Epilepsy Monitoring Unit??

[BuckeyeFan]

I was at the Cleveland Clinic in Ohio last Friday. Saw 2 epilologists. This is ranked in the top 10 in the nation.

They have suggested i go to an Epilepsy Monitoring Unit to help diagnose likely new types of seizures I am having. I am trying to learn more about the experience of being there for 3-5 days in a room with minimal privacy and possibly reduced medication. Sounds like being locked up just waiting for a seizure to happen.
I have had epilepsy for 43 years (started at age 20) starting with full blown tonic-clonics and nasty auras for many years. For the past 20, my hero of a Neurologist has kept me free of TCs and limited auras.

Now facing 2 problems.
1. I have been having times when I “freeze” up and can’t respond to what is around me. I am alert to what is happening, just have limited ability to speak and lose whatever we were talking about. I also have instances, especially at work, where I just get confused and can’t figure out how to do simple tasks.
2. They also feel my Dilantin side effects may be getting worse. I have sensory ataxia and reduced cognitive abilities. Learning anything is very difficult. I used to be a leader, teacher, organizer, the one that made things happen. Now I can’t absorb a page when reading it.

 

[Sabbo]

My neurologists have often suggested that I get a VNS or RNS. I am completely unaware of the start/stop of my complex partial seizures, so anything requiring my action is useless. I'm only aware of a seizure's occurrence (if there are no witnesses) due to seeing something I've done to myself or my surroundings. I have MANY injuries thanks to them.

 

[Porkette]

Hi Buckeyefan,

A few yrs. ago I had the video e.e.g. done where I had to stay in the hospital and they put the depth electrodes
directly on my brain. Then just like you they cut back on my meds and gave me foods that would trigger my
seizures. I was in the hospital for about 10 days total. I was on camera around the clock except when I was using
the restroom and I had a 25 ft. cable attached to me so I could get up and walk around the room I didn't have to
stay in bed. When they did this they could pinpoint the areas of my brain that were triggering seizures so when I
went in for my ultrasound surgery the following yr. they knew what to get rid of on my brain.
I wish you the best of luck and May God Bless You,

Sue

 

[Heavy Kevy]

I went through the similar situation as Sue last January. I’ve done the hospital stay monitoring three or four times. Once with the electrodes inserted. Best of luck.
Here’s a quote I like:
“There is one consolation in being sick; and that is the possibility that you may recover to a better state than you were ever in before.”

Henry David Thoreau

 

[BuckeyeFan]

I ended up being in the monitoring unit for 6 nights. My electrodes were just mounted on the surface. Was really weird being tethered like that. It wasn’t as bad or boring as I thought it might be. I actually brought my work computer with me and tried to work at least 4 hours a day. That helped pass time.

They didn’t see any incidents on the EEG. Thus they are pretty sure these new symptoms are nott a new type of seizure for me. Good news, but still left me not knowing what is happening to me.

Next step is getting off my Dilantin. Separate thread I started asking about transitioning to Briviact.

 

[Heavy Kevy]

6 nights is long enough. Like you said, good and bad. It’s frustrating, but glad to hear it wasn’t too awful.

 

[suebear]

When I was in the EMU (epilepsy monitoring unit) here it was a private room for five days. Sure I was monitored but the room was private intentionally so patients are not seen by anyone other than medical EMU staff. I actually had one specific nurse during the day then a specific nurse for evening hours.

 

[BuckeyeFan]

When I was in the EMU (epilepsy monitoring unit) here it was a private room for five days. Sure I was monitored but the room was private intentionally so patients are not seen by anyone other than medical EMU staff. I actually had one specific nurse during the day then a specific nurse for evening hours.

I was very pleased with my nurses. They were wonderful people and very knowledgeable about E. I think I had 4 day nurses across the 6 days, however the same night nurse for 5 of the days.
I had hung up a Christmas stocking and most days it had something in it.

 

[BuckeyeFan]

You seem to be going through a lot at the moment and of course it is quite daunting to think of spending 3-5 days in an Epilepsy Monitoring Unit. Uneven privacy rights and the unrevealed information about your medication should be really difficult. At least you are getting the best from Cleveland Clinic, and they are doing all they can to fix the issue.

I can only imagine how much the “freezing” episodes and confusion must be frustrating to when you’re younger and very active in all the things around you. At least you know this and hopefully the constant monitoring will allow your doctors to make the changes that are necessary concerning your treatment.

I am not young anymore. I am 63, but still working professionally. That is one of the most frustrating things. I used to perform at a very high level, but now struggle with basic tasks. There is a good chance I will end up on short-term disability while I switch drugs and try to overcome these existing phenytoin side effects.