Question for night-timers....

[TeeTees]

Last night was terrible....I was real tired, but as I was dropping off to sleep I could 'feel' that the dreaded seizure was gonna rear it's ugly head, so I'd quickly awaken again (voluntarily) as I was afraid of having another.

This happened several times at the beginning of my 'dropping off to sleep' period, when eventually I just had to give in and take a leap of faith that I wouldn't have one....and then BAM!...as soon as I got INTO my sleep, out came the seizure.

But I kinda felt that I was stuck in a rut with it - if I didn't have the seizure, I wouldn't manage to get off to sleep and so I had to give in.

I've never really experienced this one before, and was wondering if anybody else has ever had this situation

[brain]

TT:

The nocturnal, what you described; I can't explain
it but, I've also awaken suddenly as if in "startled"
movement -but that is from those who have seen
or witnessed it (like my ex, son, or if I fell asleep on
the couch or floor or during a nap when I didn't feel
right) - would wake up, confused, in a daze, and
then as suddenly as I woke up would suddenly plop
back down and fall right back to sleep as if nothing
ever happened. I have no memory or recollection of
this at all, and it only happens for a brief moment.

However, those who had witnessed it, would remark
that I would seize (simple partial - mild, or jerking which
can be mild to violent) - then a pause, then all of a
sudden, it happens, I would shoot straight up, stiff,
and if during the daytime when they can see me, like
my son had remarked it, my eyes would be like glazed
up, like someone had put Vaseline all over it, and would
be pale as a ghost, and then go limp and plop back down.

This happens MORE when I am not on anti-epileptic drugs
after a long period of time, or I'm not on the proper level
of anti-epileptic drugs. But as long as I'm on
the right anti-epileptic drugs, or close to it, it does not
happen. A Neurologist I had told me it was a type of
a Reflex Seizure, but I can't seem to find or locate
any information pertaining to it or associating to it,
unless he's referring to "Startle Epilepsy" which is
associated with Reflex Group of Epilepsies.

I have no memory of this, but if you do, I'm not
sure what to make of it - You could have had a Simple
Partial and I could have had a Reflex? The best thing
to do is talk with your Doctor and go over it, if some-
one else witnessed it - ask them how did you appear
during it - because this would also help the Neurologist
(or Epileptologist) a lot in this area.

Now, it is possible that I could have had other episodes
and no one knew about it because everyone was asleep
and they're left unaccounted for.

So please go over with this with your Neurologist and
let us know what the response and reply is; for I've
already shared you what my Neurologist implied on
my part from long time ago - determining it as Reflex
Seizure. The reason why I made mention of Simple
Partial, is because I've had various types of seizures
during my nocturnals, and it does seem that Simple
Partials and Tonic Clonics are common with Nocturnals.

[Georgiagirl88]

Hi Tee,

I have these as well.. My seizures are 99% in my sleep. I may have auras or weird feelings (dizzy, staring spells etc.) but my actual seizures wake me from my sleep. I hate them!! I know I am having them.. I am fully aware. Yet, very foggy. I may have seizures I don't know about. I do wake up post ictal sometimes too. When I have them, I am out of it and not fully with it. Very shallow feeling, barely breathing..so many other feelings. That is the worst part for me..the feeling of very shallow breathing..like a slow miserable death. The epileptologist and neurologist both say they are complex partial. And mine are apparently very unusual as well. I have feelings of crossing over to the dead-zone as I call it. I get so many weird feelings..it is hard to describe. I tried for yrs. telling Drs. how I felt to no avail! They were sure I had anxiety. It is hard to really describe all of the feelings. It does make me paranoid to go to bed and sleep after I have had them. The past several nights were bad for me. Last night in particular was really a bad night. I am also so dopey feeling, weak and feeling like I have been through hell and back.
I really hope you feel better Tee. My heart goes out to you. Do yours seem to come in cycles? Mine usually seemed to..but the last month or so has been more than not! Hope you sleep tight tonight!!!!

Michelle

[seizures4ever]

Hey TT,

Like the others, I often have the night time auras as I drift off to sleep. I fight them, but I know they will eventually become a complex-partial (either in my sleep or if I stay awake). Most of the time, I just stay awake and deal with it. If I keep fighting it, it will just take longer to happen. So I give in, let the sensations take over me, have the dang seizure, and go to sleep.

To answer your question, yes, I have been in that same rut you speak of, and yes, I have "given in" more times than not.

Take care and be sure to update your neurologist.

-Julie

[alivenwell]

Has anybody ever had a sleep study? Does anybody take a higher dosage of medication at bedtime?

[Franciz]

Good thing that all my seizure occurs during daytime...

[brain]

Has anybody ever had a sleep study? Does anybody take a higher dosage of medication at bedtime?

In the past, I had a Neurologist that had
me to come in at nights for the EEG runs
so he could find the best medication(s) to
try to control the nocturnals. They didn't
have "Sleep Apnea Centers", and there
weren't any need for me to be there 24
hours a day or thereon because the seizures
were controlled during the daytime.

And in the past, I've had higher dosage
at bedtime (aka HS) - but for most of
the time, it was Dilantin with Klonopin
at HS. However, the Klonopin was an "on
and off" thing - because it all depended on
the HMO Neurologist I had. But I've had
other anti-epileptic drugs at nights
that did and did not work.

Did the Klonopin work at nights? Apparently,
yes it did - so I'm often left wondering why
am I taking it TID instead of what I used to
take long time ago - 2 mgs @ HS? I haven't
figured that one out yet... but I've been on
the same daily diet - Zonegran 400 mg,
Klonopin 1.5 mg, and Folic Acid 2 mg since
2006.

[TeeTees]

Hey TT,

Like the others, I often have the night time auras as I drift off to sleep. I fight them, but I know they will eventually become a complex-partial (either in my sleep or if I stay awake). Most of the time, I just stay awake and deal with it. If I keep fighting it, it will just take longer to happen. So I give in, let the sensations take over me, have the dang seizure, and go to sleep.

To answer your question, yes, I have been in that same rut you speak of, and yes, I have "given in" more times than not.

Take care and be sure to update your neurologist.

-Julie

Thanks everyone for your kind words.

Julie ^^ you seem to have hit the nail right on the head as to my experience the other night. I hadn't had one before, not that I remember, where it was just gonna happen whether I stay awake fighting it, or just get off to sleep.....so like you, I just gave in to it the other night so that I could at least get a good nights sleep (well, as good as it CAN be that is).

Georgiagirl : the seizure's you're referring to are my 'normal' kind. They're the ones I usually experience where you're already asleep, and then WHOA - you know it's starting to happen through an aura, and do your best to deal with it (even being able to fight it off sometimes). But the one the other night was simply impossible to fight - it's really awkward to explain, especially considering I'm a 'don't give in to it' kinda person. Mine do usually come in cycles too, but I have a question for myself and others who have cycles; do we have them because we are 'expecting' them to happen, and therefore 'create' the cycles ourselves ?....something to think about I think Sorry to hear you're having a bad time with it too though, and hope you can kick 'em where it hurts as well. I certainly ain't giving in to 'em without a fight - that's for sure.

I'm basically writing mine off to the fact that I'm in a bit of a confusing situation, what with having no job to go to, and therefore waking up without a 'reason/routine' (pardon the morbid thoughts). It's time for me to adjust and allow my circumstances to be what they are, and simply get off my butt and find another job - then I'll probably find that I have a few more as I have to adjust to change again....lol Life's a bitch at times huh ?

[Meetz1064]

Mine are strictly in my SLEEP CYCLE. Problem is, if I get that screwed up, and start sleeping during the DAY, well, then, they can happen during daytime hours.

Generally though, mine are at night. And, I have no warning. Nothing. But I wake up knowing I had one, usually without anyone telling me......the bruises, and the completely-bitten-through-tongue are usually dead giveaways for me.

When I go through what I call "shaky patches" like when I'm switching meds, I am ultra aware of any little twitch at any given time......ALL THE TIME. And the major "wobble" that I had this past summer.......and I wouldn't let myself go to sleep then, either......I was too terrified of seizing....with the back problems that I have right now from all the other injuries from the other seizures---uh NO, I don't need anymore! I ended up not doing so, which made me happy. And the next morning, I was on the phone, and in the neurologist's office.

Man, I am rambling tonight......

[TeeTees]

Mine are strictly in my SLEEP CYCLE. Problem is, if I get that screwed up, and start sleeping during the DAY, well, then, they can happen during daytime hours.

Generally though, mine are at night. And, I have no warning. Nothing. But I wake up knowing I had one, usually without anyone telling me......the bruises, and the completely-bitten-through-tongue are usually dead giveaways for me.

When I go through what I call "shaky patches" like when I'm switching meds, I am ultra aware of any little twitch at any given time......ALL THE TIME. And the major "wobble" that I had this past summer.......and I wouldn't let myself go to sleep then, either......I was too terrified of seizing....with the back problems that I have right now from all the other injuries from the other seizures---uh NO, I don't need anymore! I ended up not doing so, which made me happy. And the next morning, I was on the phone, and in the neurologist's office.

Man, I am rambling tonight......

Ramble on Meetz, ramble on - that's why God gave us the keyboard

I used to be completely night-time only, but over about the past two years, I've morphed into 95% nights, and the very few 5% days. I've woken to find bruises too, but nothing really drastic - they usually end up on my forearms, but real tiny and not enough for me to feel self-pity about - but I've never bitten my tongue due to the seizure.....boy oh boy, that must hurt!!!

But talking of SLEEP CYCLES : I usually don't do that good when going on a long distance vacation as the time is completely out, and my body/brain just can't adjust that quick to it all, so it usually ends up putting a damper around the end of the holiday. So, anyone living in Florida right now - I'm gonna throw you a rope (it's coming in now). If you can grab your end and give it a tug, I'll tug my end, and then I won't have to travel so far to get to a DECENT holiday destination

[s10sleeper]

My seizures are also really weird, they ahppen just as I start to get really drowsy to fall asleep. The bad part about the whole thing is that they will bring me wide awake, but still will be out of it. In order to be able to get a wink of sleep anymore my epileptologist has had to put me on ambien, they tried other meds, but other than ambien the only others that worked were barbiturates and I started to build an extreme tolerance to them. So now the only way that I can get to sleep anymore is if I take the ambien.

I have tried to get my Doctor to either switch me to something else or that I needed my level raised because even it has stopped working, but a regular doctor won't even give me a prescription even for antibiotics until they talk to my epileptologist because of the RNS procedure and the high dosage of seizure meds I am on.

[stilldancing_98]

My son and I both have them at night. He takes more depakote and topamax at night. It works unless he is stressed or sick or I have a seizure. I take Lorazepam at night 1.5 mlg. for myoclonic flurries. Sometimes I still have them. Ang t/cs at night. But I have nightmares when I have them in my sleep now.

[s10sleeper]

I've had nightmares before too when having a seizure, most of the time my dreams are about having seizures mainly.

[stilldancing_98]

Me too. So freaky. I usually have a tough time moving or breathing.That started after the coma.A lot of weird stuff did.

[s10sleeper]

Another weird thing that will happen to me is that I will feel almost like I am in a different world when they are going on.