Epilepsy Talk

Conditions Commonly Misdiagnosed as Epilepsy | February 17, 2010


A moment of unresponsiveness — the inability to recall what just happened…convulsions or jerking movements…sudden stiffness of the body.  These are classic symptoms of an epilepsy seizure — triggered by abnormal electrical impulses in the brain.

And while these symptoms may indicate epilepsy, other brain abnormalities or injuries could also lead to seizures.

Having a seizure doesn’t automatically mean you have epilepsy.  And without testing, the diagnosis – or misdiagnosis – can be pretty scary.  There are loads of conditions that have symptoms similar to epilepsy.  Here are the most common…

First Seizures

A first seizure is just what it sounds like — the first seizure a person has. The underlying cause may be determined to be epilepsy, but often the cause can’t be determined.

These isolated seizures are not rare events — up to 5 percent of people in the United States may experience a first seizure that isn’t due to fever or epilepsy. A first seizure typically occurs before age 25, with most taking place in those younger than 15. First seizures seem to strike males a little more often than females, and they may not have a specific or detectable cause. However, a first seizure can affect part of or the entire brain.

Febrile Seizures

These seizures are caused by high fevers, and occur most commonly in infants and young children. Febrile seizures are quite common, affecting 1 in 25 children. The chances of having another febrile seizure are 25% to 30%. While frightening, these seizures don’t cause brain damage or otherwise harm children.

During the seizure, the child may be unconscious, shake, and convulse. Febrile seizures can last longer than 15 minutes or less than a few seconds, but most commonly last one to two minutes.

Febrile seizures typically strike when a child is between 6 months and 5 years old, but they most often occur during the toddler years. These types of seizures may recur during childhood but are usually outgrown.

Nonepileptic Seizure Disorder (NESD)

Nonepileptic events look like seizures, but actually are not. Conditions that may cause nonepileptic events include narcolepsy  (a sleep disorder which causes reoccurring need of sleep during the day), Tourette’s syndrome (a neurological condition characterized by vocal and body tics), abnormal heart rhythms (arrhythmias) and other medical conditions with symptoms that resemble seizures.

Because symptoms of these disorders can look very much like epileptic seizures, they are often mistaken for epilepsy. Distinguishing between true epileptic seizures and nonepileptic events can be very difficult and requires a thorough medical assessment, careful monitoring, and knowledgeable health professionals. Improvements in brain scanning and monitoring technology will hopefully improve diagnosis of nonepileptic events in the future.

When someone appears to have seizures, even though their brains show no seizure activity, they are diagnosed as having pseudo seizures which basically means they look like a seizure but aren’t one.

Seizures that are psychological in origin are often called psychogenic seizures. These seizures are most likely triggered by emotional stress or trauma. Some people with epilepsy have psychogenic seizures in addition to their epileptic seizures. It’s a legitimate seizure and should be treated that way, but it is not caused by a problem in the brain.

Then there are physiologic nonepileptic seizures which can be triggered by some sort of change in the brain — typically a change in the supply of blood or oxygen rather than electrical activity.

It’s important to differentiate a seizure from that of a behavioral disorder, but it’s difficult.

Mental Health

Epilepsy can be misdiagnosed as schizophrenia.  Some patients suffer hallucinations and other similar symptoms, or even severe psychotic symptoms, making a misdiagnosis of schizophrenia possible. Mood changes and behavioral symptoms also make a misdiagnosis of bipolar disorder possible.

Some of the other possible misdiagnoses include depression, borderline personality disorder, multiple personality disorder, hypochondria, sexuality disorders, and hysteria.

Eclampsia

Eclampsia is a dangerous condition suffered by pregnant women. The symptoms include seizures and a sudden rise in blood pressure. A pregnant woman who has an unexpected seizure should be taken to the hospital immediately. Eclampsia occurs in about 1 out of every 2,000 to 3,000 expectant women. The seizures cause convulsions or changes in personality such as agitation.  After the eclampsia is treated and after the woman has the baby, she usually won’t have any more seizures or develop epilepsy.

Meningitis

Meningitis is an infection that causes swelling of the membranes of the brain and spinal cord, most often caused by a virus or bacteria. Viral infections usually clear up without treatment, but bacterial infections are extremely dangerous and can lead to brain damage and even death. Symptoms of meningitis include fever and chills, severe headache, vomiting, and stiff neck.

Encephalitis

Encephalitis is an inflammation of the brain and is usually caused by a viral infection. Symptoms include fever, headache, vomiting, confusion, and stiff neck.

Migraine

Migraine is a type of headache thought to be caused, in part, by a narrowing of blood vessels in the head and neck, which reduces the flow of blood to the brain. People who have migraines may also have auras and other symptoms, including dizziness, nausea, and vomiting. Certain conditions may bring about a migraine, including allergies, menstrual periods, and muscle tension. Some foods, including red wine, chocolate, nuts, caffeine, and peanut butter, can also cause a migraine.

Sleep Disorders

According to the Cleveland Clinic, about 75% of the adult population in the United States suffers from some type of sleep disorder. These include sleep apnea…insomnia…restless legs syndrome…narcolepsy… sleepwalking…talking in one’s sleep…sleep paralysis…mild and chronic muscle spasms that occur during sleep…and night terrors, to name just a few.

Brain Injury

Although the symptoms of severe brain injury are hard to miss, it is less clear for milder injuries, or even those causing a mild concussion. The condition goes by the name of “mild traumatic brain injury” (MTBI). Symptoms can be mild, and can continue for days or weeks after the injury.

Post-concussive brain injury is also often misdiagnosed.  A study found that soldiers who had suffered a concussive injury in battle often were misdiagnosed on their return. A variety of symptoms can occur in post-concussion syndrome and these were not being correctly attributed to their concussion injury.

In addition, a brain tumor or an infection in the brain, can be mistaken for epilepsy.

Cardiac Disorders

EEGs alone may not clearly distinguish epilepsy from cardiac disorders. Numerous studies point to a connection between SUDEP, Unexplained Death in Epilepsy and cardiac problems. More extensive evaluation by a cardiologist can help identify cardiac disorders which may be an underlying cause of an individual’s seizures.

TIAs

Transient Ischemia Attacks are caused by a sudden diminished blood flow in some areas of the brain that may be stroke related. Seizure-like symptoms may include changes in consciousness, speech or vision problems.

Failed Drug Therapy

If trials of different anti-seizure medications fail, it could be because the cause of the seizures is not epilepsy.

EEGs

EEGs alone are not sufficient to make a definite diagnosis of epilepsy. It is not a sensitive enough diagnostic tool to distinguish many disorders which cause epileptic seizures. When anticonvulsants don’t control seizures or there is a question about the diagnosis of epilepsy, the neurologist, patient, or care giver must seek further evaluation to find the underlying cause of the seizures.

Simple Mistakes

And then, of course, there is the element of human error.  Changes in metabolism – such as low blood sugar — from health conditions like kidney and liver problems can present as a seizure.  Drug use or withdrawal from alcohol can be construed as epilepsy.  A congenital health problem, like down’s syndrome, stroke or alzheimer’s disease may be misdiagnosed.

The bottom line?  Make sure you have a good neurologist or epileptologist…get thorough testing…keep a seizure diary…and be pro-active.

Additional articles of interest:

Beyond EEGs…Diagnostic Tools for Epilepsy

http://epilepsytalk.com/2010/09/13/beyond-eegs%E2%80%A6diagnostic-tools-for-epilepsy-2/

The 2013 Comprehensive List of GOOD Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors

http://epilepsytalk.com/2013/01/02/2013-comprehensive-list-of-good-neurologistsepileptologistsneurosurgeonsand-pediatric-doctors/

2013 Top Ranked Neurology and Neurosurgery Hospitals — For Adults and Children

http://epilepsytalk.com/2013/01/03/2013-top-ranked-neurology-and-neurosurgery-hospitals-for-adults-and-children/

To subscribe to Epilepsytalk.com and get the latest articles, go to the bottom box of the right column and click on “Sign me up!”

Resources:

http://www.everydayhealth.com/epilepsy/understanding/when-are-seizures-not-epilepsy.aspx

http://www.webmd.com/epilepsy/conditions-similar-to-epilepsy

suite101.com/article/epilepsy-misdiagnosis-is-common-a108165

http://www.wrongdiagnosis.com/e/epilepsy/misdiag.htm#misdiagnote


76 Comments »

  1. Hi Phylis,

    Thank you for doing your research. I did not know all of these reasons for seizures.

    I noticed on febrile seizures that one can last 15 minutes or less than a few seconds. If a febrible seizure last 15 minutes, wouldn’t that cause brain damage?
    Ruth

    Comment by Ruth Brown — February 17, 2010 @ 5:54 AM

  2. Here’s what the Mayo Clinic says at http://www.mayoclinic.com/health/febrile-seizure/DS00346/DSECTION=complications

    “Although febrile seizures may cause great fear and concern for parents, most febrile seizures produce no lasting effects. Simple febrile seizures don’t cause brain damage, mental retardation or learning disabilities, and they don’t mean your child has a more serious underlying disorder.

    Febrile seizures also aren’t an indication of epilepsy, a tendency to have recurrent seizures caused by abnormal electrical signals in the brain. The odds that your child will develop epilepsy after a febrile seizure are small. Only a small percentage of children who have a febrile seizure go on to develop epilepsy, but not because of the febrile seizures.

    Recurrent febrile seizures
    The most common complication of febrile seizures is the possibility of more febrile seizures. About a third of children who have a febrile seizure will have another one with a subsequent fever.”

    Comment by Phylis Feiner Johnson — February 17, 2010 @ 9:42 PM

  3. Looking over different conditions still unclear of what my 13yr old daughter has. Seizures started last fall,1 per mo. Then EEG,slight abnormalities. MRI-showed nothing substantial.
    Placed on Kepra, seizures became more violent. increase in Kepra, more seizures..Changed to Trileptal-2wks no seizure then 1 per week. increase Trileptal. seizures 2x per wk added zonisamide.Seizures continued @ 2x but much worse. Taken off all meds & hospitalized for video eeg 6days. then 2days w/portable unit bk to school.no seizures for 3wks 2days on no meds.Just had one May 3rd. Full body. Dr.s suggest child psyc? Seizures seem to happen only @ skl & a few @ youth grp. I am very puzzeled trying to figure out my next step. I would appreciate any suggestions.
    Thank you, Chris

    Comment by Chris Gonzales — May 5, 2010 @ 10:19 AM

  4. First of all Chris, let’s remember that she’s a teenager and her hormones are probably out of whack.

    For many women, certain hormones seem to trigger seizures at particular times in their menstrual cycle. It can be during ovulation or menstruation and it’s known as “catamenial epilepsy.” So that MAY be a contributing factor

    Although psychological(psychogenic)seizures are most likely triggered by emotional stress or trauma, some people with epilepsy have psychogenic seizures in addition to their epileptic seizures. It’s a legitimate seizure and should be treated that way, but it is not caused by a problem in the brain.

    If it were me, I’d start a daily diary, noting activities, behaviors, sleeping and eating patterns, as well as when the seizures happen, how long they last and what happens afterwards. Then I’d take it back to the neuro and see if he/she can get a clue of what’s going on.

    Talk therapy certainly has helped me. Plus my shrink is a psychiatrist, so he can change my meds based upon depression. (Research shows that 80% of patients with epilepsy also have some kind of a depressive disorder. Upwards of 60% have a history of significant episodes of depression. And 10-32% experience symptoms of anxiety.)

    As for meds: I’m on Lamictal which at its lowest level is for anti-anxiety, the next level acts as an anti-seizure med and the top level is for bi-polar people. (I take it in the AM because it got me too hyper at night, but it’s different for each person.) That’s supplemented at night with Klonopin which is an anti-seizure, anti-anxiety drug.

    So talk therapy and that magic mix of meds are what works for me at this point. And I’ve had epilepsy for 40 years!

    Good luck. Let us know how things progress…

    Comment by Phylis Feiner Johnson — May 5, 2010 @ 7:59 PM

  5. Hi Chris, I am sorry that you are on the medicine merry-go-round. That is miserable trying to find out what medicines work and which ones do not. Any time their is an increase of seizures with a medicine, report it to her doctor.

    The EEG did show up seizure activity, so she does have epilepsy.

    Since the V-EEG did not show up anything, that means that she has the same thing I do. I have both epilepsy and NEST (non epileptic seizure disorder), psychcogenic.

    I do not have therapy but most people do. It is more common than you think. Most people do not want it out in the open. That is why most people do not know about it. Be open and educate other people.

    I am on Lamictal, Neurontin, Mysoline, Keppra and clonazepam. They work for me. Everyone is different. I have had epilepsy for 61 years, now.

    Let us know if we can help you, in any way.

    Comment by Ruth Brown — May 5, 2010 @ 10:31 PM

  6. Dear Troubled,

    Here are some links which will help you better understand psychogenic seizures:

    http://my.epilepsy.com/node/4232

    http://my.epilepsy.com/node/78

    http://hsc.usf.edu/com/epilepsy/pnesbrochure.pdf

    http://www.wrongdiagnosis.com/p/psychogenic_nonepileptic_seizures/intro.htm

    Hope this helps!

    Comment by Phylis Feiner Johnson — May 13, 2010 @ 6:04 AM

  7. Hi Troubled,

    I have both epilepsy and NEST (non-epileptic-seizure-disorder.) I also have diabetes which has seizures as well:

    http://www.isletsofhope.com/diabetes/complications/seizures_1.html

    Do not be troubled about it. I have had seizures for 61 years now. I have learned to have a positive attitude toward it. I take it as it comes.

    My friends accept me as I am. Since I was 6 years old, I told everyone that I had epilepsy. I still do. My neighbors accept me as I am and so do my friends.

    Phylis has a subject on triggers in her website here. You might want to see what they are to help stop seizures.

    Remember, Laughter is the best medicine.

    Comment by Ruth Brown — May 15, 2010 @ 5:14 AM

  8. I was insulted today. I was told that someone was faking their NEAD seizures. I have been accused of the same thing at the ER room. They have even taken the fact that I have epilepsy off of my hospital charts.

    I have both epilepsy and NEAD. They are real, not fake. I am going to have a V-EEG to prove that I have both.

    Comment by Ruth Brown — July 21, 2010 @ 5:06 AM

  9. Ruth, as you know, some people with epilepsy have psychogenic seizures in addition to their epileptic seizures. That doesn’t mean they’re not real.

    And if they just did an EEG to evaluate you, it’s pretty useless because the EEG is mostly superficial and doesn’t go very deep into the brain.

    An EEG can help identify the location, severity, and type of seizure disorder. But an abnormal EEG does not diagnose epilepsy nor does a normal EEG reading exclude it.

    I think a V-EEG is a good idea. It’s much more precise because seeing EEG and video data at the same time permits precise correlation between seizure activity in the brain and the patient’s behavior during seizures.

    Video-EEG can also be vital in the diagnosis of epilepsy and epileptic seizures because it allows the doctor to determine:

    Whether events with unusual features are epileptic seizures…

    The type of epileptic seizure, and…

    The region of the brain from which the seizures arise.

    Comment by Phylis Feiner Johnson — July 21, 2010 @ 7:43 PM

    • At 17yo,had beer,pot,cocaine, then had first two seizures. Diagnosed in ’74 to have complex parial epilepsy, all Anti Epileptic Medicines (25+) were untheraputic. ’96 L.temp.Lobectomy was totally unsuccessful. No EEG ever saw a seizure. I hope my seizures were nonepileptic, and I never needed any before and won’t need any more medicine in future.

      Comment by Tim B — September 13, 2010 @ 10:48 PM

      • Hi Tim,

        Welcome. This is a tough one. Although the beer, pot and coke are definitely triggers, you didn’t start having seizures until 7 years later. I assume you were one of the 30% of people with epilepsy who was “drug-resistant.” (Possibly from your former recreational drugs.)

        And the surgery was not succesful. Did you have any other testing than the EEG? Because EEGs are definitely not the be all and end all of diagnostic testing. (Was this neurosurgeon a little bit Knife Happy”?)

        Anyway, you probably should have some more diagnostic testing to see where you stand at this point.Go to http://epilepsytalk.com/2010/09/13/beyond-eegs%e2%80%a6diagnostic-tools-for-epilepsy-2/ and see if that helps.

        You definitely sound like you’re in limbo and need to know more. Denial won’t make it go away. :-(

        Comment by Phylis Feiner Johnson — September 14, 2010 @ 12:30 AM

      • Everybody,
        As I said before “At 17yo,had beer,pot,cocaine, then had two seizures. Diagnosed in ’74” Was still 17yo, that isn’t 7 yrs later, so it’s likely that these seizures were possibly due to withdrawal from either alcohol or drugs. My use of over 25 different Anti Epilepsy Drugs is possibly due to my not having epilepsy in the first place. It took many tests for a doctor to find what he determined to be seizure focus. But the operation he designed didn’t work. Tim B

        Comment by Tim Baldwin — October 4, 2013 @ 11:04 PM

  10. I do have both epilepsy and NEAD. It was an EEG that the doctor went by. At that time, I did not have a seizure so nothing showed up. So, it showed that I was not having seizures at the time of the EEG.

    I should have had an EEG done before the colonoscopy while I was having seizures.

    I am going to tell my GP and neurologist that they have taken off the fact that I have epilepsy. Both of them know that I have epilepsy. I will ask for a V-EEG.

    Comment by Ruth Brown — July 22, 2010 @ 9:52 AM

  11. I agree. A V-EEG would be much more accurate…

    Comment by Phylis Feiner Johnson — July 22, 2010 @ 7:18 PM

  12. I see my neurologist in August. I will ask for one then.

    Comment by Ruth Brown — July 24, 2010 @ 9:46 AM

  13. Phylis Feiner Johnson,

    Thank You for having seen that the beer, pot & cocaine are triggers. The first seizure was began when 17 y.o. in ’74, then around 45 days I had a second seizure and was diagopsed. Use of drugs, the first two seizures and was diagnosed were in two months of 1974.
    Timothy Baldwin

    Comment by Tim B — September 14, 2010 @ 1:52 AM

  14. Phylis Feiner Johnson,
    Yes, for at least thirty years I haven’t even drank an oz. of alcohol or any drugs other that those prescribed to stop seizures. I think my continued seizures are possibly caused by intake of those medicines that work to prevent too many electonic messages from nueron to nueron. Can the
    constant prevention of seizures cause there to be a number of mild/quick/unknown seizures to take place for 1/2-10 seconds. Then you have no idea of them and only notice one every 5 weeks. Could it be that you’d then loose awareness when driving and maybe go straight, instead of following the roads left hand turn? Tim Baldwin

    Comment by Tim B — September 14, 2010 @ 3:50 AM

    • yes you could Tim , loose awareness, while driving .. stay safe ..

      Comment by cathy — August 11, 2014 @ 1:36 AM

  15. Hi Tim, I think what you’re experiencing is “absence seizures” and, if so, you should tell your neuro.

    What you could do is keep a daily seizure dairy where you note your sleep patterns, what you ate, activities, drug dosages and when taken…how you feel after taking the drugs prescribed…how you feel before, during and after a seizure (if you can remember), plus the duration.

    That could help him figure out whether the seizure meds are indeed acting as a trigger for you.

    And please, don’t go “straight” into a tree! ;-)

    Phylis

    Comment by Phylis Feiner Johnson — September 14, 2010 @ 6:23 AM

  16. My son have had 6 seizure all seizures always cos by fever and seizure cos early morning only. we did eeg 2 times its show normal and the third time its show abnormal. now doctor want my son to do mri to diagonise so i really dont know whether my son have epiliapsy problem. pls help to reply.

    Comment by laxmi thongmakmai — April 25, 2011 @ 9:29 AM

  17. Hi Laxmi,

    How old is your son? Could it be FEBRILE SEIZURES?

    Usually these are caused by high fevers, and happen most commonly in infants and young children — between 6 months and 5 years old, but they most often occur during the toddler years. They may recur during childhood but are usually outgrown.

    The chances of having another febrile seizure are 25% to 30%. How many seizures has your son had and in what space of time?

    Also, HIGH FEVERS in children can commonly incite a seizure. Vomiting, diarrhea, and fever are all triggers.

    As for EEG’s — an abnormal EEG does not necessarily diagnose epilepsy nor does a normal EEG reading exclude it.

    I know a man who had 5 EEGs before he was properly diagnosed with Video EEG Monitoring.

    The MRI is meant to go one step further in the diagnosis of your son. (As I said, I think EEGs are pretty worthless but that’s where they start with testing.)

    MRI (Magnetic Resonance Imaging) – is a safe and non-invasive scanning technique that uses a magnetic field, radio waves and a computer to produce two or three-dimensional images of the brain.

    This detailed picture of brain structures helps physicians locate possible causes of seizures and identify areas that may generate seizures.

    No X-rays or radioactive materials are used, therefore this procedure is not known to be harmful.

    An MRI offers doctors the best chance of finding the source of seizures. Because seizures can arise from scar tissue in the brain, an MRI can show scar tissue and allow doctors to determine the nature of it.

    The images produced from the MRI are extremely precise. The information provided by MRI is valuable in the diagnosis and treatment of individuals with epilepsy and will probably help them determine an exact diagnosis for your son.

    So, even though it sounds bad, this is actually a GOOD thing…because the docs are taking care to find the root of your son’s and properly diagnosis and treat his condition.

    Best of luck. Let me know how things turn out.

    Comment by Phylis Feiner Johnson — April 25, 2011 @ 10:09 PM

  18. There’s also a rare frequently misdiagnosed form of epilepsy called Transient Epileptic Amnesia T. E. A.
    Transient Epileptic Amnesia involves recurrent episodes of transient amnesia. The attacks often occur upon waking, do not affect other cognitive abilities such as perception, language or judgment, and typically last about half an hour. The attacks are sometimes associated with olfactory hallucinations. Between amnestic episodes, the patient notices a gradual deterioration in his recall/her of remote events, despite normal performance on standard memory tests.

    http://sites.pcmd.ac.uk/time/tea.php

    Comment by Sue — September 25, 2011 @ 10:54 PM

  19. Oh Sue, that sounds AWFUL. Do you have this?

    Comment by Phylis Feiner Johnson — September 26, 2011 @ 2:32 PM

  20. Dear Phylis,

    I found my 7 year old son last friday morning in his bed face down sleeping and snoring. I tried waking him up but with no success. I checked his pulse and breathing and laid him on the side. I ran to my wife (in meantime he urinated) and we tried waking him up together – shouting, slapping but still with no result. After 3 minutes we called 911. We stayed by his side and left him asleep untill they came. They checked blood sugar, talked loudly but stil with no success. They carried him into medic van to take him to ER. Before they started the engine he woke up by himself and not as a result of any action (about 30 minutes after I found him). He was immediatelly fully aware of sorroundings, not confused, could introduce himself. In ER nothing special occured. He was still completely aware of all that was going on and communicating with everyone. He said that he very much enjoyed the ride in medic van. After check he was tired and had a 30 minutes nap. On the same day EEG and CT tests were made. He stayed in hospital. Next evening we were introduced with diagnosys of epilepsy, generalised epileptiform activity. The doctor said it is a severe case and prescribed Depakine chrono. He is scheduled for MRI on Dec. 2nd.
    It is not good news but since we cannot turn back time I am facing new future and trying to get as much information as possible in order to understand it.
    MY QUESTION: I want the accuratest possible diagnosys so we can apply right steps in order to provide the best treatment. But I fear that maybe there is some other issue which doctors did not look for and remains unindentified. What do you recommed as further steps and what is your comment based on information provided?
    You are the first person I am contacting via internet and I am kindly asking you to help me or put me into contact with people who can.
    Best regards from beautiful Slovenia!

    Comment by Sebastjan Gračner — October 20, 2011 @ 9:25 PM

    • I’m not a doc, but at least you can look at “Beyond EEGs…Diagnostic Tools for Epilepsy”

      http://epilepsytalk.com/2010/09/13/beyond-eegs%e2%80%a6diagnostic-tools-for-epilepsy-2/

      to know what your testing options are. If it was me — which it isn’t — I would recommend a Continuous Video EEG Monitoring where a patient stays in a special unit for at least 24 hours. Antiepileptic medication is stopped for the duration of this test, since the objective is for seizures to occur so the abnormal brain waves they produce can be recorded.

      A video camera connected to the EEG provides constant monitoring, enabling the medical team to pinpoint the area where a seizure occurs and track the patient’s physiological response to the seizure. Continuous monitoring can also help distinguish between epilepsy and other conditions. It can characterize the seizure type for more precise medication adjustments and locate the originating area of seizures within the brain.

      Also http://www.epilepsy.com has a wealth of information in the orange bars to the left. But be careful. Don’t try to play doctor. Just try to keep a diary of the seizures (if any more occur), what precipitates them (triggers? auras?) and how long they last, plus your son’s reaction/behavior afterwards.

      The best of luck. And please let me know what happens.

      Comment by Phylis Feiner Johnson — October 20, 2011 @ 11:40 PM

      • Dear Phylis,

        Thank you for quick and comprehensive reply.
        We are hoping for video EEG in November.
        And after MRI in December we will have more information about son’s condition.
        Will keep you informed.
        Thank you for now.

        Comment by Sebastjan Gračner — October 22, 2011 @ 11:50 AM

      • Fingers crossed. Glad to hear about the video EEG.

        Comment by Phylis Feiner Johnson — October 22, 2011 @ 1:29 PM

  21. [...] a previous article titled “Conditions Commonly Misdiagnosed as Epilepsy” http://epilepsytalk.com/2010/02/17/conditions-commonly-misdiagnosed-as-epilepsy/ I thought I had it all [...]

    Pingback by If You DON’T Have Epilepsy, Then WHAT Is It??? « Epilepsy Talk — January 31, 2012 @ 11:20 PM

  22. I feel your annoyance. I never had any luck whatsoever with this kind of thing,
    either. So happy to know I am not all by my
    lonesome!

    Comment by Bipin Sekhon — September 2, 2012 @ 5:06 AM

  23. Sigh. Well Bipin…I guess many people share the same problems. That’s why we’re all here for one another…

    Comment by Phylis Feiner Johnson — September 2, 2012 @ 12:39 PM

  24. Just found your site. I’ve had 2 seizures. Both during sleep. My husband said that both times I was stiff, made a distinct humming sound and eyes rolled back. No movement. EEG was normal and no cause known. I’m not convinced they were seizures. On lamotrigene, and no seizures since. Is this like anything you’ve heard described before? Trying to understand more about what’s happening and whether it is or is not a seizure. Thanks.

    Comment by Beth — January 25, 2013 @ 2:02 PM

  25. Welcome Beth!

    First of all, an EEG is not the be all and end all of diagnostic testing.

    I know of people who have had 5 EEGs, only to be properly diagnosed when they finally had Video EEG Monitoring. So if someone is trying to pass you off or is ignoring your symptoms, perhaps you should become a little more familiar with your diagnostic options…

    Beyond EEGs…Diagnostic Tools for Epilepsy

    http://epilepsytalk.com/2010/09/13/beyond-eegs%e2%80%a6diagnostic-tools-for-epilepsy-2/

    It sounds to me as if you’re having Nocturnal Seizures.

    Nocturnal epilepsy is a seizure disorder in which seizures occur only while sleeping.

    Several common forms of epilepsy, including frontal lobe epilepsy, can manifest in a nocturnal state.

    Epilepsy can be nocturnal if one only has seizures while you are asleep, or if you normally have seizures that occur at the same time.

    In the latter example, if you stay awake at a time when you are usually asleep, you can have the seizure while awake.

    The condition may be difficult to diagnose. You may be unaware that you are having a seizure disorder.

    To others, the involuntary movements made during sleep may appear no different than those typical to normal sleep.

    One who suffers a nocturnal seizure may notice some unusual differences upon awakening in the morning, such as a headache, having wet your bed, having bitten your tongue, a bone or joint injury, or lightheadedness.

    Others may notice unusual mental behaviors, consistent with the aftermath of a seizure.

    There may also be objects in the vicinity of the bed knocked on the floor, or you may be surprised to find yourself on the floor.

    Another thing to be considered is Sleep Apnea.

    Studies have shown that 10-45% of people with epilepsy have seizures that occur predominantly or exclusively during sleep, whereas 34% have seizures upon awakening and 21% have diffuse seizures (while both awake and asleep).

    Here are some specific epilepsy disorders that are closely related to sleep seizures…

    Frontal Lobe Epilepsy
    Temporal Lobe Epilepsy
    Juvenile Myoclonic Epilepsy
    Epilepsy with Generalized Tonic-Clonic seizures on awakening
    Rolandic Childhood Epilepsy with centrotemporal spikes

    Sleep apnea is when breathing stops briefly during sleep. It affects at least 2% of the general population. But it’s about twice as common for those with poorly controlled epilepsy than in the general population.

    It’s especially important to recognize and treat sleep apnea if you have epilepsy. Not only can the lack of sleep make your seizures worse, so can the lack of oxygen getting to your brain during sleep.

    Here are the full details…

    Seizures and Sleep Disorders

    http://epilepsytalk.com/2012/10/16/seizures-and-sleep-disorders/

    My suggestion is to get Video EEG Monitoring which allows prolonged simultaneous recording of the your behavior and the EEG.

    Seeing EEG and video data at the same time, permits precise correlation between seizure activity in the brain and your behavior during seizures.

    Video-EEG can be vital in the diagnosis of epilepsy and epileptic seizures. It allows the doctor to determine: Whether events with unusual features are epileptic seizures, the type of epileptic seizure, and the region of the brain from which the seizures arise.

    You also may want to consider a sleep study.

    I hope this helps rather than confuses you!!!

    Comment by Phylis Feiner Johnson — January 26, 2013 @ 11:13 AM

  26. I am really impressed along with your writing talents and
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    Comment by http://cowanglobal.com/category/charity — February 2, 2013 @ 12:37 AM

  27. Here’s the secret. The website is hosted by http://www.wordpress.com which provides a zillion templates, layout choices, and great administrative options.

    It’s the most user friendly web host around. (AND not expensive.)

    I must admit, it took me a while to get the visuals and tech stuff together. But happily, my husband is a geek. ;-)

    The website itself http://www.epilepsytalk.com is NOT commerical, but rather a labor of love, after writing as a commercial copywriter for 30 years.

    Comment by Phylis Feiner Johnson — February 2, 2013 @ 12:32 PM

  28. Greetings! I’ve been following your weblog for a long time now and finally got the bravery to go ahead and give you a shout out from New Caney Tx! Just wanted to tell you keep up the excellent job!

    Comment by roll off dumpster — February 24, 2013 @ 5:32 PM

  29. Thank you…and welcome!

    All compliments gratefully accepted. :-)

    If you want to subscribe to Epilepsytalk.com and get the latest articles, just go to the bottom box of the right column and click on “Sign me up!”

    Comment by Phylis Feiner Johnson — February 24, 2013 @ 6:11 PM

  30. You really make it appear really easy with your presentation however I find this matter to be really one thing which I think I would never understand.
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    Comment by rental trash dumpsters — February 27, 2013 @ 3:35 PM

    • 39 years of non therapeutic medicines and a unsuccessful removal of my l. temporal lobe. I wonder if
      I really have epilepsy or are my seizures mostly caused by medicines. Seizure frequency has improved ever since I changed from three to just using two meds. I wonder if I doctor will ever have me on just one? I’ll be getting my fourth 72hr. ambulatory EEG next week.

      Comment by Tim Baldwin — February 27, 2013 @ 9:15 PM

      • Tim, unfortunately seizures are a by product of brain surgery. So, if you don’t have epilepsy (which I think is doubtful), you do have seizures.

        I don’t know what kind of seizures you have, but I do know that finding the right mix of AEDs is a real crap shoot, since there are so many out there.

        Not that many people are on monotherapy. Many have a supplemental med to enhance or support or address what their other med does or doesn’t accomplish.

        I think an Ambulatory EEG is a great idea. Hopefully it will show you and your doc where you stand.

        And perhaps from there, you can discuss monotherapy.

        Good luck with your testing and let us know how everything works out.

        Comment by Phylis Feiner Johnson — February 28, 2013 @ 10:55 AM

  31. You’re right. It IS confusing, because there are so many “ifs.”

    Is there any specific question I can help you with?

    These links MIGHT be a little more helpful:

    Glossary of Epilepsy Terms

    http://www.webmd.com/epilepsy/glossary-terms-epilepsy

    Epilepsy-Misdiagnosis is Common

    http://suite101.com/article/epilepsy-misdiagnosis-is-common-a108165

    Common Misdiagnoses and Epilepsy

    http://www.rightdiagnosis.com/e/epilepsy/misdiag.htm#misdiagnote

    Comment by Phylis Feiner Johnson — February 27, 2013 @ 4:07 PM

  32. It’s truly a nice and useful piece of info. I’m satisfied that you simply shared
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    Comment by Visas for Overseas government employees — March 5, 2013 @ 8:05 PM

  33. It’s really a nice and helpful piece of information. I’m satisfied that
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    Comment by Sylvia — March 6, 2013 @ 7:30 PM

  34. Sylvia, that’s what we’re here for…to share and care..and help each other out.

    If you have a problem, a question, a gripe…or just need to talk, feel free to sing out.

    Comment by Phylis Feiner Johnson — March 6, 2013 @ 9:32 PM

  35. During my journey it took over 10 years to find out what was wrong with me. I had epilepsy, but was mis-diagnosed with a panic disorder, then stress disorder, and prescribed anti-anxiety and anti-depressants.

    Finally, I started seeing a psychiatrist. When I described one of my spells the psychiatrist told me it sounded more like a seizure. She referred me to an internist, and he had an EEG and an MRI done. The EEG showed “slight abnormalities”, but the MRI showed temporal mesial sclerosis (Scarring). This was the result of a concussion I had suffered about 2 or 3 years before the spells started happening. I had had an EEG done back then too, but it showed no abnormalities.

    Over the course of my journey, I have had 3 “Short term” EEGs and none have shown anything definitive. I had the 24 hour video and EEG monitoring and that did catch some seizures. However, for my type of epilepsy, the best diagnostic tool was the MRI as it found the scarring.

    Moral of the story, get second opinions, and don’t be satisified with a doctor labeling your spell as panic or stress if you think it is more. The best advocate for you, is yourself.

    Comment by David — March 19, 2013 @ 10:17 AM

    • What a long haul…

      But the way:

      This information comes from the brain injury website: a medical, legal and informational resource for people dealing with traumatic head injury…and subsequent seizures.

      “Seizures may develop immediately after an injury to the brain or may develop in delayed fashion, showing up months or years after the initial trauma. Generally speaking, the risk of post traumatic seizures is related to the severity of the injury — the greater the injury, the higher the risk of developing seizures. Even mild to moderate injuries can result in seizures.

      There are many kinds of seizures and seizures are not an uncommon condition among persons without head injuries. It is thought that a head injury disrupts the pathways of the brain and that an epileptic seizure can be viewed as a sort of short-circuit of the brain’s electrical functioning. During the seizure the electrical fields in the brain are overloaded, resulting in seizures.”

      Comment by Phylis Feiner Johnson — March 19, 2013 @ 10:30 AM

      • After using anti-epileptic drugs for 22 years before having my left temporal lobe removed unsuccessfully in ’96 w/o any reduction to meds. I’m worried that some of my seizures may non-epileptic. Maybe this is why AEDs or surgery have never worked totally. Can I get help by getting rechecked out with a new doctor w/o identifying any past doctor and leave it just to me where he won’t look at my diagnoses in ’74? The MRI will show the doctor that I’d had past surgery. Timothy Baldwin

        Comment by Tim Baldwin — March 19, 2013 @ 8:39 PM

  36. Tim, I’m ALWAYS in favor of a second opinion!

    This article may help you:

    2013 Comprehensive List of GOOD Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors

    http://epilepsytalk.com/2013/01/02/2013-comprehensive-list-of-good-neurologistsepileptologistsneurosurgeonsand-pediatric-doctors/

    It’s a compilation by website forum members who have had positive personal experiences with docs over the years.

    I think you SHOULD take all of your records with you. And screw the previous doctor. It could have been messed up brain surgery as so many people — like Charlie — have had.

    After 53 years of active epilepsy, he had brain surgery at NYU with Orrin Devinsky’s group (my hero) and he’s been seizure-free ever since.

    Yes, he goes for check-ups 4 times a year (the responsible thing to do) and he takes prophylactic meds for safety’s sake, but he’s got a new lease on life.

    You might too. IF you find the right doc.

    Also, an article you might be interested in:

    Beyond EEGs…Diagnostic Tools for Epilepsy

    http://epilepsytalk.com/2010/09/13/beyond-eegs%e2%80%a6diagnostic-tools-for-epilepsy-2/

    PLEASE don’t feel it’s “your fault.” It’s the fault of whoever screwed up.

    Comment by Phylis Feiner Johnson — March 19, 2013 @ 10:49 PM

  37. Quality articles is the crucial to attract
    the people to go to see the web site, that’s what this website is providing.

    Comment by Immigration Advice in Ashford — March 21, 2013 @ 6:41 AM

  38. anyone who wants to join, i just created a fb online support group for ppl to discuss epilepsy issues. its called Seizure Survivors……

    Comment by Christine Aalders — March 28, 2013 @ 11:23 PM

  39. I’m 26 years old and 6 months agoo I had my first seizure. I don’t drink, do drugs or have or had a brain injury. 2 months later I had another seizure waking up from a nap wasn’t a bad one I was able to get down on the floor and my girlfriend was there. 2 or 3 months later I had another one while I was sleeping and fell off my bed and smashed my eye off my night table and bit both sides of my tounge. My neroologist put me on caromoxapine. This was a week ago so here’s to hoping no more but the doctor did a ct test, and mri and an eeg. Couldn’t find anything at all.

    Comment by matt — April 7, 2013 @ 6:30 AM

  40. First of all, I don’t really have a lot of faith in EEGs, because they only measure activity on the surface of your brain.

    I know of people who have had 5 EEGs, only to be properly diagnosed when they finally had Video EEG Monitoring. (Not on your menu, it seems.)

    Here’s a little primer on seizure testing which might help…

    Beyond EEGs…Diagnostic Tools for Epilepsy

    http://epilepsytalk.com/2010/09/13/beyond-eegs%e2%80%a6diagnostic-tools-for-epilepsy-2/

    Also, have you been through a lot of stress lately?

    If so, there a chance you might be experiencing “pseudo seizures”. (I have both.)

    Epilepsy Versus “Pseudo-Seizures”

    http://epilepsytalk.com/2010/12/27/is-it-really-epilepsy/

    Getting the correct diagnosis is a tough ball to unravel.

    And finding the right med mix is even more of a crap shoot.

    Here’s hoping the Carbamazepine (Tegretol, Tegretol XR , Equetro, Carbatrol) works for you.

    Here’s a little info on it:

    http://www.medicinenet.com/carbamazepine/article.htm

    Comment by Phylis Feiner Johnson — April 7, 2013 @ 2:13 PM

  41. Good post. I absolutely appreciate this site. Keep it up!

    Comment by nyc hobbies — April 11, 2013 @ 6:24 AM

  42. Thanks for the compliment, NYC!

    Comment by Phylis Feiner Johnson — April 11, 2013 @ 8:51 AM

  43. Top site,very well done,keep up the good work

    Comment by Naz1968 — October 3, 2013 @ 6:45 PM

  44. Tim, just because one operation didn’t work doesn’t mean that another one wouldn’t. (If you’ve got the stomach for it.)

    Charlie had a botched brain surgery, then went to NYC, was operated on by one of Orin Devinsky’s group and is now seizure free.

    Or there’s the non-invasive route — I don’t know if it’s appropriate or would work for you, but here are some options.

    From AEDs to Surgery and Beyond…Some Options Explained

    http://epilepsytalk.com/2013/05/12/from-aeds-to-surgery-and-beyondsome-options-explained/

    I hope something works for you. Keep us posted and good luck.

    Comment by Phylis Feiner Johnson — October 5, 2013 @ 10:02 AM

  45. Tim, another thought. If you thing your epilepsy diagnosis is questionable, read this:

    “Pseudo Seizures” AND Epilepsy – Yes You CAN have BOTH!

    http://epilepsytalk.com/2013/04/08/pseudo-seizures-and-epilepsy-yes-you-can-have-both/

    Epilepsy Versus “Pseudo-Seizures”

    http://epilepsytalk.com/2010/12/27/is-it-really-epilepsy/

    Comment by Phylis Feiner Johnson — October 5, 2013 @ 10:09 AM

  46. Ever heard of anything called “sub-clinical” seizures? I had some suggest something like this might be a cause of some dizziness that i have always thought was a temporary thing from tapering off a med due to side effects.

    He seemed to suggest that someone might have activity related to seizures so mild that a person might not otherwise notice it. I’d never heard of that before, especially since my auras, partials, and seizures are very distinctive in the way they make me feel.

    Just wondering if anyone else heard of this. Sounded like bunk to me, at least in my case..

    Comment by Doug — October 19, 2013 @ 12:28 AM

    • Well, according to Wikipedia, they DO exist.

      “A Subclinical seizure is a type of seizure often experienced by people with epilepsy, in which an EEG trace will show abnormal brain activity, usually for a short duration of time but which does not present any noticeable clinical signs or symptoms.

      This is often manifest as a single spike on the EEG trace or a slowing of brain activity not correlating to their level of consciousness or awareness.

      Subclinical seizures can be useful to a neurologist in the diagnosis of epilepsy.”

      http://en.wikipedia.org/wiki/Subclinical_seizure

      Another source says: “A subclinical seizure is a epileptic seizure without symptoms.”

      http://www.gru.edu/colleges/medicine/clerkships/neurology/documents/disorders.pdf

      Comment by Phylis Feiner Johnson — October 19, 2013 @ 1:23 AM

      • So, could these subclinical activity show up as dizziness? I assumed that was my medication. Also, can the sub-clinical activity, if you are actually having it, cause long term damage or cognitive problems if not treated?

        Comment by Doug — October 19, 2013 @ 2:24 PM

  47. Doug, I’m sorry to say, I really don’t know. :-(

    Comment by Phylis Feiner Johnson — October 19, 2013 @ 2:41 PM

  48. Hey there, I had a question and didn’t know where to post it, so I thought I’d just put it here. How can you tell the difference between neuropathy from seizure drug use and other kinds of foot numbness.

    I go jogging, and after awhile running indoors on a treadmill, I’ve gone back to running outdoors on pavement and noticed my feet get numb during the run. Afterwards, they tingle for awhile and seem to go back to normal.

    Of course, being a person that takes seizure meds this made me worry a little about neuropathy. Aside from going to a doc and having him touch my foot with a metal wand, is there a way to tell the difference between running foot numbness and early onset of neuropathy?

    Comment by Doug — October 24, 2013 @ 6:25 PM

  49. Doug, if it were me, first I’d check with my neuro, for any drug related side effects and if not, I’d go to an orthopedist.

    (Unlesss you have diabetes. That’s a whole different scenerio.)

    Neouropathy is nerve pain and it could be associated with the angle at which your foot is hitting the ground or pain from the surface you’re running on or neuropathy itself.

    The orthopedist will probably do some foot fondling (!) and maybe send you for an MRI.

    My guess is that he’ll tell you to get different running shoes (and hopfully recommend a type or brand), then make an insert for them.

    Comment by Phylis Feiner Johnson — October 25, 2013 @ 11:02 AM

    • Thanks Phylis. I also feel general weakness and feel “dead leggeded” when I go running. i take Keppra.

      Comment by Doug — October 26, 2013 @ 7:07 PM

  50. That’s why I stopped running at a certain point. :-(

    Comment by Phylis Feiner Johnson — October 27, 2013 @ 11:13 AM

  51. Hmm is anyone else encountering problems with the pictures on this blog loading?

    I’m trying to figure out if its a problem on my
    end or if it’s the blog. Any feed-back would be greatly appreciated.

    Comment by fatersainat72oo.tumblr.com — January 21, 2014 @ 12:34 AM

  52. It could be your browser.

    Comment by Phylis Feiner Johnson — January 21, 2014 @ 8:44 AM

  53. I have had neurocardiogenic syncope for last 2 years, and a mild AR since I was 14. My EEGs 2012 & 2014 were both ‘Abnormal’. I was (mis?)diagnosed with Benign Partial Epilepsy with Occipital Paroxysms and started taking Trileptal for last 2 weeks. I have never had a seizure ! Only minor dizziness and short term memory loss. Visiting various websites, I am not sure whether I have epilepsy or is it due to syncope. I am male, 62 years old. I am regular in gym for last 5 years.
    Thanks for this very informative blog.

    Comment by Nadir Osman — May 9, 2014 @ 1:43 PM

  54. It may look like a seizure and act like a seizure — fainting, “blacking out,” — but syncope is the temporary loss of consciousness, followed by the return to full wakefulness.

    This loss of consciousness may be accompanied by loss of muscle tone that can result in falling or slumping over.

    Fainting is differentiated from seizure, during which patients may also lose consciousness.

    http://www.medicinenet.com/fainting/article.htm

    That being said, if your EEG was abnormal, that could definitely point to seizures.

    The Trileptal takes about six weeks to pass your brain / blood barrier.

    In the meantime, I would keep a daily seizure diary, noting dizziness and memory loss events — when they happen and how long they last.

    Do you think there’s anything that triggers them? Like blood pressure levels, physical stress, not getting enough sleep, not eating correctly, etc?

    Just to be sure if the med is having any positive effect on you, (afer you’ve been on it for about six weeks) take blood tests to see if a theraupetic amount of the Trieptal is in your bloodstream. That, hopefully, will tell you something (coupled with your daily diary).

    Comment by Phylis Feiner Johnson — May 9, 2014 @ 3:35 PM

  55. These are people who are usually faced with far too many problems
    on their plate for them eat. When you are obsessively negative, it means thst you have a tendency toward being “negative” about people, places,
    situations, and things in your life. A panic attack is
    an expected or natural reaction to threat or danger.

    Comment by Anxiety Disorder — May 13, 2014 @ 1:57 PM

  56. Although I am excessively upbeat, sometimes I keep a lot inside and then come to a boiling point and panic.

    But I wholly agree and unfortunately, I relate. Panic is my middle name.

    Here’s an article that might be of interest:

    Some Panic Attack Solutions…

    http://epilepsytalk.com/2012/10/09/some-panic-attack-solutions/

    Comment by Phylis Feiner Johnson — May 13, 2014 @ 3:57 PM


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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I've also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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