Seizure Disorder or Epilepsy

[daviscy60]

I'm new to this but I'm trying to find answers to questions I have. Started having seizures at 19. Not really sure what was happening. First few I was at home alone. After having grand mal in front of my husband ended up in ER. Told to see neurologist. They did ct scan. No tumor. So then EEG. All I was told was it showed irregular brain activity. Start taking Dilantin. I never had Dr say you have epilepsy. If asked I would say I had a seizure disorder. Last April and May I have had seizures at work. Got a copy of report that a Dr at work wrote up and in her diagnoses she has epilepsy. My question is what is the difference in seizure disorder and epilepsy? After reading some of the post on here, my problems for the most part have been controlled with meds. Seems like so many on here still have seizures even though on meds. Is this the difference. And I'm really not sure if someone were to ask me if I had E would or should I say yes....

 

[JaneC]

I think they're the same thing, just different terminology.

 

[jenbayly17]

Daviscy60
Welcome to the site. Epilepsy is has many different types of seizures and causes for them. But if you are on a medicine to control them and your EEG came back with irregular activity that they told you about it should have been further explained. The Eeg test is a main test used for detecting seizure activity. I would get clarification from your doctor that has prescribed your medicine. once you know for sure if it is epilepsy then you can decide to tell people or not. I was diagnosed at age 12 so I didn't want to say much about it at that time, but as an adult I am more comfortable talking about it to others so they won't be completely taken off guard if I were to have a seizure and needed help. Epilepsy is also a very misunderstood disease so I feel that if we as a community talk about it with others in our lives we could educate the public about it and get people more aware of how to help. Keep asking questions here but especially to your doctor. You deserve to know why a medicine is prescribed to you.

 

[Cint]

Epilepsy and seizure disorder are one in the same. Some folks rather call it a "seizure disorder". I started having seizures when I was 22 years old and have tried many different meds, had brain surgery and now the VNS and I'm one of those who still keep having seizures. And I have no trouble telling others that I have epilepsy. People need to be informed in case they witness me having a CP or TC seizure.

 

[daviscy60]

Thanks for info. After reading stories from others on here I do feel so much better, but still not comfortable talking about it to other people and especially people I work with. After the issue at work it was really hard to go back and so embarrassing. A couple of people the next day came into the cubicle I sit in at wrk and asked me and this other girl if we knew anything about a girl they took out on a stretcher. I just said no and what difference does it matter. One of the guys that had asked after the girl I sit with went and told him it was me. He said to her why did it seem like I was mad at the world. I just don't think they understand how embarrassing it is. Since the issues at wrk in April and in May. I have been moved to 2nd shift and sit with a different group of people and a different supervisor. Not sure how much they know or don't know. Appt tomorrow to have EEG and see if I need to change meds. Had hoped back in 1995 of getting off of them altogether and putting this nightmare behind me. Seems like when this happens I sink into bad depression and takes about a month to get over. Usually just tell myself to forget it and don't think about it.

 

[jenbayly17]

I know it is hard to talk about with people at work sometimes. I just came back from a med change where I was off for 6 weeks. I have told people that sit close in my area and my supervisor. But I know how you feel that you don't want people to look at you differently or judge about things that they don't understand. But it is best to tell someone close by that you trust and the more educated people become generally I have found them to be more concerned than judgemental. For those that judge, as much as it hurts sometimes I always try to consider that it's a benefit to find out who you can depend on. Sounds silly maybe but people that belittle others for health issues that can't be controlled are the people I try to avoid in my everyday life. Keep your chin up. I hope the new shift works better for you. But don't hide it from everyone. Find someone you trust or supervisor you work for to keep them prepared if something should happen. People gossip about things they don't understand usually. :hugs: