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Old 01-06-2005, 08:38 PM   #1
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EthanF HB User
Question Test Question

Hey Everyone

My Nurologist wants me to have some test called Long Term Monitoring sometime in the middle of Febuary. Altough I have had Epilepsy all my life I never remember doing this and my parents don't either. My Nerologist gave me a vage description of it but it didn't help. IS there anyone out there who can give me a good idea of what it is.

 
Old 01-07-2005, 01:49 PM   #2
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Join Date: Nov 2004
Posts: 13
bayou_girl HB User
Re: Test Question

Ethan~~

I can give you an idea because when I was in med school, I did my time in the EMU for 3 years, so I know what goes on. I have also bee a patient in one, too, so I have seen both sides.

The time you spend there waries from doctor to doctor and EMU to EMU.

Usually they keep you for at LEAST 5 days. Sometimes 2 or 3 for younger children who can't tolerate being in places for very long, or for very actively seizing adults.

I stayed in one for long term monitoring last March for 9 days, so it just depends. Sometimes they just keep you until they see you seize, or they may want 2 or more.

They will take all your meds away from you, so it will be easier to seize (induce them by not having the drug in your system), the hook you up to 34 electrodes as opposed to the regular 16-20. They use coloidal glue that literally chokes you with its fumes. Then they attach them to a special box that attaches to a 25 ft cable that is from the camera. The camera is mounted usually right at you from the opposite wall, so it can see EVERYTHING you do. There is also a microphone that drops 2 ft from the ceiling that will pick up all the sounds you make during your seizure when you trip your event button. It will ring an alarm at the nurse's station. There are usually 5 or 6 beds per unit and 2 nurses on staff all the time.

You are allowed to either sit in a chair, or stay in your bed, but either way, they have to use a restraint to keep you from falling out of either place.

You need to take alot of things to keep busy, but that are quiet. You can have hand-held games, as long as the sound is muted and there are not lights on it. It will be confiscated if there is.

Take books, word searches, music, games, puzzles, personal lap tops and note books, most units have hook-ups, that kind of stuff.

There is privacy in the bathroom. There shouldn't be a camera in there. They used to do that and most of the units have done away with it.

You will have to carry the box with you everywhere you go in your room usually supplied with its own kind of hip pack. The electrode leads are usually taped back behind your head like a pony tail.

Other than that, they wait for you to seize. Some people seize fast, and others take a bit longer. The usual is about 48 hours after admission and withdrawal of meds.

It took me about 72 hours. I actually came in just afte seizing and didn't know it, but once that VEEG was going it picked up spiking and slowing. I also had a BP that was through the roof, too.

I had 6 seizures while I was in there.

I was later diagnosed with JAE and MTLES, and found out that I was born with Myoclonic seizures.

It gets VERY boring in there.

The food where I was was not too bad.

I went through Tegretol withdrawal, as well.

GOOD LUCK!!

Nancy
__________________
-Absence Myoclonic PLUS MTLES
-On Depakote ER-1000 mgs Neurontin-3600 mgs


 
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Old 01-07-2005, 04:10 PM   #3
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Kathy287 HB User
Re: Test Question

I was in for the extended testing 3 times. The first 2 I stayed for 9 days, and had no events. The third time I stayed 11 and finally!!!! It is one of those weird things, I had lots of people praying for me to have a seizure. The last night I had 3. They usually want you to have at least 2. They had me be sleep deprived. They tried using strobe lights. I had to ride a bike several times a day. The main thing is, make sure you have enough to do. I took scarves I was making with my daughter to help fund her going on a trip...I was able to crank out quite a few(I even sold a few). I know it sounds like a really bad thing, but they were able to find that I was having seizures, what kind they were, and where they were coming from. That helped them be able to find the right meds, and I have been seizure free for over 13 months now. Good luck with your testing.
Kathy

 
Old 01-07-2005, 08:24 PM   #4
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Join Date: May 2004
Location: Wisconsin
Posts: 9
Jeff Jay HB User
Re: Test Question

I went through these tests twice to find the focal piont of my siezures. The first time I was in for about 3 days before having a seizure the second I had siezures two days after being admitted. This wasn't for meds but for surgery. I had surgery in August 04.
My epileptologist called the test "Siezure monitoring". The tests aren't that bad. I didn't even realise I had seizures the next day untill they released me and I needed help walking. (All the drugs they gave me that night to stop the seizures) The hospital provided me with a VCR and any movies I wanted to watch, a calling card to call my familly who lives out of town and anything else an epileptic, diabetic and someone with a bad heart can have. Good luck with your tests and I pray for good results.
Jeff

 
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