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In Denial?


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#1 mia

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Posted 29 August 2012 - 01:20 AM

So I went through the sleep studies. Fell asleep all five naps in 4.5 to 5 minutes and dreamed in less than ten minutes. Everything I've read here though seems so extreme. I am a single mother of three and work full time as an RN. Who wouldn't be exhausted all the time? I have no cataplexy unless you count my very clumsy, dropsy hands at times. I went to the doctor initially because I started to feel like I had Alzheimer's or something. Kept misplacing things, getting lost driving to places I had drove my whole life. She said anxiety. Always known I needed more sleep than other people. People are different though. Always had nightmares that sometimes scare me awake crying or heart racing. Dreams have always been Very vivid. Started falling asleep at stop lights. Briefly dated a guy who took me to the movies and both times I fell asleep. He counted and of the ten movies we tried to watch I fell asleep during eight. Finally I totalled my car. Fell asleep at wheel, ran off road into a gully and turned upside down and hit a tree head on. Had to unstrap my one and three year old children while we hung upside down and climb out of the gully one on each hip and walk the road until I flagged down a car and got help. Went back to doc and said help. Now I have been diagnosed with narcolepsy. But every story I read seems so much different than what I feel. Am I in denial? Honestly? Or could it possibly be a misdiagnosis? Does anyone with N feel like me?

#2 Hank

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Posted 29 August 2012 - 08:22 AM

So I went through the sleep studies. Fell asleep all five naps in 4.5 to 5 minutes and dreamed in less than ten minutes. Everything I've read here though seems so extreme. I am a single mother of three and work full time as an RN. Who wouldn't be exhausted all the time? I have no cataplexy unless you count my very clumsy, dropsy hands at times. I went to the doctor initially because I started to feel like I had Alzheimer's or something. Kept misplacing things, getting lost driving to places I had drove my whole life. She said anxiety. Always known I needed more sleep than other people. People are different though. Always had nightmares that sometimes scare me awake crying or heart racing. Dreams have always been Very vivid. Started falling asleep at stop lights. Briefly dated a guy who took me to the movies and both times I fell asleep. He counted and of the ten movies we tried to watch I fell asleep during eight. Finally I totalled my car. Fell asleep at wheel, ran off road into a gully and turned upside down and hit a tree head on. Had to unstrap my one and three year old children while we hung upside down and climb out of the gully one on each hip and walk the road until I flagged down a car and got help. Went back to doc and said help. Now I have been diagnosed with narcolepsy. But every story I read seems so much different than what I feel. Am I in denial? Honestly? Or could it possibly be a misdiagnosis? Does anyone with N feel like me?


Everyone's story is different because everyone's lives are different. I did not know I was being tested for N until my first or 2 MSLT's. The description seemed abserd, but as I read about peoples experiences, I found so many common threads. I was definite I did not have Cataplexy until I called my cousin and she explained the subtleties. Cataplexy explained the unexplained for me- life threatening falls, clumsiness that caused falls, slurred choppy speech. I denied Cataplexy because I didn't understand what it was. If you had a serious car crash- that is serious enough to find the possible answer. Your test results and experiences sound very similar to mine. I am a husband and involved father of three with a corporate job, clean driving record and I compete in endurance sports. I do more than most of my friends who drink beer, need to loose weight, never exercise and complain about beiing tired out. I could not believe I could have this- then I was terrified I did have this- then I was terrified if I didn't have this- and now I accept it and continue learning how to manage my life with it improved. I would say you have enough evidence pointing to Narcolepsy and Cataplexy to learn more and ask lots of questions. I worked with a Psychologist for 3 months just to discuss all of the information and events I suspected could be attributed to N and C. I learned enough to understand my diagnosis. I found this forum invaluable and I hope it will offer you some help.

#3 mia

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Posted 29 August 2012 - 08:49 AM

Thank you hank. Doc said she didn't think I have captaplexy, but I still N. I guess that's where I run into my denial. I knew I was sleepy and before I had children I took afternoon naps. Now though those are hard to come by so I don't function as well. Other non narcoleptics say the same things. I'm tired all the time too I hear from everyone. Its hard for me to keep the house clean and work too. I am irritable from being sleepy all the time and easily annoyed. I am not the mom I want to be. I don't have the energy to play with kids. I am on medicine and when I take the stimulants I feel better but I worry it makes my heart race and will shorten my life span. A psychologist is a good suggestion! But this may be denial but is it possible to be diagnosed and NOT have N?

#4 Megssosleepy

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Posted 29 August 2012 - 11:21 AM

Everyone does say they are sleepy. But, for most its from staying up watching a movie, drinking late, or being out of shape. We are tired after going to bed early and waking late, and its a different kind of tired. (I think)

I would suggest just reading some peoples stories on here or other sites. Everyone is different but I think most of us were in denial at first, at times I still am. Once you read you will most likely get a better idea if you have N or not. I also think most Doctors would not give this Dx unless they were sure. I fell asleep in less then 54 seconds for all 5 test :blush: and still didn't think I had N.

The better I start to feel with treatment the more I am facing the fact that this indeed is N. Sucks yes, but once I realized that I started taking more steps to improve my situation.

As far as C goes... I did not think I had that either. But, now that I know what it is I can remember many times in my life where I did. I do not fall to the ground (everyone is so so so different)some people just feel a slight tingle or a slack jaw. For me when I am really upset or really angry (not to often) my legs start shaking so bad to the point I have to sit.

I hope some of this helps, good luck and just know you are not alone in this. :)

#5 SleepyRaffie

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Posted 29 August 2012 - 02:21 PM

I had moments when I was in denial about the diagnosis, but it explains all of the unexplained in my life. As others said everyone is different. I thought I was really good at staying awake even when I was so tired I could fall over (I actually denied that I was tired for the most part and claimed I just did not feel well). Now I know about my microsleeps. Wow! They happen ALL THE TIME. I also always thought I was "really good at zoning out". Now I know that "zoning out" does not consist of staring off into space and blanking out the entire world for a significant period of time- that's called "sleeping with my eyes open". It worked great in high school! Also sleeping on the hall floor in high school before first bell- not normal. Probably did not help my social status either.

Anyway, as others have said, take some time and read about what others have experienced. It really helped me. As for the occassionally dropsey hands- it could be C. I definitely have C and I just realized that asking people to open jars for me that I could normally open because "my hands are weak right now" is probably very mild C.

#6 Hank

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Posted 29 August 2012 - 08:39 PM

Thank you hank. Doc said she didn't think I have captaplexy, but I still N. I guess that's where I run into my denial. I knew I was sleepy and before I had children I took afternoon naps. Now though those are hard to come by so I don't function as well. Other non narcoleptics say the same things. I'm tired all the time too I hear from everyone. Its hard for me to keep the house clean and work too. I am irritable from being sleepy all the time and easily annoyed. I am not the mom I want to be. I don't have the energy to play with kids. I am on medicine and when I take the stimulants I feel better but I worry it makes my heart race and will shorten my life span. A psychologist is a good suggestion! But this may be denial but is it possible to be diagnosed and NOT have N?


For me, learning about Cataplexy was a real eye opener. At first, I was convinced I did not have it. My doctor never saw me with Cataplexy and relied on my description of events. The more I learned, the more specific my questions became. Mild Cataplexy was such a normal part of my life that I thought everyone must feel that way- turns out they don't- just me and the other people with Cataplexy. Go figure.

I don't think it sounds like you are in denial. It sounds to me like you are trying to make sense out of what you do not fully understand- I think that is very reasonable. The jury is still out- it's time for deliberating. People who are in denial do not ask the kind of questions you have asked. I would suggest keeping an open mind and be very objective about how it applies to your experience. You either have it or you don't. You are a mother and a nurse- you certainly know how to rise to a challenge.

From what I understand through my experience, N is a pretty straightforward diagnosis. 2 sleep onset REM episodes, with short sleep latency that cannot be attributed to untreated Sleep Apnea, sleep deprivation or medication withdrawal. Sleep Onset REM is impossible to fake, you cannot try to do it or not do it, and there is no mistaking it for something else.

There is also a difference between "sleepy" and "tired" and "fatigued". I was sleepy without being tired. I was sleepy with a lot of energy- definitely not fatigue. Sleepy is my normal- which I thought was normal- but it is not normal all the time.

I have realized that many people are real complainers- they complain about being tired sometimes- not even sleepy, like I am several times every day. They complain about it because it is different from how they otherwise feel. They complain about what many of us struggle with every day without complaining as much. I got so good at not complaining about my sleepiness, which I believed was normal, that I couldn't even recognize the problem. I think that was my denial.

Give yourself a break Mia. You are an intelligent woman with a nursing background. Keep asking question, learn and trust yourself to make a wise decision when you are well informed.

#7 SleepyRaffie

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Posted 30 August 2012 - 10:31 AM

Hank really hit it on the head. Your reply really helped me as well. Thanks!

#8 mia

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Posted 31 August 2012 - 09:55 PM

Thank you all for you replies! It's my birthday so I am going to update my profile and reply to someone else now!