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babybear
New Member


Date Joined Jan 2006
Total Posts : 15
   Posted 1/25/2006 6:52 PM (GMT -7)   
Just wanted to poke my head in and introduce myself.  I'm new to the site and realitivly new to epilepsy.  I really hope that I can make some friends and be as helpful as I hope that you can be to me.
 
Thanks and loking forward to meeting yall

Uhura
Regular Member


Date Joined Nov 2005
Total Posts : 166
   Posted 1/25/2006 7:24 PM (GMT -7)   
HI!  You'll get a lot of different experiences to read about from different people here.  It's a good place.
 
Uhura

babybear
New Member


Date Joined Jan 2006
Total Posts : 15
   Posted 1/26/2006 12:38 AM (GMT -7)   

Thankyou for deleating the double post.  I appreciate it.

I am on a ton of meds.  I am also Bi-Polar so there is a pretty good mix here.  I takeTegretol, Neurontin, Dilantin, Depakote, Serequel, Klonipin, Abilify and Prozac.  We have bounced around all year (I was just finally dxed this past Jan.) trying to find a good combo.  I guess we're still working on it.  I'm down to about 1 seizure very 5 or 6 days and I know that sounds like a lot, but for me that has been great.

I didn't have seizures as a child, I had several repeated injuries over a period of time from 17 to 21.  And we started to see the effects of that slowly over the last few years.  Finally the beginning of last year, I had a terrible migraine and fell and that set off a very, very long year.  We didn't know at first that I was having seizures, I've never had insurance, My husband and I just thought that I having bad migraines and fainting.  No one ever saw me fall, they would just find me there on the floor.  And I could never remember anything, so we never thought anything serious.  They would just put me to bed and that was it.  But starting last year I was seizing a lot, several times a week and finally we decidied that it had gone too far.  And it wasn't just the falling.  It was/is the weird things trhat I would do before I fell, like I was/am drunk or something.

So ANYWAY-I ramble a lot, sorry.  The last year we have been working on finding the right med combo for me.  And every time I fall, I hit my head and that sets off a rough a day for me.  I don't know that it is coming, I don't remember things before or after, so it's hard to gage when they are coming.  My neurologist talked to me last week about sending me to a clinic in KC where they will strip my meds for a few days and moniter me.  But we have to wait to see whether or not I get disability or not. (again, no insurance) I have a court date in March.

At first my doctor thought that I was having partail complex ( I hope that is the right name) seizures.  But now She is beginning to lean twords grand mal because, now my family has actually witnessed me having them and I guess they can be quite violent.  I often have bumps on my head from falling and bruises in other places.  And I have pulled muscles more than once.

But whatever they're called, whatever name She gives them, I'm just ready to have my life back.  I don't drive, I can't be left alone and I carry a bag of clothes to change into if I need them.  I am also so very tired and worn out from all of the seizures and because of the meds.  I am sure that there are people who have it off a lot worse than I do.  I realize that.  And it is very selfish of me to complain when there is so much other suffering had by other people.  I guess I'm just saddened by the whole thing.

So I guess that's the long of it.  Thankyou for welcoming me, and thanks again for deleating the double post. :) -bb


Beth B. in TN
Regular Member


Date Joined Oct 2005
Total Posts : 83
   Posted 1/26/2006 6:53 AM (GMT -7)   

Welcome babybear.

My daughter has complex partial seizures. We wish you well. I'll be praying the disability goes through so you have options for help. Keep us informed.

 

Beth B. in TN


coffee 'n cigs
Regular Member


Date Joined Jan 2006
Total Posts : 69
   Posted 1/26/2006 10:06 AM (GMT -7)   

God bless you, babybear. Please don't feel that you are complaining. We are here to share our fears and frustrations, as well as any practical information we might have.

Take care.


babybear
New Member


Date Joined Jan 2006
Total Posts : 15
   Posted 1/26/2006 8:24 PM (GMT -7)   

Thanyou guys so much for your warm welcome.  I can't begin to tell you what it means to me.

 

There has been a little talk about a helmet, but it never went further than that.  I will look into it, if only to wear at home alone.  I haven't been wanting to get one.  I guess part of it is that then I really have to admitt that something is truely wrong with me.  You know what I mean?  It's been kind of hard to accept on top of everything else.

Thanks again for your support.  I feel very accepted.  Thankyou-bb


Valour
New Member


Date Joined Jan 2006
Total Posts : 10
   Posted 1/27/2006 9:10 AM (GMT -7)   
Hi Babybear!
Welcome and all the best to you. I myself just re-joined the site(our computer crashed) and it is wonderful.People here truly care and understand Epilepsy and its side effects etc. I do understand how truly awful it feels to feel like you have no control over your body and to want your life back the way it was. I was 35 hen dx and it has been almost 2 yrs now and nothing has worked so far. Talk talk talk. To your doctors, your Neurologists, etc....ask QUESTIONS!!! And never give up.....we are all here to support you to. And yes, as other have said please be careful of the head injuries. Also keep a diary of your seizures when they happen etc, type, keep diary of any strange things occuring no matter what they are! and watch for patterns...also this is great info to give to your Neuro. all the best and take care!
Sheena tongue
Sheena
Somebody said...
(replace this text with what was said)
Semper Ubi Sub Ubi


babybear
New Member


Date Joined Jan 2006
Total Posts : 15
   Posted 1/27/2006 12:26 PM (GMT -7)   

Thankyou Sheena!  A journal is a great idea.  I will start doing that.

Before I was dxed I was pretty meek.  Never said anything about anythng and nevr went to the doctor's.  But over this last year I have been humbled and now am able to ask for help when I can.  As weak as it as made me physically, I think that mentally I have grown.  Weird how things like this can do this to you.

-bb


Uhura
Regular Member


Date Joined Nov 2005
Total Posts : 166
   Posted 1/28/2006 10:37 AM (GMT -7)   
Trials do make us grow emotionally and spiritually and teach us to ask for help.
 
Uhura
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