Epilepsy Talk

Nocturnal Seizures — A Living Nightmare | March 18, 2013

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 weren’t the only ones I had.

But since they occurred during deep sleep, I was diagnosed with frontal lobe seizures — a type of partial epilepsy that begins in the frontal lobe — occurring in the part of the brain behind the forehead.

Frontal lobe seizures are supposedly brief, but mine lasted longer than the defined two minutes and boy, were they violent.

Dilantin didn’t do a thing. But back then, there weren’t many (any?) choices.

So I kept thrashing and wildly tearing at my head, relentlessly.

I didn’t have sleep apnea. I didn’t drink alcohol or caffeine. (I was only 14 when they began.)

And there was no sleep deprivation, except when my REM sleep cycles were thrown off because of the seizures.

Did the nocturnal seizures lead to decreased cognitive function? You bet.

Was there memory loss? Yes.

Confusion? I didn’t know if I was coming or going.

Other types of seizures with less seizure control? Unfortunately I did.

I was lucky I didn’t have the type of nocturnal seizures that occur in light sleep.

No bitten tongue, broken teeth, concussions or bedwetting for me.

Those came with temporal lobe seizures, myoclonic seizures, and absence spells.

Interestingly enough, studies have shown that 10-45 percent of people with epilepsy have seizures that occur predominantly or exclusively during sleep or occur with sleep deprivation.

The good news is that up to 80 percent of them achieve control of nocturnal seizures with medication.

The scary news is that people with nocturnal seizures may be at the highest risk for Sudden Unexpected Death in Epilepsy.

That could be because often nocturnal seizures are a challenge to diagnose and often they don’t show up on EEGs.

But there are options other than an EEG which can better identify your seizure. (Even though the doc will initially recommend an EEG.)

For example, Video EEG Monitoring allows precise correlation between seizure activity in the brain and your behavior during seizures.

An MRI uses radio waves and a powerful magnetic field to produce very detailed images of soft tissues such as the brain.

And a CAT scan can provide detailed information about the structure of the brain to help point to where your nocturnal seizures originate.

And today, there ARE meds that can help.

Unlike my Dilantin dilemma where my blood levels became so toxic, I went into a coma.

I favor Klonopin, which is helpful for the REM sleep disorder and (mostly) a whole night’s sleep.  

But, like every other type of seizure, finding the right med for nocturnal seizures is a puzzle, an enigma, a brain teaser.

Each AED is a crap shoot. But, the more you try, the more likely you are to beat this thief of the night.

I finally did. You can too.

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

Other articles that may be of interest:

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

Epilepsy and Melatonin — Yes? No? Or Maybe So?    https://epilepsytalk.com/2012/11/19/epilepsy-and-melatonin-yes-no-or-maybe-so/

Dilantin — Hero or Horror?    https://epilepsytalk.com/2010/10/06/dilantin-%e2%80%93-hero-or-horror/

Beyond EEGs…Diagnostic Tools for Epilepsy    https://epilepsytalk.com/2010/09/13/beyond-eegs%e2%80%a6diagnostic-tools-for-epilepsy-2/

Resources:

http://my.epilepsy.com/articles/ar_1063155671

http://www.aastweb.org/resources/A2Zzz/Literary%202010%20Wells.pdf

http://www.ehow.com/about_5139123_signs-symptoms-nocturnal-epilepsy.html

http://epilepsy.med.nyu.edu/epilepsy/types-epilepsy/frontal-lobe-epilepsy

http://www.wisegeek.com/what-is-frontal-lobe-epilepsy.htm

http://www.ncbi.nlm.nih.gov/pubmed/22192074

http://www.epilepsy.org.au/about-epilepsy/understanding-epilepsy/nocturnal-seizures-during-sleep

http://www.mayoclinic.com/health/frontal-lobe-seizures/DS00810/DSECTION=tests-and-diagnosis

http://www.autismseizureselfinjuriousbehavior.com/2011/03/22-random-things-to-know-about-seizure.html

http://www.columbiaepilepsy.org/teens/docs/Sleep.pdf

http://www.epilepsy.org.au/about-epilepsy/understanding-epilepsy/nocturnal-seizures-during-sleep


16 Comments »

  1. I had nocturnal seizures and always thought I was lucky because then none of my classmates knew I was having seizures. That gratitude turned to fear when I realized that since I was already sleeping so soundly on my back without someone in the room, I could easily chose on my saliva. Dangerous!

    Like

    Comment by FindingStrengthToStandAgain — March 18, 2013 @ 1:56 PM

  2. Well, here are 2 suggestions:

    Sleep on your side (duh!), using pillows as bolsters to keep you from rolling over…

    Or try a seizure monitor.

    Here’s an article outlining the best of them:

    Top-Rated Seizure Monitors

    https://epilepsytalk.com/2012/07/17/top-rated-seizure-monitors/

    I hope this helps. Because, as the article says, there’s nothing like a good night’s sleep!

    Like

    Comment by Phylis Feiner Johnson — March 18, 2013 @ 3:25 PM

  3. My foster son moved in with me in July 2012, unbeknownst to me with totally uncontrolled epileptic and non-epileptic seizures. At the time his meds were completely unregulated because at 17 years old he was not taking them regularly. I have since helped him to get all his meds under control.

    Unfortunately, it has been nearly 8 months of almost perfect regulation and he still has regular seizures. We were in to see his neurologist 6 months ago, but no changes were made to his prescription, and little was done about the seizures.

    While he also as many seizures while he is awake, most occur while he is sleeping (typically just before he wakes up or just after he falls asleep). I have grown accustomed to keeping a keen ear to listen for seizures and monitor them so that he is safe during his sleep.

    All of his seizures vary from one to the next, some are complex partial while others are tonic clonic. Since we’ve gotten his medication under control none of the seizures seem to last more than 30 seconds, with most being no more than 5 – 10 seconds.

    This is my first time dealing with epilepsy in any way, and I feel frustrated for him because with all the efforts we’ve been making (counseling to deal with non-epileptic seizure events and regulating pills, limiting video games, etc) nothing seems to be working to control the seizures. The only promise we’ve shown was going from 5-10 seizures daily for about 2 months back in the fall, down to 5 – 10 every week.

    I would greatly appreciate any thoughts or suggestions, because we have another neurologist appointment in 2 weeks.

    Like

    Comment by Scott Oosterom — March 22, 2013 @ 11:00 AM

    • Scott, I, too, have/had nocturnal seizures. So does my Sis & Daughter. Phylis suggestion of a Daily Journal is a Very Good Idea! I personally recommend Diaries to all I talk to. It took me & my daughter 10 yrs to find medication that worked for us. Time & Patience (lots of Both) is Needed! Definitely take a list of questions w/ you + the Journal! BTW: There is Hope! I have been seizure free for almost 25 yrs. My daughter is going on 2 yrs w/ control. Sis went to a Homeopathic MD for treatment & has been seizure free for 5 yrs now. Best Advice: Learn everything about Epilepsy & all it’s aspects. I know your step-son will need more than just a psych & meds. See if he will join a teen support group. Either Live (if you have one in your area) or On-Line. Hugs!

      Like

      Comment by Candi — March 27, 2013 @ 2:45 PM

  4. Welcome Scott,

    A few questions and a few articles that may help.

    First, I’d suggest you keep a daily diary, noting your son’s sleep patterns, what he eats and when, daily activities (stressful exercise, emotional upsets, etc.), the time of taking drugs, when seizures occur and if possible, their duration.

    Here are some tips for visiting your doc. It’s always good to write your questions down in advance and be prepared.

    Secrets to Better Care from Your Doctor
    https://epilepsytalk.com/2010/06/13/secrets-to-better-care-from-your-doctor/

    I don’t know what kind of testing your son has had, but there are many more thorough options than just an EEG.

    Beyond EEGs…Diagnostic Tools for Epilepsy
    https://epilepsytalk.com/2010/09/13/beyond-eegs%e2%80%a6diagnostic-tools-for-epilepsy-2/

    Here are some common seizure triggers, some of which you’re already familiar with:

    Common Epilepsy Triggers
    https://epilepsytalk.com/2010/03/02/common-epilepsy-triggers/

    Instead of staying up all night worrying, you might consider a seizure monitor.

    Top-Rated Seizure Monitors
    https://epilepsytalk.com/2012/07/17/top-rated-seizure-monitors/

    I really feel for you, Scott. Here you are in uncharted territory.

    Meanwhile, adolescents are famous for non compliance, which doesn’t make your job any easier.

    I hope this helps some.

    If there’s anything I can do for you, please feel free to sing out.

    Like

    Comment by Phylis Feiner Johnson — March 22, 2013 @ 12:31 PM

    • Thank you for your valuable insight. I have taken many notes from reading your posts. We have restarted the seizure diary that we had started. Today we met with the neurologist and it was a good visit, thanks to your suggestions on the kinds of information to keep track of. We were able to get some questions answered, and even get some medication.

      My foster son will be trying a new medication which may help to eliminate the remaining seizures. Tomorrow we will be filling his prescription of Keppra. Initially he will be on 500 mg twice daily, then 1000 mg. This will be in addition to his divalproex, dilantin and trileptal.

      Like

      Comment by Scott Oosterom — April 2, 2013 @ 12:06 AM

  5. FABULOUS! I’m so happy to hear your good news.

    One thing. Not to scare you, but pay careful attention to your son’s behavior on Keppra. It can cause aggression, anxiety, depression.

    (Just what you need with a teen-age boy. As if there isn’t enough to deal with.)

    Keep careful notes on his behavior patterns as his meds get titrated up and report back to the doc (and me!!!)

    Good luck!

    Like

    Comment by Phylis Feiner Johnson — April 2, 2013 @ 10:31 AM

  6. Hi! It’s been to long. Although I really am reading all this, I’m just not saying much. I can’t explain that?spent a long time truly trying to understand “IT”& then offering my own experiences,to help or at least show further insight into the HUGE variations in people with Sz. Disorders.
    Somewhere along the way I saw myself as just repeating things & maybe felt like I was in a game of one up man ship. I do know that is a true problem (mental) where the person just gets worse , I have never been like that.
    More always telling people I am “FINE” while hiding what happened to me last night(on-topic)
    Well as I age I found & am now forced to rediscover,that you can’t always play it off or not show just how “sick” you may really be!
    I said all that because I had to. Fact is I cried reading the 1st part of this. Can’t imagine what my teenage mind would have done with this? I should have been a statistic as a teen without E,no doubt with E my stupidity ,really would have killed me.
    The journey with a nightmare ,like you describe is exactly what I have been doing for the last 20 years.
    Most of my T.C. szs. ,until a few yrs. ago lasted 5-20 mins. & have been VERY VIOLENT, broken bones, massive bruising,from stress, screaming so loud have alerted neighbors & gone hoarse, more recently,dislocations, now my hips, shoulders & as we speak,the lower 4 discs in my back, I have not walked since Fri.
    The explanations on sleep cycles were also accurate, I have watched “IT” change several times,from 1st rem (just falling asleep) to second(deep sleep) or when awakened. while this is still fascinating to me, it has become quite frustrating. I have also referred to our postictal time ,as a revolving door or an escalator you can”t get off of. meaning you need the sleep to prevent the sz. the you have the sz. & now you can’t go back to sleep. That’s not your avg. insomnia folks. If you need to solve a few of the worlds problems, just get a room full of people in this state of mind & start throwing questions at them.(yes I laugh saying that) Have been trying to shut that switch off for 45 yrs.
    I have never been scared of “IT”, I have been admitting more lately & I can say I am truly tired of being my own worst enemy.
    I hope anyone dealing with this as a witness or the person doing “IT” understands it is just your brain mis-firing. Providing a HAPPY place for that person or being that person & knowing you control you, smiling is not an option ,it is a necessity,essential ,to put it bluntly “living longer” or going insane.
    BTW all this rambling may have come from the fact that my song of of the day ,for a few days last week, was, “WELCOME TO MY NIGHTMARE”.
    “Loneliness is an illness, please share”. Peace. Rick

    Like

    Comment by wichitarick — April 15, 2013 @ 4:08 PM

    • Rick, I’m so GLAD to hear from you and know that you’re with us.

      And so SAD for all you’ve being going through.

      But please, don’t feel that you have to put on a wise or happy face to come here.

      Our “family” has many problems. As individual as we each are.

      Together, we try to find comfort and wisdom through the personal experiences we share.

      And sometimes (do I dare say it?) we come up with solutions.

      Please, don’t be a stranger. I’ve missed you.

      Like

      Comment by Phylis Feiner Johnson — April 15, 2013 @ 6:05 PM

  7. Hi! thanks. I read this but ,daughter had to do homework,priorities you know lol
    & hey I’M WALKING!!!! actually feels great standing but sitting or laying down is an 11 on the 1-10 pain scale. shew.
    Don’t usually argue with peoples thoughts,writings but to quote you “And so SAD for all you’ve being going through.” while I understand & appreciate concern ,sad is not right.
    Staying on the nocturnal szs. ,I find it amazing the variations in people who do this. I think a lot of people & forbid children, that have this & don’t ever know it because they are only having a minor spasm or twitch.
    Now I have to live with a new problem because I sleep alone ,while it may be good I’m not scaring the he## out of her anymore it makes the understanding of when & what happened a lot harder to sort out.
    My recent issues with this are different than before. I am aging & the recovery time is longer & my szs. are changing again. while medication has made them shorter & most of the time ,not as physical , BUT I now have a mild headache,almost like a concussion or a migraine waiting to happen. That is an odd feeling & coming from me that says a lot, I have a very real understanding of what “odd” might feel like.
    I have also sleepwalked around 5 times in the past few yrs. while that’s unknown to me that is an increase,at least since childhood.that worries me a little & not something I would tell anyone.
    I will keep posting & I hope everyone is careful. Rick

    Like

    Comment by wichitarick — April 16, 2013 @ 12:32 AM

  8. I understand you probably have nocturnal frontal lobe epilepsy…but what other seizures do you have?

    Have you told your neuro about your sleepwalking? Because he might be able to prescribe an adjunct med that would help.

    Glad you’re on your feet today!!! Wouldn’t it be nice to walk AND sit?

    As for the headaches. Do they feel like a migraine? If so, you might be interested in this article:

    Epilepsy & Migraines — Kissing Cousins

    https://epilepsytalk.com/2010/09/12/epilepsy-migraines-kissing-cousins/

    Like

    Comment by Phylis Feiner Johnson — April 16, 2013 @ 9:20 AM

  9. Dear Sylvia,

    There is no money involved in this website nor is there advertising.

    It is a labor of love.

    Perhaps you should try http://www.epilepsy.com

    I’m sure you’ll be happy there.

    Like

    Comment by Phylis Feiner Johnson — April 21, 2013 @ 10:37 AM

  10. I have nocturnal seizures and they are humiliating. Waking up with a wet bed, bitten tounge, feeling sometimes for days like I’m ready to pass out, and nowhere else to turn for advice. My husband says that because i don’t have grand mal seizures that i must be faking the side effects…..not true but whatever.

    Like

    Comment by Jennifer — October 21, 2017 @ 6:54 AM

    • I think you need to sit down with your husband and give him a little talk. Or even better, take him with you to your next neurologist appointment to show him that it’s for real.

      Like

      Comment by Phylis Feiner Johnson — October 21, 2017 @ 8:45 AM

  11. I have nocturnal seizures and they are humiliating. Waking up with a wet bed, bitten tounge, feeling sometimes for days like I’m ready to pass out, and nowhere else to turn for advice. My husband says that because i don’t have grand mal seizures that i must be faking the side effects…..not true but whatever. They don’t have to be grand mal to make me feel like grand poop.

    Like

    Comment by Jennifer — October 21, 2017 @ 6:57 AM

    • Nocturnal seizures can be very hard to witness. But doesn’t he sleep in the same bed as you? Doesn’t he see you thrashing around? Is he blind?

      Like

      Comment by Phylis Feiner Johnson — October 21, 2017 @ 8:47 AM


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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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