Has anyone had a 5-day EEG in a hospital?

My son has had two video EEG's and they normally last long enough so your medical team can record some good diagnostics from your seizures. Could be only a couple of days, could be more. if you don't have a seizure they will start to tapper off your meds. They normally do NOT allow you to get up and move around due to fall risk. Discuss that possibility with your team. Are you have a "Stereo" EEG or just a normal EEG. Big difference!

@tonyde I've had two five-day EEGs at an EMU. I've also been to TGH as well as Mayo. Have you ever talked to the team about going to Mayo. Since you're on Medicare, is that a possibility? If it is a possibility, I would highly suggest Mayo, even if it involves a cost for you. Dr. Feyissa at the JAX Mayo EMU is simply one of the best epilepsy doctors I've ever met. He is kind, compassionate, and one of the most knowledgeable epilepsy doctors I've ever encountered. Besides Dr. Feyissa and the EMU nurses, Mayo was the only other center I worked with that did a total withdrawal of all my ASDs. It is not a pleasant process, but it's like a "trust-fall" exercise, and I needed to be confident that someone had my back. At the end, Mayo removed half of my ASDs. The actual EMU isn't bad, but make sure to understand their care plan process.

Dan

This is from the email sent by the hospital:
Electroencephalogram (EEG) testing with video recording.
The nursing team will turn on your bed alarm and chair alarm unless a family member is with you.
EEG electrodes will be glued in place on your head and then will be wrapped in gauze.
Your brain’s activity will be recorded twenty-four hour/day for the duration of your stay.
You will be video taped and not be able to use a blanket or sheet.
Required that you stay in your room for the entire visit.

I had one 5 years ago at Mayo in Arizona. They are intense and can leave a lasting impression with you. The staff are fantastic and it takes a special type of person to work there. I went it with a different attitude about them then I have now but it did get a lot of information that is helpful for diagnosis and directions on where to go with treatment. My way of looking at it is an EEG you get at an office is a snapshot, but spending 5 days hooked to a monitor can give you so much more. It's in a controlled environment with equipment that can save you and also diagnose you to build a better treatment plan. I do recommend them but be prepared for an intense 5 days and also bring stuff to do since you will be spending a lot of time with bed alarms and such.

I did the multi day EEG with cameras on me and all. Medication was reduced daily. After 3 days of no seizures the doctor had me stay awake all night. Seizures started that night. And I got to see my own seizure from the recording.

@restisaweapon, how did it impact you when you saw the seizure? I have to send my seizures to my Mayo doctors, and it is always startling to see their presentation.

It was shocking to watch. I thought the seizure lasted for about one minute, the video showed it was almost 20 minutes. I came out of it believing I was talking to my wife and it was only grumbling noise.

Would you do it all over again? What was your atttiude before and how did it change after? I've been in the hospital bed with the alarm for one day and it's wasn't fun.

I had a 2-hour EEG at a doctor's office, my eyes felt like they were vibrating when they used a flashing light. That led to my doctor refrring me for the 5-day EEG.

I'll have cameras on me also, hoping they don't show me a video of my snoring loud enough to wake the neighbors. LOL

Before I didn't know what to expect and epilepsy wasn't as big of a concern to me as it should have been or is now.
In the same situation now, I would still do it again. The amount of information that was gained has helped in the care I receive and helped me understand my epilepsy better as well.