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kcarlson
New Member


Date Joined Apr 2005
Total Posts : 4
   Posted 4/28/2005 2:06 PM (GMT -7)   
Hi Folks.. my name is Kat.
 
I don't have epilepsy, and have never had so much as a twitch in my life, but I'm here because my partner began having seizures (or perhaps I should call them convulsions) about a month ago. 
 
I found this site while I was searching for any kind of information on the various diagnoses we've gotten this past month.  Our first visit to the ER (after a couple weeks of fainting episodes) we spent 8 hours awaiting some answers only to be told that they could find nothing physically wrong with her, and to go home with orders of rest and fluids.
 
Second visit came a week later when she started having convulsion episodes one Friday morning.  Another trip to the ER and by the time they admitted her I had lost count somewhere past 25 individual episodes.  We were admitted to neurology, and after a 24 hour EEG (plus digital video taping), we were discharged and told that it was "complicated migraine" and was prescribed Imitrex, Clonopin (sp?), & Fiorocet.  
 
Two days later, after having the records of the hospital stay reviewed by her Primary Care Physician, she was immediately taken off the Imitrex and put on Topamax (to treat seizures).  The Dr. also commented something about a "spot" on the CT scan.  I'm thinking that this just blurted out, and so now something else to worry about.
 
Over the following three weeks it's been a rocky road, with good days and bad days, but seemed to be a trend toward the better.  The convulsions became less frequent, and seemingly to me, less severe.  She even went an entire week without a single episode and returned to work both of her jobs every hour that week!  I thought we were on the road to some sort of management.
 
But, now I feel as if we're back at square one again.  I can't be with her right now as I have to be at work, but I got some trusted friends to go with her back to the hospital and I've just heard she was admitted almost immediately.  :(  The convulsions have become even more violent that ever.   Accompanied with weakness and periodic paralysis of the right side..
 
I don't know.. she's really sick and I can't be there so here I've just poured my heart out to you all.  I'm so sorry if this is cluttering up your board feel free to delete it.. It makes me feel a little better to know I'm "telling" at lease one person.
 
If you've read all the way to here in my ramblings, thank you so much.
 
 - Kat

goodwitch46
Regular Member


Date Joined Feb 2005
Total Posts : 241
   Posted 4/28/2005 5:50 PM (GMT -7)   

Hi Kat,

Welcome to HW.  I'm really sorry you have to go through so much and have all the frustration of not only your partner going thru rough times but the fact that things are just not sorted out yet.  It sounds like you just don't have any decent answers yet.  It's frightening for sure. 

You said her primary care doc was seeing her... is she also seeing a neurologist? 

Keep us updated, this is a great place for support, so come back often.  Good Luck and hang in there.       Glenda :-)


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


kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 4/28/2005 6:33 PM (GMT -7)   
Hi Kat and welcome. I am so sorry she is having seizures and they are not staying controlled. I hope that she is seeing a neurologist. Sometimes it can take a bit to find the right medication or combo for best control....


Hang in there. Support her as you have. Learn all you can.....she is lucky to have you in her life!

ShakinMommy
Regular Member


Date Joined Apr 2005
Total Posts : 29
   Posted 4/29/2005 9:49 PM (GMT -7)   
Hi Kat, I am so sorry to hear what you and your partner are going through. What a shock to you both. I am glad you have a good support system with friends, and have found this for support also. I hope you narrow down what is going on and that your partner is stabilized with meds. My best wishes go out to you both.

kcarlson
New Member


Date Joined Apr 2005
Total Posts : 4
   Posted 5/2/2005 8:36 AM (GMT -7)   
Thank you all, this is the reason I decided to post here, the positive support you all give eachother.

So, for an update we spent the weekend in the hospital. It was pretty much a deja vu of our visit last month. Blood work, EEG, CT scan and sent home with similar advice. The neurologist we saw says that her "episodes" are non-epileptic. The CT scan is clear, and as far as he can tell there's nothing wrong with her.

He suggested that her "episodes" are a manifestation of something psychological, which she had a fit about! She thinks the Dr is trying to say she's faking it, and feels foolish. :-(

I know this is an epilepsy forum, but has anyone here dealt with seizures that are not epileptic? Does seizure medication still have an effect in some cases?

I'm trying to do all the research I can on my end to try and help the Drs help her.

Any insight or opinions are welcome and appreciated.. Thank you again..

kcarlson
New Member


Date Joined Apr 2005
Total Posts : 4
   Posted 5/2/2005 11:23 AM (GMT -7)   
VEEG... where they connect the EEG machine and put the patient infront of a video camera to simultaneously compare what's physically goign on and what the brain is doing right?

Yes.. we've spent two weekends in the last month and a half in a hospital room specially set-up to record seizures both on EEG and Video.. the neurologist says that her brain activity stays consistent and normal during her "episodes"

goodwitch46
Regular Member


Date Joined Feb 2005
Total Posts : 241
   Posted 5/2/2005 11:41 AM (GMT -7)   

Kat-

Seizure Disorders are often difficult to diagnose, so don't be discouraged.  Did the doctor call them pseudo-seizures?  Whether they are non-epileptic or not, the proper diagnosis requires a close working relationship with her and her doctor.  If you and she are not satisfied with the way things are going, you have to reevaluate if you are getting the medical care she deserves. 

The is plenty of documented proof that many people with seizures have non-epileptic seizures too.  They aren't "faking" it.  So, don't be discouraged.  That's a label that people often put on others.  People with epilepsy have to deal with labels and ignorance all the time.  Research  and become knowledgable. 

DON'T GIVE UP        Glenda :-)


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

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