EEG Monitoring

[Duke]

I'm going to Wake Forest in N.C. on Sept 17 for phase I monitoring for the RNS trials. And I Know thers a differenc between night time when your asleep and day time monitoring, I guess just need some one to tell me a little more than there trying to find a focal point. And I guess I'm a little nervous.

Duke

[brain]

The Focal Point?

Ummm - let's see how BORED we
can make you?



Kidding aside the actual perspective
in reality isn't the Focal Point but
rather, where the seizures are
originating from as a whole. Sometimes
seizures can trigger here and there
and there, and sometimes seizures
are just generalized to one area
or two. Whether it's STM (Short
Term Monitoring) or LTM (Long Term
Monitoring) in Video - they watch
also what you are doing; as some
things can actually provoke seizures,
such as when you're working on
crossword puzzles, brain busters,
or even reading. Awake or Asleep,
they monitor it.

So this is one opportunity in your
lifetime you can rightfully say that
"I'm being WATCHED!" and not worry
about being sent to a Psychiatrist!



I hope my humor has made it easier
for you, it's not all that bad as it
sounds. I've had both video EEG STM
and LTM many times, and even EEG
with no video, STM.

Just remember to bring something
with you to keep yourself busy.
Your neurologist or the neurologist Floor should
provide you instructions of what you
can bring with you - and usually you're
tethered to a cable (10 - 12 feet long)
so you can move around, unless the
Doctor has given you orders for you
to be confined to the bed.

[Duke]

brain,
So your'e saying it's a matter of were these bits of miss firing brain cells are going to to make a seizure happen, these are the spots the Drs are trying to find?? Ar these the generalized areas your talking about?
And they said I would be watched 24hrs a day and maybee sleep deprived one night. You were right about the puzzles and somthing to read. Since I'm already this far in the RNS trials study I am really concerned they want get all the information they need. I'm half way through my 2nd 28 day calender and I just want everything to go well at the hospital, thanks for your reply.

Duke

[brain]

brain,
So your'e saying it's a matter of were these bits of miss firing brain cells are going to to make a seizure happen, these are the spots the Drs are trying to find?? Ar these the generalized areas your talking about?
And they said I would be watched 24hrs a day and maybee sleep deprived one night. You were right about the puzzles and somthing to read. Since I'm already this far in the RNS trials study I am really concerned they want get all the information they need. I'm half way through my 2nd 28 day calender and I just want everything to go well at the hospital, thanks for your reply.

Duke

They are keeping you for 28 days?



And NO do not be disappointed if nothing shows up.
I've had periods of those!

* Being Sleep Deprived is one way to provoke
a seizure.

* Titration off of medication is another method.

* There's other ways they can do things
to provoke seizures.

All this is carefully monitored and staffed at all
times.

The generalized areas that they are looking
for is where the seizures are coming from,
is what I am implying here.

[Duke]

brain,

thats a better explanation than I've gotten from anybody, thanks a whole lot. No I want be there for 28 days just a week , Dr. Bells assistant gave 3 calenders all with just 28 days, and I have to have at least 2 or 3 seizures in each 28 day period thats part of the criteria to be able to have thh RNS implant, the other depends on the EEG monitoring I guess. I've read they only want patients with 1 generalized area, then I read somewhere else no more than 2 problem areas.

Duke

[Nancy]

Hi -- I've done the Video EEG thing twice. The first time it took 3 days for the hospital to cause/record 3 seizures they wanted to see. The second time (after first surgery, thinking about another) it took 4 days.

Most of my meds were quickly removed but they knew I had no problems with any foods or coffee. The stationary bike caused my seizures.

Boring and S-L-O-W but worth it all.

For that intense monitoring the EEG "electrodes" were securly glued to my head and then my head was COVERED - face peeking out - with fabric to secure everything. Miserable and ugly but it worked.

[Duke]

Nancy,
Thanks for your reply,what you described is prety much the same as what the woman that registered me told me would happen whae I get to the epilepsy unit. And I would be on a short leash in my room with the wires hooked to me, and that I could go to the family room.Maybee I'll checkout the stationary bike there myself. Thanks again.

Duke

[Nancy]

Go to the family room? Wow!!
In the university hospital where I was, I could not go to the BATHROOM with out "permission" - a call to the desk - and then assistance...... someone always had to come and "help" me walk 10' to the bathroom just in case I had a seizure and fell. They waited outside the bathroom door so they could walk me back to bed.

When I wanted to brush my teeth - I had to call for "help".
I could NEVER, ever leave my bed for any reason without assistance. I could not even swing my legs over the side of the bed. The person watching me every second on the camera would demand immediate "All you all right, Nancy? Back into bed, Nancy. Be careful, Nancy".

If I needed a glass of water, I pushed the button and begged.

Every hospital is different.

[brain]

Go to the family room? Wow!!
In the university hospital where I was, I could not go to the BATHROOM with out "permission" - a call to the desk - and then assistance...... someone always had to come and "help" me walk 10' to the bathroom just in case I had a seizure and fell. They waited outside the bathroom door so they could walk me back to bed.

When I wanted to brush my teeth - I had to call for "help".
I could NEVER, ever leave my bed for any reason without assistance. I could not even swing my legs over the side of the bed. The person watching me every second on the camera would demand immediate "All you all right, Nancy? Back into bed, Nancy. Be careful, Nancy".

If I needed a glass of water, I pushed the button and begged.

Every hospital is different.

Wahhhhhhhh! I could only go 10'-12' feet! That
was about as far as the bathroom was!



However, my room was directly in front of the
Nurses desk, so they could see me at all times,
and my door was never closed. Even when I
try, they kept it open at all times. Partially
because I'm totally deaf and they could keep
an eye on me. There's been times the XLEvent
would trip and I wouldn't know it.

They had to disconnect the phone from my
room because the ringing would drive them
up the freaking wall!

1) I didn't know I had a phone call

2) How am I supposed to answer it?

3) The Nurses could only take so much ringing!