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Normal EEG but continuing seizures

Hi,

I have been having e for the past 12-13 years. It was rather well-controlled with medication (phenobarbital) till about 6 to 7 months back, when it started again but with different characteristics. The characteristics changed again about a month back, but my EEG which was sleep-deprived with medication came out to be normal.

Is this possible or could it be because of the mugs of coffee that i had to stay awake? Incidentally, the week i had my eeg, i was seizure free.

Would appreciate if anyone could throw some light on this! :-)

 

Comments

Re: Normal EEG but continuing seizures

Well, I really wish that some people would have answered your question because I had a similar issue (sort of). I was taking topamax and it was doing the job, and I had a normal sleep-deprived EEG (which I guess can just mean the medicine is working) but then shortly after have had different manifestations of seizures and a severe blackout that lasted several hours. So, I get to enjoy an ambulatory EEG for 3 days in about a month. I imagine you may have something similar in your future or maybe you could suggest it to your doctor.

Re: Normal EEG but continuing seizures

Hi,

Thanks for the posting. I will ask my doc about it. I did tell him about the seizures, but he didn't suggest anything like this. Just added Clonazopane in addition to my AED, which is Phenobarbital.

Hope u find something on ur EEG and get allright soon. take care.

Amazon

Re: Normal EEG but continuing seizures

I am new to this game as well.  I have had 2 EEGs at 2 different hospitals for 20 minutes each and both are negative.  My regular Neurologist seems to think my problem is sleep, but I disagree.  The wife agrees with her, but only becuase she is motivated by not having me go on Leave to have a multi-day study done.  Its a money thing.  I do use a CPAP, but just had a sleep study and a Narcolepsy test which were negative. 

The Dr gave me Nuvigil which keeps me from falling over my computer unconscious, but its like a mask.  I have all the visual and brain feelings of a normal episode, I just no longer conk out.  Prior to the Nuvigil, I actually slumped over my laptop in front of her for three hours.  Answered the phone for an emergency call for work, had a 1 minute disussion on the call that normally takes 15 minutes and hung up.  Ignored another call.  Three hours later I was conscious and asked my wife what happened.  She thought I fell asleep.  I couldn't remember anything though about the entire event and the call.  Just lost time! 

Now, I find myself having these masked events where Nuvigil keeps my eyes open and I look awake, but I am stuck staring at the TV or a picture on the wall and can't communicate when I am conscious and can remember but that is just a short burst of time.  The rest of the time I have no idea what happened other than more lost time.  The Dr cracks me up though becuase she thinks she has fixed my problems becuase I no longer slump over my laptop "sleeping!"

Based upon what I have read though I am in plenty company with a normal EEG but still having silent seizures.  Funny thing is the Hospital Chief Neurologist told me that an EEG is only 50% effective and 60% if they are lucky enough to catch you in a seizure.  So when I ask my regular Neurologist about this she kind of blows me off and sticks to her guns as this being a sleep problem.  I think she is stuck on sleep becuase when this started that is how I described it, but now that I know the big thing that indicates a seizure is having a period of time where you cannot explain or remember what happened, I know I described my problem wrong to her initially.  I think had I told her that to begin with we would be going down a completly different route.  Its the classic preconceived notion problem that engineers encounter so often.

Re: Normal EEG but continuing seizures

Hi Fireblade.  You are the only one that comes up when I do a search for Nuvigil.  I've had seizures and been on Keppra since 2007.  Now I have been diagnosed with a form of narcolepsy.  The Doc wants me on Nuvigil.  I'm a little scared to add this med.  What in general can you say about your experience with it?

Re: Normal EEG but continuing seizures

I am a 43Y old male diagnosed with partial complex seizures at age eleven. I have been to 7-9 diffeerent neurologists. I have been on many meds- meberal, depakote, neurontin, topamax, tranxene, etc... all without sccess.  I have had several MRI's and EEG's which all came back normal.

My seizures became more severe around age 35 (I started losing consciousness and falling to the ground etc..), but I wasn't very good at pursuing the issue because I believed it would result in the same old thing.  Nobody knows more than I how tricky epileptic seizures are.  Or seizures in general.

In July of 2009 I had a severe anxiety attack resulting from a liftime of repressing a lot of different emotions as a result of the epilepsy.  I ended up in the ER for 5 days.  They put me on the EEG machine (again) and found nothing.  Ran the MRI and found nothing. By the grace of God my Neurologist (I had been going to him for 12 years) was on call that Sunday reluctantly came to see me. (the trip to the ER in "09) He pawned me of to a Eptoligist.  In three visits the Eptoligist found the Focus of my Epilepsy. 

The Eptoligist started with a inpatient 7-10 day video EEG (which I didn't want to do because they never work).  Day 2 he cut my meds in half. Day 3- no more meds an no more sleep.  It took 52 hours (without sleep)and than the seizures started coming.  I gave him three seizures inside of a 24 hour period after that point.

The Eptoligist has done what 8 neuroligist could not do in 33 years.  He says I am an excellent canidate for surgery to remove the hot spot.

You need a siscom MRI (more powerful lens) and a PET exam if they can locate the hot spots.

Get to the right doctor- it took 5 days and no meds and no sleep to produce a seizure.  No other doctor ever sugested this type of activity in my time with the illness.

Good Luck

Re: Normal EEG but continuing seizures

I have had three sleep deprived EEG's done while on medication and nothing has showed yet. I have Complex Partial Seizures but they never seem to fire when you want them to. The caffine in the coffee could lean more towards triggering a seizure then preventing though, so I doubt it caused you not to have seizure activity. I guess I just figure you had no seizure activity at the time of the EEG taking place. 

 

 

Re: Normal EEG but continuing seizures

Hi Sifon,

Thanks for the reply. I was really wondering why it would be. Looks like i am not alone.

Best of luck and thanks again.

Take care,

Amazon

Re: Normal EEG but continuing seizures

I have had E since i was 15 I had only one abnormal EEG when I was a teenager ( I am now 28)  My last EEG was about a month ago.  it was not sleep deprived.  It was normal.  two weeks later i had a grand mal.  It's very frustrating.  I have spoken to my doc about the three day thing but it's very expensive and my insurance would give me a hard time about it.  I was controled with depakote for 7 years and then switched to lamictal and had 3 szs in three years.  So I am switching to Keppra now.  Wish me luck.  I do know this though.  Your brain very rarely does what you want it to when you want it to.  If you get the three day one please post your results and if it's helpful.  Good Luck!

 

Also does anyone know, do the meds cause the activity to stop or do they just make it so that it doesn't effect you?

Re: Normal EEG but continuing seizures

Hi,

Looks like we are in the same boat. Thanks for the post and i hope u are able to get that 3-day thing. Also, in my experience, i feel that the AEDs just supress the seizure activity. the good ones do it without causing too many sideeffects and let u get back to a normal life. but, then again, each med reacts differently to different persons.

 

Hope this helps. And, best of luck. Thanks for posting.

 

Take Care,

Amazon

Re: Normal EEG but continuing seizures

Anti-seizure meds suppress the neurons from misfiring, so you could say that they help to stop the activity. I have done quite a few EEG's in school as well during my clinical rotation and I have seen patients that are on anti-seizure meds and they still show seizure activity on the EEG, but I have seen normal EEG's on patients with seizures as well. My dad has epilepsy and his seizures have been under control for 27 years. The EEG that I did on him at school still showed spike and wave activity on his EEG despite being on meds. The brain is definitely a mystery!

I hope that I could answer your question and I hope that the Keppra works for you! Good luck!

 

Re: Normal EEG but continuing seizures

You seem to have alot of personal and educational experience with seizures and EEGs.  So I would like your opinion on my situation.  I have two beautiful daughters 16 and 17.  Last year my youngest daughter suffered two tonic clonic seizures and has had three EEGs - all showing a spike. Her MRI was normal. She has been taking Lamictal since last year and has not suffered any more seizures.  All seems to be good with her and well under control. My oldest suffered one tonic clonic last year and had a normal EEG and MRI.  They did not treat her with any medication.  But since March of this year (6 wks) she has had 7 tonic clonics.  She has had two more EEGs all still normal.  She has been on Topiramate - it didn't work - still seized.  Lamictal - she got the rash.  Then Clobazam - still seized.  On Sunday she had 3 tonic clonics in less than 6 hours.  They did another EEG - still normal.  They have now doubled her Clobazam and added dilantin, she is a zombie.  My heart breaks for her.  There is no other family history of seizures other than her sister whom it happened to about the same time.  What is your opinion?

Re: Normal EEG but continuing seizures

you aren't suppose to have any caffine when you do an eeg...no coffee, chocolate, soda

Re: Normal EEG but continuing seizures

I agree! The importance of no caffeine before an EEG is due to the fact that abnormal activity most commonly shows up when you are transitioning from wake to sleep, so you want to be able to fall asleep during the EEG. EEG techs use sleep as an activation procedure, as well as hyperventilation and photic stimulation during the EEG.

Re: Normal EEG but continuing seizures

For Day time eegs, they always request not to drink caffeine. Every time I have been in the hospital for a veeg and they have kept me up all night, I was allowed to have caffiene to drink throughout the night. It was just important that I stay awake for the full 24 hrs.

When it comes to siezure activity, I have always had a few tiny bursts of siezure activity showing up on my eegs, even when I wasnt having any siezures at all. Thats just the way my brain is. One thing that people need to remember with eegs though, they are only a small snapshot of what your brain is doing. Just because there was no activity during the 20 or 30 min during the eeg, doesnt mean there wasnt some activity minutes or hours before or after the eeg. Now that my siezures have become uncontrolable, I average 32 - 38 bursts of siezure activity on an eeg plus any actual siezures that may or may not occur during that time. Our brains are really fasinating when you think about it. My doctor has given me cds with my eegs on them. I have been having eegs for 45 yrs and they have fasinated me since I was a little girl. I have always loved going thru the old paper copies with the eeg techs and than the docs looking for and talking about the spikes. CDs are as much fun as the big accordian stack of paper was. 

GOD BLESS,

BANFFGIRL,

I HAVE A ELECTRIC PERSONALITY, MY BRAIN IS SELF CHARGING!!

Re: Normal EEG but continuing seizures

eegs are a good thing if you are seizing.  they tend to read as normal in most people.  it says nothing other than at that time there was no seizure activity.  I had normal eegs for 37 years.  then they finally found out that i had epilepsy.  They had been treating me and had diagnosed me 37years earlier.  they just happened to catch it. 

Seizures can change at any time. different spot on the brain can be the sourse of the seizure.  Medications can loose there ability to control seizures at any time.

The best is to not have seizure activity.  whatever it takes.  control is the goal.  it just may be time to find a new medication.  You and your doc put your heads together and find something that works for you both,   rikk

Re: Normal EEG but continuing seizures

My first standard scalp applied EEG was normal and no one told me not to drink caffeine or not to eat specific foods, etc... and it was before I was put on AEDs

The second scalp applied EEG was a Sleep Deprived and it too was normal and I was on AED at the time and had been for some time.  I wasn't told to not take the med or any other restriction other than sleep.

I then had a 3 day Ambulatory EEG, scalp applied and again... normal.

I didn't have any seizures while undergoing any of the EEGs.  However, the 2nd and 3rd set... a few days to a week later... I did have a seizure. 

I don't have seizures daily or weekly.  So, unless I'm literally having one while the scalp applied electrodes are attached... it won't show anything.

The only thing left, according to Neuro, is a Video-EEG in a monitoring unit.  I'd literally have to stay nearly a month because when they were not controlled on Topamax, I was averaging 2-3 per month - sometimes I'd only have 1.  There is no rhyme or reason to when or why they occur.  Hormones was ruled out by Neuro.

I have no job, no money, and no insurance so staying for 5 days much less 30 is impossible.  I also have no family or friends to sit with me round the clock in the monitoring unit.  It's not that I won't undergo it, it's that it is just not practical or doable for me all so that the Neuro "might" catch one.  I simply don't have them daily or weekly.

I've also known of folks who have undergone Video-EEG for upwards of 2 weeks and didn't have a seizure while there.  They still were diagnosed with Epilepsy and still treated for Seizures.

 

Re: Normal EEG but continuing seizures

Hi Pewter,

Thanks for sharing your experience. Hope your seizures come under control soon. Best of luck.

Amazon

Re: Normal EEG but continuing seizures

according to my last neuro appointment... again, thought to be psychosomatic even though he would not do any further eegs... would not consider any deep seizure activity that a scalp applied eeg won't necessarily pick up... did agree that a EEG won't pick up any seizures in the body if you aren't having one at the time of the testing... agreed my MRI scans showed some abnormalities conducive to seizure possibility but alas... this one thought no point in doing a video monitoring now that I'm unemployed and laid off and could sit up in the unit for 14 days... just written off as having psychosomatic seizures and he refused to offer anymore assistance to me though my seizure characterisitics have changed and frequency has returned while on Topamax (had gone 6 months without any while on the med then suddenly...).  So, i am to have the "spells" and if anything changes or worsens i'm welcomed to return.  So, i can have the "spells" and hope nothing serious occurs while having them for i'm not supposedly really having them.

Re: Normal EEG but continuing seizures

 

The truth about Psychogenic Non Epileptic Seizures vs Epileptic Seizures.....You must know which kind you have before you can be treated click on this link...

 http://professionals.epilepsy.com/page/ar_1116430870.html

Re: Normal EEG but continuing seizures

Sometimes people with seizures can have normal EEG's because the EEG only reads 3-5 mm into the cortex. The EEG will not pick up deep-brain seizure activity. I am a recent graduate from a Neurodiagnostic program and we discussed this topic quite often in my EEG classes. During my rotation in EEG, I have seen A LOT of EEG's where the patient is hooked up, and they never have a seizure during the test, even though they are sleep deprived. If you don't mind me asking, what type of seizures do you have? How have they changed in presentation? Have all of your EEG's been normal in the past?

I hope this information helps you out!

Thanks

Re: Normal EEG but continuing seizures

I'm not sure if you still read this thread or not, but I would love to ask you a couple of questions about EEG testing, if you don't mind (or if anyone else has knowledge of the ins and outs of the technical aspects of EEG testing, feel free to respond!!)

1. How common is it to do invasive EEG testing/monitoring (where they somehow, somewhere stick and electrode "inside" (your head??) to detect activity from the deeper structures of the brain?

2. What are the risks with an invasive EEG?

3. Are there other ways to detect activity from the deeper structures?

4. Would an MRI or other "external" test (SPECT, MEG) give the same info.?

5. Several of the characteristics of FLE seem to fit the type of sz I have, and my research indicates that EEGs can be normal in these cases. Is this because the focus is too deep for routine (non-invasive) EEG, or some other reason?

I also created a new thread entitled ("technical questions about EEG testing") under 'diagnostic testing and dilemmas', in hopes of catching the attention of potential responders).
Thanks for your help.

Re: Normal EEG but continuing seizures

Hi,

 

I read you reponse and have a question. My last EEG about 3 weeks ago came back normal my first 2 were abnormal. I was diagnosed with partial onset TLE 2 years ago. In August I had at least 10 minor seizures and 1 seizure that last 5 minutes with positical for 20 minutes. Last week I went like a rag doll at work so I think I may have had an Atonic Seizure. What is the cause for all of this??? I am taking my AED like I am suppose to and it is still happening. I was told with TLE it is hard to pin point it on an EEG unless you are in a seizure or just coming out of one. Another thing is I use to not mind having a picture taken but now I a flash hits me and it feels like someone just drove nails into my eyes and thru the back of my skull. I hope that maybe you can shed some more light on this.

 

Neil

Re: Normal EEG but continuing seizures

 

My husband is a veteran and has PTSD from combat, was treated for epilepsy for 12 months with Depakote that caused more seizures and almost killed him. Just found out that his seizures are Psychogenic-NonEpileptic seizures and are caused by stress, and can NOT be controlled with anti seizure medication. His EEG also was normal, and we did inpatient EEG Video Monitoring 3 weeks ago with the doctor who wrote the article below. My husband's start with a stress or panic, then he paces and stares before slowly falling to convulsions....UNLIKE an  Epileptic seizure where there is no warning because it is due to an electro abnormality in the brain, which should show on the EEG. His seizures stopped and his treatment is 5mg valium as needed and psychiatric treatment to deal with the stress he's been through.

If you want to talk to the best click on the link below and find out which kind of seizures you are having!!!

 http://professionals.epilepsy.com/page/ar_1116430870.html 

Re: Normal EEG but continuing seizures

For one, you aren't supposed to have any caffeine when you have EEG's. The whole point of sleep deprivation eeg's is to get you tired enough so then can try to induce a seizure.  I'm not sure if that would cause a normal EE or not, but I know there's a reason they say not to drink caffeine.

 I am having seizures with normal eeg's too and have been referred to an epilepsy specialist at Mayo. I know the doctor says that even if they don't catch a seizure on an EEG, there is still abnormal brain activity to hint at epilepsy (or at least that's what I understand. My neurologist sometimes talks way too fast for and I get confused and have memory loss).  However, the neurologist did tell me that people can have seizures and still have normal EEG's.

Re: Normal EEG but continuing seizures

rbeau: Do you mind letting me know about your experience at the Mayo clinic?? If I don't get anywhere with my second neuro. (my first one says because my sz are worse during my period and can be aggravated by stress/fatigue that they are psychogenic, however I know in my gut that they are not), I plan to pay for services at a place in the US, like Mayo Clinic. I live in Canada, but if paying for top-notch testing and advice is the only way to go, than I will do it. Whether you or your insurance is paying for it, can you let me know the cost as well??

Re: Normal EEG but continuing seizures

I had a long struggle with confusion myself. I had a series of EEGs over many years. Early EEGs were declared normal or Within Normal Limits or Artifact.  But I kept having problems. Some Neurologists speculated I was having deep seizures, like someone on here mentioned, the ones that can't be reached.  Finally a few years ago, I guess it was the right place, right time because it was a random EEG and Bam, there they were. Clearly electrical abnormalities.  Then it was repeated on follow up 24 hour test and then again on follow up 3 day test.

  Then here's the weird part. Two years later I was having trouble with my headaches, migraines, and such and I ended up having a 5 day EEG as part of this work up to see if the seizures were the problem. They took me off the meds and everything. (Just while I was in the hospital, but still.) Nothing happened. Go figure.

Then fast forward, two years later, I am having another random EEG b/c to check on my seizures since I am complaining of cognitive impairment and fatigue and Bam, all over the place clearly abnormal electrical misfiring. So I get another 3 day EEG. And yep. More clearly abnormal electrical Abnormalities. And all the abnormal tests agree with each other about what type of seizures and where they are located. 

  So who knows. I personally think that it was there all along. It just had to get bad enough to be seen on film, so to speak. At least that's what it felt like to me. I hope that's not what happens to you, but if it is, I hope you find the help you need. And listen to your gut. Don't let people make you feel like you are going crazy.