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Patty123

Falling Out Of Bed at Night--Nocturnal Seizure?

Hi. I am new to this site. I have left temporal lobe epilepsy. I first recall having symptoms as a child in which I would be in my house but suddenly everything would seem unfamilar. I would look around at my family but couldn't explain my experience. I've also had episodes in which I wake up and am confused. I am aware of what I am saying but it doesn't make any sense at all. One episode stands out--I woke up, walked to the kitchen door and looked up at the sky and said, "I wish they would stop that." My father and brother laughed, and asked what I was talking about. I had no idea myself. I was aware of not making sense, but no idea why. I was awake, sort of. 

As a child, teachers and others complained that I day dreamed too much. I always knew I had these strange experiences but didn't know how to explain them, or if they were normal.

Another time, I remember having that same spacey feeling and looking at our Christmas tree. The lights and colors seemed more vibrant than usual and I had that same feeling of being in unfamilar surroundings. But the vibrancy of lights had me transfixed. It's like I was in another place and time. No idea where, though.

 I wasn't diagnosed with epilepsy though. In 1993, while in college I had blank out spells. Friends would tell me things and I'd insist that we never discussed it. I was seeing a neurologist at the time for the sleep disorder restless legs syndrome and a pituitary tumor and described my symptoms. He sent me for a sleep deprived EEG which showed a problem in the temporal lobe. He prescribed Tegretol, which helped with my legs as well. I remember the hyperventilation part of the EEG--my hands went numb and I was fascinated by it, holding my hands up in front of my face, as if I could spend an eternity studying this sensation. The technician reassured me that I was alright. I seemed to fade out for a time.

Early this year my leg symptoms worsened and I started to have more spacey spells, and black outs. I was also falling a lot. I saw another neurologist. He did an EEG which showed a problem in the left posterior temporal lobe. It also showed diffuse slowing in the right frontal lobe, which could be caused by a metabolic disoder, but I question why a metabolic disorder would cause problems in only one particular lobe. I fell asleep during the EEG and at one point was dreaming, or at least thought I was. I remember waking up and looking around, not knowing where I was for a bit.

 I am now taking Lamictal 200 mg/day and tapering off Tegretol. The past couple of months I have had episodes of falling out of bed. The first time, I was fully awake, then blanked out and was on the floor. I bashed my forehead and eye on the TV stand as I fell.  The  second time, last week, I was alseep. I recall dreaming and then all of a sudden waking up on the floor in intense pain. The bridge of my nose hit something in the bedroom. The doctor can't tell if these are seizures or not. All I know is that twice this year I've been injured falling out of bed.

 

Has anyone had experienced symptoms of falling out of bed like this for no reason? Could I be more prone to nocturnal seizures since I already have a sleep disorder, RLS? I thought these epiosdes could be grand mals, but I am not sure. There isn't any soiling of the bed or anything. All I know is that my nose is still might sore after my fall last week. I feel extremely beat up emotionally and physically. Also, while I was told about the problem in the temporal lobe in 1993, nobody used the word epilepsy, just a little something wrong on the EEG. Now I have a diagnosis, which should be a big deal but it is.

Part of me finds it fascinating and unique, blessed in a way, to have a disease that causes these unique episodes of utter fascination and surreal experiences. It sounds odd, but that's how I feel. The other part of me hates the idea that there is something wrong with my brain. I haven't been able to use the word epilepsy too much, but I am getting used to it.

But my primary question for posting this is to ask if anyone has had nocturnal seizures and what they've been like .

 

I'd appreciate any input you have on this--could I be having nocturnal seizures? Is it possible to have a TLE seizure and fall out of bed?

 

 

Comments

Re: Falling Out Of Bed at Night--Nocturnal Seizure?

Patty,

Reading your story, I thought I'm reading my own life story. We have a lot in common.

Yes, you are abosolutly right. This nightmare, Epilepsy, has a lot of weird episodes that are just too hard to fathom, understand, explain or describe.

In the last 10 years since I came up with Grand mal seziures, I fall down from my bed so many times, I lost count of it. 

In some cases, I fell face-down on public streets, rubbing my face against the street-side-walks, making my face look like a zombie for weeks. (For more information, look at my Videos & pictures posted www.myspace.com/myseizures)

Even when I'm NOT having a full blown grand mal seziures, there are times that I can NOT explain as to WHEN, WHY & HOW episodes & events took places, I get frustrated to find out & explain.

On many occassion, I'm so "OUT OF IT", as my Brother would puts it, I "LEARNED" to simply live with it, instead of DESPERATLY trying to find out what's going on & explain it.

Notewithstanding the side effects of the 600mg of Dilantin/day I've been taking for the last 5yrs, there are times, I wonder if my medications are causing some of the "CONFUSION". I guess that's a whole different story.

Patty,

Coming to this site, you will get to hear, read & learn, first-harnd experience from people who have been & still are living in your shoes.

Therefore, I hope, this support & therapy system helps you to learn more, on how to cope with Epilepsy & answers your questions.

Good Luck,

Ghebre,

www.myspace.com/myseizures

 

 

Re: Falling Out Of Bed at Night--Nocturnal Seizure?

Ghebre:

 Thank you so much for responding! I was being to think I was going crazy with all of these sudden falls and waking up on the floor, not knowing what happened. It was extremely bewildering.  was starting to think I was losing my mind. When people would ask, "What happened?" And "how can you fall out of bed without knowing what happened?" One though came to mind--that old movie Lost Weekend.

 I don't drink or anything but the title of the film best describes what I felt like--lost. Being in a state of...I don't know what. Epilepsy took me someplace but wihout my knowledge. Time was literally lost to me. So it is a comfort to hear the stories of other people with epilepsy who have experience these things.

I definitely plan on visitng your myspace page!

 

See you there,

 

Patty

Re: Falling Out Of Bed at Night--Nocturnal Seizure?

Patty,

You are very welcome.

I'm very pleased to help out one of my kind, people going through what I've gone & still am going through.

I figured as I learned on how to cope with this misery from the good people on this forum, it's about I get to share my experience with people having hard time finding answers to questions in their mind, just like I did so many times before.

YES, YOU ARE NOT ALONE IN THIS.

As I found out the hard way & learned more from the good people in this forum, you will learn how to go on with your life, overcoming all odds. Therefore, stay strong & keep asking questions, until you are comfortable enough to live with this menace.

Wishing you all the best.

Ghebre

 

Re: Falling Out Of Bed at Night--Nocturnal Seizure?

The reason that you sometimes find yourself on the floor is that you are most likely having Gran Mal seizures and the twitching and body movement works you out of your bed. As the previos blogger said, I  to  have lived with this for probably  two decades. As I got older the gran mal subsided to petit mal seizures, which were always a prelude to a gran mal seizure if it went that far.

My suggestion to you is that you make sure that your bed is in a cornor and you learn to sleep facing the wall. This will reduce the oppertunity to "find yourself on the floor" and possible injury will be reduced. Bet of luck.

Re: Falling Out Of Bed at Night--Nocturnal Seizure?

Jimm, thank you very much the advice! Putting my bed in a corner and sleeping facing the wall sounds like a great idea.  I will definitely do that. Two falls was more than enough for me.

 

Best you luck to you, too. This site has been a godsend. It's really the only place I feel comfortable discussing anything about epilepsy. My friends and family just don't get it.

I don't feel anywhere near as alone as I did before coming to this site.