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Voices In (And Out Of) My Head – Guest Post by Gary Berenbroick

Gary Berenbroick - Sleepyhead

Gary Berenbroick - Sleepyhead

Today we have a guest post from Gary Berenbroick.  Gary and I have bonded over Tourette’s and narcolepsy jokes.  And bending things.  And having our disorders mentioned in Deuce Bigalow.  But anyways, here’s the post.  Enjoy!

Vanna White isn’t on the Price is Right

I was sitting in class at Villanova University. As usual, I was starting to nod off. After realizing that I had been sleeping I looked up at my teacher. She was asking a question to the class. The guy to my left raised his hand to answer. When I glanced over to him as he started talking I was taken aback.

The guy talking looked like my twin sister but didn’t sound like her. Confused, I turned to my teacher to she if she had noticed anything strange. She was now responding to my neighbor’s answer. This is when it really got weird. My teacher now looked like my father but as with my twin sister/neighbor, sounded nothing like him.

He still sounded like my teacher or at least I thought. I was really getting confused. I heard my teacher’s voice calling my name. My body jerked a bit and when I refocused on my teacher she had morphed into Bob Barker and Vanna White was behind him/her writing notes on the blackboard.

I heard my name again, it was my teacher; she was now asking me a question. My body jerked and twisted again as I finally woke up completely. Everything seemed to be normal. My father and sister were back in New Jersey and woman sounded like woman and men like men. I thought about how weird that just was until I realized that my teacher and my class were waiting for my answer.

I got it right even though I was sleeping when she asked it to me.

This doesn’t happen to you?

Over and over again this had happened to me from as early as grammar school into my professional career. I used to describe it as half-asleep and never thought it was unusual. I figured it happened to everyone who was really tired and for some reason I was always really tired.

A hypnowhatwhat?

Doctors have a different term for it. They call is a hypnopompic hallucination. I like half-asleep better because it sounds less crazy. A hypnopompic hallucination is a vivid dream that occurs upon awakening and can be accompanied with sleep paralysis. Along with excessive daytime sleepiness and cataplexy (temporary loss of muscle tone) these are symptoms of narcolepsy.

What is my destiny Queen of the Pool?

Two weeks ago my wife and I went to the mountains for the weekend. We stayed in a one-room cabin with electricity but no plumbing. After taking a dip in the pool I sat on the edge soaking my feet. My wife was sleeping on a pool chair behind me (she doesn’t have narcolepsy, she’s pregnant).

I started to fall asleep when a woman who was standing in front of me told me to get away from the pool before I drowned.  I woke up as I was standing up. I was alone except for my sleeping wife. It was impossible for a woman to be standing in front of me because she’d be in the middle of the pool. This is called a hypnagogic hallucination.

These happen as I’m falling asleep. Sometimes I can’t tell which is which and it really doesn’t matter to me. What it comes down to it that I see and hear some crazy stuff when I’m not really sleeping. Usually I am pretty aware of my surroundings. They are just altered with guest appearances by people who aren’t really there.

Don’t bury me … I’m not dead.

The hallucinations are the only fun part of narcolepsy, at least most of the time. Sleep Paralysis is really annoying both for me and for those waiting for me to wake up. I am awake but I can’t move. I know exactly what is going on, sometimes I can speak and sometimes I can’t. Theses periods last from seconds up to a half hour.

Sometimes I lay down for a twenty-minute nap and I can’t get up for over an hour. My wife was kind enough to record one of the episodes for you to see. I had no idea she was recording the video below.  It was after I’d been asleep for an hour and a half. I was completely aware of what she was doing.


I knew she was shaking me but couldn’t do anything about it. When I finally started moving again at the end of the video you can see that I look at my phone to see what time it is and then immediately fall back asleep.

Am I lazy, stupid, broken or all three?

I was diagnosed with narcolepsy earlier this year. My journey towards that diagnosis is chronicled in my blog. Before that I didn’t know what was wrong with me. I couldn’t understand why I was always so tired even when there really wasn’t any cause for it. It was nice to find out that this wasn’t in my imagination and I wasn’t just lazy. It’s odd; narcolepsy has been responsible for many positive changes in my lifestyle over the last ten years. I kept eliminating and adding things in the hopes that I would feel better.

About the author: Gary Berenbroick is a Level II RKC certified kettlebell instructor. He works with people of all ages and athletic abilities in Suburban Philadelphia. His blog Kettlebells4u chronicles his adventures with narcolepsy, recovery from a mishap with electric hedge clippers and trying to be as strong as his little body and sleepy brain will let him. He believes and has shown that anyone can start strength training.

Comments on this entry are closed.

  • Casey September 15, 2009, 7:11 am

    Wow, that’s got to be disconcerting. Do you ever fall asleep while training, driving or in other potentially dangerous situations?

    I have experienced sleep paralysis before, but always at alone in my bed. It was spooky, but not serious.

  • Casey (no, the OTHER Casey) September 15, 2009, 7:21 am

    So how often do these hallucinations occur? is there ever any pattern to them?

    Is this something your work is sensitive to?

  • Casey Brazeal (North and Clark) September 15, 2009, 8:04 am

    Sorry about that Casey. I am not on my computer and the auto complete didn’t kick in.

  • Stephanie Smith September 15, 2009, 8:39 am

    As someone with a nursing degree, I never realized what this was like. I can only imagine it is a challenge for you and your wife. it is wonderful to note that you have a positive attitude about it- often that is half the battle -the attitude you have towards whatever medical problem you have and how you can live a quality life within the parameters of your ability. i appreciate your willingness to share something so personal with all of us readers. I believe knowledge is power, so I am always wanting to learn about new things and now I have a resource to give someone if they exhibit the symptoms you described.

  • Casey September 15, 2009, 8:45 am

    Ha ha, no worries man.

    It just made for one of those sit up, blink and stare at my computer screen moments this morning. I gazed at the comment for a minute while my sleep adled brain tried feverishly to rember posting today!

  • Gary Berenbroick September 15, 2009, 4:08 pm

    Casey,

    I used to fall asleep at stop signs and sometimes driving. I take medication now and nap before driving if I feel tired. That hasn’t happened in a while now.

    Other Casey,

    The hallucinations happen as I’m falling asleep or waking up but not all of the time. Nobody else knows what’s going on so they’re not that intrusive. Most of the time I just wake up confused. There’s no patern.

    I’m a personal trainer so there are gaps in my schedule. We have a mat room for jiu jitsu in the back so I grab my gymboss timer and take a nap back there. Usually 15 minutes works well. Everyone tolerates it pretty well. It gets hard for my wife.

    Stephanie,

    When I posted this video I saw other videos of people during episodes of sleep paralysis. I have trouble believing it even though I know exactly what is going on in their heads. I read what I wrote and think it’s ridiculous but it happens. Thank you for your kind words. When I was finally diagnosed with narcolepsy, reading stories about other people with it really helped me. I have no choice but to be open about it.

    It is frustrating but this is how it’s been for as long as I can remember. This is my life. The medication does help and we are still working out the dosage so it may get better. Compared to the problems of others this is nothing.

    It’s a little after 6:00 pm right now and I’m going to take a nap.

    Gary

  • Josh Hanagarne September 15, 2009, 4:13 pm

    Gary, what does the medication actually do for you?

  • Gary Berenbroick September 15, 2009, 5:34 pm

    Josh,

    The medication is Provigil. It doesn’t really give me energy but it makes me less tired during the day. It’s hard to explain. When I don’t take it I feel really tired, when I do take it I just feel tired.

    Gulf War fighter pilots took these to keep alert on their flights without getting jittery. It seems like a miracle drug. I’m waiting to find out the horrible side effects. Hopefully I get brain powers like the people in Scanners. That would be sweet.

    The nap went well, it was only a half hour.

    Gary

  • Julie September 16, 2009, 1:10 pm

    My Ex Boyfriend had sleep paralysis, not sure if he had anything else, he was never tested or anything. But he described to me what happened to him, and I said “Oh! That’s sleep paralysis!” and he started crying because all this time he thought he was crazy.

    Anyway, he said that once he knew what he had, it stopped happening after about a year or two. At least the scary parts did (he’d have terrifying “cant move but being attacked by aliens/monsters/devil/etc” dreams during the episodes).

    Over the years I tuned in to his sleep sounds and my subconcious would wake me up when his breathing pattern changed. That was my cue to jolt him awake, because the aliens were attacking him. 😉

    He also had a total “shutoff” switch when he drank. He’d pass out standing up, just fall dead on the floor and be out for hours like that. I have to think it was related. It once happened at a stop sign and he got a DUI, even though he’d not been drinking heavily, but he was passed out at the wheel so, any cop would give that ticket.

    It’s a wild syndrome, I’m glad you figured out you weren’t crazy… lots of people out there dont know it’s a condition and still think they are nuts!

    ~Julie

  • Karen September 19, 2009, 3:04 pm

    Hey Gary,

    This is such an incredibly interesting post! I wanted it not to stop, and I guess that means I have to jump over to your blog now and subscribe. I’ve never known anyone with narcolepsy, and only have limited information about it from the odd tv show or movie. Your insights on your personal experience with it was really eye opening!
    🙂
    Karen

    • Josh Hanagarne September 19, 2009, 3:07 pm

      Karen, glad it opened someone’s eyes. It closed Gary’s:) I only say that because Gary and me and down like that. Right Gary?

  • Gary Berenbroick September 19, 2009, 5:54 pm

    Sorry Josh, I was sleeping. We’re still cool. I think you may have won the contest before we got to announce it.

    Karen,

    You probably do know someone with narcolepsy, they just don’t know they have it.

    I’m glad you got something out of it and enjoyed it. My blog has my thoughts on kettlebell training, breaking things, narcolepsy, barefoot running and power tool safety.

  • Beth L. Gainer September 22, 2009, 1:54 pm

    Thank you for a wonderful, honest post, Gary. I wonder how many people with narcolepsy are misdiagnosed. I really appreciate your taking us into your world to give us an idea of what narcolepsy is like.