EEG advice

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

reuben12

reuben12

New
Messages
69
Reaction score
0
Points
0
Hey Guys,

I was just hoping for some advice on my upcoming EEG. I've had a couple of the little half hour or hour ones (no seizures during), but never anything bigger. Generally I just have simple partials, and I'm in a situation where my doctor doesn't think it's epilepsy. Anyways, I started back to university and on my second day had a batch (every 5 minutes for 14 hours) of full convulsions. It seemed to have bought me two sets of EEGS. On tuesday I have one just from 8-5, and if that doesn't catch a seizure I have a 10 day telemetry in march.

So, how do these EEG's work. Do I have to tell them when I'm having a seizure and then they try to confirm one? Do they just look it over for the brain activity? I'm just worried that I'll have some lighter simple partials, report it to them, and they won't show up on the system. I hear with these simple partial temporal lobe ones they don't show up a lot of the time. Are they going to be doing a bunch of stuff to try to cause the seizures?

The nurse mentioned that I should try to set myself up for a day of seizures in order to have one happen. Of course I'd rather have a diagnosis this week instead of waiting and having to take 10 days off school in 2 months. I'll do the regular staying up late, drinking coffee, etc. Should I come off the meds as well? My doctor has pulled me off the meds before and generally I'll start seizing like crazy within a day or two. I guess i feel it would be a sure fire way of having them show up. I guess I'm concerned that if nothing shows this time my neuro will just cancel the big one and I'll remain as a case where he believes it's not epilepsy. I'd hate to come off, have it mess me up completely and still have nothing show for it. Currently I have probably 5 seizures a day 3 or 4 days a week. Therefore if it's one of my seizure days it will happen for sure, but if it's not, then I'm out of luck.

Boy this seems like a lot of stress. I feel like I have a lot riding on "passing" this test. Whatever happens I don't want this test to lead to more proof for my doctor that it isn't epilepsy.

Anyways, any advice about the outpatient EEG, or the 10 day telemetry one would be greatly appreciated. For the 10 day am I allowed visitors and stuff, or is it just me in a bed alone for 10 days going crazy...
 
EEG results

Hi, I've been diagnosed with simple partial epilepsy though none of the EEGs both 15 minute and ambulatory EEGs have really shown anything, which sucks its a total bummer. Your neurologist or epileptologist can order a video EEG or a intracranial EEG where electrodes are placed near the brain usually through the nasal canal. This is done because the electric discharges in simple partial epilepsy happen deep within the brain thus to pickup the abnormal activity the electrodes need to be closer to the actual neuronal discharge. Don't worry many persons with temporal lobe epilepsy and other types of focal epilepsy have normal EEG results, which makes diagnosis difficult. But if you find anti-epileptic medications seem to dampen your seizures that is a definite sign you do have epilepsy! Best of luck!
 
Shoot, that's a shame. Did you have seizures while you were hooked up? Did you come of the drugs before those dates?
 
Ive had the simple half an hour to an hour EEGs done before. Lots of them. On those I have to be sleep deprived of course. In march I will be having my first Video EEG. I wasnt told much about what to expect by my dr or nurses. I was given a pamplet on what to bring, and when to be there. But other than that, I had to do some research on it for myself. Are you getting a video EEG done too?
 
I was finally diagnosed with simple and complex partial seizures but all my tests over the past few years came up clean. I felt the same as you, I hoped every time I had a test that it would show something! It was very frustrating when they came up negative every time. I was finally referred to an epileptologist who listened to my history and diagnosed me that way.
 
Krista said:
I was finally diagnosed with simple and complex partial seizures but all my tests over the past few years came up clean. I felt the same as you, I hoped every time I had a test that it would show something! It was very frustrating when they came up negative every time. I was finally referred to an epileptologist who listened to my history and diagnosed me that way.
Click to expand...

Krista, Im the same! I have simple complex partial seizures. Ive had MRI's that come up clean, and my EEG's show activity in my left temporal lobe. But other than that, all my tests come up clean and they cant find anything.
 
Hi, Reuben,

It's not unusual to have a negative eeg. Something should show up on the 10-day, though. If it doesn't they will continue your meds but will dig in even deeper to try to find some physical cause for your seizures (like a heart or neurological problem).

They won't do an invasive EEG (one with the electrodes inside your skull) unless you are a candidate for surgery, so no worries there.

Most in-patient EEG's you aren't allowed out of bed except to use the bathroom, and only then with a nurse right there beside you. That's for both safety's sake (they don't want you to seize and fall), and so they can keep you on the camera. Most of the time you'll be in your nice, padded bed. On the 4th day my doc let me sit up in a chair next to the bed.

It's hard to sleep because a computer program watches your brain waves, and every time it detects something that might be a seizure an alarm goes off at the nurses station and they come in and ask if you are okay. This gets annoying because most of the time it is just a normal change in types of brain waves during sleep (like delta to theta).

You are right. The eeg's that last days are really boring. But at least they don't hurt. Every country, and every hospital, has different procedures and rules for the in-patient (your 10-day) EEG. I had a private room and was allowed all the visitors I wanted, 24x7, and the hospital provided a cot if a family member wanted to stay with me. They allowed me to bring in all the electronics that I wanted to, like my ipod, laptop, dvd player, cell phone, etc. But I had to charge them outside of the room because charging interfered with the electrodes.

Different hospitals have different amenities. Some have a private room, some don't. Some are in a dedicated neurology ward (mine was), some aren't. Some have to even pay for TV, some have so much free stuff to do it's hard to choose. My room had cable TV, free on-demand movies, webTV, online gaming with other patients in the hospital (I was wiped up off the floor by some kid in pediatrics), and free wireless internet access. The volunteers also brought me legos. :)

Food... is good at some hospitals, not so good at others. My hospital is known for it's pretty good food, with a big menu to order off of and 24x7 room service. They'd even cook something for you that's off-menu if you ask. Still, the food got really repetitive and boring after 5 days. I had my friends and family bring me food from my favorite restaurants.

Bring your favorite pillow and a fluffy blanket. Very comforting. You may also want to bring games, puzzles, etc. for a variety of activities. I smuggled in lots of snacks. Snacking on just fruit from the hospital cafeteria gets old really fast.

Some other items that are useful:
- Baby wipes because you can't just easily get out of bed to wash your hands and face.
- Nice liquid soap because it will be just baths in the sink for the duration of your stay - no showers. The hospital soap is awful.
- Be sure to take shirts that button up the front because it takes an act of god to get them to unplug the wires so you can get a non-button shirt off over your head. You'll want at least one change of cloths every day because you get pretty ripe after so many days without a shower, sink baths or no sink baths.
- Take ear plugs just in case the hospital doesn't have any. They'll help you sleep at night because the hospital is a noisy place with nurses talking, alarms going off, the janitor going by, etc.

Take at least a quarter cup of oil to get the glue out of your head when it's all over. Any kind of oil will do - olive, canola, baby, crankshaft. Rub it into your scalp and work the little globs of glue with your fingers until they dissolve, then shampoo. If after your hair dries it looks like you have a bad case of dandruff, that's the leftover glue. Do the oil thing again.

The thing that surprised me most after a 5-day eeg was how weak I was afterwards, from just laying in bed. I read that you lose 5% of your muscle mass every week that's spent in bed. If I had it to do over again I'd take exercise bands and do some simple exercises in bed. At least that would have helped a little.

Good luck. Will you let us know how it turns out?
 
Were you sleep deprived on purpose, or did it just happen to be that way. I have mine in the morning, so I guess trying to prepare.

Yup, they have it listed as an extended video for tomorrow. I'm not really too sure what the video part of it does. I guess just so they can see what happens on the outside? Do they just review the whole thing, or do you have to tell them when you are seizing?

Wow, so 10 days of just staying in the bed and having the nurse video tape you going to the washroom. Sounds like fun LOL.

Oooh, that's kind of interesting with the alarm. I guess on the bright side the lack of sleep should help keep the seizures coming I guess.

Thanks so much for all the great advice. So I'm guessing that I can't wash my hair the entire time eh. Boy I'm going to get so itchy. I wonder if there would be any benefit to me shaving my hair off before I went in. I love the excersize band concept. I'm going to have issues with spending that much time in bed. I guess my first incident had me in the hospital for 2 weeks, but I was too drugged up to notice. Feeling fine will make it draw out though. If they catch some good seizures, do they just let you go, or are you committed to the entire time?

Thanks again everyone. Seems like a stressful process.
 
Hey, Reuben,

They compare the video to the eeg. It helps them figure out what's going on. To be quite blunt, they can look at the video and tell whether it is an epileptic seizure, a psychogenic non-epileptic seizure, a physiologic non-epileptic seizure, or whether you are having an epileptic seizure but it just isn't showing up on the eeg.

How will they know if you have a seizure? If you have a seizure, the computer might pick it up, but you also have a box around your waist with a button you are supposed to press, or a visitor that's with you presses. I don't know about you, but when I'm having a seizure about the last thing I can do is press a button. So at least try to press the button AFTER the seizure. That will mark the eeg record so the doctor can be sure to look at that bit of data.

I can normally have a whole month without seizures, then I'll have many a day for weeks, then get a week off, then a month with a seizure a day... You get the idea. It's quite random. The week I had the inpatient eeg I only had one SP. The computer picked up abnormal brain waves, but the doc said it wasn't enough to positively diagnose epilepsy. I'm one of the one that's been diagnosed based on symptoms. But after the inconclusive results from the in-patient video eeg, they've started turning over every possible rock to find another organic (physical) cause. And bingo, we think we've found one. But that's another post.

The one-day eeg - Oh, yeah. I'd do everything that causes a seizure for you. Stay up all night. Drink coffee. Chug-a-lug Red Bull. Take your meds a couple of hours late. Have a beer (if that does it for you). Dance to a disco ball and strobe lights. They'll flash lights in your eyes, anyway, but why wait for the fun? They'll have you breathe funny. They'll have you fall asleep if you can (abnormal brain waves happen most often when shifting between brain wave types, usually in sleep - alpha, beta, delta, etc). Whatever is a seizure trigger for you, I'd do it, bring it along, whatever it takes. But don't do it and then drive there, for heaven's sake.

I wish I would have smuggled some rum into the hospital. A good rum punch would have set me off for sure. Alcohol is a huge seizure trigger for me. Not that I'm recommending you smuggle alcohol into the hospital. It would get you kicked out for sure (lol...). But you could have a swig before you go in. ;)

For the 10-day, If you have a few good seizures right away in the hosptial, they may let you go home. But probably not if they took you off your meds. I'm guessing they'll probably want to get you stable and back on your meds first.

Good luck. I'm cheering for a seizure, the second your backside hits the bed!
 
Awe, thanks Endless. that's the kind of sweet statement that can only come from another epileptic LOL. I do also hope I can seize my ass off.

I came off the meds yesterday. I was just contemplating having a beer tonight. That's good to know about the trying to sleep. I was worried I'd get too little sleep tonight and have troubles staying awake tomorrow, but if that's part of the goal, woohoo.

oooh, what's the post with your progress. I'd be interested to hear. Congrats (I hope)
 
Thanks for the link. That is very interesting. I guess there must be multiple causes for this other than epilepsy.

In case anyone is interested, my 8 hour went rather well. It was ambulatory, so I was able to move around within the confines of my small room. I basically just sat in a chair reading though for most of the time. I spent a bit of time in the bed, but found that it was relaxing me and getting rid of my pre-seizure feeling.

I made sure to set myself up properly for a seizure and it seems to have worked. Boy do I ever owe you endless for that redbull idea. I had a giant one the day of my very first seizure, and apparently it is still effective LOL. I had a bit of activity during the light show at the beginning. Not really what I would call my typical seizure, but for a few of the frequencies my shoulder turned a bit tonic and started flexing downwards. Seemed kind of strange, but oh well. It didn't repeat when they went back to those frequencies though.

I had 2 of my typical lighter seizures where I have some troubles coming up with words and I get mentally slow. Nothing really powerful though. My step mom noticed a change in the EEG during this period on one of them, although she's no expert, so I guess that could mean anything (I'd assume that even me just moving my hand would cause some sort of a change in the reading) I had my muscles tense up a bit on that one as well. Other than that I had 3 episodes where I just turn really jumpy, and a few myoclonic jerks.

I started out the day really hopeful, as it started strong, but by the end I was starting to get worried that they wouldn't have caught anything. For some reason I was expecting instant results, but apparently I have to wait for 1 or 2 weeks for my neuro to get back to me, and I'm supposed to call him if I haven't heard anything in 1 month. I'm trying to be positive about things as I know this isn't an instant cure sort of thing, and admittedly getting a diagnosis doesn't change my treatment in theory. I'm just so paranoid that it won't show up as they were all light simple partials. My doctor already thinks it's non epileptic, so I feel he would be rather quick to jump to that conclusion if they didn't show up, and end up cancelling my 10 day and stopping treatment on me.

Oh well. I guess for now I'm just thrilled to have experienced 5 seizures. And really they are probably typical of the ones that I have on a daily basis anyways. I just really wanted to have a "bad" one you know. Going to be a long wait for these results. Up until now I felt rather strongly that I would rather not get an official diagnosis, but I guess it's time. Not sure if that's some sort of stage in the acceptance of my new self or what.
 
FIVE?! Wooooohooooo! :wave:


Here I am... chearing for your seizures! :loco:


But you are going to stop now, right?
 
LOL, I love it. Thanks for the cheer :D.

Yup, I went back on my meds after I got out, and have managed to go all day without a seizure. I don't know if anyone else notices this, but boy do I feel amazing the day after a rough seizure day. I don't know if it's just a case of clearing the system of what is building up, or just being appreciative of the fact that they stopped. It really has been a great day though today :D
 
Congrats! I know what you mean about the feeling that you've "rebooted" after a seizure. In my case it's as if tension that has built up has been released.
 
I am getting prepared for a 10 day also, at least after reading these I don't feel so bad and alone about things, Thanks for starting the post! They are also going to do an invasive EEG which terrifies me. But thats what you have to do before surgery, or so they tell me
 
Last edited:
Great to see another fellow canadian on the board here. I agree completely. I think that's the biggest part of this community is just realizing that you aren't alone. Sometimes that's got to be enough LOL.

You going in for surgery soon?
 
I love that I found this site!!

I keep getting the runaround about the surgery, depressing really, even my EEG's have been pushed around, It was supposed to have started this month, I really would like to find a doctor who cares about how I feel instead of his reputation.
 
You must log in or register to reply here.
Back
Top Bottom