Feeling alone....I'm new

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hope4healing
New Member


Date Joined Jun 2005
Total Posts : 2
   Posted 6/2/2005 11:11 AM (GMT -7)   
Hello, I'm new here. My daughter was recently diagnosed with generalized epilepsy following a grand mal. She's been on several medications and will be switched again after we get an EEG confimation of that which we already know, that her current medication isn't doing anything for her.
 
I feel so alone right now. I hate it when people ask me what's wrong with her and seeing them wince when I say epilepsy. Then you have to explain to them about absence seizures, medications, side effects.......everything that seems to go hand and hand with epilepsy. I've tried slipping into denile. That didn't work very well when I looked up every so ofen and would see my daughter staring into space. Then I tried just feeling sorry myself..... doesn't work so well when your child needs you. I've tried being strong for my daughter and putting up a good front. That's really hard when you have to go find someplace to be alone and just cry.
 
Now I'm just numb. Things seemed to be so much easier when we didn't know what whas going on and lived in ignorant bliss. I know this sounds like a huge pity parade but I need to know this gets easier with time. I need to know that even if she's having over 100 petite mals a day and a grand mal a week that we'll be OK.
 
When will that happen?

kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 6/2/2005 1:54 PM (GMT -7)   
I donot think it gets easier but you do develope coping skills. SO sorry she is having so many. You will find people who understand here. I have also had THAT look when I tell others that my kids have epilepsy.


Hang in there!
Ginny

moedon1
Regular Member


Date Joined Jun 2005
Total Posts : 139
   Posted 6/2/2005 5:57 PM (GMT -7)   
Hope,

I have had epilepsy for many years now. At firts petit mal and then in 1993 i had my first grand mal. I was put on Dilantin and it seemed to work for awhile. Then out of the blue I started having multiple petit mal and grand mals. Sometimes I would have up to 20 GM's and way too many PM's to count in one week. The docs added neurontin as a back up. Things seemed to settle down quite a bit. I have not had that kind of problem since then. I occasionally have a seizure but I have gotten pretty good at figuring out when then are going to happen. Everyone is different. You need as much support as you can get as does your child. Ignore the ignorant responses. I was devasted for sometime when people would ask and I would respond by sating epilepsy. For many people the thought of a seizure conjures up what to them are scarey and unpredictable images. Simply stated it is a short circuit of the electical impulses in the brain. I wish more was done to educate the public particularly in schools so that children would grow up with the acceptance that we all need to possess to nurture one another in our world today. It may take some time to sort out what med is right btu it will happen. If you are not happy with your childs neuro change. You will need to develop a trusting relationship with that doc and your child will need to feel comfortable with them. Vent as much as you can, and give your child that opportunity to do so as well. Please don't ever not ask for support it is so crucial that you don't try to do this alone.
Keep us posted.
Hopeful and caring thoughts,
Donna
Donna


goodwitch46
Regular Member


Date Joined Feb 2005
Total Posts : 241
   Posted 6/2/2005 11:03 PM (GMT -7)   

Hope4healing-

welcome to HW.  So glad you have come here for support.   There are many people here that come for the same reasons you did.  I definitely know the feeling of denial and loneliness.   The more you can learn about epilepsy, the less you will feel burdened by it.  The more you will feel that you can help your daughter as well as yourself.  

You described it right when you said "numb" - it was hard to describe the feeling when the doctor gave me the diagnosis and then I had to deal with it.  You feel kind of frozen at first.  Maybe it's because I sensed that people looked at me funny when they learned I had epilepsy.  And I knew things were never going to be the same again. 

But what has really helped me is to talk to others.  To educate others about epilepsy.  It also helps to talk to someone you trust about your feelings and how you are dealing with things.  Like Kayakmom said- you develop coping skills.  It does make a difference.

  Be good to yourself.  Take time for YOURself.  This is difficult and you need to have energy to make it through this ordeal too.  Who cares for your daughter in addition to you?  Work together, you will be stronger when you can share the victories as well as the defeats.   What does get easier is knowing that you've made it past one more medication change, one more test, one more appointment...after a while, you start knowing the routine. 

Yes, you do need to be strong... but you need to be strong for YOU FIRST.  So you can be strong for HER.         Do what you can to reduce your own stress, eat right, get enough sleep, get HELP if you need it ( a sitter, housekeeper, whatever), have a friend help you with chores/shopping, etc.   The more you feel in control of things, the better you'll feel and can cope.   You ARE going to make it.

    ((((HUGS))))   Glenda :-)


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


whiskey girl
New Member


Date Joined Jun 2005
Total Posts : 6
   Posted 6/19/2005 6:52 PM (GMT -7)   
Speaking for myself, I know how I feel today after my parents mostly my dad were and are in complete denial of my condition.  I was diagnosed with petit mal seizures at 14 and am now 34 and it wasn't until just recently I actually started telling people...maybe I would have been a little braver if I'd had better support from my parents, that's what I wanted most...my mom talked of it occasionally when she fealt she had to and my dad was and is completely ignorant to it, to this day...it is very difficult...if your own parents cannot support you, how are we supposed to be able to find support in a friend, we end up living in secrecy feeling something is wrong with us, when in fact it could be much worse....there is always someone worse off...it's a big vicious cycle, because our parents couldn't handle it or learn how to deal with it, we end up suffering and feeling,...too many emotions to describe
 
whiskey girl
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