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wow, i have almost the exact story...
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tncabell posted:
I had my first seizure at age 27. i am now 28. i am a female, so every doctor i saw assumed i was pregnant because i was newly married. i knew i wasnt. i was not placed on medication until my second seizure. i was placed on keppra 500 mg twice a day. i started having periods of time that would last up to 2 weeks where i couldnt remember things, it was like i was drunk, but i wasnt. i was sent to an endocrine dr because i was told it wasnt neurological, it was a low blood sugar thing. i went to this dr who ran all these tests and while i did suffer from low blood sugar i was still having seizures, even with my sugars under control. so he sent me back to the neurologist. every 2 weeks i would go into this "drunk-like" state and then have a grand mal (tonic-clonic) seizure and then i would be my normal self for a couple of weeks and the cycle repeats. my neurologist put me on lamicatal xr starting at 50mg and moving up to 200mg. once i got to 200mg i was to stop the keppra which was now at 1000mg twice a day. (this is now a year later and no answers) two days into 200mg of lamictal and no keppra i had the worst seizure ever. my dr believes it was a complex partial that went into a grand mal. i went back on keppra. my neurologist did the 6th EEG and it actually came up abnormal indicating epilepsy. (all other eegs came back normal, even a 48 hr medication withdrawal one) so i was sent to an epilepsy specialist. he wants to put me into a seizure to see where in the brain it comes from and which medication will then be the best. also i need to see a neuropsychiatrist for my anxiety disorder that is seizure induced. i get bad anxiety after a seizure that will last for a week where i am so afraid to be left alone. and i need to see a neuropsychologist who will do memory games and tests because i have severe short term memory loss. my license was not taken away legally but my doctor said i cant drive. i just wanted to reply because i had never read about another 27 year old who just developed seizures out of no where. my poor husband is so stressed and scared to leave me alone. i cant work right now. my last seizure was so bad that i actually think it messed up my husband mentally. as i see these other dr.'s and get more testing done i will update.

Jenn
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dancer86442 responded:
Hello Jenn,

Welcome to Epland,

I apologize for not answering sooner. But, here I am. :) Are you speaking of my Profile story? Cuz, I Was 27 when mine appeared. And in a sense they were 'out of nowhere'. I learned YRS later, that I actually had seizures as a babe/toddler, also. My Daughters' seizures also, 'came out of nowhere', at age 27. Or so it seemed. But, w/ tests/ Family History Her DRS Did determine hers were 'Hereditary'.

DRs never took my license, either. :) But, until my seizures were controlled for over a YR I had No Desire to Drive. (Over 10 yrs later) I was horrified that My Sis still drove, w/ my nieces in the car. :( I had never seen a seizure, but, the aftermath of a few seizures was enough to convince me. So, Kudos to you for refraining to drive, even though you still have your license. :)

How long have you been on your Present Dose of Keppra? Has it been Longer than 6 weeks? I think it's Great that your seeing a Neuropsych, also. I wish, even though it probably ain't necessary, that All PPL w/ EP see a Psych. It would Help them soooo much. But, it seems a Lot of PPL think if you have to see a psych, then it's something Mentally wrong & are Horrified that they need a Psych. :( You seem to be taking it all in good Faith. You seem to have a Positive Attitude & even a sense of humor after only living w/ EP for a YR. Keep up that attitude! And hopefully, your Hubby will catch up Soon. :) I know it was scary for my Hubby, at first, but, he has been w/ me for over 25 yrs now. My seizures are controlled, but, the side effects (sleep & short/long term memory) are still w/ me. :( Frustrating, at times. Aggravating, other times. But, One Day at a Time, gets me thru Life. :)

Looking forward to hearing more from you. Thanks for replying to others, too. :) Feel free to join in on any Post. :) Support/Info is Always appreciated. :)

P.S. Sure Wish I was 28. Then again, maybe not. I hadn't met Hubby yet. :)

Love Candi
 
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lilys_sissy responded:
Jenn,

Your story really hit home for me.....I began having seizures when I was 28 years old with noone to tell me why or for what reason. I have and still am having them at least twice a month (at the present time), which is the most I have had in a long time. All of the EEG's, MRI's, CT's I have had have all came back normal. This is 7 years of testing. I have seen a total of 10 different neurologist, and 8 different OB-GYN's. The seizures that I expereince are all localized to the right side of my body, and also center around my menstrual cycles. I have been on AED's, been taken off of AED's by the neuro's, then my family physician will but me back on them because he cant stand to see me "flop like a fish" all the time. ( That is our inside joke) Sometimes I feel like if I dont laugh I might cry. I still drive although I prob shouldnt, but I feel as if I have to keep living.

When I first got sick, I lost my memory and my mom had to teach me even the simpliest things. That had to be the most frustrating thing for me. I am currently in the process of trying to change meds.....the doc is trying to take me off of Neurontin (which I am on 3400mg a day) and has put me on Keppra 500 twice a day along with Zonegran 600 at bed time. Its all I can do sometimes to function.

Please keep me posted on how you are doing.

Best Wishes and God Bless.

Jeana
 
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lilys_sissy replied to dancer86442's response:
Candi....

I have read your story and your family history sounds a lot like mine. I have been diagnoised with Catamenial Seziures. Although all the so called test come back "normal" and the neuro's think that I am the crazy one.....I still have seizures that center around my menstrual cycle. These forums have really helped me a lot to realize I am not alone in this.

I am currently facing trying to go thru a medicine change right before a cycle and guess what....it is not working....so we have backed off on that.....so now for the time being I am on three different EP meds.....2400mg Neurontin, 600mg Zonegran and 500mg Keppra twice a day. Makes me tired just typing it. I would really like to keep in touch and know how others deal with every day life......hope to hear back from you soon.

Jeana
 
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dancer86442 replied to lilys_sissy's response:
Hi Jeana,

My daughters name is spelled the same w/ 2 N's. :) Pronounced "gina". :)

Honey, you can stay in touch as Long as you Want. :) I'll be 'listening'. :) You got questions or just wanna rant/rave. I'm here. You want to talk w/ Others, show your support. Go for It! :) ;)

As far as your DRS are concerned. Did you know that most Neuros 'specialize' in other Brain problems? Sleep disorders, tumours, cysts, etc. Epilepsy is just a 'side line' to them. So, don't let them get ya down. Seek Another Opinion, if/when ya can. :) Search for an Epileptologist in your State. Visit Epilepsytalk.com for a list of DRS recommended by others' w/ EP. :) And Most Important: Keep up w/ your Journal. That in itself will contain a Lot of Proof your DRS Need! :)

Lots of Hugs!

Love Candi
 
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lilys_sissy replied to dancer86442's response:
Candi,

I have learned a long time ago not to let the neuro's get me down. BTW my name is also pronounced "gina".....ironic huh..... :)

I have seen an epileptologist in my area.....and she took me off all my meds and said there was nothing wrong with me.....and I had seizures for a solid month.....until my family physician put me back on my current meds and got me back on track. I was almost one year seizure free till they started again. Sometimes I dont understand....but unfortunately it has become a part of my life. I do still work, when I can hold down a job. Right now I have the best bosses in the world that totally understand the situation.

It is great talking with you.

Love,

Jeana
 
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dancer86442 replied to lilys_sissy's response:
Good Morning Jeana,

:) Very Ironic. She was dxed at age 27, also. Is now 40 & controlled w/ Topamax & Lyrica.

Have you ever considered having someone record your 'episodes'? On video Cam, phone cam? or w/ a Baby monitor w/ cam/sound?

Another solution: If you can afford it is to seek a Homeopathic MD. Unfortunately they aren't covered by insurance. My Mom & Sis charged their visits on Credit Card & then declared 'bankruptcy'. ;)

It's Good that you have been able to work. My last job was 5? yrs ago. The Longest I had Ever worked Anywhere. 14 mths. I was Fired for 'insubordination'. I had a mood swing thanks to my manager, who had only been there a few mths. She left me working w/ no breaks. I didn't know my meds caused 'mood swings'. Until that same Day. The EFA had an article about it. I had always assumed my previous episodes, just meant I hadn't slept Good. :( When working full or part time it is Mandatory that you have a break every 2 hrs for part time or 30 min for full time. But, unemployment judge ruled w/ the Manager cuz, I Snapped & Yelled/screamed at the woman for not giving me my money back on something I had bought. I called her a 'Witch' & got my money back after she left, from the assistant Manager. I got a Nasty letter from the corporation claiming they would never hire me again. :( I've not put in an application anywhere, since. It was a Really 'humiliating' experience. I Never Yell in Public. :( And, 'yelling,' in anger, in the store, was against Company Policy. So, now I babysit one of my Kids' kid. :) Someday, maybe I'll work a Real job, again. Ok, enough of my ramblin. :) You have a Good Day. :)

Love Candi


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