Narcolepsy

[livingwith]

I am a 36 yr old who has been living with this disorder for some time. My father had the same problem but for years we always chalked it up to overwork and just being tired. To overcome this, I thought all I had to do was stay busy. Don’t sit down too long, sing when I drive, keep moving, keep moving. Cause the moment I sit down I get sleepy and have to fight the urge to close my eyes. Staying awake in class was impossible. Now, in trying to earn my degree, it remains a problem. The...Read the full article

[lbrown19]

I am a 37 year old with the exact same problem & have always had the exact same thinking. I always thought I was just tired. I can never watch tv without falling asleep. I have to keep moving which in turn makes me more tired at the same time. I have three young children and have fallen asleep many times without intending to when they are awake. I have been awoken by a small hand slapping me in the face or a loud noise or crying. I have learned to just not sit down. It is embarassing when you fall asleep during a conversation with someone. It is to the point that just sitting down at dinner makes me sleepy. It is very frustrating and I feel bad for my husband. All he ever sees is me sleeping. When he gets home in the evening & wants to relax by watching a movie - I am out before the warnings are over. Then the haluccinations start. I start talking about spiders on the ceiling or some other bizarre thing. We joke about it but it's sad. I have tried cups of strong coffee but still fall right asleep. The only thing that works is being up and about. Exercise helps to give me about extra hour. People tell me I am so lucky to be able to sleep so easily & how they wish they could be like that. Yeah right! I never get to watch movies or tv shows or games (sports). Forget about reading. I have no intimate life in the evening. I embarass my self with these hallucinations.

During the day it is the same thing. If I sit down to watch something on tv or read I fall asleep without knowing it then wake up with an anxiety attack not knowing what is going on. Then I panick thinking I am late picking my kids up from school & scared that something is wrong with the baby. Then I realize he is in his crib sleeping & it's still several hours until I have to pick the kids up. Then I get up & get moving so it doesn't happen again.

When I was in my twenties before having kids I never was home or watched tv and had a pretty normal social life. Until now I blamed this whole thing on the tv! Just this week I started reading up on it on the internet & am sure this is what it is. I am disappointed to find there isn't much you can do about it.

The only suggestion I can give you about studying is to try exercising right before you start. Maybe you could even read while you are on an exercise bike or something similar? Also, I find I am less apt to fall asleep when it is a little cold. If you are in a comfortable setting it is more difficult to fight it off.

If anyone has any helpful suggestions I would appreciate it. I am in a downhill spiral of tiredness and don't know what to do.

[LSI]

You need to go to a sleep disorder doctor and get a diagnosis and medication.I have been diagnosed for about 4 years. I always thought it was because I stayed to busy, but my brother was just as busy without the sleepyness.I used to fall asleep at work every time I would read blueprints. I would put my head down not even knowing it, and sleep untill someone woke me up. I take 800 mg of provigil and 60 mg of dexedrine daily.It is not working real well right now due to building up a tollorence for it, but at first it made me very alert, energetic, and very positive thinking. There is another medication called Zyreme ( I might of spelled it wrong) that is supposed to be the best treatment availible right now. I am fighting with my insurance provider right now,they are not a distributor for it so the will not provide it. It is federally regulated so there is only one company that can distribute it. The street use for it is the date rape drug. I also have these really wierd vivid dreams, but only when my medication is not working correctly.

[amyalys]

This was me before my diagnosis. I thought that I was just tired for years. Everyone said " well you are a wife and mother and you work full time, of course you are tired." So, like you I just tried to stay busy so that I wouldn't shut down. I had my first cataplexy spell and that scared me so bad that I knew something must be wrong with me. I could not wake up, could not move, could not answer my husband when he tried to get me to wake up and talk to him. We thought maybe I was having a stroke. Cat scan of course showed nothing. I started to think that I was losing my mind and maybe it was just all in my head. But I also knew that I couldn't control whatever it was. Luckily after running all kinds of tests my doctor suggested that I may have narcolepsy. I was shocked. I had never even considered this because all I had heard about narcolepsy is that people suddenly fell asleep without any warning. So I started reading online and everything I read was like " that sounds just like me". After seeing a neurologist and then visiting a sleep clinic I was diagnosed with narcolepsy. Provigil worked for a while really well. I had surgery 4 months later just for a tubal ligation. Ever since my surgery it has been downhill. The Provigil no longer worked. I was having mild to severe cataplexy spells on a daily basis. I had to miss a lot of work. I could barely function when I was at work. I felt unalert and in a fog all of the time mentally. I became really scared to drive because I never felt truly aware of everything around me. I eventually lost my job because I could no longer function well enough to be able to take care of my work duties. I have been on Adderall and Prozac for the past 3 months and have seen little if any improvement. I have applied for the Xyrem program but have not heard if I have been approved by my insurance program. My doctor says that this is the only thing left that he can suggest. I am a little scared of the side effects with this drug but have decided that I am tired of feeling bad all of the time. I am just sick and tired of being tired and barely being able to walk or do much of anything. I am trying to be hopeful. If anyone has had similar experiences please reply. No one understands this disorder so I have no one to talk to.