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Epilepsy Community

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hula_dancer73

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The hospital pulled my RN liscence and the drivers liscence was revoked but I managed to get it back to use for insurance purposes ONLY!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

Mahola,

Nancy

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Candi I posted and it gave me the is not working thing and it has lost my post, but I...

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I had a bad experience with Depakote. IT made me toxic so they had to remove me...

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don't feel bad about wetting the bed. I wet it until I was 16. undxd ep but we...

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They sould have waited until you had another one. 2 szs=epilepsy and so far y ou...

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Every one is different. THe dose may be coorect for you depending on you szs and sz...

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Reply: How can you make a denying epilepsy patient start ...

I would continue to be pushy to him to take his meds. HE is not healthy and DOES need...

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hi candi adn anon, I have szs when exposed to Latex paint. Iamallergic to latex...

Posted by hula_dancer73

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Reply: vimpat

hi candi, The szs started up 2 days ago and so have the he adaches from the lack of...

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Reply: Seizures

when it comes to trying to get SSI or SSDI you have to have EVERY card of every...

Posted by hula_dancer73

when it comes to trying to get SSI or SSDI you have to have EVERY card of every doctor that has a phone # and address. You haveto have EVERYTHING and procedure dociumented on a day book or calandar and an explaniton for everything. Even the possible procedures that may be possible have to be brought up.

THey DO CALL all the docs on the papers and cards you give them to verify eveyrhing to gave them. TTHey check with them about the dates you gave them about the procedured and events to make sure you are truthful (dome people are not and try to fleece the system).

sometimes it can take up to 6 months to hear back from them. You need to knwo that htey deal with hundreds of people a day at least if not more,

When I lived in PHX I sat in the SSI office with about 75 or more people in ther and more coming thru the doors for 2 hrs and 45 minutes. FOtunalty for me I had my day book half the cards I needed and my mom had all the rest of it.

THis was in Jan of 2003 and in June I got the back payments that s tarted in Jan of that same year and it was a good hunk of money.

To this day I stioll get SSDI and will for the rest of my life even though I am married.

I am glad I got it when I did cause HI has things just a little bit diffeerent and I had to have all that same info to give to them when applying with them, but I also had to have different docs except for my neurologist my TMJ specialst, I fly back to the mainland for those 2.

But itcan take a while tothear from them, and sometimes they can decline you as well making it difficult to appeal for a second try. I have several other frends with ep and they were disgusted with that whole system.

Candi is correct with the DES stuff. when I lived in PHX I got food stamps through them. I do not havethem in HI anymore. I plain just did not go there again. We can afford the food.

I Wish you the very best of luck wuith your voyage with the SSI system.

It can be hard sometimes....I have been there and done that and it can be NO fun, especailly while waiting to hear. Like I said it took 6 months before I heard back. So it may just take some time.

BEst wishes.

NAncy

I live in HI on O'ahu in the Wiakiki area of downtown Honolulu.View Thread

Posted byhula_dancer73

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vimpat

I already wore out something aobut this but it is nowherei nsite on here so i am...

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