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Joined: 01/28/2012
My Story:
Aloha every one. My name is Nancy.

I am going to start over with the story. Alot has changed since I first posted 8 years ago.

I have one child named Gretchen and she is almost 17 and is a junior in HS.

I lost my youngest child to a rare form of JME (Juvenile Myoclonic Epilepsy). She had it so bad she was in and out of the EMU so many times they knew her by name.

No one could get a grip on it and she passed away almost 3 years ago. She was 13.

She would have been 15 this year. Both my kids are 2 years apart and both have epilepsy NOT given to them thru me. It just happened that way and it was a lose-lose situation for everyone in my family.

So Jasyn took a job in Hawi'i and is a pediatrician in the ER at Straub Hospital.

I had to give up my job when my szs got out of hand and I was a high risk for helping people in the EMU as an RN.

The hospital pulled my RN liscence and the drivers liscence was revoked but I managed to get it back to use for insurance purposes ONLY!

I used to live in Phoenix for several years where my mom is located and we moved to HI. We started out on Maui did not like it so we went to O'hau and love it on this island. Gretchen has Grand Mal szs I have TLszs in my left Temporal Lobe--3 lesions that coulfd not be removed too close to valuable structures, so they implanted the VNS on Sept 20 of 07. I was replaced on Aug 25 of 10. This one passed the 2 year mark and hope it will stay running past 3 years. IT has helped me a great lot.

I went from 10-12 szs a day almost everyday to 3-4 a month.

I take for meds 3 mgs of Klonopin, 600 mgs of Lamictal, and 600 mgs of Vimpat that just got cut in half to 300 mgs so he can lower it to put me on something else while i am still taking the Vimpat something that is called Cross-titrating.

The Vimpat got cut again and am now taking 200 mgs of it and he added Topamax to it and will slowly increase to 200 mgs where he will maintain it.

I am 39 years old and Jasyn is 44.

We met in the same hospital we dated for a year before we got married and have been married for almost 18 years.

In 03 I was dxd with Epilepsy only having had 2 Sleep-deprived EEGs the first one showed alot of abnormal activity but the seoncd opne was worse than the first one, so I was referred to an epliptologist adn than was completely futile becuase he said I was faking it. NOT TRUE! I can not tell you how many EEGs I have had that have come back abnormal. All of them except for the last 2.

The reports dame back to the neuro that I have now for alost 6 years and he was MAD! THe records said htat they were inconclusive adb made my current neuro MAD. So he ran his own testing on me nad put me in his EMU, and I had 2 s taring spells and 3 CPS that all had to be stopped with IV ativan.

I still can not go 2 weeks without having auras some strong and some that I barely feel.

I fly back to the mainland to my Neurologist and my TMJ doctor, other wise I have all new docs here in HI.

We live in West Honolulu. I finshed college in 03 in Aug before the VNS. I have a degree in Health Care Related Services. with a minor in Psychology.

I am going to be taking classes this summer at the West Honolulu branch of UH with classes that parralel the RN classes that deal with neuro science. it is a 6 year program.

we shall see.

I lke to use the ineternet, read, watch TV (ALOT), play with my puppy named lulu, listen to msuic , mainly country, Hawiian msic amd Cajun music.

I like to cook Cajun food and am learning how to make Hawiian dishes. That is something fun to do.

if something else comes up I will add it to this and take some stuff out to make it fit.



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Reply: Have you been triggered by flashing lights?
yes I have whe ni was really sick and had mu ltiple types and even the strobe lights...More
Posted by hula_dancer73

For more information, visit the Duke Health Epilepsy Center