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dancer86442

Joined: 02/05/2010
My Story:
candi_phelps@yahoo.com I was diagnosed w/ Epilepsy in 1977. I came to WebMD in 1993 & joined the Epilepsy Boards, searching for answers about a new Drug (Felbatol) for seizures that had been recalled. Bone Cancer. (2009 Research found this side effect to be rare)

Age 42, I received my 'Baby Book' & was surprised to see 'convulsions' on the inner cover. I was taken to the hospital, but, was left untreated. My Aunt witnessed 2 more, but, did not report them to my Mom. My 'convulsions' went into remission.

I joined the Air Force in 1977 & 3 weeks into basic training had, what I thought, was my first adult seizure/convulsion. It was, actually, my second w/in mths. My 5 yr old daughter witnessed the first. I had suffered a head blow at the time. I was booted out of the AF after 3 weeks in the hospital. I have no clue WHY they kept me that long. But, I was released from the AF the same day my squad graduated Basic. I CRIED. They gave me a mth's supply of AED's & sent me on my way. I was so ignorant. I thought I was 'cured' when my meds ran out.

I went to work at a 'summer camp'. But, my seizures were still happening. The only witness, again, was my daughter. But, neither of us knew what to do about it. At the end of the summer I left my Daughter w/ her Dad & ran. From Tx. to Maine. When I reached my destination I went on the radio & told my story. I was taken in by a couple & given a place to live. I pretty much just 'wallowed' in grief over my situation. I returned to Tx 3 weeks later. I became a 'Nanny' for a GF. I was still not on meds & seizures still happening. Not often, though. When I woke up on GF's bathroom floor w/ blood all over me, from a gash below my eyebrow, I finally 'came out of 'denial'. I went to the County Hospital & was placed on another med. I went thru at least 5 'trial & errors' over the next 10 yrs.

In 1986, Drs tried Phenobarbitol's. Over the mths they increased my dose. Then, I realized I was PG & they decreased the amount. After my son was born, my medication was raised to 180mg. Except for a few 'breakthru' seizures over the yrs I have been 'seizure free'.

In 1993, I was tired of being 'tired' & asked for something new. I was given Felbatol. After 3 weeks I was 'energized & happy'. The med was recalled. Back to Pheno's, sleeping & a bout of deep depression. I overcame the 'deep depression' w/ phone therapy. Plus, getting, giving support/info on WebMD. I still have 'mild' depression. But, have learned to live w/ it. Again, Thanks to the good ppl/members of WebMD Epilepsy Boards & Facebook.


2007: Portable EEG Results. Continuous Wavy Line Syndrome. Seizures w/ no activity while I am asleep. Rare & Usually found in Children. So, have I had this since Childhood? Who Knows? :(

I have always believed my seizures to be 'hereditary'. My Sister, a cousin (outgrew his), me & now, my daughter. But, my daughter is the only one to be confirmed w/ 'hereditary Ep'. My Sister refused medications for over 30 yrs. Her seizures are now under control w/ diet & 'natural' hormone. 2013: Now on 'natural' estrogen. My daughter: Her seizures started as Left Temporal Lobe & have progressed. 2010: they now affect her whole brain. Changed to Lyrica. Seizure Control 2011 2013 re-added Topamax for weight control.

Sept 2010: Mom diagnosed w/ Petit Mal seizures. :( Age 79) Update: Due to Mercury Poisoning. Detoxed/Now on a healthy Diet/Juicies. 2010. Brother diagnosed w/ Hepatitis followed by 2011 Seizure activity. Pending More Info. :(

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Reply: I just need to vent.
Hello gardensparrow, Welcome to our Community. I would Love to hear More from you. ...More
Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
Posted by dancer86442
Reply: I just need to vent.
Hi Meg, I guess the venting Did help some. You bounce back Fast. I don't think...More
Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
Posted by dancer86442
Reply: VNS replacement
I just read some Info about this. Seems cannabis seeds (what the cannabidoil is made...More
Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
Posted by dancer86442
Reply: I just need to vent.
Hi Meghan, I'm always willing to 'listen'. And I can Relate. A Lot! Just make the...More
Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
Posted by dancer86442
Reply: doctors that play god with epileptics and how to s...
Good Morning Ken, Thank You for replying. After re-reading your 'god' statement I can...More
Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
Posted by dancer86442
Reply: VNS replacement
Nancy, If I remember correctly the RNS only sits on the brain. They may be able to...More
Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
Posted by dancer86442
Reply: Pregnant and a seizure?
Hello hphilips, Welcome to our Community AKA Epland. Thank You for joining us. Go...More
Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
Posted by dancer86442
Reply: epileptic
Your Dr is a quack. No Good. What does he Specialize in??? Becuz, He Lied! There is no...More
Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
Posted by dancer86442
Reply: VNS replacement
Wow! Sounds like you are going to be up to your ears in Dr rounds/medical procedures. I...More
Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
Posted by dancer86442
Reply: doctors that play god with epileptics and how to s...
BTW: Did you know that Drs (or rather very few Drs) don't even Know All the side...More
Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
Posted by dancer86442

For more information, visit the Duke Health Epilepsy Center