5 replies to this topic

[keean]

Whenever I go to the doctor, take drugs, fall asleep in public or when talking to someone, get angry and feel weak, get hurt because I'm trying to do something then fall asleep, feel too tired to work or socialize etc I feel like I've failed again. I feel like I could control all this without doctors or drugs if I had more strength of character, was a better person.

A lot of times I just don't even believe narcolepsy is a real disorder, I must have some psychological problem that could be fixed if I just stopped being so stupid and crazy. I ask myself what do sleep studies mean? Maybe they mean nothing at all. Do doctors really know why we humans even need to sleep? No, so how are they going to say something is disordered sleep?

The sleep apnea I can understand because that has a simple, straightforward explanation. But this other stuff...it could just be in the mind and, if so, that makes me a mental failure. This belief is compounded by the fact that the drugs I've tried are not 100% effective and have a lot of intolerable side effects. In fact, I think the stimulants actually make cataplexy worse, how is that possible?

So this is the inner workings of my mind on the subject of narcolepsy and cataplexy. I still feel and think this way even though the doctor has told me otherwise. Speaking of him, he makes me nervous when I see him because he has an uncanny ability to know how I'm feeling and what I'm thinking. I go to great lengths (irl) to hide how I feel, especially depression, but he seems to see right through it, it's so weird, I've never met anyone like that.

But it doesn't really matter what he (or anyone) says about it, you could tell me over and over that I'm not a failure and I'm not crazy, but there is always a part of me that doesn't believe it, that will say you're wrong because you aren't me. I don't know how to stop feeling this way and be less hard on myself. What do you suggest? Do any of you secretly feel this way in some back corners of your mind?

[kiragrace]

We've probably ALL felt this way at one time or another. I know I do. Not so much now, but its still there, a little itch in the back of my mind. It's probably a "normal" feeling for us, because some of us have been accused as being a failure by someone and also because narcolepsy just isn't that well understood, especially by others and still by doctors.

Just know that feeling some of this is normal. The difference is that you can't dwell on it - you can't let it overcome you. Its probably part of what I said above (not being like "normal" people) and a normal human urge to be able to be in control of yourself.

I guess my only advice right now would be to acknowledge these feelings (as you have just done), but then just keep it as little as possible in your head. Don't let it become your MAIN thought......keep it as the little tiny itch in the back of your mind. So it doesn't overwhelm you....keeping it as small as possible in my mind helps me to move forward, think of more positive things, realize that NO ONE can know or control EVERYTHING, but still wanting to have a little piece of me that can believe that I can keeps me motivated to keep trying to better myself.

Not sure if this makes sense. Just saying that if you can keep these feelings from overwhelming your entire being, it could be turned into not such a negative thought pattern, but kept as a little kick to keep you trying, instead of a big kick that keeps you down.

[TiredAgain]

I question whether I have it all the time, but not for the same reasons as you. I question it because when I read what other people with N go through I think I must just be lazy. I am tired all of the time but I don't always fall asleep even when I have the chance to. After I have read so many post about how people with N can't get through there day a work without falling asleep or they have to take naps and I think I must just be lazy. I can make it through work, yes I have times that my eyes are rolling but I have never fallen asleep, I can go through the day without taking a nap, and I can lay down because I'm really tired and not fall asleep. My Dr. pushed me to get tested because I was falling asleep on my way to work in the morning and once I hit a car, but that was because the traffic was bumper to bumper so I fell asleep,and the excessive tiredness and also falling asleep on the way home (which a lot of people do). Sleep Apena test came back normal twice.

So I have been down on myself a lot, because even though my MLST showed I had it I still don't always believe it. My thoughts on the test are I was woken up and stayed in a room all day of course I am going to fall right to sleep. I went into REM 4 out of 5 times all in less then 3 mins one was a half a minute and latence was less then 3 mins. Now I know that sounds bad but I don't usually fall asleep that quick, everyone has days that they are super tired and can fall right to sleep and start dreaming. I don't have cataplexy, I do go through stages of very vivid dreams (but everyone talks about their vivid dreams).

So like yourself I feel I need to be stronger and I need to stop being so lazy, I take Adderal. But your symptoms are very much the normal for Narcolepsy so give your self a break!!

[Asleeper]

Sure, there are times that I have wondered how real my narcolepsy is but then there are a couple of things I remember............

I have talked to many normal people without narcolepsy and have found out that many most people never fall asleep during the day. They don't take naps because they would just lie there and stare at the ceiling and never fall asleep. This came as a surprise to me, I thought everybody went off and napped during the day. Then there are classes. Sure there are always a few students that sometimes nod off, but it turns out that most students are awake for the full hour! (whom would have thought) There are people who go the other people's houses to visit and don't fall asleep during the whole visit.
When I think about the severity of my narcolepsy I also tend to forget that I am medicated all day and live a fairly normal life. If I were to not take the drugs then I would see what my narcolepsy is really like. I would start falling asleep in all sorts of public places again. Several times a day. There would be no doubting the narcolepsy is really there.

As we say in my family "Better living through chemistry"

Asleeper

[keean]

Thank you for your post! I didn't "pass" the MSLT, myself, so that is one reason I question it. It's quite obvious to me I have cataplexy, but you can't test for that to prove it. And I quite obviously have daytime tiredness, but is it really narcolepsy or just in my mind? I liked your post because you said the narcolepsy was obvious on your MSLT but that you still manage to push yourself through during the day and not fall asleep.

I too am not sure whether I actually fall asleep all that fast or even at all. I have so many moments during the day where I become overwhelmed with the desire to close my eyes, you know, just for a second, and next thing I know I *feel like* I'm falling into sleep, but I don't know whether I actually am falling into sleep because it usually lasts only a few seconds before I'm able to snap out of it. I think sometimes I'm not even aware this is happening because I just end up missing small chunks of time rather than being aware of falling asleep.

Of course this has made driving, biking, climbing on ladders, working around machinery etc very dangerous for me. Last I drove the car this happened twice and I had close calls for crashing, so I quit driving. Yet on the MSLT I didn't fall asleep like someone with narcolepsy should, I just had those short sleeps that are more typical of my daily experience. Sometimes I do feel so overwhelmingly sleepy that I have to sit or lay down, but it still takes me more than 10 minutes to actually go into sleep for any length of time. It feels like I'm moving in and out of sleep over and over until finally I stay in sleep.

Well I guess whether you call it narcolepsy or something else, it does *seem* to be involuntary, it really is just so overwhelming when it happens

I question whether I have it all the time, but not for the same reasons as you. I question it because when I read what other people with N go through I think I must just be lazy. I am tired all of the time but I don't always fall asleep even when I have the chance to. After I have read so many post about how people with N can't get through there day a work without falling asleep or they have to take naps and I think I must just be lazy. I can make it through work, yes I have times that my eyes are rolling but I have never fallen asleep, I can go through the day without taking a nap, and I can lay down because I'm really tired and not fall asleep. My Dr. pushed me to get tested because I was falling asleep on my way to work in the morning and once I hit a car, but that was because the traffic was bumper to bumper so I fell asleep,and the excessive tiredness and also falling asleep on the way home (which a lot of people do). Sleep Apena test came back normal twice.

So I have been down on myself a lot, because even though my MLST showed I had it I still don't always believe it. My thoughts on the test are I was woken up and stayed in a room all day of course I am going to fall right to sleep. I went into REM 4 out of 5 times all in less then 3 mins one was a half a minute and latence was less then 3 mins. Now I know that sounds bad but I don't usually fall asleep that quick, everyone has days that they are super tired and can fall right to sleep and start dreaming. I don't have cataplexy, I do go through stages of very vivid dreams (but everyone talks about their vivid dreams).

So like yourself I feel I need to be stronger and I need to stop being so lazy, I take Adderal. But your symptoms are very much the normal for Narcolepsy so give your self a break!!

[sueno]

I also struggle with questions like that from time to time. Who really wants to have a problem. The thing that gets me is that this is just not normal any way I look at it and I live it every day so do understand how very real it is. I thought it was normal because it has been "my" normal for so long, but it is not the normal for the majority of the population. Not normal to be so sleepy all the time, no one I know struggles with sleep to this severity, struggles with sleep issues and derivatives thereof like I do, that should have been my first clue years ago, but those thoughts persisted so I kept "trying" to stay awake and do all these things I see other do effortlessly and I kept failing.
When it comes right down to it: something is really wrong. And many times it is downright disabling despite fighting and pushing through. I have been living with it for years upon years, if I could snap out of it, I most certainly would and would run with it, for that is in my best interest and way more fun. Who would choose to live like this while life passes them by when they so desperately want to jump in the middle of it and just be normal too?