Night time seizures?

[nibiru2012]

To Meetz

Thank you Meetz:

Are you the forum moderator?

I do have the feeling of falling. Actually that´s my biggest issue right now. And I´ve had it all my life, but a lot more now. I´m 35. When I´m falling asleep I get it a lot with fast images I see or dream, and an electric shock wakes me up with a jump. I have a hard time falling asleep now because of these and it affects me a great deal psychologically at the time of going to bed.

I don´t know if it´s the same thing I get all night (like my video shows). Cause in my video I´m already sleeping. I guess they must be then myoclonic jerks/twitches like you say, for I´ve read you get these in stage 2 sleep, which is the only stage I get (my polysomnographies show). I get no restorative sleep at all.

But even if it is just myoclonic jerks/twitches, isn´t this a sleep disorder too? Could it be psychological? Is there a drug for this? I do take Clonazepam (klonopin) and my sleep doc says that´s sometimes used for sleep seizures. Something´s not letting me have depper restorative sleep, my doctor says, but we don´t know what it is yet.

I do have to better my sleep habits and control my anxiety. And rule out sleep apnea too definetely. Or confirm it.

About the 24 or 48 hours EEG test, I don´t know if I can take that one for now. They´d have to prescribe it. I´m only seeing a sleep doctor now (psychiatrist) who happens to want to rule out epilepsy during my sleep. Both my parents had a brother who had epilepsy, but like I´ve said before, I´ve never had a seizure.

I don´t have an actual neurologist, cause I´m not supposed to need it. I did take the EEG with sleep deprivation but it tested negative and the neurologist at that epilepsy center, I saw him, said i didn´t have epilepsy. I also showed him an MRI of my brain.

So now my sleep doc wants me to take that telemetry test (don´t know the name). It´s an EEG overnight I think with video recording. I´m definetly taking it. He prescribed it once he saw the video of my twitches. He said those are myoclonias.

So you said you used to have sleep apnea but not anymore... but you still have night time seizures /epilepsy. How is your sleep? Do night time seizures from epilepsy make people sleep poorly?

Thanks so much for your help!!! I´ll keep you posted if it´s not trouble (this message is so long!!! jajaja)

John.

 

[Meetz1064]

OK, let's

see if I can answer all of your questions.

Yes, I AM ONE of the forum moderators--there are nine of us, I believe.

So, you don't get to REM sleep at all (dream sleep). Whether or not this is considered psychological, I'm not sure, some might call it pseudoseizures, others might not. Klonopin is what I use to control my myoclonic seizures. HOWEVER, I also do not reach REM sleep myself because I do not make any melatonin within my pineal gland AT ALL. I have a pineal cyst, and so must take pharmaceutical grade melatonin to replace it. This way, I get some sleep, and do dream--not all the time, but far more often than I used to.

Yes, you do have to better your sleep habits, and that includes turning off the TV before you go to bed--at least a half hour ahead of time.

As for the EEG (24 to 48 hours) your sleep doctor CAN prescribe it. And if your family has that kind of history of Epilepsy in it, it really NEEDS to be run, no ifs, ands or buts about it.

Who on earth says you don't need a neurologist?? GET A SECOND OR EVEN A THIRD OPINION. YOU PAY THE DOCTOR'S SALARY (AT LEAST HERE IN THE US.) You are ENTITLED to know what is going on inside your body, and you ARE entitled to get some decent restorative sleep!!!

The sleep doc is right, those are myoclonias.

As for my sleep, and nocturnal seizures: My sleep is for the most part, fairly decent because I have most of my nocturnal seizures under total control. There are some that occasionally slip out, and I DO know the next day when one has happened, usually. Especially if it is a tonic clonic (haven't had one of those in 6 1/2 years) or the electrographic (brain seizes all night, and you wake up totally exhausted as if you never went to bed).

As for other people in general sleeping poorly due to nocturnal seizures, I am not totally sure about that, I think it is an individual thing, but I would think that yes, it would disturb their sleep.

I hope this helps some, and feel free to come back anytime. That's what we're here for!

Meetz
:rock:

 

[matchu]

wanted to do some double checking before I answered you.

Mr B is right, those are not myoclonic SEIZURES. Those are myoclonic JERKS/TWITCHES. They do not last as long, or involve both sides of the body which is fairly typical of myoclonic seizures. Also, when having a myoclonic seizure during sleep, some people will also have the feeling as if they're falling off a cliff.

I have this dream quite often and it ends in me jumping almost out of bed, kicking the dog most times!

 

[Meetz1064]

Perhaps you

need to be checked for myoclonic seizures, Matchu.......

 

[nibiru2012]

Thanks

Oh god. I didn´t know you could have pseudo seizures. How is that?

I do get the feeling of falling, all the time, every night. But i thought it was psychological. It seems to be normal for epilepsy, since i´ve read it several times already in this night time seizures forums. But i´ve read they´re normal to sleep myoclonus also.

I do dream, but it´s a very light sleep. I can almost always remember it.

So the cyst in your brain is what causes your epilepsy? Or it´s something different? Anyway, i´m glad you sleep well. I think i need a lot of that melatonine you take jajaja. I go to sleep really late at night and not always because i feel sleepy.

I have a cyst in my brain also, funny!!!. It´s supposed to be there since i was born and it´s filled with brain liquid. It´s not compressing anything so doctos tell me it´s not harmful at all and that they´re fairly common.

I´ll take the test my sleep doctor prescribed. The video recording one. An epileptologist is gonna do it, so i´ll talk to him and ask him for the 24-48 hours one.

Thanks,

 

[nibiru2012]

Klonopin

Hey;

One more thing I forgot: what dose of klonopin do you take? Is this all you take to keep your night time seizures away? I swear i won´t self prescribe. I do have this in drops but I take very little and not every night. I don´t even know which dose I take. Just that I take 5 drops. My doctor says that for seizures doses are higher. I´m just courious...

John.

 

[Meetz1064]

Ummm, my

epilepsy is NOT caused by the cyst in my brain....the doctors really have never figured out the true CAUSE for my E. I didn't have brain damage at birth, no head trauma, no umbilical cord wrapped around my neck at birth or anything....

If you get the feeling of falling, you may very well be having myoclonic SEIZURES in addition to the myoclonic JERKS/TWITCHES, and that's not unusual, either.

As for information on what pseudoseizures are, check out this link, it will take you to a few different threads within this forum that discuss them:

Pseudoseizures Threads

Hope this helps!

 

[KelVarQ]

It got posted, GREAT!

When I´m falling asleep I get it a lot with fast images I see or dream, and an electric shock wakes me up with a jump.

Hey John, I'm glad it got posted and I said you would get a lot of responses. I saw the video yesterday and I didn't recognize seizures because I too was expecting the extremeties to jerk in a repetitive type motion, however, like I told you I'm no expert and if they're saying those twitches are part of it than I wouldn't doubt them.

But, what I quoted from you above as you know I definitely get that when I close my eyes to go to sleep and for me this is a sure sign I will seize (CP) in my sleep. I do, however, have my arm going and sometimes both of them. Another thing you mentioned about the electric shock...I've had that happen to me 2x and it woke me up as well as scared the daylights out of me. I recall someone mentioning "auditory hallucinations" in regards to seizures.

Again, I agree with EVERYONE in that you really should see a neurologist or epileptologist because he/she would be better able to help you. Like I said yesterday there's definitely something going on and if you're not getting that deep sleep it's NOT GOOD! I don't know a lot about sleep apnea but currently I seize during the transition period of going into deep sleep and getting out of it and it sounds like you're having trouble getting into it period.

I'm happy you got so much feedback as I knew you would by putting it up here. Hopefully you can get to the bottom of this shortly. BE WELL and keep in touch : )

 

[nibiru2012]

KelVarQ

KelVarQ:

Oh my God, I´m so scarred now!

I do move my hand repetidly in one of the videos. It happens right after one of my jumps. It´s like I´m writing or something.

Perhaps i should upload it so you see it and tell me.

I know, i´ll take the test to be sure right?

Thanks,

John.

 

[Meetz1064]

Hey John,

Being scared doesn't do anything. Just take a deep breath, in and out, in and out, in and out. You can calm down this way, so you can think for a bit, OK?

I'm NOT disputing or putting down the fact that you're scared by any means, but it's not useful at this point. Try to look at this wit an analytical point of view. What do you need to do to limit the jumps/twitches/possible seizures? What do you need to do to try to get some better sleep?

You could start out with giving yourself a set bedtime every night. Turn off the TV AT LEAST a half hour before you go to bed. NO CAFFEINE at LEAST 6 hours prior to going to bed. Sleep only in your bed. Drink some herbal tea if you want before you go to bed to help you relax.

Also, cut out the NEUROTOXINS that you're using in your daily life, and this alone may help you greatly. They're not easy, but doing so will help. Some common ones: Caffeine (sorry this is in chocolate too, besides coffee and pop), MSG (monosodiumglutamate--a flavor enhancer), soy, and alcohol to start. For quite a few of us, gluten (a part of wheat) is also a neurotoxin, as is milk, or parts of it, and sometimes corn, too.

Start with cutting out the Caffeine and MSG first. And the alcohol. They're the easiest to do, and see if there's any effect. And MAKE SURE YOU KEEP A JOURNAL DOCUMENTING IT ALL.....

 

[Bernard]

... So now my sleep doc wants me to take that telemetry test (don´t know the name). It´s an EEG overnight I think with video recording. I´m definetly taking it. He prescribed it once he saw the video of my twitches. He said those are myoclonias.

The vEEG should help diagnose the issue. :mrt:

 

[Danie]

:e: Thanks :e:

 

[nibiru2012]

Telemetry

Hey all:

I anybody reads this thread...

So I took the telemetry test. I was unsure about taking it, but took it. It seems to be a big deal. Lots of cables in my head for a whole night with video recording. The nurse never left my side.

In the morning she told me I had some crisis (seizures?), although the reslult isn´t ready until after 2 weeks. So now I´m scared again.

Besides, last weekend I went on a trip with my parents and my mom watched me sleep. This never happens for I live alone. I had a hard time falling asleep because of the images and fast dreams I see when I´m falling asleep (my jumps).

When I finally fell asleep I had a nightmare/sleep paralysis. I couldn´t wake up. My mome was watching me and she says she actually saw me have a seizure with my eyes open and moving.

Does anybody here feel during the daytime that they´re about to be abscent or leave their bodies? Like an out of body experience? I confuse it with being sleepy, but I don´t know. It could be my derealization symptom from my depression (from my sleep deprivation).

I get this often now, specially when I´m very sleep deprived and tired. Is this a symptom of epilepsy (without actually having a seizure)?

Are there people in this forum who have sleep myoclonia/jerks as a sort of epilepsy but no actual day time seizures? Also the images and hallucinations when falling asleep?

Thanks,

John.

 

[Meetz1064]

John, it's

me again.

It's important that you don't get over-stressed and worried about what the outcome of the test is going to be. Whatever it's going to be, is what it's going to be. ONCE YOU GET THE DIAGNOSIS, you can work from there.

IN THE MEANTIME, work on doing whatever you possibly can to remove as MUCH stress as possible from your life NOW. I know that it's easier said than it is done, but start working at it.

THEN, start doing things to make yourself RELAX on a daily basis. Work on your sleep habits. Somewhere, I have a list of how to improve them, I'll see if I can find it, and post it for you. It's very important--ESPECIALLY if you end up being diagnosed with epilepsy (any kind), but particularly if you're diagnosed with nocturnal epilepsy.

You're going to be OK. Just don't psych yourself out. We'll be here for you. Support you........we can definitely do that.

Start that E journal, too. It will definitely help. And get rid of the caffeine!

Take care.

Meetz
:rock:

 

[nibiru2012]

What now?

So I took the overnight video recording EEG and it turned out negative.

The epileptologist said I do have myioclonias all night, but that´s just my body moving (axial movements). There´s was no electrical activity in my brain´s channels.

So he thinks I only have uncontrolled sleep apnea and I should address that. Those myocloneas are supposed to happen during stage 1 and 2 sleep, which are the ones I´m in all night. So he says I get them cause I´m half asleep half awake and that´s like a reaction of my brain/body to that.

Also that I need to address my sleep apnea, which I´m going to, but...

Should I rule out night time seizures for good now? I mean, I know my Doctor´s good, and I don´t mean to sound like I don´t believe him, but I read messages here about several negative EEG´s until finally a positive one diagnoses epillepsy. Or the 24-48 hours EEG. What´s this one for? I mean, do I have to remain in the hospital/clinic for this one the whole time? Like get interned and be in a room like a patient?

I often get this weird thing where I have weakness and numbness of my left side (neck, arm and back) the days after I´ve slept real bad. I get so weak and sleepy I have to lay down for a while until it passes. When it´s bad I also get shortness of breath and weakness to breath. Does this sound like epillepsy at all? I used to have these shortness of breath and sleepiness attacks a lot for a year. It felt like a heart attack but tests were negative. I only get those once in a while now and I blame my reflux.

Another thing that bother me a lot is this feeling of absence during the day the days I´ve slept real bad, which is almost everyday now. Or like a feeling I´m about to be absent. It´s also accompained with sleepiness sometimes. It´s a complete cycle... then I try to fall asleep and the half awake hallucinations come with the feelinlg of falling/electric shock waking my up with a jump in the end.

My doctor says that feeling can be derealization, a symptom of depression and anxiety, both of these caused by my sleep deprivation.

So should I stop with epillepsy or should I rule it out? Off course I´m gonna take better care of my sleep apnea now. I´m gonna travel next year to take a sleep study in a real good clinic in California. I wonder if they pick up any epillepsy with a regular sleep study for sleep apnea...

Thanks for any input,

John.