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epileptic_Cajun
Regular Member


Date Joined Dec 2004
Total Posts : 45
   Posted 2/25/2005 1:10 PM (GMT -7)   
I may have posted about this, before, but I can't remember, so I am doing it possibly again.

DO any of you have an epileptic syndrome called JAE or Juvenile Absence Epilepsy?

It is related to Childhood Absence EPilepsy and Juvenile Myolconic Epilepsy. It falls in between for severity.

Its main seizure type is the Absence and 90% of people also have TCs, which I do.

It is lifelong, and is genetic and is on a gene locus.

Can't go off my meds, and is supposedly controllable, and mine hasn't been, but that may be in part due to my other seizures going on.

Nancy
31 years old--born with epilepsy--undiagnosed for 30 years. Suffered bad abuse by dad causing repeated head injuries, 3 brain infections, 4 severe concussions, and scarring on the mesial surface of the LTL.

Initially diagnosed in April 2003, was confirmed on March 9, 2004, after a 9-day stay in the EMU.

Diagnosed with a sub-type of TLE called Mesial Temporal Lobe Epilepsy Syndrome with Amygdala-Hippocampal seizures.

Epileptic auras, Simple Partial, Complex Partial and Secondarily Generalized Tonic-Clonic seizures.

Diagnosed with JAE (Juvenile Absence Epilepsy)--produces Absences as main seizure type, and Primary Generalized TCs.

Born with Myoclonic seizures as a result of birth mother drinking, smoking, doing hard drugs, painkillers etc. Went through drug withdrawal just after birth, and the seizures stayed with me.

Have failed 7 other drugs.

Taking Depakote-1250 mgs and Neurontin--3600 mgs

--TAKE WHAT YOU CAN DO AND DO YOUR BEST WITH IT!!!!


c.michele
Regular Member


Date Joined Feb 2005
Total Posts : 32
   Posted 2/27/2005 5:31 PM (GMT -7)   
Hi,
As I read your past family hx I couldn't help but feel your pain. My daughter works in a hosp. which has a neonatal unit and sees newborns go thru withdrawal...it's heart wrenching. She called me the first time she saw twins going thru it, she was so shook up she couldn't stop crying and yelling "how can someone do this". You had a rough start in life but seem to have gotten past it..because you can be so frank about it. I wonder do you have a good support system around you now?

Keep pressing on!!!
cm

epileptic_Cajun
Regular Member


Date Joined Dec 2004
Total Posts : 45
   Posted 2/28/2005 12:23 PM (GMT -7)   
I have a good support system for what I have.

I was adopted at 3 months, and have only ever known the two I ahve today.

My dad's whole side of the family have never been anything good to me, in any way.

They laughed at me for things, they told me I "wasn't a real kid", because I was adopted, and thus was treated like something second-rate, they told me I was mental, bizarre, different, and had some kind of behavior disorder. THe behavior was from the undiagnosed, untreated epilepsy we didn't know about.

THey called me names, made me believe I was stupid because I am part Native AMerican "stupid Injun", they'd tell me. They told me I was worthless, dumb, won't have any fridns because they won't want someone like me, etc.

I have asked that side of the family to leave me alone, and even wrote a letter that my psychologist wrote with me. I ahve been harrassed ever since by my dad, his wife, and his parents for it since last April.

THere obvioulsy was alot more than that.

When my mom called the family to tell them about my diagnoses last MArch, my dad told my mom it was an anomaly all in my head, just like ev erything else I have ever had in my life (little does HE know that you can't dream up epilepsy), among other nasty things. His stupid mother sent a card saying that she is sorry to hear about all my behavior and mental problems.....DUMB. IT isn't either of those things.

Then my mom's brother told her we can't stay in his house ever again as long as I have seizures, because I am a liability risk, an incovenience, and ambarrassment, and will make him look bad. THis was right before we flew to Michigan last July for my cousin's wedding, which made us have to find a place to stay adn fast. So my mom called her sister who was away in Europe on her cell phone, adn she told her you know the combon on the garage door help yourself, and we stayed there for 5 days, ebfore she got back. That is real family. THen my mom's other sister supports me all the time, and I can have talks of any kind on any subject matter on-line or the phone, adn she doesn't say anything. So I have someone I can confide in. Then I ahev my brother and his wife, but my brother has strong ties to my dad, adn everything that gets said at this ends usually winds up being repeated to my dad, but other than that, my brother is a good support system.

But, that is half of my family that walked when this was made known.

I have several e support group sites and a boyfriebnd in TX, but that is basically it.

Nancy

I can talk about the the way I do, because I have moved on and have been in and out of counseling since I was 9 for the domestic stuff. Now, for the last year to deal with epilepsy
31 years old--born with epilepsy--undiagnosed for 30 years. Suffered bad abuse by dad causing repeated head injuries, 3 brain infections, 4 severe concussions, and scarring on the mesial surface of the LTL.

Initially diagnosed in April 2003, was confirmed on March 9, 2004, after a 9-day stay in the EMU.

Diagnosed with a sub-type of TLE called Mesial Temporal Lobe Epilepsy Syndrome with Amygdala-Hippocampal seizures.

Epileptic auras, Simple Partial, Complex Partial and Secondarily Generalized Tonic-Clonic seizures.

Diagnosed with JAE (Juvenile Absence Epilepsy)--produces Absences as main seizure type, and Primary Generalized TCs.

Born with Myoclonic seizures as a result of birth mother drinking, smoking, doing hard drugs, painkillers etc. Went through drug withdrawal just after birth, and the seizures stayed with me.

Have failed 7 other drugs.

Taking Depakote-1250 mgs and Neurontin--3600 mgs

--TAKE WHAT YOU CAN DO AND DO YOUR BEST WITH IT!!!!


mercyme
Regular Member


Date Joined Feb 2005
Total Posts : 310
   Posted 2/28/2005 4:38 PM (GMT -7)   
was just wondering if you knew of anyone else that comes here that has had epilepsy brain surgery. if you do please post it for me and let me know. I hope all goes well in your treatment with epilepsy.

Many Blessings,

Cindy/mercyme

c.michele
Regular Member


Date Joined Feb 2005
Total Posts : 32
   Posted 2/28/2005 6:04 PM (GMT -7)   
Hi Nancy,
I'm glad to hear you have others around you that care....it can make all the difference in the world. We can't change the opinions or misconceptions that others have about us, but we can control how it affects us.
Thanks for sharing
cm
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