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How do you know your Diagnoses?
Fri, 03/17/2006 - 22:10Topic: New to Epilepsy.com
Hi. I am trying to figure out what the difference between Epilepsy and a Seizure Disorder is. My first Neurologist has referred me on to another doctor that specializes in Seizures because she can not figure out my case. I called today and the Nurse told me my case was Difficult. I am still having seizure while I am on the seizure medication. I take 1200mg of Tegretol a day and 400mg of Topamax a day. I still get seizures. I think she thinks I am making them up. When I did the EEG it came back normal. I didn't fall asleep for the test, I need sleeping medication to help me sleep and they did not give me any to help me sleep.
They have told me I have a Seizure Disorder but does that qualify as Epilepsy?
I have to wait to see what this new Seizure Doctor says. I hate being pushed around from Dr. to Dr. I have been seeing the first dr. for a good couple of years, and now she is finally referring me on. I had to have a Grand Mal before she believe I was having seizures. (I have complex Partials)
Leah
Comments
Re: Re: How do you know your Diagnoses?
Submitted by abrannon1227 on Thu, 2006-03-23 - 18:39
Dear Leah, I was in your shoes when I found out I was epileptic. Some doctors call it epilepsy and others call it a "seizure disorder". They mean the same thing. The word epilepsy is greek for "tendency to seize". I find myself saying both. The word epilepsy seems so much more serious than a seizure disorder. I seem to say "I have a seizure disorder" when I am telling someone for the first time about my condition and I'm not sure how the will react. When I am around family and/or close friends saying epilepsy doesn't bother me anymore.
Just because someone has a seizure does not mean they have epilepsy. many people will have a single seizure and never have another one again. When I had my first seizure my doctor didn't put me on any meds and we hoped it was a reaction to an over-the-counter sinus med I had taken. I had a 2nd and 3rd seizure shortly after and we knew that it wasn't a reaction and I need to take the meds.
Well, hang in there, it will get easier as time passes.
Re: Re: Re: How do you know your Diagnoses?
Submitted by Jana33 on Sat, 2006-03-25 - 10:54
Well I'm still in shock becasue I started having seizures in 2004 and that doctor at that time didn't do anything because my EEG came back normal so the seizures did stop. Then in 2005 they started again and at this times my new doctor wanted to rule out other health problem I have wasn't the cause for my seizures so every thing came back fine and the seizure stop but xmas eve of 2005 i had two seizure back to back so in Janurary 2006 I told him abou tit and he order a EEG while I was waiting on the results I had 5 seizure and when the EEG came back it was normal and after that I 8 more for Feburary and I have had some Aura's so my doctor said I have to see a neurologisit and when I saw him and my wife and kids tells him how my seizures looks even though my EEG came back normal I was still diagnosis with a seizure disorder and he started me on meds that day and I was told I can't drive anymore. so it don't matter which way a doctor use the term it all means the same.
Re: How do you know your Diagnoses?
Submitted by emily7777 on Thu, 2006-03-23 - 16:49
Dear Leah, 6 1/2 months after a grand mal seizure I still don't have a name to put on my condition. My neur says anybody that has a seizure automatically has epilipsy. She says I will need to be on my AED for about 1 year, after that they will do another EEG, and if it comes out normal they will take me off the AED's???? I was told I had brain spikes???? My GP says I have seizure disorder and she has never spoken to my neur or seen the results of my EEG. She just goes by what I tell her. I hope you have better luck finding a diagnosis. Emily