Been lost for a while

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AmandaJane
Regular Member


Date Joined Feb 2005
Total Posts : 30
   Posted 11/28/2005 4:45 PM (GMT -7)   
Hello everyone.  I hope you're all doing well.  I'm not today.  You know how those days are...there's nothing really wrong, but the world is crashing all around you.
I'll tell you a bit about myself, because sometimes it's nice to know you're not the only one in the world who feels this way. 
My name is Amanda.  I've been having partial seizures for about 20 years now???  I had my first grand mal seizure in October of 2003.  I have been receiving medical attention since May of '04.  My meds are Lamictal and Zoloft.  I hate taking the medicine because it tastes horrible.  I can't keep on a schedule.  I will go days at a time without taking it, not on purpose, but because I get caught up in life.
Why am I writing this today?  Because I feel like total strangers are the only ones who won't judge me.  Yes, my fiancee is incredible, but it can be very overwhelming and confusing for him to understand the emotions.  Friends are great too, but no one understands what I go through.  They think it is possible to just stop feeling miserable.  "You have to think yourself happy,"  That doesn't always work. 
I want to see a seizure.  I want to know what my fiancee sees when I fall out.  I want to see what my body and mind go through during these times. 
DOES ANYONE KNOW WHERE I CAN FIND VIDEO OF A GRAND MAL SEIZURE???
I might be getting ready to lose my medical coverage because of inaddequacies on my part.  I'm feeling pretty low and worthless right now.  I can't do anything right.
I know these are normal feelings but I don't want them to be.  I miss being "normal".  I miss going to live music venues (strobe lights).  I am feeling lower than I have in a long time and just want to vent it out.
Thank you for letting that happen here.  Jen, thank you for being here and supporting all of us.  I hope we are there for you when you need it also.  Sometimes, when things get so bad, I have to stop and remember that there are people in this world who have things a lot tougher than I do.  Then I get angry because I am taking away my right to feel bad.
By the way, I have also been diagnosed as Bi-Polar.  Can you tell?
Thanks again for letting me vent all of this here.  It's a lot of babble, but it feels good.
 
Peace, Love and Happiness
AmandaJane


Beth B. in TN
Regular Member


Date Joined Oct 2005
Total Posts : 83
   Posted 11/28/2005 5:35 PM (GMT -7)   
HUGS! I'm just a concerned mommie. Please take care of yourself dear. YOU ARE WORTH IT! I can only tell you you are loved. Put one alarm clock on your purse and one on your wrist. Another in your bedroom. We have so many alarms around here, everyone is rushing to turn them off.

goodwitch46
Regular Member


Date Joined Feb 2005
Total Posts : 241
   Posted 11/29/2005 11:43 AM (GMT -7)   

Hi Amanda-

So GLAD you came to vent.  You need to get it out and share sometimes.  I was nodding my head while I was reading your post as I agree with you about your feelings .  I had epilepsy surgery nearly 6 months ago and this is the first time in almost 25 years I feel I have some hope.  

My loved ones still say the same things as before -"just be happy" , because they mean well.  If I don't feel well, they want to "help" me.  And then wonder why I don't cheer up.  I want to tell them I'll feel better when I'm good and ready.  I don't want a lecture from a loved one about how "lucky" I am that things could be a lot worse.  I give them hugs and say thank you.  I keep my feelings to myself because they don't really understand. 

You have a right to be angry, sad, miserable  and need to vent.  I feel that's why we are all here.   Seeing my own seizure on video when I had a video EEG was very sobering.  I wanted to cry at first.  It made me realize that nobody was going to take of myself but ME.  So I know taking care of myself is essential to getting better.

Do what is right for YOU, Amanda.  Come and vent anytime.   

HUGS,  Glenda  :-)    

 


complex partial seizures since 22
lamictal 200mg 2x/d
zonegran 150mg 3/d


Dayna
New Member


Date Joined Nov 2005
Total Posts : 2
   Posted 11/30/2005 5:40 PM (GMT -7)   
Hi, I am new Here today and Amanda your Post touched me.   I too have complex partials and every so often I have a  nocturnal T/C.  I have gotten to see a brief glimpse of one of my seizures, mine was not a pretty sight. I don't think I want to do that again.
 
I would like to say that this is a very nice site you have here. And I thank you Jennifer for the invite.
 
Dayna
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