I have some questions... :)

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AutumnBreeze
New Member


Date Joined Jun 2009
Total Posts : 2
   Posted 6/10/2009 12:41 AM (GMT -7)   
Hello everyone ...i am new here, and i have been trying to search the web about my questions...but to no avail.
Thats how i found this forum. :)
 
I was hoping someone here could tell me if they have experienced any of this: (or maybe i am just nuts...lol.)
 
I have been diagnosed with sleep apnea, and then temporal lobe epilepsy. I take no meds for either. I was told the conditions are mild.
 
(I also have experiences at night where i am awaken with a LOUD bang...like a gunshot...scared me to death the first time it happened.. i thought someone was shooting in my bedroom window..lol),  but anyways..sometimes that happened frequently...i dont know if thats related to my temporal lobe epilepsy or not? And cuz of that i have to sleep on only one pillow with my neck tilted down towards my chest so those gunshot and whooshing sounds dont happen as much. Odd...i know.)
 
about my temporal lobe epilepsy...i dont have the typical passing out seizures, or the kind where you lose your functions, or the staring off into space seizure or grand mal either....what i experience is like my mind is checking out for a few seconds. (I am still there....but not there....feels like i am a million miles away..hard to explain...its like everything is so surreal, like im in a dream, but i can function and think and talk. and i have memory of everything thats going on at the time,) Like i said..i can still function when that happens, and i dont ever pass out. Its just a very strange feeling.
But when the "spell" happens and i come back, so to speak.. it startles me for a second, cuz its like a major reality jolt.
I have those experiences quite often, and can still function, and people around me dont seem to notice anything...i have carried on conversations, and even DROVE while this happened...(it comes on sudden and without warning).. but i have learned to adjust and the "spell" lasts for maybe 2 minutes or so. But the whole time its going on im fully functional....but like in a dream. Make sense?
 
Any ideas on what of type seizure this is?
And also is the loud gunshot sound  i hear in my head when im sleeping all part of having temporal lobe epilepsy?
 
Sorry...im new to all this and my Dr isnt much help..when i explained it all to him, he looked at me like i was nuts. (which is the reason i am getting a new Dr in August when my insurance allows it.)
 
Any help with my questions would be GREATLY appreciated.
Thank you. :)
 
 
(Sorry this post is so long.)
 

RanMan
Veteran Member


Date Joined Feb 2003
Total Posts : 665
   Posted 6/11/2009 10:34 AM (GMT -7)   

AutumnBreeze,

Re Sleep Apnia, I just want to add this cmment from an earlier post on another epilepsy site:

 

It has been proven that lack of REM sleep does affect seizures and other health disorders.

I have been dx'd with Chronic Obstructive Sleep Apnia.
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.

Re: Temporal Lobe Epilepsy:

I'm aware of what's going non around me but I can't respond.
(I can type though-but very slow)  OR

If I'm reading, all the letters become garbled and nothing makes any sense, although I am aware of what's going on around me ~ I can't respond. My Neurologist calls this a "speech arrest". My Neurologist says that's because the meds are doing their job, otherwise I'd have a full blown gran mal seizure.

This happens about a couple of times a week and lasts about 1 or 2 mins.  Then I'm in the "post-ictal" state for about 5 mins. after as I start to return to normal. I always have a wicked headache after.

I went out for breakfast with my family like I do every Sunday (nothing out of the ordinary) and when I got home I noticed that everything was (is) moving in slow motion and I feel light headed but what's really weird ~ I'm also having an outer body experience. It feels like I'm outside looking in at myself. I feel a headache comming.

My first granmal seizure was in 1979, then nothing 'til 2002, 2004 with lots of petit mals in between.

Randy




 


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


nikki1182
New Member


Date Joined Jun 2009
Total Posts : 3
   Posted 6/24/2009 11:44 PM (GMT -7)   
Hi a.breeze,

TO QUOTE YOU:
what i experience is like my mind is checking out for a few seconds. (I am still there....but not there....feels like i am a million miles away..hard to explain...its like everything is so surreal, like im in a dream, but i can function and think and talk. and i have memory of everything thats going on at the time,) Like i said..i can still function when that happens, and i dont ever pass out. Its just a very strange feeling.
But when the "spell" happens and i come back, so to speak.. it startles me for a second, cuz its like a major reality jolt.

WOW!!! I MAY HAVE THE SAME THING!!! I also get this really messed up feeling that is sooooo hard to explain, my friends have thought I was crazy too! I stopped explaining it. Its SO HARD to explain that I cant tell if what you and I have experienced is actually the same but when i was reading your story it hit home. for me randomly (i cant be doing whatever, driving as well) and all of a sudden i will feel "checked out" and a little story plays in my head, its the same story everytime and i cant remember it afterwords, even now i couldnt describe it. I can still hear my surroundings and react to them but its easier to phase everything out until this "story/feeling" goes away (aprox 10-45seconds)

anyways this is getting long but lets talk more about it! i have never known anyone to get this same "feeling" and i do sounds crazy when i talk about it.

-n

AutumnBreeze
New Member


Date Joined Jun 2009
Total Posts : 2
   Posted 8/4/2009 9:55 AM (GMT -7)   
hi everyone..im sorry its taken so long to respond back.

Our computer went down, and we just got it up and running again..finally.(Talk about computer withdrawals..lol.)

But i wanted to thank you both for your replies.

My "spells" are still happening, but i am fully functional when they happen, and i just feel like i am a million miles away and its hard to concentrate sometimes, but i am fully fuctional for the most part, and the spells dont cause me to get headaches.
Like i said...its weird..lol.

My DR gave me a referral to go to another neorologist...so more tests...fun fun..lol...I am already seeing a gyno oncologist, and a hemotologist for other seperate issues as well..yeah im a mess..lol.

But to answer your question nikki1182:
The experiences you describe sound similiar, but i dont play a story in my head...i just check out..so to speak..the only way i can describe what happens to me is that the lights are on...but nobodys home..lol.
I have just learned to deal with them as they happen...its just the jolt back that bothers me the most.
Does that make sense? lol

And that bang i hear at night sometimes drives me nuts...its very annoying to say the least, and i have found that when i sleep on my stomach,and on a flat pillow with my head tucked down toward my chest, the bang doesnt happen..my DR referred me to another neorologist last week, so hopefully i can get some answers from them. :)
 


Getting Old
New Member


Date Joined Aug 2009
Total Posts : 4
   Posted 8/15/2009 7:46 PM (GMT -7)   

hi breeze-nikki-rn man.

i've had the same petit mal seizures all my life.  sometimes 4 or 5 a day. like nikki, mine have a plot, very hard to explain. i can function but i'm in another world. some petit mal seizures turned grand mal.

today,  i have a great doctor who has kept my seizures under control, grand mal (500mg dilantin) & petit mal (300mg gabapentin)  controlling dilantin has become a problem (side effects) but it's worth the trouble.

keep the faith guys.
 
getting older
 
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