speaking troubles...

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Hello everyone: I am new to this but am wondering if anyone out there is experience the same thing as myself. I was diagnosed with eplipsy last year. I am 32 now. I feel very badly for you who have had to deal with this your whole life. I have had 5 seizures so far. 4 of the 5 have been when I was sleeping. The one awake happened at work and I could feel it coming on. I was able to call for help before seizing. Occasionaly while talking I cannot finish sentences. I can't think of words or make myself say the correct words. I don't know if people notice or not. Twice I became paralyzed where I couldn't talk. I could eat, drink, and do everything physical but talk. This last 15-30 seconds. Do other people have this happen? Am I having whatever causes the seizure in my head and the medication preventing me from actually seizing? I try not to live in fear of seizures but it is hard especially when things like this happen. I always make sure I'm safe though when it does. Craig

Comments

Re: speaking troubles...

Submitted by tonialpha on Wed, 2006-12-06 - 18:06

Hi , I just came back from my neurologist today and was telling how, I needed the VNS turned on. I then couldn't talk and was spaced out, He then asked are you done. I told him yes. He said we tried all the meds and surgeries and your seizures are in your speech center. I told them I have had partial, partial-complex, generalized seizures, and cluster seizures. I have had them for over 40 years. I am finally getting used to them. He said you need to be in the hospital again. I cannot talk, at times and all people say is I stare and sometimes hug, I walk around too. I have had some funny experiences and embarassing experiences. I am in a play right now and I sing in a choir, and I teach plus, work in the health field and I have trouble with my speech. I lose it and mumble, I lump it and go on. The VNS helps me now and medication and I tell people that want to know. Sometimes medication changes increases activity for me but more likely decreases or forgetting to take my medication does it more often. I worked in a Police Dept. for 3 years and then the Neurologist said try the medical field. I like that a lot better. You will have your ups and downs. As my algebra teacher used to say " Life is a FestivaL" She was right , even if you don't have seizures. Take care,

Re: Re: speaking troubles...

Submitted by donnaj_c on Thu, 2006-12-07 - 18:57

Hi everyone, I just found this site today. What an awesome place! Craig ~ I have had seizures since I was 7 (31 years now). I know how you feel about having them at work. Freaked out coworkers, bosses that are not sure if they should keep you, HR managers telling them that they have to because of discrimination laws. Oh, I've been down all the avenues! Wait until you're in a grocery store and you come to with a crowd of people around you and you're laying in a puddle. Wetting yourself is the worst!! I have kids too. Four of the greatest kids on this planet. They refer to my seizures as "flopping like a fish". They gave me the nickname 'Flopper' and we can laugh about it. When I was first told I had E, my pediatrician had originally told my parents that I had a brain tumor and he didn't know how long I had to live. So after a two week vacation to Disney World I saw a neurologist and he laughed and said to me "You don't have a brain tumor you ONLY have epilepsy!!" That has been my attitude my whole life. I ONLY have epilepsy!! I gave this to God a long time ago. Prayer and meditation does help along the way. Maybe I'm supposed to have this to be an advocate. Maybe I'm supposed to me a mentor to kids with E, something I've done for ten years now. I don't know... I've been on all kinds of meds, Phenobarbital, Dilantin, Depakote, Keppra, Sabril, Tegretol, Topamax and Lamictal. I even have the VNS, but it's at 300 right now and it is no longer interrupting my seizures. I am having 6 or 7 a week. I see my neurosurgeon on Jan 11th to schedule a temporal lobectomy. All I can say is you are not alone. Take care and God Bless, Donna tonialpha~ How is the VNS working for you? I had mine implanted in February 06 and it will me removed in July. That's when I am sheduling my surgery. I had to go back in May 06 to have my pulse generator sutured back down. I guess the yoga I was doing pulled it loose! I do the staring seizures too and my eyes blink alot. I used to have to wear a tank top all the time because I would pull at my shirts and take them off and not realize what I was doing. (That was always entertaining, haha) I'm glad that hasn't happened in a few years, especially now that I work at a Community College. Take care and God Bless, Donna â€œAs for me, I will call on God and the Lord will save me" Psalms 55:16

Re: Re: Re: speaking troubles...

Submitted by stevedj on Fri, 2006-12-08 - 09:22

Craig, I'll put on another reply but can only add to what others have said. I've gone through most of the medication and currently on Tegratol, Keppra and Zonegran with so many of the rest have been tried and tested. Certainly the Partial Seziures point mentioned is true with language problems occuring by me after General Seziures for about 15-20 minutes and not remembering simple terms, names and words during Partials seziures on a bi-weekly occurence. I was diagnosed with epilepsy when I was 15 I am now 33. You are not alone - all the best, Steve. P.S. Donna your kids refering to seizures as "flopping like a fish" I like it!