictal and have had 2 seizures, the last occuring on Saturday morning, requiring another ambulance ride and more medications.  I can tell you that I think about seizures ALL the time.  I was doing really well until I had the second seizure and then the thought came into my head, "It wasn't just a one time thing."

I am a nurse.  I know that it MOST CERTAINLY can be a one time thing.  It takes a while to get your meds adjusted and to get your body adjusted.  I too have anxiety which is another thing I don't have under control yet.  I think the doctors don't want me on an antianxiety med for fear of addiction.  Have they had anxiety attacks? is my question for them.  Anxiety can precipitate seizures.  Keep that in mind!

One thing I know is that your doctors need to be on the same page.  WHen I was in the hospital I had an attending (who is not my PCP), cardiologist, neurologist, ENT, opthamologist.  I had to follow up with all of them after discharge but none of them wanted to do anything about my concerns.  I call it "passing the buck."  My PCP, who never saw me in the hospital because he did not have privileges there was the first one to say, "we all need to get in sync here and make some decisions." 

Make your doctors listen.  Talk to someone like a therapist or anyone who will listen without judgement but will help you make your decisions without fear. 

I'll see my neurologist on Friday.  Hopefully I will learn something new to stop these seizures.  Here's hoping!

Post Edited (JoJoHappy1) : 9/25/2006 4:07:34 PM (GMT-6)

Posted 9/26/2006 1:06 AM (GMT 0)
I am very lucky I got epilepsy as child and my father and my childhood nuero ,who saw as a favor to his ex nurse never let me feel sorry for myself or live in fear of the next sz. Even when I lost control of my szs, on my good days I went out and lived and enjoyed the moment. I let nothing stop me.

I have had szs on the NYC train at rush hour and the next day my dad told I had to go back on that train, or I would live in fear . 18 yrs later ( I am now living in Mtl ,Canada) I had a grand mal in the shower after swimming and I was a mess, the lifeguards took me home and said I could come back. The next day I came back because of my black eye I couldn't do laps, but I used the kicked board. Everyone understood I had to get right back in the pool, or fear would overtake me.

When I was diagnosed with epilepsy at 11 yrs old I was taught epilepsy was not excuse . It was the toughest,best gift a Dr can give you. My dad reinforced it,had my mother had her way she would have babied me. But she was afarid of the Dr. So I lived and I travelled and I had set backs but I picked myself and restarted.

When I returned to NYC and saw the top epileptoligists I was saddened because I knew they didn't have it them to teach their patients what my childhood Dr taught me for all their expertise they were losers. I would never want them near someone who just got diagnosed because they didn't have that gift of empowereing their patients.

I was a true challenge to them. Empower yourself and enjoy the moment, let go of the fear, you only have today, tomorrow will take care of itself. No one can give you back lost time. So cherish the good days by enjoying the moment by doing something you like to do. Don't let fear overcome you!! You are not epilepsy.
You are a person who has epilepsy. Attitude is everything!!!!!


Positve Person
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