NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Epilepsy (https://www.neurotalk.org/epilepsy/)

- - Telemmetry (https://www.neurotalk.org/epilepsy/88713-telemmetry.html)

:)Hi everyone
I saw my neurologist today and because I am having new symptoms they want me to go for telemmetry, which involves 5 days in one room hooked up to I presume EEG and video.
Has anyone had this and can you tell me what to expect?:confused:
Thanks for your help!

Hi babyjayne,
I had a veeg (video eeg) done back in 1990, the only difference was my my neurosurgeon drilled 7 holes in my head and put 4 of the electrodes on the right side of my brain and 3 on the left side of my brain. I'm sure you won't have to have that done thank goodness! When they do the veeg they may want you to cut back on your AED's a few days before you go in for the test. Then they will be doing a vegg on you where you will be on camera around the clock except for when you use the restroom. You will have a long cable hooked up to you so you can walk around your room and you don't have to stay in bed. Make sure you bring some books to read or puzzles to do because it can get very boring. Also make it a point to tell your neuro that if certain foods or beverages trigger sz. they will then give you these foods or beverages. I drank a lot of diet soda and ate a lot of potato chips and take my word this fired up sz. for me like you wouldn't believe. You head will itch from all the electrical cream they use that's one thing that drove me crazy. Here's wishing you well and May God Bless You!

Sue

Hi babyjane - I had my first video EEG in 2005 at a huge university hospital. I was ordered to be certain to be taking all my meds as usual including the morning I was to check into the hospital.

When I checked in the first thing was a long series of MRIs, then PET scan, then all the surface veeg "thingys" were glued onto my head. My meds were quickly reduced. They demanded to be the ones doing the reduction and controlling it.

At this hospital I was absolutely confined to the bed. When I needed to go to the bathroom I had to buzz for assistance and wait for someone to "help" me from the bed and to the bathroom. This was to prevent any injury in case of a seizure caused by the sudden radical reduction of meds. I was filmed 24/7 and "watched" by a live nurse too. Weird.

Exercise (riding a stationary bike while all wired up :p ) caused me to have the seizures they wanted to film.

Best wishes to you. May all go well. :hug:

From the experienced - been there, done that, through it all - lost count!

I've had several video electroencephalograms and it's no big
deal, want my "end deal of it"? It's boring as heck!

:p

Just be sure to find out if that Hospital is Wi-Fi accessible
so you can lug your laptop with you! You're going to find
that awfully handy! So everyone here can pick on you, err,
is that you get to pick on us?

:confused:

Hahahahahahaha! Other than that, let's see ... books, they're
ok - but one can get pretty bored. Having a Sketch Book with
Permanent Ink and make SIGNS for the Video is awesome!

"I'M HUNGRY!"

"HI, I CAN SEE YOU!"

"Did you know you
have something between
your teeth?"

:eek:

Oh Oh .. am I bad?

:winky:

But of course, I think the whole purpose is to see how
they can accomplish in boring us to death! It's a dry
joke around here that vEEG's is a "cure all" for seizures
for it is not unusual for one to be in a vEEG and come up
with nothing and head home and go figure ... ends up with
seizures? *smirks* A very common complaint with a lot
who have ended up with vEEG's and returned home empty
handed!

:rolleyes:

However - oh the things they do to get you to seize, sleep
deprivation, med reduction, yadda, yadda, yadda ... but while
I am profoundly deaf - and all my seizures had been captured
and recorded ----> I must note from those who have been
in vEEG ends up with Mrs or Mr Noisy -- so it seems that
there is a Bionic Motormouth at every vEEG? Screaming at
their top of their lungs? (Don't know if this is true or not, but
I am pretty sure the others who've been through this may
very well back me up and share stories about Mr. Screamy-Head
or Mrs. Yadda Mouth) - and all the joys and entertainment one
can get there ...

As for the food - it can range from top notch to I want some
REAL food not cardboard that thinks its food.

:mad:

(It might help if you can get someone to smuggle in something
from McDonalds or somewhere - LOL! I've known some folks
who've done just that - but rest assured - from their postings,
it sure did taste better than cardboard food - LOL!)

And OH - they give you this button here ... you press on it
when you THINK you are going to have a seizure or experience
an aura or feel weird ... it doesn't matter if you pushed it 10,
100, 1,000 times - they have to come and check on everything.

Believe it or not - that little funny smell that you thought maybe
well that's just the janitor somewhere, could very well be a seizure;
PUSH THAT DANGED BUTTON! You might just be surprised to find
out there isn't any janitor and you just had a seizure!

;)

PS: As for the signs ... Really - the Staff could use some humor,
and I've had chuckles from using their dry erase off the wall (because
I was bored) but one Nurse didn't like it when I wrote ..

"Eating at the Desk again?"

Unfortunately - it ended up with the Dry Erase board and pen
being removed from my room!

:(

LOL!

Hi There babyjane,
I've had a telemetry 3 times. your description is exactly what it is. They glue the wires to your scalp to monitor your brains electrical activity. You're video taped so they can always look back and see what you do during a seizure. Then when I had it done at USC (University of Southern California), they also stopped all my meds cold turkey to try and make more seizures happen. Also to see what they worst seizure I'd have was. They can also do an invasive EEG. That's where they put some itty bitty openings into your scull to place the wires there incase they can hardly detect things just glued to the top of your head. but they have to get your permission to do that. The electrical activity in the brain moves so fast it can pass by several wires before it's detected. That's basically the main reason they do the invasive EEG. If it looks a little odd on your EEG they might ask you if it can be done. If you ever need more info., or need to talk by email. My address is shawn_wittman@att.net I hope it goes good for you.
Sincerely
shawn33

Quote:

Originally Posted by babyjayne (Post 518796)

babyjane, The others told you what I would.....Take Things To Do. Also, one thing I wish I would've thought of, since they have a light on you 24/7 take a mask thing to cover your eyes when you want to sleep. The most they would let me do is pull the sheet over my head but still light can get through thin cotton sheets ya know.

babyjayne,
I've l lost track of all the VEEG sI've had them at Emory/university hospital I don't know how may times and my doctors hospital quite a few times.
I'm usually there 5-7 days.
:eek:
There's nothing to it they just always want someone with you, when you have a seizure.

Belinda