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I just need help!

Hello I am a sixteen year old girl who just developed seizures this past January. The neuro classified the really bad ones as generalized and that I have a seizure disorder not E per say. When I was hospitalized with seizing the EEG was negative. Yet the therapists know these aren't physcigenic and the neuro doesn't believe they are all pseudo seizures either. My point in writing this is simple. I have been clustering the past couple of days. More than enough for me. I was supposed to do a winter sport for my school and that is looking out of the question right now. I even had one in my sleep!! I just am worried that I will be hospitalized again and have another false negative EEG. Any advice?? Thanks in advance! Emily


Re: I just need help!

your neuro neuro classified the really bad ones as generalized and that I have a seizure disorder. Understand a seizure disorder is basically saying you have Epilepsy and all that generally takes is a few seizures of one kind or another. As for being hospitalized having seizures and the EEG showing normal. That can happen. I have been living and dealing with epilepsy for 50+years. I had EEGs done every 2 weeksand they all showed normal. But I was still having seizures.They ran a series of test and nothing showed up. The last test was another EEG. I was tired and during that EEG I fell asleep. That EEG showed seizure activity. They looked at where teh activity came from on the neuro=angeogram (todays MRI) and they saw scared brain tissue which came from a bloe to the head. This eeg was doneabout 15 months after I started having seizures. Relax think and ask yourself. Do I want to play in winter sports or find out what is causing the seizures?

Understand that if you are having cluster of seizures it really isn't very wise to do much until you know what type of seizures you have. generalized seizures can go into tonic clonic which can become grande mal. What kind of winter sports would you be in? On the slops?  Then ask yourself if I had a seizure and no one sees me what will happen?

Basically I am telling you to use some common sense and find out you options. You did not post whether you have been put on medications or not. If the neuro started you on medications they may need to increase the dosage so your seizures can be controlled.

Re: I just need help!

"Seizure disorder" is just and elegant and pg way of saying epilepsy. They not know what type of epilepsy you have, do seizure disorder encompass all.. Secondly, it is very possible to have negative EEG s and still have epilepsy, sometimes it takes many of them to see what is clinically relevant. Look at it this way, if you go fishing for an hour and catch no fish, that dipole not mean that there are no fish in the ocean. People get 24 EEG and sometimes week long EEGs because he 1 hour ones are insufficient.

Excersicing is good for everyone, particularly those with epilepsy. I don't see why you would not participate in a winter sport. My 15 year old son just finished cross country and just got started with I door track. His seizures are under control and not interfere.

If your condition is getting worse, or is not well controlled, tell your parents and make n appointment with your neurologist. Medication needs to be adjusted or changed o you can have better seizure control. Talk to your doctor.

Re: I just need help!

I was in your shoes at one point in my life. What I wanted more than anything else in the world was to be 'normal' again. Luckily, I only had my seizures within the first hour of waking up in the morning. So no one except my family ever saw me have one. I didn't tell anyone what was wrong with me for fear of being labeled a FREAK. Your doctor needs to find a medication which controls your seizures. You will probably be tired at first - very tired. But once your body adjusts, you can live an almost normal life! I went for 20 years without having any seizures. Then one day I had 2 in a row. Then went another 10 years after that without another. I'm 45 now. Have had my drivers license, went to school, got married, had a beautiful daughter, and still work a normal full-time job working on websites. This is not the end of the world for you. Yes, you have some challenges ahead. But be strong, and take control of your own destiny. You have your whole entire life to look forward to. Being diagnosed with a seizure disorder is just a hurdle. You will encounter many of those in life. Its all about the decisions you make. Educate yourself about your seizure disorder, be strong, and stay positive! Best of luck to you.

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