Epilepsy

Now I Lay Me Down To Sleep — Night Time Seizures

“Now I lay me down to sleep.
I pray the Lord my soul to keep.
If I should die before I wake,
I pray to God my soul to take.
If I should live for other days,
I pray the Lord to guide my ways.

Father, unto thee I pray,
Thou hast guarded me all day;
Safe I am while in thy sight,
Safely let me sleep tonight.
Bless my friends, the whole world bless;
Help me to learn helpfulness;
Keep me every in thy sight;
So to all I say good night.”

An extended version of a prayer I said every night as a small child. Now, as a grown adult diagnosed with Epilepsy, I think back on this prayer almost every single night. It is a frequent occurrence that a seizure will attempt to break through in the night. I lie awake in bed, praying to God to see me through. Afraid to turn the lights off sometimes, I think about those who’ve passed away from Epilepsy. A condition called SUDEP (Sudden Unexpected Death In Epilepsy) A part of me is fearful of this happening to me. Another part of me remains steadfast in faith that God will protect me through the night. As I lie awake with the lights on, I stare at the ceiling listening to my breath and my heartbeat, telling myself everything will be alright. Whether or not a seizure attempts to break through, it will all be alright. The times that seizures attempt to break through, I will have turned off the lights to go to sleep. Between 10 and 30 minutes of turning off the lights and settling into sleep, my body becomes rigid yet I remain conscious. An uneasy and nauseated feeling overwhelms my stomach as though I might become sick but I’m unable to move. My closed eyelids flutter like butterfly wings and my arms and legs tremble involuntarily. Yet, I remain conscious for the whole event. Behind my fluttering eyelids, my vision scrambles frantically. Pastel pink, yellow, blue, green and white dots everywhere. Like the 4th Of July fireworks in my eyes. Electricity type bolts dashing in and out between these pastel dots. Almost as if my vision is trying to short circuit but can’t quite shut down. Yet still, I’m conscious for the whole frightening event. Sometimes, I’m rendered helpless to call out to my husband who is just inches from me in bed. Sometimes, I’m able to speak only his name and that’s all he needs to hear to know I’m suffering a seizure. I can’t help but to think during these times, “God help me! Please help me! I’m scared and I don’t want to die! I’ve so many things yet I want to do before you call me home.” Unable to cry on the outside, on the inside I sob as I wait for this nightmare in the dark to end. Typically, episodes like these only tend to last a few minutes. When they’re over, my body lays limp and exhausted from the fight. Often, I turn and silently cry in my pillow if Chris hasn’t been woken by the episode. I cry tears of fear, frustration and even relief to know I made it through. Within 30 seconds following the episode my brain reacts by delivering a migraine from hell. At times, it prevents me from falling back asleep. Other times, it comes and goes within just a few minutes. I lie awake in the middle of the night praying to God to make this my last seizure I must endure this night. I pray for a cure for me and everyone going through this exact same thing. I pray that I never become another person who passes away in the middle of the night because of a seizure. I pray that this sort of thing never happens to me or my loved ones. Also, I pray for the families of those who have had to endure such heartache and loss. As someone who fears for their life almost every night, I could just imagine the heartache they must feel.

I will say of the Lord, “He is my refuge and my fortress,
    my God, in whom I trust.”Psalm 91:2

I hold dear my trust in God that not only will he bring me through the night, he will bring me through it all. All day every day. Even if a seizure comes, he’ll bring me through to another day. Yes of course, I’m only human and I do fear the seizures anyway. However, I know a cure will be found. I have faith, I have hope, I believe with all my heart all 65 million and more of us will be cured one day.

I am a happily-ever-after wife, an Epilepsy Diagnosee, Advocate for Epilepsy Awareness (The Epilepsy Network), life lover & Christ inspired! Life is a journey and I'm loving every moment of it. Even the bumps in the road!

14 Comments

  • Jamie James

    I lost my wife to sudep… She was 36, she left me with a newborn and a two year old…

    We prayed together, everyday! Went to church and were active members… She had never been to church before she met me, and it was nice to see her turn her spirit to Jesus Christ and be Baptized…

    Thank you ma’am for your kind story as I was lost tonight looking through grieving/healing posts and I found this blog… And as a spouse, I knew how to do with the convulsions and everything like; but she never did explain what is was like on the other side, and you just painted a picture for me that’s easier to see… You’re and Angel!

    May Our Heavenly Father Bless You!!! And Your Husband And Family Too!

    • Tiffany Kairos

      Jamie –

      I am so sorry that you lost your wife at the hands of SUDEP. My heart and my thoughts go out to you.

      To hear that the both of you prayed together every day, went to church and were active members and that she had turned her spirit to Jesus Christ warms my spirit. Know with certainty that she is safe in the arms of Jesus.

      I will continually pray for you and your wonderful children!

      God bless you always Jamie!

  • Godleadstheway

    Hi my name is tiffany too. I’m going to be twenty one in a few months and was diagnosed with epilepsy at fourteen. When it began I would have 20 probably the minimum of small seizures a day, once my doctor put me on dilatin a few years ago I started only having nocturnal seizures with rarely a day time one. Each one awakes me from my sleep, and also causes incontinence which is so embarrassing and hard to deal with. I’m doing better now but like you said I lie there and just continue to tell myself “it’s ok it’s ok it will be over in a minute just hold on” your article is beautifully written though, I pray for me, you, the whole world and especially everyone going through epilepsy period especially with the nocturnal they are very sudden and scary.

  • Cathy W

    Wonderfully written! Sounds very close to my experiences with nocturnal seizures. Just like you when my seizure is over I usually get a migraine. I also pray, pray, pray. I pray for the exact same things. One day, there will be a cure. Until then, we just have to put up a strong battle!

  • Josie Bonehill

    My first husband suffered nocturnal epilepsy , and after 31 days of marriage whilst I was working nights he fell asleep never to wake again..we had ever heard of Sudep … And I think if we had we would have the same frightening feeling as you do when you lay down to sleep each night take care x

  • Tara Harrower

    Very beautifully written! I suffer from night time seizures as well. Mine happen before I lie down but all at night time!! Its scary because I lie awake at night time wondering the same things.. because i have no aura or warning with mine..Thankfully this month I reached my 1year seizure free mark!! It has been a blessing!! I pray you get the right help you need and I pray for everyone who has been affected by this disease!!

  • Diane

    Reading your story brought back some disturbing memories for me. I had awful night seizures until we figured out that the Keppra & Lamictal I was on were actually causing non-epileptic seizures. They would start an hour or two after taking my meds. I was so drugged out that I didn’t put two & two together for quite some time. With 20/20 hindsight I say we should all keep details journals to protect ourselves.

  • Frank Piercy

    Very well written, I find it hard to say I enjoyed reading it, knowing what you are dealing with, but I enjoyed reading it. As a parent who has lost to SUDEP and having a wife and another child recently diagnosed, I am also afraid….

    My prayers are with you Tiffany, as they are with everyone dealing with what we are.

  • Amanda

    Hi! I suffer from night seizures as well as day seizures. I have no aura. You did a wonderful job writing this. Like you I am fearful at night especially, but by the grace of god I was blessed and met my soul mate. He is wonderful and knows when I am “off” Thank you for sharing this with everyone and god bless!

  • Philip

    Hi Tiffany, I was wondering, have you ever investigated using Coconut Oil (.com) mixed with Tumeric…some black pepper and Cayenne Pepper… All these ingredients have many positive benefits on our bodies and brain functioning, and when combined are a powerful universal tonic that fights against multiple types of cancers, boosts the immune system, has positive effects on both Alzheimer’s and Autism, has anti- depressive qualities, anti-stress and numerous other benefits… Simply blend one table-spoon of Coconut Oil with two teaspoons of Tumeric and add a good few pinches of Black Pepper (the Piperine in the pepper boosts the Tumeric to function much further into the digestive tract, thus making it about about 20 times more effective)….and a good sprinkle of Cayenne Pepper….this can be taken daily with soup, or any food of your choice…and is worthy of being tried for at least two months to see it’s benefits….It can do no harm, only good… I just felt inspired to to pass you this info having read some of your story… Sweet Dreams… <3

  • Nicole

    This was so well written. I have complex-partial seizures, and have always had them during the day, but at my most recent VEEG, it showed seizure activity while I was asleep as well. I have always had an aura before my daytime seizures, but was unaware of those I had while I was asleep.

    My thoughts and prayers are with you!

  • mommy of 3

    Beautifully written. My son also has night time seizures. He usually wakes up with an aura first and is able to get my attention. But not always. He is also conscious during the seizures and very frightened. Praying for you.

    • jamie

      Mommy of three, my daughters are only at night. Lots of test later and years and dr. thinks it is nocturnal paroxysmal dystonia, I have yet to hear from one person who has it or knows someone with it.

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