Epilepsy Nightmares – WHY?

Epilepsy Nightmares – WHY? | May 30, 2019

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.

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 to 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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Resources:

http://www.sciencedirect.com/science/article/pii/S0361923004000887

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

http://epilepsyontario.org/about-epilepsy/types-of-seizures/nocturnal-seizures/

https://www.healthline.com/health/epilepsy/nocturnal-seizures

https://www.cedars-sinai.edu/Patients/Health-Conditions/Nocturnal-Seizures.aspx

https://www.eisleep.com/sleep-disorders/nocturnal-seizures/

Posted in Epilepsy, Research
Tags: anti-seizure medication, Epilepsy, fear, nightmares, REM, seizure monitor, sleep deprivation

11 Comments »

Hi Phylis, interesting article. You say,”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 would disagree with that statement, here is why.

This is exactly what happened to me, after starting on Gabapentine, i notice, my seizures were happening in the mornings after i woke up. This was due to the meds having a 1/2 life of around 6 hrs, so by the mornings i would not have much medicine in me.
Whereby the seizures would happen then since i, normally forgot to take my meds right as i woke up, but after using the bath room and getting ready for work. Well to me this was a miracle. Because this meant i could schedule my seizures for early in the mornings when i’d be in the safety of my home. Where i have my emergency meds ready to go in key locations through out the house. Before Gabapentine, i was having them spread out all over the day. I even had a Grand Mall on the highway during rush hr traffic, at 5:15ish PM, luckily no one was hurt.

So while i was working I’d get up at 6am and not take my meds till 7pm, this gave my body a WINDOW for the seizures to appear, rather than forcing them to come at whatever time they please. This little control for me was priceless. Why, because if we think of seizures as electrical buildup that will eventually overflow the damn, or think of it as a capacitor that will go of when enough electrical charge is present, then if u r constantly medicated, the seizure will happen when they have the most build up. For me it was at the worst times during the day. I’ve been on Gabapentine for like 5yrs now and something like 96% of my seizures were in the mornings during that 5yrs of time.

LikeLiked by 1 person

Comment by Zolt — May 30, 2019 @ 9:46 AM

Reply
- It’s fabulous that you can “time” your seizures by the time you take your meds.
  
  And you’re right. In your circumstances a half-life dose works for you.
  
  Keeping emergency meds around the house is brilliant and pro-active, even though it appears you don’t often need them.
  
  LikeLike
  
  Comment by Phylis Feiner Johnson — May 30, 2019 @ 10:41 AM
  
  Reply
I can relate so much to most of this article. More AED’s today causes INSOMNIA when you take too many mgs of these drugs. LAMICTAL is 1 that is like taking uppers that will keep you awake. take over 100 mgs of it to know what I mean, but if you only take 100mg of the XR pill of Lamictal, then you have no problem with sleeping. When I was taking more than 200mgs of Lamictal, I was lucky to have gotten 4 hours sleep at night, & I was on that dose for 10 years until the doctor/s said I can come down some. THAT was NIH, as for 12 years being on lamictal I was finally able to come off the drug, by lowering it 25 mgs every 2 weeks, and the last 2 weeks taking 25mgs of lamictal still felt like I was taking 200+ mgs a day, because my brain had been in a LAMICTAL ADDICTION if you want to call it that, where it kept me awake most nights. That 1st day when I did not take ANY LAMICTAL, that night I slept straight through like a baby & got 9 HOURS OF SLEEP & NEVER WOKE UP. Since then I have NEVER taken over 100mgs of Lamictal brand or generic name. Lamictal XR is only a BRAND NAME drug. There also is a BIG difference between the 50 mgs & 200mgs pills of VIMPAT, which I will never take either, as the100mg tablet of VIMPAT is what I am trying again after about 7 years being off of it, when I was then almost 2 years seizure free before going off both lamictal & vimpat. Any types of ALUMINUM in any drug will make you crazy to the point you can NOT sleep or you may sleep TOO MUCH depending what type of drug it is in. VIMPAT 100mg tablet has NO ALUMINUM in it.

LikeLiked by 1 person

Comment by C D — May 30, 2019 @ 3:47 PM

Reply
- 250 MG of Lamictal made me crazy/hyper.
  
  What I did was change my bedtime dose to 6:00 PM and then all was fine.
  
  (With a little help from Melatonin!)
  
  LikeLike
  
  Comment by Phylis Feiner Johnson — May 30, 2019 @ 3:52 PM
  
  Reply
With every article you post, my eyes are opened wider. I know this takes a great deal of time. I am so thankful for all that you share.

LikeLiked by 1 person

Comment by Nancy Ester — May 30, 2019 @ 4:47 PM

Reply
- Nancy, thank you for the compliment. As you can imagine TONS of research goes into every article.
  
  I’m happy if it helps you!
  
  LikeLike
  
  Comment by Phylis Feiner Johnson — May 30, 2019 @ 5:03 PM
  
  Reply
Excellent Question,,, WHY?
I’ve always wondered WHAT’s the cause of these nightmares, hallucinations,,,?
Where are these nightmares, hallucinations,,,, coming from?

Are these nightmares exclusive SIDE EFFECTS of the medications or these nightmares are symptoms of the nuerological disorder Epileptic seizures, or the combination of both the medications & the neurological disorder, which leads to more questions, are you better of with the medications or without medications?

The daunting mystery between the side affects of the medications & the nuerological disorder/Epilepsy, opens the gates to more questions & research, desperately trying to figure out which way is the best way to go & which medications must be avoided & if any life style changes needed to be made to stop or reduce these nightmares, leading to potential answer to WHY the nightmares are recurring.

So far, the search for DEFINITIVE answers has been complicated journey, trying various mechanism to trace the root cause of the nightmares & hopefully eliminate or reduce the recurrent nightmares.
Best wishes to all.
Gerrie

LikeLiked by 1 person

Comment by BahreNegash Eritrea — May 31, 2019 @ 1:24 PM

Reply
- Personally, I think It’s a combination of both. I wish I could give you a more concrete answer but – with your keen knowledge – I probably know less than you. 🤔
  
  LikeLike
  
  Comment by Phylis Feiner Johnson — May 31, 2019 @ 1:32 PM
  
  Reply
  - Oh Phylis,,, Thank you for your compliment but whatever I know about Epilepsy is, I’ve learned it from your inspiring commitment, devoted mission & informative public services, sacrificing your precious time, energy & resources for this educational website for many of us to learn & share our experiences, living with Epilepsy.
    Yes indeed, it has been rewarding experience to ask questions & find answers & learn from this forum, I’ve NEVER found anywhere else.
    Gerrie
    
    LikeLiked by 1 person
    
    Comment by BahreNegash Eritrea — June 1, 2019 @ 7:10 AM
I lost a friend to nocturnal seizures, that was over 20 years ago. He was a good man, a giant at 6′ 10″ but a teddy bear & extremely talented with metal work. He was always afraid he’d go to bed for the last time. I don’t have nocturnal epilepsy, mine are daytime & almost always when I’m on my feet so unfortunately my head tends to be the 1st thing that makes contact with the ground. I’ve been told I always let out a blood curdling scream or a horrible sounding guttural right before I drop. The thing is, I nearly always have terrifying visions while I’m seizing & continues on after the seizure for 3 to 5 min. while Im unconscious & usually not breathing. I always “come to” with what people describe as sheer terror in my eyes & I come up swinging! The last one I had, I actually managed to pull the tazer out of my holster and put it hard to the chest of a bystander, luckily I was not completely with it & had not turned the unit on 1st, so the gentleman was unharmed & later admitted quite amused “a little gal” (5′ 4″, 120lbs) had the “spitfire & spirit” to try & fight off some strange man 3X+ bigger. I must of appologized 100Xs but don’t remember the tazer. I’ve broken an EMTs nose, even been unfortunate enough to be filmed by local news station that happened to be at the court house the same day & time I dropped in the parking lot! How embarrassing. I still remember the look on the face of a sherriff about 5 years back, standing at the foot of my bed (my step son had called 911 as it was the 1st seizure he witnessed & it scared him), I felt trapped in my body while someone else was causing me to repeatedly scream bloody murder, screaming “I don’t want to die, don’t let them take me, God help me …save me”! All of it was said so pleading & dramatic, but my conscious self was seemingly sitting in the background unable to intervene. I understood the reasons for pleading (I had gone 5 min without breathing, my partner said I turned blue, then white, then a god aweful grey) In that time I was in my mind running from those scary beings, that always show up…like shadows with great big voids where their eyes should be, there are always 3-6 & they always catch me but I dont usually remember the capture as I am running one second & laying on something cold the next second, with all these shadows standing over me. They speak but without mouths or sound, its more like I hear them in my head. They are telling me I need to disconnect let go that my time is over and similar such things, but I’m terrified I dont want to let go, Im not ready I try to fight but am parylized. They seem genuinely concerned yet authoritative and poweful and scary, I just keep pleading & trying to force my body to respond to my mind which wants to fight with every fiber of my being).
I have night terrors also, kicking & screaming where I need to be woken up. They usually involve huge spiders, or me being captured by the Gestapo while trying to smuggle out babies & children to safety during the war in Germany… they catch my & brutally torture me …thats when I get woken up. Have had the night terrors since childhood but the epilepsy started in my mid 20s.

LikeLike

Comment by forevermymissingchild — June 6, 2019 @ 7:27 AM

Reply
- Do you have a VNS?
  
  Vagus Nerve Stimulation…Is it for YOU?
  
  https://epilepsytalk.com/2011/03/13/vagus-nerve-stimulation%E2%80%A6is-it-for-you/
  
  It’s obvious you need something to keep you from going into the postictal stage.
  
  Even emergency meds would be better than what you’re going through now.
  
  In Case of Emergency — New Solutions
  
  https://epilepsytalk.com/2017/05/26/in-case-of-emergency-new-solutions/
  
  You MUST find a way to prevent yourself from going into the postictal stage and I think a VNS would help.
  
  If not that, then an RNS.
  
  Responsive Neurostimulation (RNS) Shown to Reduce “Untreatable” Seizures
  
  https://epilepsytalk.com/2017/01/12/responsive-neurostimulation-rns-shown-to-reduce-untreatable-seizures/
  
  Please look into either, or both.
  
  LikeLike
  
  Comment by Phylis Feiner Johnson — June 6, 2019 @ 10:23 AM
  
  Reply

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Hi Phylis, interesting article. You say,”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 would disagree with that statement, here is why.

This is exactly what happened to me, after starting on Gabapentine, i notice, my seizures were happening in the mornings after i woke up. This was due to the meds having a 1/2 life of around 6 hrs, so by the mornings i would not have much medicine in me.
Whereby the seizures would happen then since i, normally forgot to take my meds right as i woke up, but after using the bath room and getting ready for work. Well to me this was a miracle. Because this meant i could schedule my seizures for early in the mornings when i’d be in the safety of my home. Where i have my emergency meds ready to go in key locations through out the house. Before Gabapentine, i was having them spread out all over the day. I even had a Grand Mall on the highway during rush hr traffic, at 5:15ish PM, luckily no one was hurt.

So while i was working I’d get up at 6am and not take my meds till 7pm, this gave my body a WINDOW for the seizures to appear, rather than forcing them to come at whatever time they please. This little control for me was priceless. Why, because if we think of seizures as electrical buildup that will eventually overflow the damn, or think of it as a capacitor that will go of when enough electrical charge is present, then if u r constantly medicated, the seizure will happen when they have the most build up. For me it was at the worst times during the day. I’ve been on Gabapentine for like 5yrs now and something like 96% of my seizures were in the mornings during that 5yrs of time.

LikeLiked by 1 person

Comment by Zolt — May 30, 2019 @ 9:46 AM

It’s fabulous that you can “time” your seizures by the time you take your meds.

And you’re right. In your circumstances a half-life dose works for you.

Keeping emergency meds around the house is brilliant and pro-active, even though it appears you don’t often need them.

LikeLike

Comment by Phylis Feiner Johnson — May 30, 2019 @ 10:41 AM

I can relate so much to most of this article. More AED’s today causes INSOMNIA when you take too many mgs of these drugs. LAMICTAL is 1 that is like taking uppers that will keep you awake. take over 100 mgs of it to know what I mean, but if you only take 100mg of the XR pill of Lamictal, then you have no problem with sleeping. When I was taking more than 200mgs of Lamictal, I was lucky to have gotten 4 hours sleep at night, & I was on that dose for 10 years until the doctor/s said I can come down some. THAT was NIH, as for 12 years being on lamictal I was finally able to come off the drug, by lowering it 25 mgs every 2 weeks, and the last 2 weeks taking 25mgs of lamictal still felt like I was taking 200+ mgs a day, because my brain had been in a LAMICTAL ADDICTION if you want to call it that, where it kept me awake most nights. That 1st day when I did not take ANY LAMICTAL, that night I slept straight through like a baby & got 9 HOURS OF SLEEP & NEVER WOKE UP. Since then I have NEVER taken over 100mgs of Lamictal brand or generic name. Lamictal XR is only a BRAND NAME drug. There also is a BIG difference between the 50 mgs & 200mgs pills of VIMPAT, which I will never take either, as the100mg tablet of VIMPAT is what I am trying again after about 7 years being off of it, when I was then almost 2 years seizure free before going off both lamictal & vimpat. Any types of ALUMINUM in any drug will make you crazy to the point you can NOT sleep or you may sleep TOO MUCH depending what type of drug it is in. VIMPAT 100mg tablet has NO ALUMINUM in it.

Comment by C D — May 30, 2019 @ 3:47 PM

250 MG of Lamictal made me crazy/hyper.

What I did was change my bedtime dose to 6:00 PM and then all was fine.

(With a little help from Melatonin!)

LikeLike

Comment by Phylis Feiner Johnson — May 30, 2019 @ 3:52 PM

With every article you post, my eyes are opened wider. I know this takes a great deal of time. I am so thankful for all that you share.

Comment by Nancy Ester — May 30, 2019 @ 4:47 PM

Nancy, thank you for the compliment. As you can imagine TONS of research goes into every article.

I’m happy if it helps you!

LikeLike

Comment by Phylis Feiner Johnson — May 30, 2019 @ 5:03 PM

Excellent Question,,, WHY?
I’ve always wondered WHAT’s the cause of these nightmares, hallucinations,,,?
Where are these nightmares, hallucinations,,,, coming from?

Are these nightmares exclusive SIDE EFFECTS of the medications or these nightmares are symptoms of the nuerological disorder Epileptic seizures, or the combination of both the medications & the neurological disorder, which leads to more questions, are you better of with the medications or without medications?

The daunting mystery between the side affects of the medications & the nuerological disorder/Epilepsy, opens the gates to more questions & research, desperately trying to figure out which way is the best way to go & which medications must be avoided & if any life style changes needed to be made to stop or reduce these nightmares, leading to potential answer to WHY the nightmares are recurring.

So far, the search for DEFINITIVE answers has been complicated journey, trying various mechanism to trace the root cause of the nightmares & hopefully eliminate or reduce the recurrent nightmares.
Best wishes to all.
Gerrie

Comment by BahreNegash Eritrea — May 31, 2019 @ 1:24 PM

Personally, I think It’s a combination of both. I wish I could give you a more concrete answer but – with your keen knowledge – I probably know less than you. 🤔

LikeLike

Comment by Phylis Feiner Johnson — May 31, 2019 @ 1:32 PM

- Oh Phylis,,, Thank you for your compliment but whatever I know about Epilepsy is, I’ve learned it from your inspiring commitment, devoted mission & informative public services, sacrificing your precious time, energy & resources for this educational website for many of us to learn & share our experiences, living with Epilepsy.
  Yes indeed, it has been rewarding experience to ask questions & find answers & learn from this forum, I’ve NEVER found anywhere else.
  Gerrie
  
  LikeLiked by 1 person
  
  Comment by BahreNegash Eritrea — June 1, 2019 @ 7:10 AM

I lost a friend to nocturnal seizures, that was over 20 years ago. He was a good man, a giant at 6′ 10″ but a teddy bear & extremely talented with metal work. He was always afraid he’d go to bed for the last time. I don’t have nocturnal epilepsy, mine are daytime & almost always when I’m on my feet so unfortunately my head tends to be the 1st thing that makes contact with the ground. I’ve been told I always let out a blood curdling scream or a horrible sounding guttural right before I drop. The thing is, I nearly always have terrifying visions while I’m seizing & continues on after the seizure for 3 to 5 min. while Im unconscious & usually not breathing. I always “come to” with what people describe as sheer terror in my eyes & I come up swinging! The last one I had, I actually managed to pull the tazer out of my holster and put it hard to the chest of a bystander, luckily I was not completely with it & had not turned the unit on 1st, so the gentleman was unharmed & later admitted quite amused “a little gal” (5′ 4″, 120lbs) had the “spitfire & spirit” to try & fight off some strange man 3X+ bigger. I must of appologized 100Xs but don’t remember the tazer. I’ve broken an EMTs nose, even been unfortunate enough to be filmed by local news station that happened to be at the court house the same day & time I dropped in the parking lot! How embarrassing. I still remember the look on the face of a sherriff about 5 years back, standing at the foot of my bed (my step son had called 911 as it was the 1st seizure he witnessed & it scared him), I felt trapped in my body while someone else was causing me to repeatedly scream bloody murder, screaming “I don’t want to die, don’t let them take me, God help me …save me”! All of it was said so pleading & dramatic, but my conscious self was seemingly sitting in the background unable to intervene. I understood the reasons for pleading (I had gone 5 min without breathing, my partner said I turned blue, then white, then a god aweful grey) In that time I was in my mind running from those scary beings, that always show up…like shadows with great big voids where their eyes should be, there are always 3-6 & they always catch me but I dont usually remember the capture as I am running one second & laying on something cold the next second, with all these shadows standing over me. They speak but without mouths or sound, its more like I hear them in my head. They are telling me I need to disconnect let go that my time is over and similar such things, but I’m terrified I dont want to let go, Im not ready I try to fight but am parylized. They seem genuinely concerned yet authoritative and poweful and scary, I just keep pleading & trying to force my body to respond to my mind which wants to fight with every fiber of my being).
I have night terrors also, kicking & screaming where I need to be woken up. They usually involve huge spiders, or me being captured by the Gestapo while trying to smuggle out babies & children to safety during the war in Germany… they catch my & brutally torture me …thats when I get woken up. Have had the night terrors since childhood but the epilepsy started in my mid 20s.

LikeLike

Comment by forevermymissingchild — June 6, 2019 @ 7:27 AM

Do you have a VNS?

Vagus Nerve Stimulation…Is it for YOU?

https://epilepsytalk.com/2011/03/13/vagus-nerve-stimulation%E2%80%A6is-it-for-you/

It’s obvious you need something to keep you from going into the postictal stage.

Even emergency meds would be better than what you’re going through now.

In Case of Emergency — New Solutions

https://epilepsytalk.com/2017/05/26/in-case-of-emergency-new-solutions/

You MUST find a way to prevent yourself from going into the postictal stage and I think a VNS would help.

If not that, then an RNS.

Responsive Neurostimulation (RNS) Shown to Reduce “Untreatable” Seizures

https://epilepsytalk.com/2017/01/12/responsive-neurostimulation-rns-shown-to-reduce-untreatable-seizures/

Please look into either, or both.

LikeLike

Comment by Phylis Feiner Johnson — June 6, 2019 @ 10:23 AM

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