Epilepsy Talk

The Nightmare of Nocturnal Seizures | April 11, 2015

According to an article in Journal of Neurology, Neurosurgery & Psychiatry, if more than 90 percent of your seizures occur while sleeping, you are said to have sleep seizures.

The article also notes that an estimated 7.5 percent to 45 percent of people who have epilepsy have some form of sleep seizures.

Since seizures occur in sleep during the night, it’s often hard to diagnose them, except for unusual movements at night, confusion upon awakening, bed wetting or falling out of bed.

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

It’s believed that sleep seizures are triggered by changes in the electrical activity in your brain during the stages of sleeping and awakening. Most nocturnal seizures occur in stage 1 and stage 2, which are the stages of lighter sleep.

And nocturnal awakenings are sometimes confused with insomnia. Epilepsy patients are often unaware of the seizures that occur while they sleep.

They may suffer for years from daytime fatigue and concentration problems without ever knowing why.

In contrast, panic attacks typically occur within three hours of sleep onset and are most commonly seen in the transition from stage 2 to stage 3 sleep.

And after these night terrors, which are accompanied by screaming and intense fear, the person falls back to sleep and sometimes has no recollection of the episode when awakening in the morning, except in some cases, waking with a bitten tongue or a disordered bed.

Other people can recall the episode in the morning and this frequently leads to dread and anticipation of another attack.

Nocturnal seizures are associated with certain types of epilepsy, including:
Juvenile myoclonic
Awakening grand mal
Benign rolandic (also called benign focal epilepsy of childhood)
Electrical status epilepticus of sleep
Landau-Kleffner syndrome (LKS)
Frontal onset seizures

Doctors evaluate a number of factors to diagnose epilepsy and determine the type. Factors include:
The type of seizures you have
The age when you began having seizures
Family history of epilepsy

To diagnose epilepsy, doctors may use:
Images of electrical activity in your brain recorded by an electroencephalogram (EEG)
The structure of your brain as shown in a computed tomography (CT) scan or magnetic resonance imaging (MRI)
A record or diary of your seizure activity

Sleep studies (Polysomnography) with expanded EEG aids can indicate the difference between seizures and parasomnias.

If being observed in a sleep lab, there is a decrease in rapid eye movement (REM) and an increase in the lighter stages of sleep, according to the article “Nocturnal Seizures,” by Carl W. Bazil, MD, PhD.

It doesn’t take the fear away, but it can help diagnose and treat the nightmare of nocturnal seizures.

 

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Resources:
http://www.healthline.com/health/epilepsy/nocturnal-seizures#Overview1
http://www.iowasleepcenter.com/sleep-disorders/nocturnal-seizures/
http://sleepfoundation.org/sleep-disorders-problems/disease-and-sleep/epilepsy
http://www.epilepsy.org.au/about-epilepsy/understanding-epilepsy/nocturnal-seizures-during-sleep#facts
http://www.medscape.com/viewarticle/713994_10
http://www.clinicaladvisor.com/consider-nocturnal-seizures-when-evaluating-a-patient-for-parasomnias/article/267859/
http://www.irishhealth.com/clin/epilepsy/seizure_type.html#Nocturnal
https://epilepsytalk.com/2012/10/16/sleep-and-seizures/
http://www.ehow.com/list_6016763_nocturnal-seizure-signs-symptoms.html
http://www.touchneurology.com/


59 Comments »

  1. Thank you so very much Phylis for your always enlightening information. My partner has epilepsy and I’ve learned so much from you and him. We started a support group for those with epilepsy and family and friends in the Coachella Valley. (Palm Springs, California area.) on Facebook called Coachella Valley Epilepsy Community.

    Liked by 1 person

    Comment by Paul Harris — April 11, 2015 @ 6:20 PM

    • Hats off to you Paul! I know how hard it is to start and keep a support group going.

      Are you getting any assistance from your EFA? Have you been able to get any guest speakers?

      I know that having a support group can sometimes be like herding cats. One month there are 7 people there, the next month there are 17 people there. You just can’t ever tell.

      But any way you look at it, the outcome is tremendously rewarding. Isn’t it?

      I admire you!

      Like

      Comment by Phylis Feiner Johnson — April 12, 2015 @ 9:31 AM

      • Thanks, Phylis. At this point it’s only an online support group with 84 members. Only 2 of us have met in person so far, but as membership grows we hope to have some social events, etc. Currently it’s online suggestions, questions, and offers of support.

        Like

        Comment by Paul Harris — April 12, 2015 @ 1:11 PM

  2. When I was at the neurology clinic at USC, I was sitting next to a man that was very worried over what his wife was going through. 90% of her seizures were nocturnal.

    Like

    Comment by shawn33 — April 11, 2015 @ 7:55 PM

  3. Paul, my website http://www.epilepsytalk.com has 1,229 members. And that’s after FIVE years! So, give yourself some time.

    And I think social events for your support group is a great idea. That’s how it will grow.

    One person invites another (tell everyone that they’re free to bring guests) and it begins to blossom.

    Like

    Comment by Phylis Feiner Johnson — April 12, 2015 @ 1:56 PM

  4. I’ve been grinding my teeth for years and years. So much so, thzt I sleep with a nylon mouthpiece. I just didn’t know this is s signof nocturnal seizures’

    Like

    Comment by Alan Bishop — April 15, 2015 @ 12:28 PM

  5. Unfortunately, it can be. But, that doesn’t mean you ABSOLUTELY have nocturnal seizures. Lots of people grind their teeth. Including yours truly.

    P.S. My dentist is recommending a mouth guard for me. But, I’d probably swallow it. (Because I probably have sleep apnea, too!)

    Like

    Comment by Phylis Feiner Johnson — April 15, 2015 @ 2:48 PM

  6. Hi Phylis,
    I’m new to this site, but not new to the joys of Epilepsy. After over 25 years of intractable seizures, some nocturnal, various Neurologists, numerous meds, I have found one gaping hole in our treatment services, and that is a lack of psychological services. As a social worker, it has never seized (lol) to amaze me. What are your thoughts about this, and what can be done?

    Like

    Comment by Susan — April 17, 2015 @ 5:05 PM

  7. I can only speak for myself, but I know that I’ve been in therapy for years and it’s done a world of good for me.

    Since depression is an organic condition that is part and parcel of epilepsy, I think that everyone should have some counseling to help them with the back lash of epilepsy.

    See this article and you’ll understand we’re on the same page. (Literally!) Epilepsy, Anxiety and Depression https://epilepsytalk.com/2009/11/09/epilepsy-anxiety-and-depression/

    Like

    Comment by Phylis Feiner Johnson — April 18, 2015 @ 9:20 AM

    • Thanks for that information about anxiety, depression and epilepsy. I agree with you that everyone with epilepsy should have either short or long-term therapy of some kind. That should be part of the treatment plan the Neurologist provides. As of now, however, that does not seem to be happening. Quality of life would be so much better. Why are Neurologists so hesitant, and how can that be changed?

      Like

      Comment by Susan — April 23, 2015 @ 7:17 PM

      • Susan, there is a rare bird called a psycho-neurologist, but they’re few and far between. 😦

        Like

        Comment by Phylis Feiner Johnson — April 23, 2015 @ 8:38 PM

      • Hi Susan,
        You asked a wonderful question regarding psychological services. I don’t know where you live, I live in NY on Long Island and what I have been following as a good trend is the increase in Neuropsychologists. I actually discovered this field after an horrendous experience in a clinic after an equally terrible experience with an abusive man in my life. I happened to be my Neurologist who suggested I try to find a Neuropsychologist but he didn’t know any. I went online and did some research. It was interesting because it was a lot like reading a resume. Some people wrote the bare minimum about themselves while others really seemed to care about what people read about themselves. I chose a wonderful woman that I have now been with for about 5 years and between her and my neurological team I have learned so much about all the changes and different ways I can potentially help myself avert a seizure it’s been the best investment in my health I’ve ever done. I no longer need to see her as often as I used to but her door is always open to me. If I hit a rough spot, we both know I may need some time to work though whatever the problem is. However he important part is I’ve remained seizure free for almost 4 years and I know I can count on her.

        She has taught me more than I can explain here but mostly, she understands me and this illness. At a very difficult time when my family and others thought I tried to take my life and I swore I didn’t she and my neurologist were the only 2 people who actually believed me. Partially because they knew if I really wanted to do it I had the power with the meds I take and they knew I would never do that. My Tox screen also showed up fine. The fact is I was physically abused and had a seizure at the same time and took a couple more pain pills so I could sleep but not enough to kill me. I couldn’t walk, talk, or even get into bed so I fell asleep on the floor and of course it looked bad. It was a mess! Thankfully it’s straightened out now and while in some of the groups I was put in, it was very quickly discovered I didn’t belong there. I’ve never regretted finding my neuropsychologist because they understand people like us and help us understand the behaviors associated with this illness and how difficult establishing and maintaining any kind of relationship can be. I hope this helps! Good luck!!

        Like

        Comment by Janet — July 4, 2015 @ 4:40 AM

  8. Phylis, I am also new to this site and found your article on Nocturnal Seizures while searching the internet. I resonated with so much that you were writing. My seizures are all nocturnal and tonic-clonic in type. No more daytime seizures. Weird, huh? Vanderbilt is studying me to see what the correlation is between sleep and seizures. I can report back in with what they find. George

    Like

    Comment by George — April 20, 2015 @ 9:36 AM

  9. Welcome George!

    I’m eager to see what Vanderbilt Hospital (highly regarded, as you know) has to say.

    PLEASE keep us posted!

    Like

    Comment by Phylis Feiner Johnson — April 20, 2015 @ 10:31 AM

  10. For people with nocturnal seizures, there is a new product that may be of help. It’s called the “Smart Watch,” was developed at Stanford University, and here is their web link:

    http://smart-monitor.com

    I asked my son’s neurologist about it, and he said its primary benefit is for nocturnal seizures. He said it might not be useful for a very active person (my son, who so far does not have nocturnal seizures) to wear during the day, because it would probably pick up too much movement, and there would be a lot of false alarms. But for nocturnal seizures, it could be a lifesaver.

    Like

    Comment by Martha — April 24, 2015 @ 4:33 PM

  11. Hi Martha,

    I actually wrote an article about the “Smart Watch”

    The SmartWatch — A New Type of Seizure Monitor!
    https://epilepsytalk.com/2013/11/10/the-smartwatch-a-new-type-of-seizure-monitor/

    But there’s a new and really exciting watch coming out in the fall.

    It’s called the Embrase. Take a look!

    https://www.indiegogo.com/projects/embrace-a-gorgeous-watch-designed-to-save-lives

    Pretty cool, eh?

    Like

    Comment by Phylis Feiner Johnson — April 24, 2015 @ 6:34 PM

    • I should have known you knew about this already!

      Like

      Comment by Martha — April 24, 2015 @ 6:47 PM

  12. LOL! 🙂

    There are very few things that I know about, compared to you.

    With admiration,
    Phylis

    Like

    Comment by Phylis Feiner Johnson — April 24, 2015 @ 7:15 PM

  13. George, there’s this device called “Night Shift” (by Advanced Brain Monitoring), which when worn on the back of the neck, begins to vibrate when users begin to sleep on their back and slowly increases in intensity until a position change occurs. And there are nine alternates in all at this website: http://www.sleepreviewmag.com/2014/09/alternative-therapies-obstructive-sleep-apnea/

    Like

    Comment by Phylis Feiner Johnson — May 5, 2015 @ 5:33 PM

  14. Those of you who study epilepsy are the real heroes in this world. Thanks.

    Like

    Comment by speedpawz — May 16, 2015 @ 10:26 AM

  15. http://columbiasleep.org/researchdocs/Nocturnal%20seizures,%20Sem%20Neurol%202004.pdf

    This is the best paper I have ever found about nocturnal epilepsy and all the other parasomnias and how to differentiate between them. I have had exclusively nocturnal epilepsy for 31 years and have done a lot of research on it.

    This discussion over at Coping With Epilepsy also touches on the sleep apnea overlap.

    http://www.coping-with-epilepsy.com/forums/f23/anyone-nocturnal-seizures-25194/

    The thing I didn’t know is that neurofeedback can be used to address sleep apnea.

    Also a lot of people think they don’t have sleep apnea because they don’t snore. But the noisy kind of sleep apnea is only one variety called Obstructive (OSA). There is also Central Sleep Apnea (CSA) which is not about the airway getting blocked but about the neurological signal not getting through from brain to lungs to breathe. The result is the same (OSA or CSA) lack of oxygen can cause nocturnal seizures.

    Wouldn’t it be nice if neurologists thought to explore other possible causes for seizures before passing out the pills?

    Like

    Comment by paleobird — June 7, 2015 @ 5:00 PM

  16. […] is a really good article over at Epilepsy Talk about nocturnal seizures. https://epilepsytalk.com/2015/04/11/t…#comment-54391 Very extensive list of resource links at the end. __________________ A healthy brain is part of […]

    Like

    Pingback by For Anyone with Nocturnal Seizures - Page 2 - Epilepsy Forum — June 7, 2015 @ 5:04 PM

  17. Robin, you’re too intelligent, you’re wearing me out! 🙂

    I love Carl Bazil (almost as much as Orin Devinsky) and I read the article with interest. And revelation.

    Nice that someone at C-W-E noticed the sleep apnea article. It certainly helps make the point!

    Like

    Comment by Phylis Feiner Johnson — June 7, 2015 @ 8:13 PM

  18. Aw. Thanks, Phylis.

    I think it would be great to have a whole thread about all the things that can cause a person to be misdiagnosed with epilepsy.

    We’ve touched on sodium, magnesium, sleep apnea, and there was a thread recently on CWE about inner ear problems and tinnitus.

    I’m sure there are probably many more.

    Like

    Comment by paleobird — June 7, 2015 @ 8:22 PM

  19. There’s some much info and misinformation…you could go on for ages.

    That’s what I do! 🙂

    Take a look at the sidebar at the right and you may find some interesting articles. It’s at least a start.

    Off to holiday to celebrate my birthday. Four days of vacation. Yeee Haaa!

    Like

    Comment by Phylis Feiner Johnson — June 8, 2015 @ 9:56 AM

  20. This was my exact diagnosis

    Like

    Comment by Tammy Burns — July 24, 2015 @ 10:53 PM

  21. So wise! 🙂

    Like

    Comment by Phylis Feiner Johnson — July 25, 2015 @ 8:47 AM

  22. Hello I have been struggling for the last 2 years to figure out what’s going on with me. Doctors say maybe NEAD, but a lot of my symptoms do suggest true Epilepsy.Not to mention therapy hasn’t resolved them and medicine has I also have noticed something weird, sometimes I will dream about having a seizure. Like in my dream I have a seizure, I tell the people I’m about to have one then start convulsing. The last one was bad, in my dream it was a gunshot that started the seizure. (Mainly the loud sound) then I fell down, everything was a haze as I came to in a hospital bed. I couldn’t feel my legs in the dream and I had a gnarly red bruise on my leg I guess from thrashing around. When I awoke I felt very heavy and just strange, my jaw was a bit sore too. I just don’t know and am at the end of my rope here.

    Like

    Comment by Laina douglass — March 22, 2016 @ 1:58 PM

  23. Laina, my guess is that you have a sleep disorder called parasomnia, which can best be tested with a special sleep study called a video-EEG-polysomnography.

    “The diagnosis and treatment of nocturnal events can present significant challenges to the clinician.

    Correct diagnosis is the first step towards appropriate treatment, but may not be straightforward.

    In particular, non-rapid eye movement (NREM) arousal parasomnias, such as sleepwalking, sleep terrors, and confusional arousal can present in a similar fashion to nocturnal frontal lobe epilepsy (NFLE); dramatic and often bizarre behaviors from sleep are features of both conditions, and may result in diagnostic confusion.

    A careful clinical history, however, often enables accurate diagnosis, and the frontal lobe epilepsy and parasomnia (FLEP) scale, a validated questionnaire for the diagnosis of nocturnal events, can add diagnostic confidence.

    Recording of events on video-EEG-polysomnography is required if diagnostic doubt remains although is not always achievable, particularly if events are occurring infrequently.

    Treatments for NFLE and parasomnias are different, but lifestyle modification and treatment of coexisting sleep disorders (such as obstructive sleep apnoea) may have a role in both.

    In NFLE, medical treatment with antiepileptic drugs, particularly carbamazepine and topiramate, forms the mainstay of treatment; a small proportion of individuals with treatment-resistant seizures may benefit from epilepsy surgery.

    For parasomnias, reassurance and the removal of priming and precipitating factors is often sufficient.

    A minority of individuals will, however, need medical treatment, usually with benzodiazepines or tricyclic antidepressants.

    Unfortunately, there are few data on which to base treatment decisions in this area, with the evidence comprising predominantly case reports and case series.

    Well-designed studies, including randomised control trials, are needed and may require a multicentre approach.”

    http://www.ncbi.nlm.nih.gov/pubmed/22865379

    Like

    Comment by Phylis Feiner Johnson — March 22, 2016 @ 3:29 PM

  24. I used to get seizures in my sleep, if I,m half wake and half a sleep than I can control them. but if I,m in a deep sleep they scare me half to death.

    Like

    Comment by michele metzger — March 22, 2016 @ 11:22 PM

  25. Sleep seizures are triggered by changes in the electrical activity in your brain during the stages of sleeping and awakening.

    Most nocturnal seizures occur in stage 1 and stage 2, which are the stages of lighter sleep.

    In contrast, panic attacks typically occur within three hours of sleep onset and are most commonly seen in the transition from stage 2 to stage 3 sleep.

    Like

    Comment by Phylis Feiner Johnson — March 23, 2016 @ 10:12 AM

  26. I fall asleep and its like i feel electricity in my brain can acually see the lightning going back and forth.My body feels like it is stiffing. And i feel like lije i cant breath.i start panicking n my head and trying to wakr myself up screaming help.until i do wake sreaming helo.could this be a seizure?

    Like

    Comment by Kay Baker — August 23, 2016 @ 4:45 AM

  27. I think it could be night terrors. I’m not sure.

    The best idea would be to have a sleep study done (Polysomnography) with expanded EEG aids.

    That should be able to distinguish between seizures and parasomnias.

    If being observed in a sleep lab, there is a decrease in rapid eye movement (REM) and an increase in the lighter stages of sleep, according to the article “Nocturnal Seizures,” by Carl W. Bazil, MD, PhD.

    Take a look at “Epilepsy Nightmares – WHY?”

    https://epilepsytalk.com/2012/02/15/epilepsy-nightmares-why/

    It might clarify things for you.

    Like

    Comment by Phylis Feiner Johnson — August 23, 2016 @ 10:12 AM

  28. Thank You for your info Phyllis. I had a bad seizure during the night last night too. Thinking it had to do with recent stress and the fireworks last night. Was banging on the wall for awhile and woke my brother up. Woke with a splitting headache and didn’t feel myself all day. No energy. Hope for a better night!

    Like

    Comment by Nicole Koloski — July 5, 2017 @ 7:25 PM

    • Oh, that’s the worst. Do you often have nocturnal seizures? 😦

      Like

      Comment by Phylis Feiner Johnson — July 5, 2017 @ 8:50 PM

      • Thanks Phyllis for this forum. God bless you. I have had to read through all the comments because I know norctunal seizures by all its names and character. Iam in my early 40s and the attacks started 17yrs ago. I had just completed campus and was looking forward to a job and a wedding. All that happened but the seizures accompanied me in my new journey. Confusion, and bitterness were also constant friends and here in Africa, stigma is high. Thank God for my hubby who’ve remained by my side .
        Iam starting psychological therapy, and iam in a psychology class intending to be a counselor one day.
        The seizures started after my dads death. I didn’t cry like everyone else but I was very angry and two weeks after, I had a seizure in my sleep, woke up having lost memory.
        Next was at the night of my wedding.
        Luckly, they are a far apart but they are still a very big issue in my life.

        Like

        Comment by ROSE — July 12, 2017 @ 4:36 AM

      • Suppressed sorrow and anger are two of the most difficult demons to deal with.

        They can increase cortisol, known as “the stress hormone” because cortisol is secreted in higher levels during the body’s “fight or flight” response to stress.

        And, it’s responsible for several stress-related changes in the body which also may have been responsible for the start of your nocturnal seizures.

        Negative emotions related to stress, such as anger, worry or fright, may also cause seizures.

        This happens because the limbic system, the portion of the brain that regulates emotion, is one of the most common places for seizures to begin.

        And there you have it. Nocturnal seizures and all.

        I’m so sorry. I hope that you can soon lighten your burden, Rose.

        I think that therapy is a wonderful thing. It’s done a world of good for me.

        Like

        Comment by Phylis Feiner Johnson — July 12, 2017 @ 8:36 AM

  29. Hi
    Would I need to take count of night seizures over a full one year period and then count day time number.
    My daughters had majority at night – sometimes I think it’s a bit better than her having them daytime?? She is at college at is mortified if one happens, plus loss of bladder control then she ‘looks drunk’ being helped to a car. Downside is she can’t always get up in the morning as she is still recovering. It’s just a demon for us at the moment trying to get a good balance. Meds were increased last week – so fingers crossed
    Thanks x

    Like

    Comment by Alison Stewart — August 30, 2017 @ 1:26 PM

    • Hope the meds work.

      In terms of night time monitoring, the best appliance would be SAMi — A night vision monitor used to monitor and record abnormal sleep movements. Runs on an iOS device such as an iPhone or iPod Touch. http://www.samialert.com/

      Like

      Comment by Phylis Feiner Johnson — August 30, 2017 @ 2:50 PM

      • I have been using a baby monitor with a camera that also works at night – alerting me when my daughter is having a seizure. Doesn’t record though
        The Sami morning monitor does cost quite a bit but thanks for info

        Like

        Comment by Alison stewart — August 30, 2017 @ 5:18 PM

      • Anything I can do — to help put your mind at ease.

        Like

        Comment by Phylis Feiner Johnson — August 30, 2017 @ 5:21 PM

  30. Now l know why they are happening after he has had a sleep and about to wake and early in the morning.

    Like

    Comment by Karen Wilde — October 4, 2017 @ 3:25 AM

  31. Explains a lot. And very help and understanding

    Like

    Comment by Clare Armstrong — October 14, 2017 @ 1:50 PM

  32. I have mild panic attacks the day before. Pill rolling, wringing hands, sometimes I just wrap my right arm across my body (grabbing my shoulder; almost a hug).
    Other times I have mild migraines, semi loud noises (some time normal level noises), bright lights (normal lights seem bright) seem to just make me want to cry. Not necessarily out of pain but the pressure in my head.
    I might have partial seizure (simple or complex), but I usually don’t notice, someone else points it out. My wife can usually tell if I’m just not acting myself. That’s usually the day before or the day after.
    I’ve been on medicine that helped. But, it’s getting back to being more frequent. I wake up with a headache, chewed up tongue, balance issues, can’t focus, (sometimes I don’t even know where I am or what days it is), I’ve dislocated my shoulder/ pulled the other one, sore legs, bruised ribs, etc. I even almost suffocated my wife because I was cuddling and had a seizure.
    Do you know how infuriating it is to be afraid to cuddle with your wife?
    Anyhoo, I’ll stop ranting. I’m just glad I found a current site about nocturnal seizures.
    Oh yeah, I’ve typed with Phyllis about this but does anyone have experience with disability and nocturnal epilepsy? The before and after effects make my job difficult. I basically hide in my office and do what I can. But, my job “requires” me to do a lot more. I just haven’t been caught. I basically “put on a show” that I’m fine. Meanwhile I walk like I’m half drunk. I act like I’m half retarded (no offense meant). I seem like I’ve gotten no sleep after “sleeping” for 8-9 hours. I feel like I’ve been beat by a gang of thugs. But, my family has to eat. I need to pay for my meds/ dr/ neuro/ etc.
    My previous neuro (moved out of state) was surprised I wasn’t already on disability 6 years ago when I first started seeing her. She really didn’t like the fact that I was driving to and from work on top of that.
    Anyhoo, any ideas/ help/ experience/ or even an “i hear ya” (i had a seizure night before last night, so I’m a little emotional. all of the other stuff has mostly subsided)

    Like

    Comment by Kevin — October 21, 2017 @ 8:28 PM

    • Are you on disability now? If not, I would suggest you see an attorney to see if your claim is valid. If your case isn’t, they won’t make any money. So it’s in their vested best interest to make an honest assessment of your case.

      Also, you need to address your anxiety. Perhaps these hints will help:

      10 Ways to Cope with Your Stress and Anxiety

      https://epilepsytalk.com/2012/05/18/10-ways-to-cope-with-your-stress-and-anxiety/

      Like

      Comment by Phylis Feiner Johnson — October 22, 2017 @ 11:14 AM

      • My stress/ anxiety on non seizure days is fantastic. I’m one of those people that is so relaxed that the people near me get relaxed just being around me. Animals will come up to me with no problems. Children talk/ wave/ come up to me all the time. But, those post seizure days are polar opposites.
        I know plenty of relaxation techniques from years ago when I was a stressball. But, I usually don’t realize when I’m having a bad day unless someone points it out. That’s another reason my wife has been pushing me into looking into disability. She’s noticed the increase in frequency of these issues.
        And, the bad thing is, she doesn’t even know how bad it really is sometimes.

        Like

        Comment by Kevin — October 26, 2017 @ 9:50 PM

      • This may not be such a popular idea, but have you considered counseling to help you get over the rough spots?

        Like

        Comment by Phylis Feiner Johnson — October 27, 2017 @ 8:50 AM

  33. There aren’t really any major issues between my wufe and I. She understands that when I’m having a bad day that it’s not ME, it’s my illness. No more than getting upset at someone for having a broken leg. We don’t really butt heads. On my bad days i can be irrational. I’m not doing it on purpose, she knows that.
    And, on my good days we make up for it all.
    She just points out when she tinks I’m having an off day. Usually she’ll ask if I’ve taken my medicine. Or she’ll ask point blank if I’m feeling alright.
    I don’t know if counselling would do an good on my bad days. I do have the occasional day when I just get depressed. Not overly depressed. Just overly emotional. And, I’m usually the smiley, happy go lucky person. The one every one else goes to when they have problems.
    But, on those days I’ve had a seizure, it’s like I’m on a tilt a whirl physically and emotionally.

    Like

    Comment by Kevin — October 27, 2017 @ 9:05 PM

    • My husband’s first response when I’m having a bad day is “Have you taken your meds?”

      So I can appreciate what you say about feeling you’re “on a tilt a whirl physically and emotionally.”

      It just so difficult to sustain the “normal” in the face of devastating depression and/or seizures.

      Like

      Comment by Phylis Feiner Johnson — October 27, 2017 @ 9:11 PM

  34. The good thing is I haven’t gotten really depressed. I’ve had a serious bout with depression like 15 yrs ago. A lot of things set that off. I refuse to go back there. It was scary. That’s one of the reasons I’m the glass is half full kinda person. I’m usually the smiley one. Except my bad days. It’s not that I’m depressed, it’s more that i’m concentrating more on simple tasks. Or the lights or sounds are overwhelming. And those can cause me to be snappy at times. Like I’ve said, people who know me and what’s been going on over the years, know it’s not ME. They usually just blow it off and we laugh about it later when I’m feeling better (I apologize, but they’ve already forgiven me). I’ve got really good friends. My kids are getting pretty good about it too.
    But, my work…. Like I said before, on bad days I hide out and do the bare minimum (sometimes less).

    Like

    Comment by Kevin — October 27, 2017 @ 9:54 PM

  35. Until reading this and thinking back a lot of years, I now remember a few occasions Momma telling me, “You’re not going to school, today.” I asked her, “Why?” She said I had a “Blackout.” I didn’t know. As a matter of fact, *epilepsy was NEVER explained to me. I quietly thought my mother was making up fibs, trying to make me think I was “crazy.” If one doesn’t know or remember anything, at least explain to them what it is that is happening! Why I was forced to sleep in a baby crib until 8 years old! The bars going up on the sides of the bed each night. I was in Prison! I would sit at the doctor’s office while they talked. Yep. *They talked. I was scared to say a word! The doctor told her that maybe when I marry, I would “grow out of it.” SO! “Marriage” was the answer my first neurologist gave my mother. She died when I was 14. Christmas Day of 2017 will be 36 years I have been married to a *Narcissist! When meeting and dating him, the seizures were controlled for 3 years and I had a driver’s license plus a car. Within 4 years after marrying, the seizures came back. I lost everything. Yeah. I saw what “marrying” would do. Don’t know if I still have any Partial Complex “blackouts” in my sleep. I’m upstairs in my own bedroom. He has downstairs. Such is “life.”

    Like

    Comment by Effie Jane — November 5, 2017 @ 11:36 PM

    • Oh Effie, my heart goes out to you. All that deceit and defeat.

      You must be a warrior to have made it this far.

      P.S. My parents never mentioned the “E” word and said I was just “clumsy”, as I walked into walls and fell down the stairs.

      I broke my nose twice, but there was nothing the matter with me.

      Except the pills I had to take every morning that turned me into a zombie.

      Like

      Comment by Phylis Feiner Johnson — November 6, 2017 @ 8:12 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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