what to expect?? - Epilepsy Message Board

09-19-2002, 05:50 PM

Ok....... i went to the epileptologist today and they are sticking me in a clinic for a week to catch a seizure what should i expect there?

Tattoo · 09-19-2002, 10:01 PM

Sounds like you are having a VEEG. Do you ever visit other boards? There is a lot of info re VEEGs out there. Many of us have had VEEG's. It is a shame that there is the policy that other message boards cannot be mentioned here since there is so much more info that could really benefit a person. There may already be info on this board, but I don't think I have seen it recently. I suggest that you do a Google Search for other epilepsy message boards since many people have had this done and have left valuable info about their experiences on the Net. When are you going to have it done? I have had it twice. I do want you to be able to find a lot of others who have had it done since much fewer people visit here. They will decrease or stop your meds to make you have seizures. They may sleep deprive you as well. The Monitoring Unit needs to have monitors at the desk with live bodies watching them just like in a Telemetry Unit. Find out about that. The camera will be in your room watching you, but there is no person watching the camera. That is just videoing your actions. The people/staff need to be watching the monitors to see when you have seizures so that can stop them before they get out of hand. Ask about that because my first facility did not have monitors with live bodies watching. The Second one did. Take clothes you do not have to pull over your head since the EEG will be ongoing the entire time. Also take things to do like videos, books, and whatever you like to do to kill time. Please search for other message boards, too. So much info out there. Your doc's office should have provided you the patient teaching as to the details. I hope this helps. Tattoo

[This message has been edited by Tattoo (edited 09-20-2002).]

09-20-2002, 08:26 AM

Thanks alot Tattoo ...... you have helped me alot since posting on this paticular board ..... u always answer and you know so much about this.... I'll look around I didn't know what the testing was called. And I will make sure that someone is watching (or ask that anyways) That was one of my biggest fears. Since mine have always been the Grandmal seizures. I am afraid that it will go too long. I've always had my husband near to know not to let it go too long. I go in October 14.

mnsnellers · 09-20-2002, 04:55 PM

Good luck to you. I just got out a couple of days ago after being in for a week. It was a very long week, but it was worth it. I am used to being independent and doing things for myself and it felt very weird having to call the nurse anytime I needed to get out of bed (go to the bathroom or anything). I even got into trouble one time because I got up to get something out of my bag without calling a nurse first and they were worried because they couldn't see me on the monitor. Like Tattoo said, make sure you bring plenty of stuff to keep you busy. I enjoy doing cross stitch, and I got a lot of it done that week. Luckily where I went, they had a whole library of movies and they even had a *********** I could play (I am 30 but still a kid at heart and love playing video games). I ended up having 4 seizures while I was in. Unfortunately they all happened at times when they were not able to inject the dye and run the scan, but They were able to collect enough data from the EEG and the seizures. It almost made me feel releived to have seizures while I was in there, because I felt like they didn't beleive that I was having seizures before, and this proved that I was. Now I go in for more tests next week and also am going to talk to the surgeon about surgery, which I have to admit I am scared to death about, because I had surgery when I was 14 and had to be awake for part of it. Plus, how many of us get to have brain surgery twice in our life?

Enough rambling about me, Good luck to you and I hope everything turns out well.

Jason MN