Video EEG Tips

Hello everyone,

I am a 37 year old female with TLE. I had a week long video eeg last week to determine exactly where my seizures originate. Before my hospital stay I was not able to find any tips online and learned a few things the hard way. I don't want this to happen to anyone else. I was admitted to UC Davis, an excellent facility, on Monday for a 5 day stay. Prior to my appointment I read over the information packet they provided several times and thought I was prepared. Things did not go as I expected. Here are some tips that will hopefuly help someone else get through this procedure:

1. Find out exactly where you will be staying. All of the information I was provided prior to admisssion refered to the EEG Lab, so I did not expect to actually be in the hospital. Wrong! I was admitted to the neurology ward along with everyone who was recovering from brain surgery, trauma, etc. I had 3 different roommates over my 5 day stay. None of them were there for eeg monitoring. They all came from the ICU. One woman was recovering from an aneurysm. She was clearly in a great deal of pain (she cried the entire time), was incontinent, and could not speak. This really scared me, as I was expecting to room with someone doing a veeg like me. In addition to the roommate situation, the woman in the room next to mine screamed bloody murder randomly throughout the day and most of the night. Again, this was scary! I later learned that some patients actually live there, as they are difficult to place in other locations. It was very odd to be lucid in this environment. 

2. Ask questions about what is happening to you. On my first day I was told that I had to have a shot of Heparin in my stomach every 8 hours to prevent blood clots. The nurse told me that the shot would be painful. She was not kidding. It was  a pain that I can't even describe, and I could feel it for hours. I later found out that I didn't HAVE to have it, and I refused the shot for the rest of my stay. I'm not a doctor, and am not giving medical advise, but please ask questions about what is happening to you. You have the right to refuse any medical treatment. 

3. It's hard to be in bed for 5 days, like really hard. I found that sitting on a pillow helped. It took me a few days to figure this out. I also did some yoga and had my husband massage me. It's a great excuse to get a massage!

4. If you can help it, don't let them put the IV in your arm. If you have "baby veins" like me and have to have it in your arm, have them put it in your non-dominant arm. Mine went in my dominant arm, which made it difficult to bend my elbow. Eating, writing, typing, holding a book, playing cards, and sleeping were very difficult. And it began to ache as time went by. 

5. Ladies--if you have long hair, put it in a braid before you get hooked up to the eeg. I actually did this right!

6. Another tip for the ladies--it's hard to wear a bra with all the wires all over your body. Bring tops that you are comfortable going braless in, but nothing that goes over your head. Also, I thought leggings would be a good choice, then I found out that I'd have a heart monitor on my knee. Something loose is better. 

7. A shirt or pants with front pockets are convient for storing your wires/chords when you go to the bathroom. 

8. Sleep deprivation make it difficult to read or get any work done. It is also very noisy in a hospital. I brought several books, some work, and a journal. I didn't touch any of them.

9. Netflix is your best friend. But don't touch anything that is plugged in! The electricity will run through you. Don't worry--I didn't learn this the hard way!

10. Bring some thank you notes. I really wish I had done this. The doctors and nurses were really wonderful and I wish that I had brought some cards for them. The have a really hard job, especially in the neuro ward. 

11. Bring some socks or slippers with non-stick bottoms. The socks they give you are really uncomfortable, and it's nice to have something cozy from home.

12.  I brought a Snuggie (you know, the blanket with arms). It was perfect. It smelled like home and was easy to wear with all the stuff attached to my limbs. Bring your own pillow, too. And bring a blanket and pillow for your baby sitter.

13. Bring babywipes, chapstick, hand sanitizer, and anything else that will help you feel cleanish. I never used my hairbrush.

That's all I can think of now (I'm still dealing with the sleep deprivation). Please feel free to ask me any questions. I don't want anyone else to go in to this as unprepared as I was!

Good luck!

Sarah