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Old 11-18-2002, 02:17 PM   #1
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eddy0228 HB User
Post Diagnosed....Finally!!! and full of questions

Hi all!

Wow, I've been reading back through the posts here and you all are truly caring and amazing individuals.

I'm 26, married, no kids. I've been diagnosed for 3 months with complex partial temporal lobe seizures, after 12 years of trying to get doctors to listen to me. Eventually the seizures just got so bad, that they weren't able to brush me off anymore. In the past 3 months I've been on 3 different medications. Keppra, Tegratol, and Dilantin. Keppra sent me into status and thusly the ER. Tegratol, worked pretty well aside from a severe allergic reaction that ended in a visit to the ER. Currently on Dilantin 400mg/day. I'm not sure how I feel about this one, I am scared of the meds now that the 1st ones landed me in the ER.

At first I was thankful that someone finally listened to me, and correctly diagnosed what was happening (well I had to convince my PCP that this is was what was happening before I could the neuro, but she did finally make the referal). Since then I've felt very scared and alone. My husband is a wonderful loving man and he tries, but its so hard for me to describe to him why I do these quirky things, or how it is I'm feeling. Its really hard for him not to be able to "fix-it". Reading all your posts has helped me. I've looked at a lot of other boards too. It amazes me how many folks have had to fight with the medical community to get correct and appropriate treatment. I'm glad someone else can understand my anger and frustration with that.

Okay, now that you all have let me vent I need some advise. Without going into the story I need to find a new neurologist. What questions do I ask on the 1st visit, do insurance companies cover these "Centers"(?) I keep hearing about. Or if anyone knows of a good neuro in San Diego please let me know. Any advise on going through the process of finding a good neuro would be so helpful.

Thanks for letting me vent and I hope to visit here often.

-eddy

 
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Old 11-18-2002, 08:15 PM   #2
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Hi Eddy,
I really don't have any advice except to keep fighting until you get the type of medical care that Doctors would want for themselves AND their loved ones. I often ask Doctors, "if I was your wife or Mom...how would you proceed?" It makes a difference I think. Hang in there. Now that you have a diagnosis your next battle is getting the proper treatment. Good luck, Kathy
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Old 11-19-2002, 05:58 AM   #3
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Eddy - Please describe what your seizures have been like since they began. I'm considering Keppra for my daughter, how long were you on it before you started having problems? She also had a severe reaction to carbatrol - generic for tegretol, so that's why I've hesitated putting her on meds. I've tried the diet thing and it just wasn't enough to stop the seizures.

 
Old 11-19-2002, 01:05 PM   #4
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As close as the neuro and I can figure is I've been having these since the 6th grade. I'm now 26 and have only been diagnosed for 3 months. Until high-school they were just "dizzy spells" that felt like someone was yanking the floor, chair, bed, etc. out from underneath me. It would only last for about 30 sec. and then go away, no down time. In high school they started to last longer and this is the first time I can remember having what I know now is an aura. They came more frequently and recovery time lengthened. All this time my doctors kept telling me it was nothing, or I needed to eat more regularly, etc. They have progressed in frequency, length and recovery time since then.

In the past couple of years they seem to be 2-3 a week. While afterward I would need to sleep as long 14 hours to feel "okay" again. A normal sequence goes like this:

1. Aura- a wierd sort of disconnect, distant, surreal sort of feeling sometimes with a cooper/metalic taste in my mouth. this can last anywhere from 30min to a couple hours.

2. Then it hits. A feeling like someone is pulling the world out from underneath me, or like someone was moving the floor up and down. I don't loose consciousness, but I can no longer communicate. Occasionaly I get very mild twitch in my right fingers. This part lasts 2-5 minutes. Recently I've had them last as long as 45.

3. Then its nap time. I can somewhat answer yes or no ?'s but its so hard to think, all I can do is sleep. I can hear and understand what is being said to me but I can't make my mouth speak.

Okay as far as Keppra goes...it just didn't work for me. I felt awful from the moment I started to take it. I felt like I could have been an extra in "Night of the Living Dead". Then it made me have seizures everyday, and I was so confused that I didn't make sense to myself. I was on it a total of 3 weeks. Half way through the third week I tried to call the neuro to report all this and ask for something else. I didn't think I should just aburptly stop taking it. At this time I was up to a couple a day. For three days I tried to call the doc, but he never called back. On the third day I had 3 in an 8 hour period. Silly me decided I needed to go to class anyway, and my classmate ended up bringing me to the ER because I went into one that wasn't stopping and lasted for hours. I don't remember a lot about that one. Needless to say the doc paid attention then, but only enough to toss out some different med.

Please forgive my sarcasim today. It has been an awful couple days. I'm tried of taking medication with awful reactions, that don't do any good. What's the point of taking these awful things if I still have just as many seizures as before????????????

And yesterday I got a notice from the DMV, requesting all this paperwork be completed. I'm assuming the doc had to report my diagnosis. I don't know how to feel about this. I'm always very aware about driving with all this. Its been going on for years. I know how to deal with it. If I feel the aura, I don't drive. I've not had a seizure in the past 8 years with a warning. If I'm out somewhere and I don't feel right, I call my husband or a friend to come get me. I have bus schedules and taxi numbers close at hand. I understand why, but driving has always been what I do to relax and get away. Yeah I know that sounds odd but when I need to be alone that's what I do. Its a freedom I just don't want to loose. I think yesterday when I got that letter was when it really hit me. I had been pretty matter-of-fact about it, aside from being angry at the medical community. It was just like a cold slap of reality. I cried for hours. Life the it was is gone.

Wow, I guess I needed vent again. Thanks for listening, I need to take a nap. Love to everyone!

[This message has been edited by eddy0228 (edited 11-19-2002).]

 
Old 11-19-2002, 01:26 PM   #5
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Eddy - Thanks for your reply. I understand your frustration. I cry everyday for the normal life I know my child will never have. It just kills me. I'm so frightened of putting her on another drug that will just seem to make her worse. And, who knows what it will do to a developing brain. Anyway, thanks for your help.

 
Old 11-19-2002, 01:38 PM   #6
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eddy0228 HB User
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Lazoo,

I'm glad I could offer some information. Although I'd pretty much figured out a year ago what was happening, it wasn't real. Now it seems that everything is becoming a struggle. Anyhow, thanks for listening to me.

What kind of seizures does your daughter have? and how long has she been diagnosed, what kind of meds has she tried? I like hearing other people experience, it helps me to understand and not feel so alone, and I hope I can do the same for others.

Eddy

[This message has been edited by eddy0228 (edited 11-19-2002).]

 
Old 11-24-2002, 01:07 PM   #7
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shirlgirl HB User
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hi eddy,
i can't understand how they have just diagnosed you as this after all this time? i was diagnosed six months later 21 years ago!!

 
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