2 trips to the ER, and no EEG either time?

[elizzza811]

Why?

Wouldn't it make more sense to EEG someone like me (who seizures infrequently) right there in the ER when I KNOW my brain is electrically misbehaving?...rather than pushing for a one or two week video EEG that might show nothing since I only have an event once a month? Don't they have 'emergency' EEGs techs available to them in the ER?

I think this would save them money, and me some sanity.

 

[epileric]

The way I've always seen it the ER is to deal with immediate (sometimes temporary) cures for emergencies.

When someone is having constant seizures in the ER there is no need to prove they have seizures on an EEG or even find where in the brain they are triggered. The goal is to stop them ASAP.

 

[momof3boys]

I can their reasoning for wanting to do a Video EEG. The way my dr explained it to me is that its best for them to do the Video EEG so they can see exacly where in the brain the seizures are coming from, and it also shows them you on video, how you are physically during the seizures and they can listen to what you are saying as well.

Doing a regular EEG might not give them the chance to get the details they are seeking with a Video EEG.

 

[elizzza811]

Thing is, since these events were never 'officially' diagnosed as seizures by anybody, they never gave me any meds in the ER to stop them. They did a chest x-ray because I smoke, even though my breathing was just fine, but no EEG?

And the video EEG is only useful if I'm seizuring in the small one or two week window of time I'm hooked up and sitting in front of the video. It might be useful for somebody who seizures on a daily or at least weekly basis, but what about someone like me who seizures once, or on rare occasions, twice a month at best?

And how close is the video camera to your face anyway? Is it right there, right up close? And it's not like I'm going to thrash around or anything with complex partials, and people who witnessed my complex partials can pretty much tell you what's going to happen and what it's going to look like.

I'm also concerned at this point that I'm in simple partial 'status' with this constant clenching/grinding of my teeth (see below), and simple partials are difficult to pick up on any EEG. And according to a book I'm reading, in one study, simple partial 'status' can last 4 hours to as long as 18 years.

Rhythmic teeth grinding induced by temporal lobe seizures
http://www.neurology.org/content/62/12/2306.full.html

 

[Bernard]

ER => stabilize patient

They don't do diagnostic medicine.

 

[Endless]

Some hospitals DO have emergency eeg's. Most notably, hospitals that have a larger neurology ward, and tere is always an eeg technologist on shift. They use the eeg to make sure the person is out of status. Smaller hospitals may not have the luxury of having that equipment or personnel available.

 

[elizzza811]

This is a pretty big hospital though. Maybe not a big medical school hospital, but it's big?

 

[momof3boys]

The camera they have in the room when you are doing a VEEG is not beside you at all. Its on the opposite wall faceing the bed. Mine was next to the tv that was on the wall. It had a red reflected light that was always on and had night vision so they can see you when its "dark" in the room. It wasnt that bad. It just sucked after a few days that you were stuck in a bed and couldnt get up to walk around unless a nurse was in the room with you.

I have simple partial seizures and when I had the complex partial seizures, I would grind my teeth and clinch my jaw. After coming out of the seizure, my jaw was killing me.
I have left temporal lobe epilepsy and when I had my VEEG done, the dr said more than likely what took place is that my seizures I had are simple partials that are just too deep within my brain to be picked up.

But in May I go back to see him, and Im going to see if there are any other tests that can be done. Im covered through the hospital's financial aid program til March of 2012. I might as well get the testing done while I dont have to pay for it.

 

[elizzza811]

How do they know you're having simple/complex partials though if they were too deep within the brain to be picked up on EEG? Because they saw them on video? And are they treating you for seizures based on these clinical observations, as opposed to any known EEG abnormalities?

I'm not doubting you're having these seizures...I believe you are. I'm just worried that because mine are so few and far between (the big complex partials anyway), mine will never be picked up on any video EEG lasting only a week or two. So no use 'watching' me seize, there's nothing to watch.

Plus, if these teeth clenchings/grindings of mine really are simple partial status, I've done this clenching/grinding in front of the neurologist, two ER doctors, the EEG tech, and nobody seemed to notice the clenching, except for the EEG tech who said it was interfering with the EEG and I needed to stop...and I couldn't help it!

When I say I clench and grind, it's not really visible to anybody standing in front of me. Now if that person were to slide their fingers in between my teeth, they'd realize quickly that I was biting down c-o-n-s-t-a-n-t-l-y, and that my lower jaw never relaxes...it bites 'up' constantly...

 

[momof3boys]

How do they know you're having simple/complex partials though if they were too deep within the brain to be picked up on EEG? Because they saw them on video? And are they treating you for seizures based on these clinical observations, as opposed to any known EEG abnormalities?

I'm not doubting you're having these seizures...I believe you are. I'm just worried that because mine are so few and far between (the big complex partials anyway), mine will never be picked up on any video EEG lasting only a week or two. So no use 'watching' me seize, there's nothing to watch.

Plus, if these teeth clenchings/grindings of mine really are simple partial status, I've done this clenching/grinding in front of the neurologist, two ER doctors, the EEG tech, and nobody seemed to notice the clenching, except for the EEG tech who said it was interfering with the EEG and I needed to stop...and I couldn't help it!

When I say I clench and grind, it's not really visible to anybody standing in front of me. Now if that person were to slide their fingers in between my teeth, they'd realize quickly that I was biting down c-o-n-s-t-a-n-t-l-y, and that my lower jaw never relaxes...it bites 'up' constantly...

Well, after the VEEG, my dr sent me to a psych dr, and wanted to rule out the seizures being non epileptic seizures. So I went to see that dr. She said in her opinion they are not non epileptic seizures. So she sent her notes over to my Neuro dr and he got back with us and after hearing from my mom of me being off all my medications for 10 days straight and then on the 11th day, I had a huge grand mal seizure, he believes that I was discharged too soon from the hospital and that in my case, my body just can go alonger period of time with having no seizures, rather than having them come on quickly. He said the seizures that I had in the hospital were more than likely simple partial seizures. Now I am covered with financial aid through March of next year, so when I see him next month, I am going to ask if there is any other tests that I can take to help pin point where the seizures are coming from.

He can also tell how I am with my medications too that the seizures I am having are real epileptic seizures, because when Im only on 1 medication, the Keppra XR, I can go for about a week and feel fine, then out of no where the seizures come on. Once I am on another medication, the seizures are controlled. If they were not epileptic seizures, he said the medications wouldnt be able to stop them. They would just come when ever my body had one.

With all my EEG's Ive had years before, there was always slowing in my left temporal lobe area. My MRI's came back normal though. I would have a EEG about every 2-3 years when I started seeing my pediatric neuro dr when I was 6 yrs old. I saw him up to the age of 19 yrs old, then I started seeing a neuro dr here in town, since then Ive started seeing the new neuro dr I see now. My dr believes overtime, I may have outgrown my grand mal seizures. But he doesnt know that for sure since he now knows I can go for a period of time not having a seizure, then it hits me and I start having them again.

 

[elizzza811]

Oh, no...do you mean they're going to send me to a psychologist then if nothing shows up on my EEG to determine if they are 'real' epileptic events, as opposed to pseudo-seizures or psychogenic seizures? How many appointments? Just one?

But what happens if the person in question also has psychiatric illness? I do have OCD, and I'm on disability for it...and honestly, I think sometimes OCD might be an offshoot of these seizures (though I'll never convince them of that). But these events are definitely not me OCD-ing. I crashed my car...I dropped the phone mid-conversation...I burned holes in my fingers...and all of this really kicked up even more when I stopped long-term Klonopin for anxiety. Is it possible my 'anxiety' was really undiagnosed seizures, and that's why Klonopin helped for so long?

And what was the appointment with the psychologist like? Did she do any neuropsychological tests like this on you?

http://www.memorylossonline.com/glossary/neuropsychologicaltests.html

 

[momof3boys]

Oh, no...do you mean they're going to send me to a psychologist then if nothing shows up on my EEG to determine if they are 'real' epileptic events, as opposed to pseudo-seizures or psychogenic seizures? How many appointments? Just one?

But what happens if the person in question also has psychiatric illness? I do have OCD, and I'm on disability for it...and honestly, I think sometimes OCD might be an offshoot of these seizures (though I'll never convince them of that). But these events are definitely not me OCD-ing. I crashed my car...I dropped the phone mid-conversation...I burned holes in my fingers...and all of this really kicked up even more when I stopped long-term Klonopin for anxiety. Is it possible my 'anxiety' was really undiagnosed seizures, and that's why Klonopin helped for so long?

And what was the appointment with the psychologist like? Did she do any neuropsychological tests like this on you?

http://www.memorylossonline.com/glossary/neuropsychologicaltests.html

I just went to 1 appointment. She asks me about stresses in my life, what I do for a living, how my life is all around. She basicly tried to get as much information as possible to see if I have alot of stress in my life to cause the seizures to happen, which could explain if they were non epileptic seizures. I gave her all my information and history on my seizures, when I was dx'd, how often they occured, who saw them, what my drs all said, the tests Ive taken, what medications I was on, and how my VEEG went. Overall, after talking to her, she pointed out that she couldnt see any stresses in my life to cause these seizures to occur, and since they have never happened before, and I was taken off both medications cold turkey, she can see the difference in the seizures due to that. And since I was put back on the Keppra, and they stopped, she said thats another reason she saw them being epileptic seizures, rather than non epileptic seizures. She said If I ever needed to talk to someone, just give her a call. But overall, she said in her eyes, I have a well balanced life and she couldnt see the seizures I had being non epileptic seizures.

After my dr saw her notes, and heard more information about my past and getting off medications, he feels that they are probably simple partials that just were not picked up on the VEEG and since I couldnt stop the seizures from coming with only taking Keppra XR, he wanted to add on another medication, so Ive tried to Vimpat, which didnt work, and now Im on Lamictal.

 

[elizzza811]

But that's what worries me. Someone like me, who does have significant stresses in her life, might get the pseudoseizure/nonepileptic seizure diagnosis...even though stress can be a seizure trigger even in those with EEG-proven seizures.

And if they are aware of the fact that some seizures are just too deep within the brain to pick up, how could they even go this route? That's scary. My quality of life basically hangs in the balance of one psychologist's opinion of me? When I crashed my car back in December I was truly hopeful for the first time that doctors would believe me. Guess I was wrong.

Thanks for the info though.

 

[Cint]

But that's what worries me. Someone like me, who does have significant stresses in her life, might get the pseudoseizure/nonepileptic seizure diagnosis...even though stress can be a seizure trigger even in those with EEG-proven seizures.

And if they are aware of the fact that some seizures are just too deep within the brain to pick up, how could they even go this route? That's scary. My quality of life basically hangs in the balance of one psychologist's opinion of me?

Have you had any more testing done other than just an EEG or MRI? Have you been to an epilepsy center with a neuropsychologist and a neuropsychiatrist? That would certainly help with the correct diagnosis. And maybe more testing other than the VEEG could help.

From epilepsy.com:

What are less common forms of neuroimaging?

CT and MRI show the brain’s structure, or how it looks. Other neuroimaging methods show its function, or how it works. They are generally used to evaluate patients before epilepsy surgery or as research tools. These methods include:

Single-photon emission computed tomography (SPECT), which shows a map of blood flow through different parts of the brain.
Positron emission tomography (PET), which shows how much sugar (glucose) or oxygen is metabolized (used up) by various areas of the brain.
Magnetoencephalography (MEG), which measures tiny magnetic fields to study the brain's electrical patterns with less interference from the skull and other tissues than on an EEG.
Magnetic resonance spectroscopy (MRS), which examines signals generated by elements such as phosphorus. MRS uses technology similar to that of MRI, which studies hydrogen atoms. MRS data can be used, for example, to learn about metabolism in the brain.
Ultrasound, which can look at fluid or blood in the brain of a newborn baby.

Topic Editor:Ruben Kuzniecky, M.D.

 

[SevenC]

I'm in the same boat you are elizzza regarding my seizures. I've never had EEGS done in the ER, even when brought in having very bad seizures. And it always boggled my mind. "Why are we rescheduling it for a month from now, when the acivitiy may not even be occusing?"

But like everyone else has mentioned above, there are alot of reasons.

I've had several EEGS over the past 4 years. My seizures started in 2007. I've had a 24 hour sleep study EEG/EKG and I've even had a 48 hour EEG. My problem is of those 5 or 6 tests, there was some slowing, a little activity in my left temporal....but not much else going on. He would say " These are abnormal but I don't see a seizure."
I even had several completely normal EEGS.

Those made me feel like a liar.

We went for several years with me on NO medication because my neurologist just wasn't sure what was wrong with me. My diagnosis was just "generalized epilepsy"

This year has been terrible for seizures. I've been having them lasting over 5 minutes and then several minutes unconscious afterward. Luckily they were witnessed by family members or friends and those people came to the doctor with me.

Now I'm on seizure medicine and I'm having another EEG this week, then another in a month. If those are clear I should be able to drive again.

On the other side elizzza, sometimes EEGS are quick to yield results. My son's very frist EEG showed tons of seizures. We put him on medicine and he's doing great.

I totally understand how frustrated you are because I'm going through that right now too. I don't want to be told " Oh you're just stressed".

The last seizure I had, I was at a children's birthday party just sitting and joking with friends. The one before that I was picking out soup at the grocery. The one before that, I was in bed and it woke me up.

So I feel your frustration and I hope you can get some answers. Good luck!

 

[elizzza811]

Cint, I've had an MRI, MRA, EEG, and 24-hour ambulatory EEG...all very recently. Of those, all were normal except for the regular (hour long) EEG, which showed some possible abnormalities, but no 'official' seizures. All of these tests were ordered by a regular neurologist.

I'm not even sure where there is an epilepsy center around here (Philadelphia perhaps?), and given the fact I can't drive and family members are also reluctant to drive any distance into an area they are completely unfamiliar with, I kind of have to rely on the regular neurologists around here to diagnose this.

These seizures were witnessed though, at least the two most severe ones. Both were witnessed by my neighbor (who accompanied me to the ER, at least for the first seizure) and paramedics (who witnessed both).

Paramedics said that during the second seizure my eyes rolled up and to the right, and from what I've been reading, I suspect these are right temporal lobe seizures. I have trouble determining my position in 'space' (in a store or a parking lot, for example), and I have trouble forming new memories. I might not recognize someone I met yesterday, for example. In fact, I can't remember what my neurologist looks like, and I've seen her a good handful of times.

Or I might not remember a conversation from yesterday or anything about a chapter I read in a book before I went to bed last night.

Plus, my sex drive is zip, and from what I've read, right temporal lobe epilepsy can increase sex drive initially (and it did), only to kill it eventually if seizures continue for too long without treatment.

Actually, for quite a few years there I noticed that an orgasm could worsen my symptoms (this jaw tightening/clenching sensation), and it used to concern me to the point that I feared climax. What affect does orgasm have on seizures? Anybody know? Even on the rare occasion now when I am in the mood, I avoid following through because I know if I climax, I'll feel like death with this jaw clenching sensation afterwards. It almost feels as if climax electrocutes my brain even further?

It would seem to make more sense to me to run EEGs when the patient is experiencing symptoms, rather than scheduling a video EEG a month later, long after the symptoms have subsided. Why don't they realize this?

 

[Cint]

Cint, I've had an MRI, MRA, EEG, and 24-hour ambulatory EEG...all very recently. Of those, all were normal except for the regular (hour long) EEG, which showed some possible abnormalities, but no 'official' seizures. All of these tests were ordered by a regular neurologist.

I'm not even sure where there is an epilepsy center around here (Philadelphia perhaps?), and given the fact I can't drive and family members are also reluctant to drive any distance into an area they are completely unfamiliar with, I kind of have to rely on the regular neurologists around here to diagnose this.

Sometimes regular neurologists don't make the correct diagnosis when it comes to seizure disorders, therefore it is better to go to an epilepsy center. When I was first diagnosed, I didn't have family nearby and I couldn't drive either, so I had to rely on public transportation or friends for rides to my epileptologist. So if there is a will, there is a way.

Here's a list of Epilepsy Centers in/near Pennsylvania:

Epilepsy Centers near ZIP Code 18105


Epilepsy Center
Lehigh Valley Health Network Cedar Crest & I-78
P.O. Box 689
Allentown, PA 18105
(610) 402-2273
Med Dir: Clarissa Liew, M.D.
Co-Med Dir: Soraya Jimenez, M.D.
Admin Dir: Sharon Baca, R.N., B.S.N.


Penn Epilepsy Center
University of Pennsylvania 3400 Spruce Street
3 West Gates
Philadelphia, PA 19104
(215) 349-5312
Level 4 Epilepsy Center
Med Dir: Peter B. Crino, M.D., Ph.D.
Admin Dir: Frank McGrath
Christopher Anderson, M.D.

Jefferson Comprehensive Epilepsy Center
Second Floor
900 Walnut Street
Philadelphia, PA 19107
(215) 955-1222
Level 4 Epilepsy Center
Med Dir: Michael R. Sperling, M.D.


Northeast Regional Epilepsy Group
Saint Peter`s University Hospital 254 Easton Avenue
Medical Office Building, 3rd Floor
New Brunswick, NJ 08901
(732) 745-8600
Level 4 Epilepsy Center
Med Dir: Marcelo E. Lancman, M.D.
CoMed Dir: Carlos Lastra, M.D.
Admin Dir: David Jaipersaud

Penn State Comprehensive Epilepsy Program
The Penn State Milton S. Hershey Medical Center 500 University Drive
H037
Hershey, PA 17033
(717) 531-5600
Level 4 Epilepsy Center
Med Dir: Jayant Acharya, M.D.
Admin Dir: Tracy Monette
James McInerney, M.D., Steven J. Schiff, M.D., Ph.D., Vinita J. Acharya, M.D., Michael D. Sather, M.D., Hans Pinkert, M.D.

Atlantic Neuroscience Institute Epilepsy Center
Overlook Hospital 99 Beauvoir Avenue
Summit, NJ 07902
(908) 522-4990
Level 4 Epilepsy Center
Med Dir: Jeffrey M. Politsky, M.D., FRCP(C)
Co-Med Dir: Marcelo E. Lancman, M.D.
Admin Dir: Elizabeth Hogan

Geisinger Epilepsy Management
Geisinger Health System 100 Academy Avenue
Danville, PA 17822
(570) 214-7447
Med Dir: Frank Gilliam, M.D.
Admin Dir: Karen Farley

St. Barnabas Institute of Neurology & Neurosurgery
St. Barnabas Medical Center 94 Old Short Hills Road
Livingston, NJ 07039
(973) 322-8894
Level 4 Epilepsy Center
Med Dir: Eric Geller, M.D.
Co-Med Dir: Rina Goldberg, M.D.
Admin Dir: Maria Dimi


WellSpan Epilepsy Center
York Hospital 290 St. Charles Way
1001 South George Street
York, PA 17405
(717) 851-5503
Level 3 Epilepsy Center
Med Dir: Frank Jiang M.D.
Admin Dir: Michelle DeStefano, R.N.


The Epilepsy Center at St. Joseph`s
St. Joseph`s Regional Medical Center 703 Main Street
Paterson, NJ 07503
(973) 754-2388
Level 3 Epilepsy Center
Med Dir: Dipak Pandya, M.D.
Co-Med Dir: Wanlang Xia, M.D.
Admin Dir: Donna Stone

 

[elizzza811]

That first place you listed is close to where my new neurologist is, so my boyfriend will drive me, take days off, whatever, if he is able...I just was thinking that all the epilepsy centers were in Philly, so thanks.

But it isn't just a matter of will. I'm friends with my neighbor, and she wouldn't even agree to let me ride along in the car with her when she goes grocery shopping..."When I grocery shop, I like to get in and out". And I've done tons of favors for her. In fact, I was giving her a ride the day I seizured and crashed my car.

And once at 2am I called my sister to tell her I almost passed out, not realizing it was a seizure, and her response was, "Do you know what time it is?"

And I don't even think there are any buses out here where I live.

So sorry, it's not always just a matter of will. But thanks for the info.