Video eeg

[Itr786]

Hi everyone,

(I apologise for the length of this post)...

I suffer from partial seizures of the temporal lobe.
These seizures have been gradually getting more and more intense over the years to a point where
my legs give way and I become pretty much unaware of my surroundings whilst I'm going through the seizures.

After my last visit to see my epileptologist, he's suggested the idea of going down the surgery route.
To establish whether I'm a candidate, I've been having various scans/tests over the past few months.

After having an mri scan, and ambulatory EEG monitoring for a day (I went home with a ambulatory recorder),
I've had the results back saying...

"There is no evidence of which side of the brain may be causing the seizures.
Therefore you need to come into hospital and we need to capture some seizures, I've now put you onto the list
to have a video EEG with drug withdrawal".

Has anyone had this type of scan done?...
What is involved?...
Will they stick me into a room, withdraw me of the AED I'm on until I have a seizure(s)?

Is it a case that I'll be in hospital being monitored until I have a seizure(s), regardless if it's a day, or a month!?

With my temporal lobe epilepsy, my seizures seems to come along in bursts, it's a regular pattern where I'll be
fine for 4-5 weeks, then I normally have a 1/2 days of having a bunch of seizures, then another gap of 4-5 weeks.
The only time this changes is if I have a cold/flu, irregular/lack of sleep, or I do any sort of intense exercise, be it football/squash etc...
This would normally bring on a seizure.
Obviously I've never stopped taking the AED I'm on (200/200 lamotrigine), so seizures could come on
after a day or two.

I'm just worried I could potentially need to be in hospital for weeks waiting for a seizure to come along.

Thanks in advanced.

 

[Kgartner]

If your seizures are intermittent, then they will definitely reduce or withdraw your medication. Have you ever missed a dose of medication? Your response to that may give you an idea of how long it will probably take for you to have a seizure. They will probably also suggest that you be sleep deprived, particularly if that is a usual seizure trigger for you.

However, most likely they won't keep you in for weeks because insurance won't cover it! I expect that they will let you know how long your maximum stay is - for my daughter it was 1 week. We ended up staying only 3 nights because she had 4 seizures on her second day.

It is very surreal to sit in the hospital hoping for a seizure! My biggest fear was that she wouldn't have any and it would be a waste of time; my second biggest fear was that she would have dangerous seizures. But they do take great care of you, and for us it was extremely useful. She is currently doing the next level of surgery evaluation (MEG/MRI last week, neuropsych, and probably an EEG with depth electrodes).

Best of luck to you!

 

[Itr786]

Hi,

Thanks for the response.

Was your daughter just given a bed in a normal ward with other patience, or kept in a separate room on her own?

 

[Kgartner]

Was your daughter just given a bed in a normal ward with other patience, or kept in a separate room on her own?

Well, at her hospital (Children's Hospital of Philadelphia) almost all the rooms are private anyway. But only certain rooms are set up as video EEG rooms, and all of them are private. They have several cameras mounted to the wall that record you all the time (except when in the bathroom). When you check in they put the EEG leads on you, and then you are "tethered" to the machine that is recording your EEG all the time - you probably won't be able to leave the room for the duration of your stay. The idea is that they can correlate the EEG readings with the video that shows the clinical signs of your seizures.

A technician was monitoring her EEG readings all the time, and would come running in if they showed a seizure. They also needed either me or my husband to be with her at all times to mark when she had an event and verify that it was one of her typical seizures. But I don't know if they require that for adults.

You should be able to get complete information about how the Epilepsy Monitoring Unit works at your hospital before going in so that you know what to expect. Also, make sure that you are clear with your neurologist what the goals of the stay are: how many seizures do they want to see? what type? etc. That should also ease some of your anxieties.

 

[BIGMAN131307]

The Epilepsy Monitoring Unit (EMU) is a specialized section of a hospital or clinic for diagnosing persons with seizures. It is staffed by an attending neurologist, registered nurses, and EEG technologists.

Patients are admitted to the EMU when their condition requires prolonged EEG monitoring. This is done to: characterize the seizure type; localize the area where the seizure begins; to rule out non-epileptic seizures. The information can help the physician design a specific treatment plan for each patient.

Epilepsy monitoring usually requires patients to stop taking some or all of their anti-epilepsy medications (AED). This may result in more frequent and more intense seizures. Patients may be asked to stay awake all night to provoke seizures.

Patients in the EMU receive continuous EEG and video monitoring. The EEG monitors electrical impulses from the nerve cells in the brain to record the brain’s activities. EEG wires are glued to the scalp and connected to a computer which stores the information.

The EEG is recorded continuously 24 hours a day. In addition the patient is monitored by video to characterize the way a seizure looks as well as to allow the nursing staff to tell when a patient requires assistance. Monitoring typically requires a two- to five-day hospital stay.
_____________________________________________________________________

I myself have been dealing with CPS originating in my right temporal lobe.
I have been in the EMU twice. With the second time determining that I was going to have the surgery. I had my RTLS back in May. So far so good.

There are many of us with experience being in the EMU.

If you have anymore questions ask us.

 

[Itr786]

Hi,
I thought I'd bump this thread that I created a few months ago as I'm currently sitting in hospital having the video telemetry EEG scan done.

It began last Friday, for 7 days, so due to end tomorrow.

I'm currently on 200/200mg lamical, and 750/750 keppra, and was slowly being taken off the keppra, which began on Monday, I was concerned not enough was going to get done in the 7 days to trigger a seizure, but literally 24hours later, I had 2 seizures in the space of 12 hours.

The first was the type I've always had, a partial seizure, but I really can't remember much of the second.
I got the usual warning sign, which was a frightening, deep, sinking feeling, I immediately pressed for the nurse. What followed was all a little hazy. I remember the nurse walking in, and me telling her I was having a seizure....

The next thing I remember was waking up in bed, with a nurse sitting by the door in the room.

I've never had a seizure like the second one, so still a little confused with what's happened.

All was (apparently) caught on the EEG scan as well as camera, so hopefully we can progress from here and finally have a decision made on whether I'm a candidate for surgery. I am still open minded on meds, even though I've been through a few now, I'm still hopeful I can find a med/dosage that can control my seizures, and I don't need to go ahead with going under the knife (if I'm a candidate)...

Time will tell I suppose...

 

[RTL]

Temporal Lobe Surgery

Hello,

I had surgery 12 years ago and have recounted my thoughts and experiences here:

users.eastlink.ca/~kehoe/surgery/

You'll have to copy and paste the link.

Kevin