I think i am having nocturnal seizures help/advice please!

[dangermouse]

Hi My names Donna i am new here.
I think i am experiencing aura's & nocturnal seizures.

I would appreciate anyone's advice, help or own experiences on what i have been experiencing.

For a long while i was suffering from choking episodes and a sensation of not being able to breath, waking up with a rapid heart rate, feeling like i was going to pass out and snoring, waking up with a snort & having weird dreams that always tended to have a theme around me choking, holding my breath under water, or in a building with smoke and having to hold my breath.

I started video recording myself whilst sleeping at night.
Although not every night i was having obstructed breathing and it's clear to see.

I went to my doctor about it and i was fobbed off saying that i can't have a sleep apnoea as i am skinny, don't drink smoke and a women etc.
Took me a long while to get a sleep study as they said i don't fit criteria the for it of something like that.

Went for a study but only sleep four hrs.
I was not well at the time and although i was snoring the obstructed breathing did not happen there, typical isn't it.

The doctor said to classed as be sleep apnoea it has to happen a certain amount of times and for a certain duration.

Anyhow i was not going to let this go as i knew i did have a problem so i produced the video of myself sleeping and he could see there was something going on. Although i didn't get diagnosed with classic sleep apnoea i got a diagnosis of sleep related upper airway obstruction & prescribed a Mandibular Advancement splint to keep my airway open during the night.

Now latly i having been feeling very tired and experiencing what i believe to be aura's although i have had them for yrs they have become more frequent. This is what i experience, deja vu & like something is very familiar. Also i keep on smelling different things some of which give me the deja vu feeling.

I had strong smell of smoke before i went to bed once, and feeling that something bad was going to happen. Of late i keep smelling what seems to be like the smell of alcohol, almost like when it fruit ferments and turns into alcohol. It gave me the deja vu feeling & it reminded me of when my dad used to make home made wine. This one has happened several times in the last week or so.

This may sound weird but i would put it how it feels or seemed to me.

I went to bed and although i was asleep i remember this sensation in my body of it almost tighntening up, going stiff and jerking around i could feel myself and my body moving.

I was aware but i couldn't do anything to stop it or wake up. I could feel one of my legs was really stiff and tight and almost felt in the air and my body was close to falling of the bed.

I recall a seeing my dog or a hazy distorted vision of her standing by the side of the bed, i remember i think tried to call out.

Although i thought i may of been a dream in a way it didn't feel just like a dream. It felt like i was watching what was happening to myself, i was aware what was going on but could not control it.

I could see myself in the bed and what was going on. Hope that makes sense although asleep.

Then another night i went to bed i recall having what was a dream type sensation a lady held my wrist and said i am going to make you pass out and pressed a part in my wrist and i did. I could feel my eyes rolling back and i was trying to open my eyes to wake up but i couldn't.

Then last night i went to sleep i remember waking up briefly several times and later on in the night i had another dream type sensation that i had a seizure & i could feel one of my legs went really tight and stiff and almost hanging in mid air but i could not do anything to stop it.

I have begun to video tape myself again sleep because i feel that strange deja vu sensation, smells and the other stuff i have been expriencing.

I have noticed from the recordings that i have alot of muscles twithces, arms hands, shoulders, face, lips & mouth not always at the same time, not noticed my legs doing it on the video as i have had the camera focusing on the top half of my body.

Sudden jerks of hand, arm, shoulder, finger twitches and or the face, throwing my head back or to the side. The mouth/lip movements are strange my lips pull back and upwards, almost like a dog bares it's teeth when angry, actually i do bare my teeth or my mouth or lips jerk off to the side.

I have not been able to catch the violent twitching of my whole body or legs as that must of happened later when the tape ran out, again typical.

I do go to see a neurologist as i have M.E CFS i want to mention this to her but feel that i am not going to be taken seriously or if i go for test they wont show anything and they will say there's nothing wrong when i know there is. I am trying to get my video evidence like i did before.
My instinct & subcouncious told me before that something was going on in my sleep and i believe it's happening again.

Has anyone else experience anything like what i am experiencing, does this sound like nocturnal seizures?

Any input or experiences of your own that are like what's happening with me would be appreciated.

Many thanks i look forward hearing from anyone who replies to me.

Donna aka Dangermouse

[Bernard]

Hi Donna, welcome to the forum.

It certainly sounds like you are experiencing auras/simple partial seizures and nocturnal complex partial seizures.

You might find these discussions of interest:

http://www.coping-with-epilepsy.com/...p%20apnea.html

[Nakamova]

Hi Donna, welcome!

Here's a thread with some more information about auras/simple partials:

Experience AURA or AURAS?

[Endless]

Hi, Donna,

And welcome!

I agree with all of the below, and will add just a few things.

Did you see an actual sleep doctor? And do you have an appointment with a neurologist? You will need to see both.

It would be very helpful to your doctor if you could get all of the kinds of activity at night on a recording. It would help tremendously in diagnosis.

If sleep apnea is a trigger for your seizures, it doesn't take sleep apnea that's bad enough for that diagnosis, just some that's happening at all. My sleep apnea is now under control (per my sleep doctor) with a CPAP - I only have 3-4 episodes per hour. The part he's missing out on is even one episode can trigger a seizure for me, so we need to get it down to zero episodes per hour. About 1/2 to 2/3 or more of my seizures happen at night, and I think this is why.

You also need to have your sleep doctor and your neurologist work together. Some of what you describe could be either seizures, or a sleep disorder. It will take trained physicians to figure out which is which.

Here's a description of some of the sleep disorders:
http://sleephealth.tripod.com/7rem.html
http://thesleepsite.com/content/view/27/64/1/4/

Here's a description of the types of seizures:
http://www.epilepsyfoundation.org/about/types/types/

Hang in there. After some time and tests all this will get figured out. Just keep working with the docs until it is (or find new docs who are smart enough to figure it out).

[dangermouse]

Hi all,

Thank you all for your advice and information given.

I am trying to gain more info about nocturnal seizures and gain as much video recorded evidence as possible.

I have seen a sleep doctor before but my sleep related upper airway obstruction didn't occur during that time i was monitored but luckily i had my own pre recorded video evidence to support the fact there was a problem going on.

I was seeing a neurologist up until a few days ago for ME CFS which i suffer from, however for reasons out of my control i need to be re referred to be seen again by a neurologist.

I have noticed some more things that are occurring during my sleep from recording myself.

I believe these particular things maybe Automatisms, related to seizures?

I will rub my face, touching my face as if i am feeling for something, cupping my head in my hands, rub or scratch my nose, pull a upwards teeth baring grin or smile, sometimes looks like i am laughing, chewing movements of my mouth, Forced blinking of my eye or eyes while they are closed almost like you would do if something was heading at you to hit you in the eye, body and face twiching, jerks, i caught myself on camera actually hit myself under my chin jaw with the lower part of my hand that connects to the wrist then i forcefully blinked winced with my eyes closed woke up look startled/confused then proceeded in touching/feeling my face. The action was quite a bizarre movement.

I seem to wake up many times from sleep open my eyes look confused, look around then go back to sleep.

Thanks for all your replies.

dangermouse

[Nakamova]

Hi dangermouse, the automatisms you describe definitely sound like complex partial seizures. And if they are messing with your sleep that much, that's got to be hard on your system. I hope you get help soon.

[dangermouse]

Hi Nakamova,

I hope this is sorted soon too & i have been feeling exhausted. Whatever is going on in my sleep, plus the airway obstruction, and M.E is not going to help at at all.

dangermouse

[Bernard]

Hi dangermouse, the automatisms you describe definitely sound like complex partial seizures. .