Epilepsy Talk

Is Epilepsy Inherited? | December 9, 2019

Just because you have a parent, sibling, cousin or aunt who has epilepsy doesn’t necessarily mean you’ll have it also.

In fact, if you have a close relative with epilepsy, the chance of you having epilepsy is only about 2-5%, depending on the specific type of epilepsy.

The risk in the general population is about 1-2%.

On the other hand, there is a 92-98% chance for the close relative of someone with epilepsy to NOT have the same condition!

So, even though the risk in families with epilepsy is higher than in the general population, most people with epilepsy do not have any relatives with seizures, and the great majority of parents with epilepsy do not have children with epilepsy.

Not everyone who carries genes making them more likely to develop epilepsy will do so. Even if the genes are passed on, not every generation in a family will have seizures. And so, like diabetes, epilepsy may skip a generation.

While epilepsy cannot currently be cured, for some people it does eventually go away. One study found that children with idiopathic epilepsy, or epilepsy with an unknown cause, had a 68 to 92% chance of becoming seizure-free by 20 years after their diagnosis.

The odds of becoming seizure-free are not as good for adults, or for children with severe epilepsy syndromes. But it is possible that seizures may decrease or even stop over time. This is more likely if the epilepsy has been well-controlled by medication or if the person has had epilepsy surgery.

The Genetics of Epilepsy

Clinical tests suggest that genetic abnormalities may be some of the most important factors contributing to epilepsy. Some types of epilepsy have been traced to an abnormality in a specific gene.

Researchers estimate that more than 500 genes could play a role in this disorder.

More than 20 different syndromes with epilepsy as a main feature have been mapped to specific genes.

However, it is increasingly clear that, for many forms of epilepsy, genetic abnormalities play only a partial role, perhaps by increasing a person’s susceptibility to seizures that are triggered by an environmental or external factor.

Like photosensitivity. (Did you know that 25% of people with primary generalized epilepsy are photosensitive?)

While abnormal genes sometimes cause epilepsy, they also may influence the disorder in more subtle ways…

Genetic Testing

For example, one study showed that many people with epilepsy have an abnormally active version of a gene that increases resistance to drugs. This may help explain why anticonvulsant drugs do not work for some people.

Genes also may control other aspects of the body’s response to medications and each person’s susceptibility to seizures, or seizure threshold.

Abnormalities in the genes that control neuronal migration – a critical step in brain development – can lead to areas of misplaced or abnormally formed neurons in the brain that can cause epilepsy.

And in some cases, genes may contribute to development of epilepsy even in people with no family history of the disorder.

These people may have a newly developed abnormality, or mutation, in an epilepsy-related gene.


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  1. Very interesting points brought up. I have Juvenile Myoclonic Epilepsy, temporal lobe epilepsy, and photosensitive epilepsy. JME is a syndrome that has a genetic component but no other family members have it. Luck of the draw.

    Liked by 2 people

    Comment by LesleighHart — December 9, 2019 @ 10:02 AM

    • I had absence seizures (now controlled) and no one in my family had epilepsy either.

      Liked by 2 people

      Comment by Phylis Feiner Johnson — December 9, 2019 @ 10:09 AM

      • I am so grateful to hear no one else in your family had epilepsy either. I personally CAN’T IMAGINE HAVING MY CHILDREN OR FAMILY MEMBERS GOING THROUGH EVERYTHING I HAVE AS AN EPILEPTIC!!

        Liked by 1 person

        Comment by Kathy S.B — December 9, 2019 @ 5:54 PM

      • Let’s put it like this: If they did, no one ever talked about it.

        After all, mine was a deep, dark secret.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — December 9, 2019 @ 7:30 PM


        Liked by 1 person

        Comment by Kathy S.B — December 9, 2019 @ 8:47 PM

      • It sucks being a pariah.

        But, I sure am over that now! 🙂

        Liked by 1 person

        Comment by Phylis Feiner Johnson — December 9, 2019 @ 8:52 PM

      • You are FAR FROM A PARIAH PHYLIS!!!!!!! Your an ANGEL 👼 😘💞. MAYBE THEIR JEALOUS!! 😘. My grandma and old people used to call me an “ANGEL”!! It’s not your fault they can’t al fall in OUR CATEGORY!!!!!!! 😊🙏🏼🦅🦅😇😇😘😘😘😘😘💞💞💞💞💞

        Liked by 1 person

        Comment by Kathy S.B — December 9, 2019 @ 9:01 PM

  2. Goodmorning Phylis 😊. I always wondered that myself too!! Apparently they could never figure out how I got epilepsy, but I was told the doctors were suspecting someone with encephalopathy of some sort. I know 9 years ago when I was offered surgery I asked wether or not I was born with it? The neurologist told me I was. It was at that time (in the middle of my children’s teen years and one little one) I decided to follow my grandma and great grandmas lead and not go for epilepsy surgery. However it’s always had a little bit of fear I may pass it on to my children. Luckily I never did!! Thank you and please have a very good day today and please take care of yourself 😊🙏🏼🦅😇😘

    Liked by 1 person

    Comment by Kathy S.B — December 9, 2019 @ 10:14 AM

  3. Thank you Phylis 😘

    Liked by 1 person

    Comment by Kathy S.B — December 9, 2019 @ 10:37 AM

  4. Ok I remember that article!! Yes I always had it in the back of my head and I did ask when I seen the neurologist too. But in all honesty it almost felt like the neurologist had already made up his mind prior to seeing me and wasn’t willing to hear what I had to say. Until he tried to put me on keppra and my husband took over. I understand specialists are specialty for a reason, but it doesn’t excuse them from listening to the concerns of us as epileptics or our spouses, families or friends. I won’t lie even my husband and I sat there at the end of my appointment and we’re both stunned when u was told to keep my Dilantin and tegretol as emergency medications or INCASE and then the neurologist quickly left the room!!!!! Too bad we can’t all just be down to earth and help eachother without having or coming across as a dictator or too good for the rest of civilization however or whoever they maybe. Thank you Phylis and please have a very good day today 😊

    Liked by 1 person

    Comment by Kathy S.B — December 9, 2019 @ 11:01 AM

    • In case of WHAT???

      The new meds didn’t work?

      In case of emergency?

      Liked by 1 person

      Comment by Phylis Feiner Johnson — December 9, 2019 @ 1:00 PM

      • Lol THAT’S WHAT WE THOUGHT TOO!!!!!!! We were kind of left feeling hanging, but he left too fast for us to able to make any clarification with him! But I was actually asking incase of emergency? For example: ATIVAN as an “INCASE OF EMERGENCY MEDICATION”

        Liked by 1 person

        Comment by Kathy S.B — December 9, 2019 @ 1:04 PM

  5. Exactly. 😦

    Liked by 1 person

    Comment by Phylis Feiner Johnson — December 9, 2019 @ 2:23 PM

  6. Ya I feel relieved that appointment is actually over and done with now!! However on the other hand I never did understand being told to use the tegretol or Dilantin as rescue medication!!!!!!! Which leads me back to BOLOGNA I AM GOING TO USE THE TEGRETOL AND DILANTIN AS RESCUE MEDICATION!!!!!!! Plus I was down to 10mg clobazam and he bumped that back up to 20mgs!! I am not going back up to 20MGS!!!!!!! Now I am PRAYING MY PHARMACIST CAN CHANGE THAT MEDICATION TO BRAND NAME MEDICATIONS!!!!!!! So I sit and wait to get a call back from the pharmacy now and I did phone my family doctors clinic as well. I guess I wait and see now. P.S. I haven’t received the new medication yet.

    Liked by 1 person

    Comment by Kathy S.B — December 9, 2019 @ 5:59 PM

    • I’m not sure how it is in Canada, but for insurance reasons here, you have to have “DO NOT SUBSTITUTE” on the script to be assured of getting the brand name.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — December 9, 2019 @ 7:28 PM

  7. Yes your very right. Apparently the pharmacist caught it and were just waiting to see if it can be figured out and written properly as it should have been in the first place. He’s just not sure how long that will take right now. But I never realized how huge the dosage is of the topomax!! It’s being titrated to 1000 mgs a day over time. WOW!! On the flip side that’s WAY LOWER than the tegretol I am now on 1600 mgs/daily and 400mgs/daily of Dilantin and 20mgs of clobazam (I did bring that down to 10mgs/ daily), but I guess it’s going back up again!! DARN IT!!!!!!!

    Liked by 1 person

    Comment by Kathy S.B — December 9, 2019 @ 7:38 PM

  8. I think each med has it’s own dosage schedule. For example, in one drug, you may take .05 mg. In other, you might take 250 mg.

    (Just a personal example.)

    Liked by 1 person

    Comment by Phylis Feiner Johnson — December 9, 2019 @ 7:43 PM

  9. Yes I completely agree!! That must be the titration part of the medication. But I all honesty I would rather deal with this up coming medication opposed to what I have had to deal with for decades!! I JUST PRAY I DON’T have to change it AGAIN!! And that this works and helps me. Thank you Phylis 😊🙏🏼🦅😇💞. Who knows if it does I MIGHT BE ABLE TO MAKE THAT TRIP AFTER ALL!!!!!!! 😘🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼🦅🦅🦅🦅🦅😇😇😇😇😇😘😘😘😘😘

    Liked by 1 person

    Comment by Kathy S.B — December 9, 2019 @ 7:57 PM

  10. What trip?

    I’m praying that the new med works too.

    Just remember, there’s always another drug to try. (The bad and the beautiful part of chronic conditions.)

    Liked by 1 person

    Comment by Phylis Feiner Johnson — December 9, 2019 @ 8:46 PM

  11. As weird as it sounds I WILL MAKE THAT TRIP EITHER TO VISIT YOU OR NIAGRA ON THE LAKE!!!!!!!! One way OR ANOTHER!!!!!!! 😘. It’s just a matter of time to get over a bit of a hiccup!! 😉. Lol and I WILL GO TOBOGGANING AGAIN AND SKATE!! I think in one way I was spoiled by not having to continuously having to change my medications on one hand. On the other hand it seems to have TAKEN A BITE OUT OF ME NOW!! But I WILL GET BETTER I KNOW I WILL!!!!!!!

    Liked by 1 person

    Comment by Kathy S.B — December 9, 2019 @ 9:39 PM

  12. YES! I like that attitude.

    Do what you want and follow your heart.

    And if it leads you to my front door, you’re welcome here! 🙂

    BTW, I went to Niagra on the Lake.

    In the summer, it is beautiful.

    And in July, they have a George Bernard Shaw festival.

    (At least they did way back when, during my visit there.)

    Liked by 1 person

    Comment by Phylis Feiner Johnson — December 9, 2019 @ 9:53 PM

  13. Goodmorning Phylis 😊. You that sounds REALLY NICE!!!!!!! I always say we have to have a goal or something to reach for! I think I’ve found my goal 😃😃😃😃😃😃😃. I will titrate on to these new meds and I will be okay and be able to make that trip this coming year!!!!!!! Lol plus it’s my 25 LEGAL ANNIVERSARY 😉😉. So maybe WE WILL DO THAT!!!!!!! Thank you for making me feel so welcome 😘. Please have a very good day today and please take care of yourself as well!! 😊🙏🏼🦅😇😘😘😘😘😘

    Liked by 1 person

    Comment by Kathy S.B — December 10, 2019 @ 10:12 AM

    • 25th anniversary! Now that’s something to be proud of.

      (Not to brag, but we’re celebrating our 40th anniversary on 3/23, but I think I’m older than you.)

      Keep sight of those goals. They’re a wonderful incentive.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — December 10, 2019 @ 10:33 AM

      • Goodmorning Phylis 😊. Yes you are wiser than myself (which leaves me to seek and enjoy your articles of knowledge 😘). Yes we are very proud of ourselves thank you 😊. We call it “OUR LEGAL ANNIVERSARY” because that’s when we LEGALLY GOT MARRIED, but in all reality it’s 27 years already 😘🙏🏼🦅😇💞🙏🏼. We do have to laugh at our children when they say they “want to be married like my husband and myself” though lol 😂. My response is “as long as your better half has a DUNGEON (yes I am a smoker I must confess) and you can know when to walk out and have a smoke (to cool the air down) then YOU WILL BE GOOD!!!!!!! 😘🙏🏼🦅😇💞😘. I know it’s not a good thing but we don’t drink, gamble, or much of any evils except eachother lol 😂. But having a goal is ALWAYS SOMETHING WE STRIVE FOR!! 😘🙏🏼🦅😇💞😃😃😃😃😃😊😊😊😊😊💗💗. Thank you Phylis 😘

        Liked by 1 person

        Comment by Kathy S.B — December 10, 2019 @ 11:23 AM

  14. I must confess, I smoke too, either outside or in the garage.

    But it must be too cold in Canada to do that!

    And yes, you must always work at a marriage.

    It’s not a game, it’s a life time commitment.

    One that sometimes comes with dirty laundry.

    Liked by 1 person

    Comment by Phylis Feiner Johnson — December 10, 2019 @ 11:30 AM

  15. Back when I was young the doctors said that there was a 50/50 chance. My grandfather had epilepsy, my mother and one of her 3 sisters had epilepsy and the one with the epilepsy died at age 12. My sister on my mother’s side who was younger than me had epilepsy and one of my cousins from each of my aunt’s has epilepsy.

    Liked by 2 people

    Comment by Jeanine Bunt — December 11, 2019 @ 5:01 PM

  16. Goodevening Phylis 😊. Yes we sure have to work OR PRAY HARD SOMETIMES!!!!! As we’re learning right now. When we went to the neurologist last Friday my leg was itchy after my appointment. I was too baffled from my appointment I thought maybe my family washed our clothes in bleach (I’m allergic to bleach). So I bit my lip. On Saturday I figured it would pass so I never said anything to anyone. Sunday came and it got a bit bigger but again I bit my lip!! Finally Monday came and it hurt. So I told my husband somethings wrong but I wasn’t sure what? Yesterday I couldn’t take it anymore!!!!!!! My husband came home and seen my leg and IMMEDIATELY TOOK ME INTO EMERGENCY!!!!!!! Lol but I wouldn’t let him come in with me because I didn’t want him to get sick and sent him home until I finished. Low and behold the nurse came in and started an I.V. (Yes they knew I’m allergic to latex). Then my friend came it and then the doctor. He wasn’t sure if it was an ingrown hair or a spider bite? So they gave me an injection of something and lol ummm that’s all I remember!! Until I woke up thismorning and this time even my hands were puffy and my fingers had a rash and I was home with an I.V.!!!!! So my husband took me in today and YES!!!!!!! I had a reaction to the needle used for I.V. They had to pull the intervenous and I opted for the injection directly into me and they removed the I.V. Turns out my leg is infected from a suspected spider bite!!!!!!! I ended up laughing and telling them “SEE!!!!! I TOLD YOU I AM ALLERGIC TO NEUROLOGISTS!!!!!!!”. 😂😂😆😆😂😂😂😂😂. What a rollercoaster year!! Lol

    Liked by 1 person

    Comment by Kathy S.B — December 11, 2019 @ 7:54 PM

  17. OMG! Truth is stranger than fiction! 🙂

    Liked by 1 person

    Comment by Phylis Feiner Johnson — December 11, 2019 @ 8:24 PM

  18. I have constant partial seizures, diagnosed nearly 8 years ago, cannot get it Controlled by meds, and not able to have surgery.
    My brother now aged 52, has now been diagnosed with constant partial seizures, apparently, our father was known to have funny turns, we are unable to ask question as Our parents have both passed on.
    .I am particularly worried as life passes by, I was a very independent person, with friends all over Britain.
    I feel particularly vulnerable, when out, as I know of cases where a person has had a seizure, and been robbed or attacked.
    The need of more information is needed for the general public about Epilepsy,
    A friend has also told me she was diagnosed at the age of 12, and her cousin also diagnosed with the same. My heart goes out to all with being diagnosed with Epilepsy, we constantly fight for a good seizure free day.


    Comment by Sandy — January 8, 2020 @ 5:43 PM

    • Oh Sandy, have you told your friends or a few close ones you have epilepsy? Or do you feel too vulnerable?

      This link may be of use:

      Explaining Epilepsy to a Friend


      The reason for this forum is to help and advocate for one another.

      But being strong in the outside world is tough. Especially when you get a “sucker punch” like epilepsy.

      The only thing you can do is speak up and speak out. Be confident in who you are and don’t let epilepsy define you.

      It took years until I was comfortable enough to come out of the closet. And it was a liberating experience.

      Perhaps you’ll find some comfort in this:

      What’s YOUR Story?


      We are a close knit family in this forum. Feel free to come with questions, complaints, to rant, to cry.

      Everyone has a kind, compassionate ear.

      You CAN have friends. Especially here.


      Comment by Phylis Feiner Johnson — January 8, 2020 @ 6:02 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 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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