Does Anyone Else Have Only Night Seizures?

[Kate]

My neurologist believes my first seizure was on May 6th. The reason we believe this, is because I wrote an entry in my journal the morning of May 7th about a dream I had. I called it "Waking of Paralyzed." I started looking up "Sleep Paralysis" because I was so sure that was what had happened.

Anyway, a few months later, in July, after my first set of seizures happened, I had a seizure in bed. However this time we knew it was a seizure - it was witnessed by my (EX)boyfriend. I woke up with that same feeling. I had no idea what had happened. I woke up and couldn't move, than fell right back asleep. It wasn't a serious seizure, so my boyfriend didn't even bother to wake me up. He said I jerked around for around two minutes, my eyes were wide open, I stared off into space, and than I went back to sleep.

I told my neurologist about it, and about the time in May where I had just woken up and couldn't move. She assume that that was probably my first actual seizure, but we would never really know.

I have NEVER had a seizure before 9 PM at night. I have had them not in my sleep. The earliest one I had was around 9:15 PM. I it was on vacation. I was in a swimsuit (it was just awful) I had just been swimming.. I got out of the elevator and was on our way up to the condo when I passed out cold and had a grand mal. Luckily the woman in the neighboring condo was a nurse and the security guard heard and he came up. It lasted awhile so they called an ambulance.

I ended up having one the next night (this is our second night on vacation).. I couldn't sleep, it was about 1 AM had been laying down, went to the bathroom, on my way back to bed (luckily I had my pants up!!!) passed out again and had another grand mal in the bathroom.

This time it lasted awhile again, so they called another ambulance. It lasted SO long that it was witnessed by the EMTs. Imagine, being in a big city and how long it takes the EMTs to get there and to get up a condo, my seizure was still going strong.. So, once they got me in the hospital, they decided to admit me.

I was in the Grand Strand Hospital in Myrtle Beach, SC for four nights and five days of my seven night vacation. The second night I was there, they did a spinal tap..

(Random horror story - they did the spinal tap, then left me alone in the room. They had asked my mom to leave (Im a big girl, Im 19, I dont need her, blah blah blah, and had said they would get her after. It had been almost an hour after, and I had asked for her again.. but no one would get her.) I felt very sick and did not want to throw up on myself. I was SCREAMING for a nurse but no one would come. I could see the trays you get sick into, but still - no one came. I had NO idea that if you did not lay still after a spinal tap you could make end up causing your spine to leak spinal fluid.. all I knew is I didn't want to throw up everywhere! So I jump up, hooked up to a million IVS (one for pain, one for diliantin (which I am allergic to), one for fluids, etc), and grab a bucket to throw up into. - this causes the spinal fluid to leak and I am in pain, and once I am out of the hospital, spend the rest of the week in the worst pain I have ever been in. I cannot sit up, I cannot keep food down. Crying constantly.. a total mess, and the neurologist just can't figure out why! *growls* We never knew why I was in so much pain and so sick after I got out of the hospital until about two weeks ago when I had to have another spinal tap and they told me what could happen if I didn't lay down after it for at least 13 hours. I was LIVID to say the least.)

OKAY Back to the seizures.

To this day, I have had around 10 seizures. Mainly grand mals. Some smaller ones following grand mals. I have had some in my sleep, some BEFORE I go to sleep, but never any during the day.

My neurologist acts like this is normal. I find it a bit strange.

I also have NO triggers.. I have never found anything to set them off.. I can't really say lack of sleep does it, since I have them at night. *shrug*

Does anyone else only have night seizures?

Does anyone else find this as strange as I do?

(Sorry this is so long - most of my posts are - my medicines make me such a chatter! lol)

[RanMan]

Kate,

Since you have your seizures at night, have you considered having a Sleep Study done?
(an EEG done at night while you are sleeping)

You could have a case of Sleep Apnea, there could be some kind of obstruction in your airway while you are sleeping causing a lack of oxygen to the brain.

IE: could be brought on by several ways.

IE: If you sleep on your back, it could cause the airway to close up and chronic snoring could be an indicator.

I've had epilepsy for 28 years and this is one of my experiences.

IE: I was dx'd with Chronic Obstructive Sleep Apnea in May 2007.
After my sleep disorders test the Dr. showed me the EEG from one night, I would stop breathing up to 50 times/hour and had 3 seizures and that I was waking up "post ictal" (moody and spaced out)
I have recently purchased a CPAP machine which provides constant air pressure and have noticed a vast improvement.
No more snoring (the whole family sleeps better now), more energy when I wake up, better REM sleep, improved memory (less short term memory loss), and most of all ~ NO MORE NIGHT SEIZURES.
Now maybe my Neurologist can reduce my meds.
I'm surprised that finally after 28 years I finally get an answer.
All this came about as a result of my wife's complaint to her Dr. about my snoring.

Randy VIEW IMAGE VIEW IMAGE VIEW IMAGE




--------------------------------------------------------------------------------
Diagnosed with Epilepsy & Ulcerative Colitis.
Current Medications: Diantin 275mg, Pheonobarb 150mg, Asocol 3,000 mg.

[Nancy]

I started having seizures - complex partials - only at night - soon after I went to sleep. That went on for many months. They woke me up !!
Finally the same weird "spells" (what I called them) started happening during the day too.
Those went on for many months.
It took that tonic clonic (called a grand mal Nov. 1, 1990) asleep in bed, to get anyone to pay any attention to me.

[speber]

I will only have seizures in my SLEEP....but it doesn't have to be at night per se...

If I've been sick and my threshold is lower than usual...a necessary midday nap can be devastating. I'm basically caught between a rock and a hard place at that point. I go until I drop trying unsuccessfully to make it to normal sleep cycles...then big E walks right in.

I ALSO have been diagnosed with sleep apnea, and the CPAP machine has helped me tremendously. More energy (more O2), no snoring (wife loves that one), and seizures down to once or twice a year.



Peace!

[Kate]

I have had a sleep study done actually. And I do have sleep apena, but it's mild sleep apnea. I tried the breathing machine, but I couldn't get to sleep with it. If you'd read my other posts you'd know I have bad bad insomnia and can only sleep on VERY high doses of Ambien ALONG with Ambien CR. Hopefuly they figure me out when I go see the specialist at the IU Medical Center in Indianapolis Indiana in January..

I have the CPAP machine. I REALLY need to try to get used to it more. The weird thing is I never had the snoring problem. Thats why they were shocked when I was diagnosed. My sleep specialist told me to not worry about using the CPAP till we got some other problems I have under control. (As in, my ankle surgery over, my back fixed, etc.) She said I have SO many other trouble keeping me awake, its understandable that I can't get used to sleeping with the machine. I hope that as soon as my surgery is over, I am able to get used to it though.

[speber]

...don't let too many little things turn into ONE BIG-*** THING, ya know?

...that's very bad ju-ju!

[forward2007]

Until recently 90% of my seizures only happened in my sleep.

[Bernard]

I also have NO triggers.. I have never found anything to set them off..

Dogtorj has hypothesized that nocturnal seizures could be related to digestive issues stemming from dinner.

Does anyone else only have night seizures?

Stacy was experiencing only nocturnal seizures once upon a time. Her seizure pattern has changed many times though. It's been our experience that seizure patterns are not set in stone. It's like the warnings you will see on an investment prospectus - past performance may not be indicative of future results.

[RobinN]

Very good analogy Bernard.

[brain]

I have birth defects, DNA, genetic disorders;
and had always had nocturnal seizures.

[Tate]

Does anyone else only have night seizures?

Hello Kate, Hello All

I am 29 I have had E since I was 15, for years I only ever had seizures whilst I was asleep, right at the begining I had 2 when I wasnt asleep one was in the middle of the night i had gotten up to go to the toilet and the other was about 10pm and i was just watching tv.....

It wasnt until bout 3-4 years ago the my seizure pattern changed, it did several steps, I did began to have partial and complex partials, but they picked up for some time, as if i was by myself i didnt even know i had one most of the time.

My seizures continued to grow in severity and frequency, I went through testing with video monitoring and so many other forms and ofcourse scan after scan sleep studies more video eeg, stimulation, testing to find motor skill locations of my brain such as vision, hearing memory and language

One months ago I under went surgery so far it has been a sucsess, I havnt had a seizure yet so thats so so so encourging... its been well worth it even to go a month is like so so so good!!! Im happy I did it..

One of my friends I met through a support group also has nocturnal seizures, she has had since she was 17 and is now 32, and has continued to have them only at night.... she is the only other person that I know personally that has night time only seizures but the girl a did a week video monitoring with who was 20 has had E for 18months and she is only having sezuires in her sleep and she only has grand mals she does have auras and they were mostly at night...

The 3 of us all had sleep studies done and none of us had sleep apnea, nor did they find anything else they thought was significant.

I never used to think that I had triggers Its trying to find them I had trouble with..... sometimes I think u find one just cause ur looking for a reason to why... So if I had a fight with someone that day.... oh maybe it was that.... it could have been..... though it might have been that my magnesium and b vits were way to low..... or I havnt eaten correctly the past few days or not enough sleep or even too much sleep.... I dont know if everyone have triggers I do how ever think there are people that do but they are unaware of them

I think seizure journals/diaries are a really good thing to do...... not just when and severity.... a basic daily journal..... breakfast at 7am oats lunch at 1pm fruitsalad water and a coffee....

sounds not worth the effort a bit..... but you never knoe if u never go...... I noticed after a few months they days i had a grand mal or even several auras and a complex partial i had a fair bit of coffee later into the day..... I stopped having coffee after 3pm and cut the amount down..... my seizures didnt stop and I wasnt thinking it would but i added the coffee back in and had seizures...

sorry for the long post.... no concertration 2nite, sorry if it doesnt make sense

Take care Smile stay safe
Tate x

[Georgiagirl88]

Hi Everyone,

I have had "night spells/seizures" for at least 5 yrs. probably longer. I also have sleep apnea. It took yrs. of Drs. telling me anxiety and wrong diagnosis to taking myself to a specialist and finding out about the apnea. My "weird night spells" as I called them , did continue and after the same stories of me knowing things were not right and Drs. not listening... a neurologist did an eeg and it was abnormal with the neurologist and also an epileptologist from the sleep center believe they are seizures. I go back tomorrow for a followup. I am nervous...I just need answers and some feeling of them getting better. Last night was terrible! My spells are so strange and scary!

I feel extremely shallow and fading away..like crossing over to the other side. Feels like dying?? Horrible feeling.
Barely breathing. Then heart will pound hard,racing. Head gets very dizzy...headache. Tingly arms or legs or both. Difficult to open eyes...blinky. Very shaky feeling...electric tingles in body.
sometimes my arms or leg may briefly have a jerk. At time it feels like paralysis. Even hard to swallow for a moment even talk for a moment. I know what is happening, yet feel very foggy. I have had flashes behind an eye, once woke up laughing hysterically for a min. or two for no reason and could not stop. I knew it was so weird while it happened. My spells can last for a min. or two..if they are not too bad and I am able to fall back to sleep, or like lat night, it last for about 40 mins. WHen I say that....I felt very dizzy and weird, shallow for that long. WHen they are bad...I ALWAYS feel terrible the next day. Extremely weak/tired, headache, depressed from having them. Arms and legs very heavy. More pain than usual.

Anyways...I hope to get more answers and hope tomorrow. I will probably end up being sent to our major epilepsy center at our hospital downtown.

Best of luck to everyone! My heart goes out to all...they really stink! But hey, there are much worse thing too I guess! : )) Does anyone else have similar night spells???

Take care!
Michelle

[RobinN]

Have you ever been checked by a heart specialist?

[Georgiagirl88]

Yes, I have have had all the heart tests...ekg's nuclear stress tests, echo. etc.. all clear. My EEg was abnormal.

[RobinN]

Yes I remember reading that. It is not clear to me as to the fact that if you have another organ or function of the body that is not performing properly, and your brain is put into seizure mode, would you also not have an abnormal EEG?

[Georgiagirl88]

Hi Robin,

I am not quite sure I understand what you mean...do you mean that other things can cause seizures? I have thought about this often. I do know that other things can bring on seizures.. From all that we have seen, my heart is fine. I know my apnea is controlled after several sleep studies. I unfortunately didn't have any spells during my studies. After speaking to my neurologist..he said that can be the hardest part. Some seizures are tricky and not outwardly seen I guess. Hard to predict.I have gotten better at noticing if I may get one. The Drs. are still at the early point of figuring it all out for me. The epileptologist said she really believes them to be seizures.Actually that is the fourth Dr. to say that. I did have a head injury in High School.?? Who knows the cause? (Of mine I mean) Anyways..I go tomorrow for another follow up.I will hopefully get more answers. I think the unknowing is for me the hardest part almost. Definitive answers would be great. I have gotten some. However, I've gone for yrs. without any answers. I have heard this from others as well. At least I know I'm not alone, right?

Thanks for replying!
Michelle : )

[Bernard]

Best wishes for your follow up tomorrow.

[Georgiagirl88]

Thanks Bernard!

We'll see how it goes. I'll let you know.

Have a great day! : ))
Michelle

[jasminerose]

no you are not the only one who has nocturnal epilepsy. i also have nocturnal epilepsy and I HATE it. atleast alot of them happen while i am in bed, but i have fallen off the toilet a few times and split my chin falling down while i was walking and quite a few ambulance rides and hospital visits. you are not alone.

[Aaleayha]

I have weird dreams sometimes, every blue moon. I have a dream, and in the middle it suddenly jumps to me having a seizure (no matter what i was doing before) and I woke up drenched in sweat, I hurt and I have a headache. But they could also stem for Sleep apnea or like Bernard said, gastrointestinal problems (I have bad IBS.)