Epilepsy Talk
Conditions commonly misdiagnosed as epilepsy… | October 14, 2022
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, 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.
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Resources:
http://www.everydayhealth.com/epilepsy/understanding/when-are-seizures-not-epilepsy.aspx
http://www.webmd.com/epilepsy/conditions-similar-to-epilepsy
https://www.webmd.com/epilepsy/types-of-seizures-their-symptoms
https://www.stlukes-stl.com/health-content/medicine/33/000510.htm
https://www.drhabibpediatricneurologist.com/seizure-mimics/
Tags: auras, brain, disorders, misdiagnosed epilepsy, neurological, seizures
23 Comments »
Leave a reply to Phylis Feiner Johnson Cancel reply
About the author
Epilepsy Talk 
Judging from this list, I appear to have had febrile seizures. My last seizure occurring around the age of 6. What percentage of seizures are misdiagnosed as epilepsy?
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Comment by Donald McKenzie — October 14, 2022 @ 9:06 AM
As many as 20% to 30% of epileptics may have been misdiagnosed.
https://pubmed.ncbi.nlm.nih.gov/10898432/#:~:text=Background%3A%20As%20many%20as%2020,from%20epilepsy%20on%20clinical%20grounds.
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Comment by Phylis Feiner Johnson — October 14, 2022 @ 9:38 AM
From time to time in a support group I am in that is sponsored by the Epilepsy Foundation called Coffee Conversations, someone will be hesitantly walking around the coffee shop. They will then come up to the table where we are having our conversations and ask, “Is this the Epilepsy Support Group?,” or something to that effect. And then we respond that it is and that they are welcome to join us.
Almost immediately the person will say that they don’t know if they have epilepsy but that they are having seizures. We still welcome them into the conversation.
It looks from the detailed list you have compiled that some of them do not have epilepsy but that they still do have seizures. They still are welcomed since having a seizure is enough to have to deal with, right! One way or another, we encourage them to get an official diagnosis from a neurologist or an Epilepsy Center.
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Comment by George — October 14, 2022 @ 11:18 AM
I’m sure such support is welcome and a great relief. Everyone needs to be validated in some way.
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Comment by Phylis Feiner Johnson — October 14, 2022 @ 11:58 AM
For me it was “panic attacks.” My focal seizures are very much like panic attacks on steroids, so they gave me antidepressants that did nothing but kill my emotions. I also had a lot of deja vu and spacing out, which was attributed to inattention or being on drugs (very nice thing for people to say to someone who never took or even saw a drug in their life).
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Comment by Hetty Eliot — October 14, 2022 @ 11:55 AM
Good thing you’re a smart lady!!!
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Comment by Phylis Feiner Johnson — October 14, 2022 @ 12:01 PM
I don’t even know what drugs look like & yet, in many cases I had been told by total strangers & rescue workers I look like I was high on drug overdose whenever I start having seizures, until I loose consciousness to shake on the ground.
As if my seizures are NOT tormenting enough to live with, the insult of the total strangers & rescue workers who know nothing about my epilepsy gets to be infuriating.
Gerrie
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Comment by Gerrie — October 14, 2022 @ 6:14 PM
They said this to me in grade school years before I had any inkling something was wrong (the panic hadn’t set in yet). I just thought I looked weird. Oh yeah they said I looked like an alien too.
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Comment by Hetty Eliot — October 15, 2022 @ 12:44 AM
I wish I knew exactly what’s wrong with my son – he has had moments of unresponsiveness since he was 3 earning the name ‘space cadet’
he graduated college, worked for 6 years as an engineer & then suffered a breakdown along with extreme paranoia.
He’s been loosely diagnosed as having schizophrenia – he saw a neurologist also who says he has a neurochemical brain imbalance” … he suffers from auditory hallucinations but doesn’t act on them & is extremely annoyed by them –
He’s taken multiple APs & is now taking none since he says they don’t help – he’s working and socializing but he’s very depressed at times – is this epilepsy that morphed into schizophrenia? His psychiatrist is not convinced it’s schizophrenia even after 2 yrs of treatment – what to do next …
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Comment by Shell — October 14, 2022 @ 7:35 PM
Shell, People with epilepsy had about 2.5 times the risk of schizophrenia as the general population, reported researchers.
Yet that’s “fairly low,” says Charles Raison, MD. Former consulting psychiatrist for the epilepsy service at the University of California at Los Angeles.
“Most people with epilepsy probably aren’t in danger of schizophrenia, he says.”
He said that the schizophrenia risk is very small — about 1%, in general.
But even with the higher risk cited in the study, people with epilepsy still have only a 2-3 in 100 chance of developing schizophrenia.
Maybe this article will help: Schizophrenia and Epilepsy — The Connection https://epilepsytalk.com/2013/09/20/schizophrenia-and-epilepsy-the-connection-2/
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Comment by Phylis Feiner Johnson — October 14, 2022 @ 9:37 PM
What have you learned about genetic disorders such as urea cycle disorder? This can lead to states of elevated ammonia which can cause seizures or worse.
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Comment by AJ Jensen — October 14, 2022 @ 8:41 PM
This is what I just learned, thanks to you…
“A urea cycle disorder (UCD) is an inherited disease. When we eat protein our bodies break it down into amino acids which we need to grow and stay healthy. Extra amino acids that our body doesn’t need are turned into a waste product called ammonia. Enzymes in the liver turn the ammonia into urea so the body can get rid of it through the urine.
In someone with a UCD, the enzyme is missing or is not working correctly. Because of this, ammonia builds up in the blood and it can be harmful. It can travel to the brain and cause memory loss, behavior changes, coma, seizures, or brain damage. UCDs affect about 1 in 35,000 births in the United States.”
https://www.ucdincommon.com/what-is-a-urea-cycle-disorder/#
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Comment by Phylis Feiner Johnson — October 14, 2022 @ 9:29 PM
Another point with this is a study that shows virus infections can cause HA which would lead to seizures. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3917241/
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Comment by AJ Jensen — October 15, 2022 @ 11:38 AM
Failed Drug Therapy seems to be the most popular from all the people that I have talked with about the seizures they have. BUT SUDDENLY, after I said NO to a VNS & after I said NO to an RNS but was leaning to say YES later if this XCOPRI drug was not going to work as NOW I am 11 months without a seizure, and I can say after 11 months NO for now to an RNS. I do believe these neurologist all have a plan that starts with a pediatrician who only have the desire to get kids on some type of neurological drug for anything that they can say a child has whatever brain condition label they are going to be living for life, AFTER the neurologists takes over that child’s case. That how it was for me since 5 months old as I am 1 month away from living with this Epilepsy for 62 years, even as my last 11 months have been seizure free, as one never knows when or if a drug can just stop working after brain chemistry gets use to the drug as the brain chemistry is not under its working of controlling that brain chemistry. WHAT A LIFE,, as some live THE DREAM like my sister & her husband, while others can only dream, which is why 1 of my favorite R&R songs is the Areosmith song DREAM ON, because ”maybe tomorrow the Lord gonna take you away”.
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Comment by James D — October 14, 2022 @ 9:23 PM
At 6 months old, I had a febrile seizure due to a high temperature. I had a lot of colds with fever, sore throats and invicves. I rarely got the stomach aura at high temperatures, but it wasn’t noticeable. And the moment came when, at the age of 27, he was 27. I did the first grand mal attack ped rs. But after tests the next day, they found no blood counts violations, a head scan, and later an MRI. But to this day, the bouts are working, with the last one being 15/10/22.
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Comment by Goro Dimitrov — October 17, 2022 @ 4:33 AM
Could it be nocturnal seizures?
Nocturnal seizures are seizures that happen while a person is asleep. They can cause unusual nighttime behavior, such as waking for no reason or urinating while sleeping, as well as jerking and shaking of the body. Nocturnal seizures are usually a type of seizure called a tonic-clonic seizure. https://www.medicalnewstoday.com/articles/326864
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Comment by Phylis Feiner Johnson — October 17, 2022 @ 9:26 AM
I’ve also had seizures at night. All of them are described with the stomach aura, which is the harbinger of all seizures. Sometimes there is only an aura without loss of consciousness. For my epilepsy, I visited all famous neurologists in Bulgaria. I tried different therapies, but one proved to be successful. Lamictal and Rivotril. But I was wrong to enter neurosurgery, where there is only one neurosurgeon operating on heads with epilepsy. Together with his neurologist assistant, a crazy grandmother, they called me a drug addict. And in order to drain the money from the health care system, they immediately offered me a head operation. But to the question: “Doctor, will I get better after the operation?” He replied that there is always a risk and closed the door of the hospital room. And I began walking through the torments, to this day, because they did not give me back the previous treatment with which I received one attack per month without losing consciousness. And we constantly say that you should listen to the doctors and take the medicine so that you don’t miss a dose. After my consultation with two other neurologist professors teaching students, they gave me a positive conclusion that I did not have surgery because it is not known whether the hippocampal sclerosis or the seizures were the primary cause. Here in Bulgaria, there is little information about epilepsy in society. My epilepsy changed my lifestyle completely. Now they want to try other drugs on me alone or in combination. But I found out that in Bulgaria they treat on a trial-and-error basis. Now I am treated with three medications: Finlepsin, Lamictal and Rivotril. I apply chamomile and valerian herbs. I use homeopathy and a modified Adkins diet. Seizures continue – sometimes only absences, sometimes tonic-clonic. I don’t know why my neurologist does not want to return the treatment with which I had almost no seizures. But for myself, I will continue to seek my way of healing. For myself, I understood that the cause is physical and mental fatigue, lack of sleep, stress.
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Comment by Goro Dimitrov — October 18, 2022 @ 6:29 AM
Goro, it sounds like a terrible situation, with a bunch of crackpots, but only you know your body best.
As they say, if you’ve got a “gut” feeling, go with it.
Trial and error with meds is rampant everywhere.
But I don’t understand, if the combination of Lamictal and Rivotril worked for you, why can’t you go back to it?
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Comment by Phylis Feiner Johnson — October 18, 2022 @ 8:43 AM
Hi Phylis. I want to apologize for my bad English. I also wonder about the neurologist. According to her, the dose of Rivotril is too high. But we have to eliminate seizures. This is the basis of medical treatment. I’m thinking of getting it back on my own, like attending yoga and meditation.
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Comment by Goro Dimitrov — October 18, 2022 @ 10:04 AM
There is nothing harmful about yoga or mediation. But they must be accompanied by medical therapy. They enhance the results of anti-epilepsy drugs, but do not replace them
Goro, do not play doctor on your own. If necessary, seek the advice that you know is best for you.
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Comment by Phylis Feiner Johnson — October 18, 2022 @ 12:11 PM
Hi Phyllis.
of course I take medicine, and at the moment I also take 4 kinds. But I can’t find the right neurologist in Bulgaria. No one pays attention to the onset of the disease, your previous treatment, your current condition. Everyone starts all over again with the treatment and medicines of the companies to which he is a distributor. For example, Rivotril is replaced by Clonarex. The active ingredient is the same (clonazepam), but Clonarex simply does not work for me and I am forced to buy and import Rivotril from another country. I have already taught her the treatment scheme they apply (the one written in the neurology students).
Unfortunately, this is the case in Bulgaria, but I am not giving up looking for an experienced neurologist and I think I will find him.
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Comment by Goro Dimitrov — October 19, 2022 @ 8:50 AM
There is a typo in your heading….
“Memeningitis
Meningitis is an infection that causes swelling of the membranes of the br….”
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Comment by Rebecca — February 3, 2023 @ 11:26 AM
Sigh. You’d think after 40 years of writing, I’d be able to spell. (I can’t type either.)
Thanks Rebecca!
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Comment by Phylis Feiner Johnson — February 3, 2023 @ 1:04 PM