Epilepsy Talk

Epilepsy Nightmares – WHY? | February 15, 2012

Fear. Screaming. Visions. Bright lights flashing. Hallucinations. Tongue biting. Pain. Paralysis. Pins and needles. Bed wetting.

Do any of these sound familiar?

One person described it as: “During the nightmares, I often get up and run out of the room screaming while still asleep, as if something is chasing me.”

It’s agony. And there’s little to explain it or stop it in its tracks.

If you’ve got TLE, you’re a definite candidate.

Plus, not surprisingly, studies have shown that 10 – 45% of people with epilepsy have seizures that occur predominantly or exclusively during sleep or occur with sleep deprivation.

Interruption in REM (Raid Eye Movement), is the culprit. Because sleep terrors occur in slow waves — the first step of sleep and the last third – cause those night terrors.

Nocturnal seizures are not likely to occur in the middle of the night. They usually appear shortly after you’ve fallen asleep or just before waking up.

Some people have seizures occur only during sleep while others have both daytime and nocturnal seizures.

As you can guess, regular sleep habits are important, especially for those with sleep related seizures. Seizures may be triggered by missing sleep or sometimes even by getting too much sleep.

But if you’re worried that you might have a seizure during the night, it can be all that more difficult to sleep. I know that my instinct was trying stay awake to keep those horrible experiences at bay. (I used to try to tear out my hair.)

But if you’re afraid of going to sleep, then the whole cycle begins again. Because insufficient sleep can lead to increased seizure activity, making the problem worse.

And if no one is around, you could be in danger.

Sometimes the tendency toward seizures in sleep may be reduced by increasing the evening dosage of anticonvulsant medication.

If the seizures occur with falling asleep in the early evening, the supper dosage may be increased.

If they tend to occur in the early morning around the time of awakening, the approach may be to increase the bedtime dosage of medication or to use a longer acting anticonvulsant or a time release capsule.

(I’m a fan of longer acting meds because they make me feel more secure. But, that’s only me.)

Another idea is to buy a seizure monitor to help alert you of nocturnal seizures as soon as they occur.

The MP5 Convulsive Seizure Detector Single Sensor Alarm is the most popular seizure monitor with over 6,000 monitors in use worldwide.

(I know, the name is scary and awful.)

A sensor is placed between the bed base and the mattress. When a seizure begins, the muscular convulsions are detected by the bed sensor.

All models feature an adjustable delay control, used to allow a certain amount of movement before an alarm is generated.

The bed sensor sensitivity level can be adjusted to compensate for patient weight, type of bed base and mattress type.

In my case, the seizures themselves awoke me. For you, different meds or schedules could be the answer. Or another person present.

Whatever route you choose, I hope it works.

As they say: “There’s nothing better than a good night’s sleep.”

Don’t we know it!

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  1. Phylis, what was the main point or issue here.?……I’m just asking.


    Comment by mkfarnam — February 15, 2012 @ 7:05 PM

  2. Lots of people are afraid to go to sleep and have horrid nightmares from seizures in their sleep…like I did.


    Comment by Phylis Feiner Johnson — February 15, 2012 @ 8:12 PM

  3. I often have nightmares but have never associated them with seizures. My husband always pats my face to “wake me up to go back to sleep.” Sometimes this works; sometimes it doesn’t.
    Thanks for an interesting article.


    Comment by Maggie — February 15, 2012 @ 8:55 PM

  4. Sleeping alone is scary when these seizures are present. That was my experience for several years. Thanks for the information on bed alarms. It is good knowledge to get out there.


    Comment by FindingStrengthToStandAgain — February 16, 2012 @ 1:19 AM

  5. As I got older, and it seemed that after Doctors finally started leaving me alone,, I only had siezure when I was asleep. I could tell how bad they were by how much pain I had, where it was, or just how I felt or sometime if I knew where I was the next morning.,


    Comment by mkfarnam — February 16, 2012 @ 7:16 AM

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    Pingback by Epileptic Nightmares? | — February 16, 2012 @ 11:01 AM

  7. Can’t you get some kind of med (like Klonopin) that might relax you and help you sleep without seizures?

    Also, are your sleeping patterns regular? Because it’s the REM thing that seems to turn those seizures on.

    All that being said, when I was first diagnosed, I had regular sleeping hours (I was a kid) but that didn’t help or stop me from ripping out my hair. (Until I didn’t have much hair left, thanks to Dilantin.)


    Comment by Phylis Feiner Johnson — February 16, 2012 @ 11:43 PM

    • Thank you for this post Phylis. As someone with TLE, I can relate to it a lot.

      I live alone. I’m single and wanted to be able to be independent so I live in the city (about an hr away from my family) but we still have concerns about my taking seizures in my sleep (which I have done frequently in the past). I often wake up feeling sore and wonder…did I take one? or is just from sleeping wrong, something else I did?

      There are nights I can’t fall asleep no matter what I do. I have a scented spray for my pillows & now have an app on iPhone to play relaxation music on sleep timer.

      I have bruxism (grinding your teeth) that I believe is related to my seizures/anxiety and wear a mouth guard every night.

      There are often times at night or when my alarm goes off in the morning that I see these light patterns when I have my eyes closed. I have to open my eyes & take a deep breath to regain my composure.

      Although I know it is beneficial, I have trouble right now keeping a regular sleep pattern. I’m an online student and there are nights I have to stay up late (1-2 AM) finishing assignments.

      I take anti-anxiety medication (Visatril) regularly and occasionally will try a sleep aid (Tylenol Night).

      The alarms are a little out of my price range. Aside from trying to “regulate” a sleep pattern, do you have any other advice?


      Comment by krk01 — February 17, 2012 @ 4:44 AM

      • It seems like you’re doing all that you can. (I love the scented pillow idea.) And all positive things.

        But the irregular sleep patterns mean you don’t get enough REM (rapid eye movement), which in turn can be the culprit for seizures.

        I take Lamicatal and a small dose of Klonopin as an anti-anxiety drug to help me sleep.

        Perhaps you should try a different anti-anxiety med. I know there’s a lot out there, so it’s a real crap shoot.

        But on the other hand, it does give you a wide array of options.

        I’m no doctor, but that’s what helps me.


        Comment by Phylis Feiner Johnson — February 17, 2012 @ 3:50 PM

  8. YES, EPILEPSY IS A NIGHTMARE & having seizures while one is sleeping or awake DOES NOT MAKE any difference.
    YES, YES, YES,,, There were many times, I wake-up half-conscious from seizures in my deep-sleep, while my wife is ALL OVER ME panicking & trying to hold me down & keep me in bed.
    The next day, after I somehow recovered from my seizures & my nightmares, I FEEL TORMENTING GUILTY, realizing that I had seizures in my deep sleep & my wife had to wake up from her sleep to make sure I’m safe & sound, after a long day at work & next long day to work.
    Therefore, YES, either way you put it, EPILEPSY IS A NIGHTMARE.
    Thank you for sharing your experience.


    Comment by Gerrie — February 17, 2012 @ 4:37 AM

  9. Gerrie,

    Thanks for your valuable (as always) input.

    Do you think the stress factor at work is a trigger?

    And are you post-ictal after a seizure, or has the event passed?

    Because just being post-ictal can exhaust you.


    Comment by Phylis Feiner Johnson — February 17, 2012 @ 4:08 PM

    • Phylis,
      God the exhaust,,,, after each-seizure, I feel like an 18 wheel truck had just drove over me & I didn’t even see it coming.

      For more than 30yrs, I worked long hours & longer days of the week, in manufacturing of High Frequency (RF) wireless network products, which I suspect with potential exposure for anything.
      But, it has ONLY been 15 years since I started having seizures.
      Therefore sure, stress has a lot to do with my seizures.

      BTW Phylis,
      Creating this site, constantly updating the site with various very important information everyday & helping people to share their experiences, ask questions & find answers they can NEVER find anywhere-else is far more noble service than many Doctors, Hospitals & many of us can manage to offer.
      It’s just COMFORTING to visit this site & find-out,,, “THERE ARE ANSWERS TO YOUR MIND-BOGGLING QUESTIONS,,, from people who are going through the same menace, despair, chaos & nightmares one is going through.
      Therefore, more than me or anyone else in this site, you deserve more credit & gratitude for your very important services to the Epileptic-world.

      Thanks a million.


      Comment by Gerrie — February 18, 2012 @ 12:29 AM

      • Well, the docs don’t have time. Did you see

        “Three Secrets to Better Care from Your Doctor”


        The nurses don’t necessarily have the info and the hospitals are so rushed, it’s a favor if they can just keep you alive.

        But we do have ourselves, a knowledgeable “family,” sharing information, caring, and even providing answers to the whole maze of confusing questions. And I’m thrilled that I was embark on this website, meet everybody and help in any way I can.

        But without you, it would just be another page.


        Comment by Phylis Feiner Johnson — February 18, 2012 @ 3:30 PM

  10. Phylis,
    Imagine, you just had grand-mal seizure & you are totally unconscious & the Ambulance costing $1500.00 took you to hospital emergency room costing $3500.00, for a total of $5000.00 bill being processed to be mailed to your home.

    Now imagine, you are semi-conscious in the hospital ER bed & over-hearing like a bad-dream that the ER Doctor & Nurses TALKING & concluding that you just PASSED-OUT & in deep-sleep from some kind of illegal-drug-over-dose, therefore, shoving your bed to the corner, after trying to get-you-up & leave the ER bed !!!!

    I know, you are NOT going to believe it & no one ever will. But, it boils my blood, every-time I think HOW could this happened to me.

    The reason, I’m writing this is to POINT OUT that, more than Doctors, Nurses & Hospitals
    1. we are in the same shoes & understand each other BETTER, what the other one is going through.
    2. we have each-other’s shoulders to cry on & share , mind & soul, while the Doctors, Nurse & Hospitals shove us around.

    Like ALL other “professional-careers”, I’m very sure there are good & bad “professionals” in every profession.
    Too bad, some of us had the UTMOST respect & admiration for the “health-industry”, until being shoved-around by the “health-professionals”.
    Therefore, it’s great we have this site & each-other to share shoulder’s cry on & feel better.
    Again, thanks to you for bringing us together.


    Comment by Gerrie — February 20, 2012 @ 3:18 AM

  11. I got the $1,200 ambulance charge too. And just to take me ACROSS the street.

    As for the medical personnel, they were wonderful in my case. In fact, they saved my life. (I guess it was my lucky day.)

    After IVs of I-don’t-know-what and two heart attacks (because of the stress of cascading seizures), they put me in an induced coma and then life support for 3 days.

    On the OTHER hand, I heard of a man who came into the ER, seizing like crazy. (He was accompanied by his son.)

    The nurses in their infinite wisdom, decided he was causing a scene and rolled him to a back room.

    The son kept on running to the nurse’s station, telling them his dad was in a life or death situation. When they finally got to his room, he was DEAD.

    Sometimes, even having your own advocate isn’t enough. It’s scary.


    Comment by Phylis Feiner Johnson — February 20, 2012 @ 3:31 PM

  12. Phylis,
    Now, you see why I love this site?
    Because I find people living in my shoes, who can understand what I’ve been through, what I’m going through, what I’m talking about & relate to my life.
    Trust me when I say, ,, Even, I would NEVER had believed ANYONE telling me the stories I’ve gone through, before I came up with with seizures 15 years ago.

    Since I’m NOT allowed to drive after I came up with seizures, it takes me less than $20.00 to take TAXI to the hospital.
    Then, it is just FASCINATING to see, EVERY TIME I have a seizure & some GOOD MEANING, GOOD SAMARITAN called the ambulance to help, the ambulance bill is ALWAYS $1500.00 & the BASIC emergency hospital service bill with NO MEDICATION ADDED is $3500.00
    While that could be manageable, the TORMENTING part is the INDIFFERENCE in the hands of those you have come to expect rescue from.
    As if being knocked out & down by seizures is NOT painfully DISTURBING & DISRUPTING enough, the Doctors & Nurses taking you for something more than you bargained for is just ADDING INSULT TO THE INJURY.


    Sadly, Knowing there are NO options, I simply hope for the best.

    Again, Thank you for hearing me out.


    Comment by Gerrie — February 21, 2012 @ 2:12 AM

    • In one study, participants anticipated that their self-perceptions and self-esteem would be more positive if they didn’t have epilepsy. Self-perception turned out to be one of the most important predictors of successful social relationships in people with epilepsy — even more important than seizure frequency, severity, or other medical factors!

      As for me, I’m having a terrible day. I was shaking so badly (and not wearing my skid-proof boots — my fault) that I fell in the parking lot of the drug store. Kind of ironic, don’t you think?

      I was conscious, but it took two very nice people to get me up off the ground.

      Happily home is just 3.5 miles away.

      So, I just stumbled into bed and here I am — 3 hours later.

      The shaking has subsided somewhat, but I feel like crap. And I have to get my stuff together because I’m going to Charleston, visiting a friend on Thursday. (I met her 3 years ago on epilepsy.com!)

      Sigh. Tomorrow will be better. I hope.


      Comment by Phylis Feiner Johnson — February 21, 2012 @ 8:28 PM

      • Phylis,
        I’m sorry to disagree with you but “self-perceptions and self-esteem” is NOT the by-product of VARIABLE personal health conditions.
        They don’t come & go with epilepsy, heart attack, stroke, cancer,,,etc.

        SELF-PERCEPTION & SELF-ESTEEM IS THE SOLID PRODUCT OF A LIFE TIME OF FAMILY STRUCTURE & NURTURE, SOCIAL MAKE UP & CULTURED HERITAGE,,, just like a tree planted on solid ground & raised to stand up solid straight to blossom, does NOT end up being victim of earth-quakes or storms for the ROOTS have spread in to too deep to be uprooted by quakes, storms, tornadoes or firestorms.

        I’m sorry to hear about your ordeals, though, I’m glad to hear that the are good Samaritans around to lift us up, when we are down & out.
        May God bless their kind heart.

        But yeah, with Epilepsy while some days can be manageable, but some days are totally overwhelming nightmare.

        After having lived with-out Epilepsy for most of my life, Epilepsy is nothing more than being taken hostage by UNPREDICTABLE SEIZURES.

        The most difficult part about Epilepsy & seizures is the SUDDEN UNPREDICTABLE & UNEXPECTED KNOCK OUT when one expect it the least, presuming that “EVERYTHING IS OK”.

        And, when one is “HOSTAGE OF EPILEPSY”, one gets to learn & live with your ordeals & my nightmares.
        Too bad, life have to be this way.
        Let’s keep praying & hoping for the best.
        Good luck & have a nice trip to Charleston


        Comment by Gerrie — February 21, 2012 @ 11:06 PM

      • Exactly what I go through. I hate to say it but, to hear someone with your own symptoms, while sometimes wondering if I’m crazy, helps me. I’m sorry for you, us, I hope we all find a cure soon. Good luck my friend💜💜💜💜💜💜💜💜


        Comment by Dawn — November 25, 2017 @ 12:24 PM

      • Well Dawn, I guess there’s comfort in numbers. 😦


        Comment by Phylis Feiner Johnson — November 25, 2017 @ 4:03 PM

  13. You’re right. (Paragraphs #1 and #2.) Point well taken.

    Yes, I agree that epilepsy can sometimes take you hostage. Yesterday, I was shaking so badly, I knew the inevitable would come.

    So I went to bed for a few hours, got up and the shaking was a bit better.

    But I refuse to let epilepsy rule my life. I am a person with epilepsy. It could be a LOT worse.

    Hugs and happiness to you Gerrie, for being so candid and wise.


    Comment by Phylis Feiner Johnson — February 22, 2012 @ 3:38 PM

  14. Phylis,
    Thank you for sharing your experience & providing us this very invaluable forum to share our ordeals, hopes & dreams on how to cope & live with Epilepsy.
    I guess, FIRST I tried to DENY for being Epileptic, then I tried to COVER UP in being epileptic from my co-workers, families, friends & now I’m just ANGRY & BITTER to being Epileptic.

    Therefore, as you can read between my words, I guess I’m just lashing out at the unfortunate predicament, I’ve NEVER grown to accept & overcome.

    Yes, I totally agree with you,,, “I am a person with epilepsy. It could be a LOT worse”.
    Therefore, Thank you for bearing it with me. It feels good to come over here & cry on your shoulders.

    To Health, Peace & Love


    Comment by Gerrie — February 23, 2012 @ 3:39 AM

  15. We’re here for you to laugh or cry or vent or question. It’s sort of like a safe-house. No one here to judge whether your feelings are valid or not.

    I can understand your denial. For many years, epilepsy was my “dirty little secret.”

    I didn’t know anyone who had epilepsy (remember, this was the early ’60s) and I wasn’t about to raise my hand.

    But Gerrie, times have changed. Even if your shame hasn’t changed.

    Anger and bitterness are TOXIC. They’re worse than epilepsy itself. They’re a waste of time and mental energy. (Easier said than done, I know.)

    What I try to do, is channel the negative into positive. Example: writing when the whole world seems a hateful, horrible place.

    You don’t have to overcome epilepsy. (After all, it’s likely that it’s not going to go away.) But you do have to live with it, accept it and plan your OWN destiny.

    Don’t let anger, bitterness or epilepsy rule your life. Think of all the possibilities out there…learn to embrace them…and LIVE!


    Comment by Phylis Feiner Johnson — February 28, 2012 @ 10:31 PM

  16. Hi Phylis, I’m just getting caught up on my reading. So much so that I didn’t know you went down and hurt yourself. Are you alright now? This Epilepsy awareness and support group stuff has been a blessing, but it does keep me from checking up on our little family here. Your advice is always golden and I thank you for educating me. Gerrie is quite a valuble addition to the family. Thanks for your input.
    I want those who don’t know me, why I disagree slightly(that aint often) with one thing you said “After all, it’s likely that it’s not going to go away”. I believed that for 50 years! I resigned myself to the fact that Epilepsy wasn’t going to “go away”. It wasn’t until 2009 that I was given hope with Epilepsy Surgery and have been seizure free 2 and a 1/2 years.PTL! Never give up, with all the new treatments and ideas coming down the pipe, Maybe this SCOURGE we call Epilepsy will be wiped off the face of the planet someday. That’s my prayer,anyway.


    Comment by Charlie — March 6, 2012 @ 1:31 AM

  17. Wonderful insights, as always Charlie.

    Gerrie IS a jewel And you ARE living proof that there is a second life beyond epilepsy!!!


    Comment by Phylis Feiner Johnson — March 6, 2012 @ 3:42 PM

  18. I have gran mal seizures.My boyfriend says I wake up screaming I don’t know it until he tells me the next day.


    Comment by erin — March 6, 2012 @ 8:21 PM

  19. Have you seen a sleep specialist? A sleep study is definitely in order.

    A sleep study lasts for a night, in which complete video monitoring of a person’s sleep is done. This helps in identifying each type of seizure that has occurred. (You MAY be having more than one type of seizure.)

    Afterwards, based on the findings, appropriate medication is recommended.

    I recommend that you explain your experiences with your neuro and then ask him/her about a sleep study.


    Comment by Phylis Feiner Johnson — March 6, 2012 @ 8:48 PM

  20. Just found this site and its great to get some insight into others to find out if things i’m going through are or are not related to seizures e.g intense/extremely emotional/vivid and frightening nightmares as i suffer from night seizures and was shocked to find that in the U.S. they send u out a charge for falling down on in the street – as i’m scottish and from just outside glasgow they ususally just through u in a police cell for the night! And to be honest if i was u i would ask them to kick me into a corner until my seizure had finished rather that take that sort of bill – jeez – thank god for the british health service! (And about the police cell i actually did take a seizure in front of our local police centre and no-one even picked me up to throw me in a cell – i just lay there till i came round with several teeth knocked out and made my way home – they must have been sitting inside saying “just another Glasgow drunk”!) I’m off to see my neuroligist tomorrow and several things i’ve seen here i will bring up so thanks


    Comment by Graeme McClelland — April 16, 2012 @ 12:50 AM

    • Graeme,,,
      Thanks for sharing your experience,

      THESE DAYS,,, It looks like, it’s is a lot easier to be taken for a criminal, violating the “CIVILIZED CODES OF CIVILIZED SOCIETY”, than for a patient in immediate need of emergency medical assistance.

      In my case,,, I once over heard the hospital emergency room Nurse, telling the emergency room Physician, I may have “PASSED-OUT FROM ILLEGAL DRUGS”, even though an Ambulance brought me in for grand mal seizure, when a GOOD SAMARITAN called for help, witnessing my seizure & the Ambulance Technician reported my case in WRITING” to the hospital ER.

      At any rate,,, ENGLAND, IRELAND, SCOTLAND, GLASGOW, USA, CHINA or SIBERIA,,, I would rather have my seizures than prison cells.


      Therefore, FIGHT THE GESTAPOS IN THEIR OWN COURT. proving them there is price to pay for tyranny.

      Wishing the best.


      Comment by Ghebre — April 17, 2012 @ 9:32 PM

      • not advocating long term prison or losing any rights as such – just rather be safer until i came round – who would you rather trust – your local police man or any guy willing to take your wallet and put a knife into you if you started to come round?


        Comment by grammc — April 19, 2012 @ 1:18 AM

      • i am just saying sometimes its safer in the care of a policeman for one night than in the “care” of anyone who comes along when you are lying unconscious on the ground – im not looking to give up any freedom – just looking to get out of immediate danger.


        Comment by grammc — April 19, 2012 @ 1:34 PM

      • just looking to say that sometimes its better in the care of a policeman for one night than in the “care” of anyone who finds you lying in the street late at night – im not looking to give up any long term liberty – just to get my-self out of immediate danger


        Comment by grammc — April 19, 2012 @ 1:52 PM

  21. Graeme, you’d rather be thrown in jail than pay a fine?

    Perhaps you should read the article “Prison Abuse”

    Yes, they do often think that people are drug addicts or drunk.

    Try reading “Violence and Epilepsy” too.

    Yes, people have walked over me in the street and on the sidewalk. (In fact, I’m wearing a walking cast now.)

    But to be charged on top of that (it has never happened to me), is OBSCENE!


    Comment by Phylis Feiner Johnson — April 16, 2012 @ 10:35 PM

    • I’m not saying I’d rather be walked over than have to “pay a fine” as such – what i am saying is that in my case i expected more of my local police force to at least notice me if i’m lying unconscious directly in front of their police station – having passed out through medical reasons/alcohol/drugs or other – for them simply to have a look! And with the charge stated by others in this post e.g. medical bills for what could be a life threatening condition and then being sent out a bill as some have stated before i was quite surprised at – i had no idea that such charges were sent out for ambulance charges ect in the u.s when its something i had never even considered living my life in the uk and suffered from seizures in the street. And finally – in terms of being in a prison cell – at least if they pick you up and put you in there on your own – it is sometimes a lot safer than just lying in the street


      Comment by grammc — April 19, 2012 @ 12:42 AM

    • simply saying that i’d rather be in a safe jail cell on my own for one night and when i regained consciousness i could explain the situation to the officers rather that lying out in what could be a rather dangerous street in the dead of night. The reason also that i also brought up the charges is the previous posts by others stating this happened to them. I dont mean charged by the police – what i mean is charges sent out for ambulances/hospital ect that you had stated you received – i would of course never expect anyone to receive any kind of criminal charge for having a seizure. But also – lets see if i can help anyone i just visited my neurologist yesterday and discussed with him problems with depression issues with epilepsy/manic thoughts eg going repeatedly over issues that are not that relevant and very vivid and extremely frightening dreams – i was advised that this may be down to either zonegran or lamotrigine and would be cutting these down. I have also experienced in the past night seizures where i would get up/stumble in a daze and then possibly be sick – in relation to previous posts on getting up and running from your bed. This could be the problem they are suffering from.


      Comment by grammc — April 19, 2012 @ 1:13 AM

      • Have you had your blood levels checked?

        Last week, I had 11 vials of drugs drawn to see what was going awry with my system.

        (I repeated fall down and last week, I broke my foot.)

        My other question is how much lamotrigine do you take? For me (200 MG) has been extremely successful, but of course, no two bodies (or chemistries) are the same.)


        Comment by Phylis Feiner Johnson — April 23, 2012 @ 5:36 PM

      • My Neurologist has decided to lower my zonegran in gradual steps and put up lamotragine


        Comment by grammc — April 26, 2012 @ 1:16 AM

    • what i’m saying is that its that its sometimes safer in police care than lying on the street – and i was referring to a charge for the ambulance/hospital ect that was posted earlier – not for any police charge. I would also hope that an unconscious person taken into a police station would be checked over first – but mistakes are made and hopefully i would be put in a cell on my own – i would also recommend carrying a card stating you have epilepsy to those who dont already carry one. If put in a police cell and given the time to come round i could then explain my situation. At least if taken in by the police there’s the chance that an ambulance may be called when no-one may notice you – seizures dont always happen in broad daylight and this one with me happened pretty late at night but as the police station was across the road i at least hoped for some assistance by them – be it taking me into the station and calling an ambulance or putting me in a cell thinking it was due to over consumption of alcohol/drugs ect. And if i was being a little blase perhaps thats due to the scottish nature. I have actually asked (jokingly to my former employer) that they move me into a corner until my seizure had finished due to the fact they were eager to get rid of me due to the problems i created eg adjusting shifts ect and the fact i had to repeatedly bring in back up from unions – which also they didnt like – but thanks for the feedback – i will try to be more to the point in future rather than making jokes where they can be misinterpreted.


      Comment by grammc — April 19, 2012 @ 1:46 AM

      • My ambulance ride (across the street) cost $1,200! We’re still fighting that charge, 3 years later.

        I think it’s smart and good sense to carry a list of your meds in your pocket. Although, someone told me disturbingly that first responders aren’t permitted to go through your things…but I think that’s when you’re unconscious. After all, how else could they identify you?

        As for first responders, police and hospitals, nothing guarantees that your behavior will be recognized as a seizure.

        I’ve heard horrid stores of all three. But happily here, The Epilepsy Foundation has launched an aggressive campaign to train first responders, fire and police personnel, teachers, nurses, and even ER staff how to recognize a seizure and what to do.

        The question is: how many people can they reach and how?

        I was at a high school fair with the police chief and fire chief present and asked them what they knew about epilepsy. To my horror (at least they were being honest), they said “NOTHING!”

        So they scooped up my information, plus plenty of first aid cards, and said they would have a meeting with their employees.

        And that’s just one example. Pretty scary, don’t you think?


        Comment by Phylis Feiner Johnson — April 23, 2012 @ 6:16 PM

      • Ironically it was my neurologist just the other day who suggested that i carry details of my meds ( well thats not really ironic i suppose) but its something i just hadnt even thought of or even considered even though i carry a card which can be easily found in the top pocket of my jacket stating i have epilepsy and giving my doctors/parents name and phone number. Caring details of meds should be this first thing you should think of – most guys on the street wont know what they are but when you are in an ambulance unconscious this is something they need.


        Comment by grammc — April 26, 2012 @ 1:23 AM

      • Thanks to TOTAL-STRANGERS,,,,



        Exposed to mercenary-vultures in some HINTERLAND crafted for human-existence, ONE can totally UNDERSTAND the desperation to look for merciful, safe & secure RESCUE & peace of mind, when one is CORNERED with out CONSENT, knocked down & knocked out unconscious.

        Even the POLICE can easily turn to your tormentors, one of them telling me,,,

        “My sister have Epilepsy, but she does NOT act like you”, when the POLICE Officer felt,,,,


        Sure, there are BEASTS out there, praying over human-misery.

        And there are TOTAL STRANGERS, good Samaritans, who take it upon themselves to help out total stranger like me, SEIZING & RUBBING FACE DOWN the hard-cement of the street, Coffee-shop, Restaurant, Library, Cinema-theater, employment establishment,,, etc.

        Thanks to TOTAL-STRANGERS coming to my rescue, HUMANITY IS WORTHY OF LITTLE FAITH.

        As for AMBULANCE, ER-HOSPITAL, DOCTOR VISIT & PRESCRIPTION drug bills, it’s just OUTRAGEOUS TO IMAGINE how this could be possibly LEGAL.

        TOO BAD,,, In these age of “CIVILIZATION”, sad to see people CONTEMPLATING TO TRADE ONE NIGHT OF FREEDOM for medical bills & security.

        Life has to be better than this.

        Try to COUNT ON good Samaritans lifting you up, instead of locking you down, when you were/are down & out.

        Wishing you all the best.

        In any case,, Please have some


        Comment by Gerrie — April 23, 2012 @ 11:49 PM

      • get your point but i fear we are getting away from the main issue on this page – lets see if i can help instead of arguing over points of view on health service charges ( dont mind paying – i just cant stand the hospital food). This page is about the problem of epilepsy nightmares/depression/aggression over irrelevant issues due to medication side effects – when talking to my neurologist recently and advised him of problems i was having eg suddenly waking up from nightmare in a very distressed state/going over issues and making up arguments in my head and getting generally aggressive he recently reduced my dosage of zonegran and increased my dosage of lamotragine and stated to me that zonagran can cause these affects along with depression in general so if others are on this and have these problems perhaps they should check this possibility out. I would be interested to hear if others who have these problems are also on this medication.


        Comment by grammc — April 26, 2012 @ 1:12 AM

      • grammc ,
        Come on now !!!

        Lighten-up,,, Take it easy.
        But, to answer your question, YES, seizure medications can cause physiological hard ships.

        In fact just last week, on April 12, 2012,,,,
        “A teen brutally murdered his mother with his bare hands & his Lawyer “blamed the beating death of Kay on his seizure medication. …

        Teen Who Brutally Killed Mother: “I Don’t Remember Anything …”
        Apr 12, 2012 – Wachtel’s lawyer has blamed the beating death of Kay on his seizure medication. …

        BTW: Imagine, OCEANS AWAY & CONTINENTS APART from all parts of the world, coming to EPILEPSY-TALK to share & DISCUSS our medical difficulties, our PROBLEMS & SOLUTIONS, ask questions & find answers & EXCHANGE OPINIONS, comfortably sitting cozy in our homes, schools, libraries, coffee-shops, restaurants,,, at our own convenience, with out having to CHASE “DOCTORS” from hospitals to hospital all over our ENCLAVES & end up more distraught & confused, ?

        grammc ,,,,
        Trust me, when I say, for most of my childhood & adult life, I KNEW NOTHING nor DID I CARED TO KNOW ABOUT Epilepsy, until I ended up under the spell of one.

        Thanks to Epilepsy Talk, some of us have come, a VERY LONG WAY from wondering “WHAT’S SEIZURE?”

        My point,,,
        Everything we are sharing here, neurological, physiological, physical, financial,,, questions, answers, fears, hopes, dreams, ideals are VERY RELEVANT & dear to our hearts, minds & souls.

        Therefore, KEEP IT COMING, until we eliminate Epilepsy.

        Good Luck!


        Comment by Gerrie — April 26, 2012 @ 4:16 AM

  22. This may illuminate some of your questions:

    Anti-Epilepsy Medication Side-Effects


    Also, maybe this:

    Anti-Seizure Medication Conflicts…



    Comment by Phylis Feiner Johnson — April 26, 2012 @ 2:28 PM


      Manageable or not, it good to know where, when & how our “remedies” could have potential RISKS & cause UNTENDED difficulties.

      Knowing the SIDE-EFFECTS & consequent hardships ahead of time, can possibly help AVOID far more tragedies, FATAL-deadly family & social conflicts.

      Thanks for very interesting links & GREAT ARTICLES.


      Comment by Gerrie — April 26, 2012 @ 7:19 PM

  23. Ooops! I gave you two of the same links… It’s

    Anti-Epilepsy Medication Side-Effects



    Anti-Seizure Medication Conflicts…


    Sorry for any confusion…


    Comment by Phylis Feiner Johnson — April 26, 2012 @ 8:39 PM

    • Doesn’t matter – i appreciated the link and i understand where you are coming from here – its like trying to 6 different balls of different sizes with the medications!


      Comment by grammc — April 29, 2012 @ 2:07 PM

  24. Yup. And it’s a matter of how well you can juggle.


    Comment by Phylis Feiner Johnson — April 29, 2012 @ 3:16 PM

  25. I used to have nightmares whilst awake when I suffered from a seizure, but I’ve found the older i got the more conscious I seemed to be whilst the seizure was taking pace and so the effects were lesser. I found that if i looked out of the window it was as if the seizure just stopped. Anyone else find this? Just curious and it might help someone I guess.


    Comment by kibsi — May 20, 2012 @ 9:01 PM

  26. I think that looking out of the window eg. diversion and/or visualization can both be effective, if you’re able to do them at the time.


    Comment by Phylis Feiner Johnson — May 21, 2012 @ 9:15 AM

    • this sounds familiar (but not directly related to occasions when i used to take photo-sensitive seizures eg when i felt the oncoming rush of a seizure (usually adrenaline/increased heartbeat) if i slowed my breathing/concentrated on or calming down this would stop the seizure. I also feel the big adrenaline rush due to the feelings of being backed into a corner/ being chased/general aggression and having to calm down after this.


      Comment by grammc — May 21, 2012 @ 3:36 PM

  27. Was that your aura, feeling you were being backed into a corner…being chased…and general aggression? Or is that the result after you slow yourself down after breathing and concentrating?


    Comment by Phylis Feiner Johnson — May 21, 2012 @ 3:44 PM

    • in relation to my photosensitive seizures as a young person eg childhood and upward i would induce seizures due to the “thrill” of the adrenaline rush and would get an aura before the seizure but could prevent it (most of the time – but not all) by centering my mind/controlling breathing – i get these same feelings during the nightmares (though they are not induced) and although over the past month my night-time seizures have been reduced due to better medication – the nightmares continue


      Comment by grammc — May 21, 2012 @ 3:55 PM

      • also i dont think the night-time nightmares are auras as such as they are usually followed by petit mal or gran mal


        Comment by grammc — May 21, 2012 @ 4:00 PM

      • So “your dream” came true? First you induced seizures…Then you actually GOT nightime seizures? And those were accompanied by nightmares.


        Comment by Phylis Feiner Johnson — May 21, 2012 @ 6:33 PM

  28. Grammc, do any of these slound familair?

    A Menu of Epilepsy Auras



    Comment by Phylis Feiner Johnson — May 21, 2012 @ 6:37 PM

  29. […] Epilepsy Nightmares — WHY?    https://epilepsytalk.com/2012/02/15/epilepsy-nightmares-why/ […]


    Pingback by Nocturnal Seizures — A Living Nightmare | Epilepsy Talk — March 18, 2013 @ 10:22 AM

  30. Hello everyone, I have been trying to find a site where I can talk with people about what I’m going through since I’m new to all of this…. So far I have been strictly nocturnal seizures but they have been scaring the crap out of me… Just about four days ago I took a nap and had a seizure went to bed and had a seizure and had a seizure again falling asleep from that one… I’m now scared to go to bed alone my tongue is but not and I am just scared all the way around….. I have medication at my house but that was what I had my first seizure the emergency room gave it to me without knowing anything about me or anything I was going through so I never took medicine….. Now I’m waiting for my medical to kick back and on October 1 until I go to the doctor to run tests. I am so scared I don’t know how to let go of the fear


    Comment by Corina — September 9, 2014 @ 8:58 PM

  31. Corina,

    I’m so sorry about your difficulties. But so happy you found us. You’ve come to the right pace to share with caring people.

    And remember, first and foremost, anticipation is your worst enemy!

    As far as nocturnal seizures go, here’s a little about what I went through:

    “When I was young, in the middle of the night, I’d have these horrible seizures.

    I’d wake upright with the inside of my head spinning at about 100 miles per hour.

    Clutching my head, I’d tear at my hair — anything to make it stop.

    And eventually it did. And I slipped back to sleep.

    Terrified. Wondering when the next one would hit.”

    Nocturnal Seizures — A Living Nightmare

    You’re probably right about the meds given to you in the ER. It was more likely a stop-gap thing than the actual diagnostic med you need.

    Do you have a neurologist? If not or if this one doesn’t suit your needs, here’s a list that’s a compilation by website forum members who have had positive personal experiences with docs over the years.

    2014-2015 Comprehensive List of GOOD Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors


    Also, here are some tips for your doctor’s visit. The most important thing is the be prepared.

    Make sure you keep a daily seizure diary. Each time a seizure occurs, write down the time, the type of seizure it was and how long it lasted. (If you can.)

    Write down any major stresses or recent life changes that could trigger seizure activity. All of this can help your doc can get a better idea of what’s going on with you.

    Come armed with questions. Preparing a list of questions in advance will help you make the most of your time with your doctor.

    List your questions and the doctor’s answers from most important to least important, in case time runs out.

    Be persistent in asking your questions until you fully understand the explanation. If you don’t understand a diagnosis or treatment, ask more questions — take more notes.

    Make sure you understand the script and whether name brand or generic will make a difference to your condition.

    And make sure you know exactly what the doctor wants you to do before you leave the office.

    Ask about follow-up and get a contact number so if you happen to think of more questions, or forgot something the doctor told you, you can call the office immediately and request the information.

    From: Secrets to Better Care from Your Doctor


    Corina, I hope some of this helps.


    Comment by Phylis Feiner Johnson — September 10, 2014 @ 12:16 PM

    • Thank you for your quick response… Every day seems to get just a little better as far as the fear goes but i get a sinking feeling everytime i go to lay down for bed because i know it could happen. Im afraid of sleep now and it sux. I also cannot sleep alone anymore im terrified of it. This has put me in a state of depression to know that im having this and do not know when to excpect the next one. Last stretch was 4 months but before that it was a month here and there. I am waiting patiently to go to the dr. So i can feel a little more at ease with medication. Has anyone had episodes even after getting medication?


      Comment by Corina — September 10, 2014 @ 5:51 PM

  32. Almost all meds have side-effects. With all those different drugs out there, it really is a crap shoot.

    It might sound strange, but in the meantime, do you have a dog or cat? Because sleeping with one will often awaken them — and you — to irregular movements.

    If you don’t awaken to theirs! 🙂

    Hang in there, Corina…


    Comment by Phylis Feiner Johnson — September 11, 2014 @ 11:04 AM

  33. My son will scream in the middle of the night and he will have seizures and everytime he have an eeg vedio done and it shows up It’s normal and the drs thinks I’m lying about him having them how can I have them believe me that he having them? Besides record him all the time.


    Comment by janet — July 31, 2015 @ 10:35 PM

  34. Video taping him is a good idea, and so is further testing — like a sleep study.

    These night terrors can be diagnosed by a sleep study called a Polysomnography, which records your brain waves, the oxygen level in your blood, heart rate and breathing, as well as eye and leg movements during the study. By that it can be determined whether he has seizures and or a sleep disorder.

    In the meantime, for your peace of mind, I would suggest a monitor.

    Top-Rated Seizure Monitors


    Comment by Phylis Feiner Johnson — August 1, 2015 @ 8:25 AM

  35. Hi, Phyllis,
    Does epilepsy cause the nightmares, or do the AEDs cause the nightmares? One neurologist told us that Ativan was known to cause nightmares. (I would assume that is true for other benzodiazepines too.)


    Comment by Martha — August 27, 2017 @ 9:49 AM

    • Nightmares are a kind of parasomnia — an umbrella term for a group of sleep disorders that include night terrors, sleepwalking, teeth grinding, and restless leg syndrome.

      But I wouldn’t discount the Ativan either.

      In fact, I’d probably consider the Ativan as the culprit.


      Comment by Phylis Feiner Johnson — August 27, 2017 @ 10:01 AM

  36. Sleep Paralysis:

    Todd’s paralysis is also referred to as Todd’s paresis, Todd’s palsy, or postictal paresis.

    It is a neurological condition, meaning it relates to the brain and nerves.

    Most people who experience Todd’s paralysis have epilepsy, and symptoms occur immediately after a seizure.


    Comment by Syed yusuf — May 28, 2018 @ 12:04 AM

  37. Phyllis, I didn’t know they made seizure monitors for a person’s bed!😱🤗🤗🤗 All neurologists have talked with me about is “Well, why don’t we try that medicine, or maybe that one. With me it’s like medications either work a bit, not at all, or the side effects go out of control. I’ve also been on the VNS, which turned out to be a waste of time, had a Temporal Lobe Lobectomy done, but they couldn’t remove all of the scar tissue and neurologists have been too scared to try a second one, but I am not. But my seizures happen late at night or early in the morning and I’ll wake up with a bunch of aches, and once in awhile I’ll be thrown out of my bed, kind of like the seizure is saying “Good Morning!” Why don’t neurologists talk about those kind of monitors?🤔


    Comment by David Jensen — August 21, 2018 @ 2:22 PM

    • Not only can you have a seizure monitor for your bed, but you can have a “smart watch” which will notify friends and loved ones in your network of your danger.

      Here are the watches:

      Smart Watches:

      NEW! Apple Seizalarm — A user-friendly iPhone and Apple Watch app which allow those with epilepsy and other seizure disorders to alert emergency contacts automatically when seizure-like motion is detected or manually if they need immediate help or think they might need help soon. Detects seizure-like motion, requests immediate help, seizure monitoring control, GPS location tracking, and event log tracking. http://seizalarm.com/

      Embrace — Created to track your activity, stress and overall body balance, enabling people who live with Epilepsy to get an alert when an unusual event happens such as a convulsive seizure, warning them and their loved ones. https://www.empatica.com/product-embrace

      The SmartWatch — A motion detecting and alerting wristwatch that can detect seizures and alert caregivers within seven to 10 seconds. http://www.smart-monitor.com/
      For details and pricing information, please call 1-888-334-5045.

      And here’s an article about the bed monitors:

      Top-Rated Seizure Monitors


      Maybe these will help you?


      Comment by Phylis Feiner Johnson — August 21, 2018 @ 3:30 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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