Swallowing Your Tongue and Other Epilepsy Myths

The truth about an often misunderstood condition

man holding paper with question mark

Some myths about epilepsy are centuries old, but they still persist. Imad Najm, MD, Director of Cleveland Clinic’s Epilepsy Center dispels 13 of the most common myths about epilepsy:

Myth 1: If you’ve had a seizure, you have epilepsy

Fact: A person is diagnosed with epilepsy when he or she has two or more unprovoked (“out of the blue”) seizures that occur more than 24 hours apart. But when something provokes a seizure, such as binge drinking, sleep deprivation, or a new medication, these are not related to epilepsy.

Myth 2: People with epilepsy are mentally ill or emotionally unstable

Fact: Epilepsy is an umbrella term covering more than 20 different types of seizure disorders. It is a functional, physical problem, not a mental one, and has no single, identifiable cause.

Myth 3: People with epilepsy aren’t as smart as other people

Fact: Epilepsy has little to no effect on a person’s ability to think, except during seizures, during a short period following some seizures and sometimes as a side effect of certain anti-epileptic medications.

Myth 4: People who have seizures can’t handle high-pressure, demanding jobs

Fact: They often can, and they do. Most professions — including those in the highest tiers of business, government, justice system, sports, and medicine — can accommodate a person with epilepsy.

Myth 5: It’s easy to tell when a seizure is about to happen

Fact: We can’t yet predict when seizures are beginning, although some patients say they can feel a brief sensation within seconds of a seizure — which we call an “aura.” Research is ongoing and include training dogs to detect the onset of seizures.

Myth 6: Seizures hurt

Fact: A person is unconscious during most seizures and not in any pain. Afterward, they could feel discomfort if they fell down, have muscle aches or if they bit their tongue (during a grand mal seizure).

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Myth 7: Epilepsy is most common in children

Fact: Epilepsy is most common in both the very young and the elderly. However, it can develop at any age.

Myth 8: During a seizure, a person could swallow or choke on his or her tongue

Fact: Impossible. The worst thing that can happen during a seizure is that a person could bite his or her tongue.

Myth 9: You should force something into the mouth of someone having a seizure

Fact: Never put anything into a person’s mouth if they are having a seizure. This could actually injure them. Roll the person on one side, keep him or her a safe distance from any nearby objects, and let the seizure run its course. If you see any signs of distress or if the seizure persists for more than a couple of minutes, call 9-1-1.

Myth 10: Epilepsy can’t be controlled effectively

Fact: There are many ways to treat, minimize, control, and even — under the right conditions — eliminate epilepsy. With anti-epileptic medications, it’s possible to control epileptic seizures adequately in 70 percent of patients. The remaining 30 percent are possible candidates for surgery, but it depends on where the epilepsy originates in the brain.

Myth 11: Women with epilepsy can’t or shouldn’t get pregnant

Fact: Epilepsy does not generally affect a woman’s ability to conceive and has a minimal effect on a child’s development. However, if women are taking anti-epileptic drugs, the risk of birth defects ranges from 2 to 10 percent. “This is a bigger concern,” Dr. Najm says. People can minimize the risk by working closely with a neurologist and obstetrician.

Myth 12: People with epilepsy will pass it on to their kids

Fact: “Kids of parents with some forms of epilepsy are at higher risk of developing it, but the risk is very low,” Dr. Najm says. This is because a single gene problem rarely causes epilepsy; it usually involves a combination of gene defects in multiple areas.

Myth 13: You can’t live a full, normal life with epilepsy

Fact: Epilepsy can affect a person’s lifestyle, but you can live a full life, Dr. Najm says. “Live your life, but live with moderation. Avoid extremes in lifestyle.” Before you start doing something new, Dr. Najm advises: “Ask yourself: ‘Could I hurt myself or someone else if I had a seizure?’ If the answer is ‘yes,’ and seizures are not well-controlled, people should avoid the activity or be very cautious. ”

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More information

How To Care For a Child With Epilepsy

Epilepsy Treatment Guide

Cleveland Clinic Epilepsy App

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  • Ronald Segeat

    A grandmal is like a mini stroke. Lack of oxygen to brain is never a gd thing. Drs act like they know it all like some ppl but never had one. If ppl with epilepsy can handle tough work why wont the military take ppl with it. These meds r a joke and r side effect happy for it. Some don’t have it for yrs that’s why there r ppl with a better memory than others some have them every day. Epilepsy has been around forever and wont ever be a cure for it. Never will I or would I have brain surgery. I seen doctors tell my dad he will be fine on CEMO and a massive stroke took him for good. Talk I cheap I believe half of what I see or hear.

    • Eutychus

      Ron, a generalized (“gran mal” in outdated terminology) seizure involves epileptiform activity taking place on one side of the brain generalizing (moving from a specific location) to the entire brain. This only involves bioelectricity. A stroke involves a blood vessel and is much more serious. And allow me to plug the surgery option. Got my scar in ’87 and haven’t had a seizure since. Look into it.

      • Carol

        I have gran mal from a venous angioma that are because of a accident on my left temporal lobe from where I feel at a job. I take 4 pills a day. My teeth and bones are falling apart, I still have small little seizure around my period time. I don’t know why. I wonder if it’s because of the temporal lobe and the blood flow and I loose a lot of blood on my period time monthly. I have been to the Mayo Clinic 10 years ago they said that the angioma was in a bad spot to remove to come back when they get more better equipment. The place where I fell and hit my left temporal lobe has fired me, so no I don’t have the insurance to go back down there to get rechecked.

  • http://www.facebook.com/Tiptop1958 Michele Smith

    Great information. I do get them but take medication for it.



  • Purple Penguin

    Thank you so much for publicizing epilepsy in this way! These are important facts for the general public to know. I would disagree with “people are not in pain while having seizures.” I had complex partial epilepsy for 20 years before brain surgery last year and my seizures caused me significant pain because I was slightly conscious but lost all control. I hallucinated and felt like I was being chased but couldn’t get away and my heart raced.

  • Amy Armstrong

    Your info for #8 is not correct. Partial seizures that occur hundreds of times daily and go on sometimes for days ARE EXTREMELY PAINFUL.

  • Jean

    My son had seizures starting at age 15 he was on meds for many years and it helped control them. A neurologist
    decided to take him off his meds without any testing as he said he was seizure free based on the fact only that
    he had not had one for eight years. He died at age 36 of a seizure. How often does a seizure end up in death?
    We were always warned, it looks worse than it is. Our son did not have them often and was living a healthy life.

  • Jaki Rodriguez

    I had Epilepsy since I was 9 years old I’m 31 with 3 three kids. My husband is such a big help when we were dating I was afraid to tell him what I have but I knew I had to cause we were getting serious, when I told him he was fine and ever since then he has always been my rock. He always makes sure I take my medicine.

  • Cristina

    I was not born with it, but when I was 14 and had my first period it came with a seizure. And ever since every seizure has been either the day before or during my menstrual cycle.So a couple years ago my Gynecologist talked to me about the depo shot. I love it!! My Dr. wants to take me off the Meds but I insist in staying on because I feel safer that way. I have learned to live with it as uncomfortable as it may be, everything with moderation and don’t push yourself. My epilepsy is linked to hormonal problems so being on the Depo Shot for years now has been very helpful. If you have Catamenial epilepsy this is a route you might want to consider.

  • bossyboots

    I’d like to say Myth 4: It all depends on the person. Pressure and stress are some of my biggest triggers. As for Myth 6: Ha!! The quacks insist I shouldn’t remember anything when I go full grand mal, yet the pain of every twist, turn, and spasm until I finally black out is very real and I remember it all. And the partial seizures hurt like a mother, twisting and contorting and banging my leg and foot against wherever I may be seated at the time. Not every seizure is the same, nor is the individual epileptic.

  • 32W

    “Fact” #6 is faulse. I have a rare form of epilepsy that makes me I feel a shocking pain when I am having a seizure. I also don’t go unconscious I am completely aware of my sounds and surroundings. But you never know I haven’t had one in about 4 and 1/2 years so I could have changed maybe.

  • carlos

    It’s hard to “summarize” such a complicated matter and package into nice little bullet points. A lot of people try to do that. These bullets should have clauses or qualifiers next to them. You don’t want to spread overgeneralized information that could potentially be harmful.

    Tongue Swallowing: Very uncommon. In fact some doctors will say that same thing. And for the most part maybe people should think this is true so that they don’t hurt the person. The fact is that some people have a different anatomical structure of the tongue allowing for something “like” tongue swallowing.

    The other problem is that some people don’t research it enough and misinterpret it as “completely swallowing the tongue down to the stomach”. Of course this can’t happen unless the muscle is cut. What CAN happen is that some people can have their tongues lodged in the back of their throat that can impede airflow and potentially kill them.

    What happens, rarely, is that the persons gets a head blow which can also cause this situation (although very rare).

    And for those that quickly dismiss it, you either misinterpreted what tongue swallowing means (i.e. down to the stomach) or are too quick to say things you don’t know about. Ask many emergency crews. Ask medical staff in sports where head blows are common. It happens. Ask a lot of military personnel. Some are trained to deal with it. The person on the ground has 2-5 minutes (for permanent damage–depending on a lot of factors) and unless you are an expert, I’d try to stick my finger in and dislodge it once lodged down the throat. I don’t know if that would be correct. I am not a doctor, but if I saw it I would just try to dislodge. Who cares if I got bit and broke my finger. (Maybe I should start finding out what to do.)

    Watch some soccer and boxing videos on the subject. Read some emergency medical manuals. Don’t lead people astray. It could save a life one day

  • Andrea Houston

    #10 is a bit off. I’ve had epilepsy for 31 years, been through countless neurologists,and medications plus a VNS 3 years ago, a pregnancy with no signs of control.I take 26 antiseizure pills a day. Partial-complex seizures are extremely painful, I’ve lost track of all the things that’ve happened to me when I had a seizure.

  • Nyx Nax

    Actually about #8 – swallowing your own tongue – while you cannot swallow your own tongue because it is anchored by the frenulum to floor of the mouth, it is possible for the soft tissue to go flaccid while unconscious and obstruct the airway. If this Happens you want to tilt the head and lift the chin so they are able to breathe.