I’m wondering if anyone has experienced anything like this, or knows anything about it:

I first consulted my sleep doctor about a year ago because I was finding it impossible to keep my eyes open behind the wheel. I drove about 40 minutes to/from work and had to resort to a number of different methods for keeping myself awake, including eating, driving with the windows down in 40 degree weather, slapping myself, etc. and still had to pull over at times to sleep. But I wouldn’t sleep for ten minutes and be good to go. On one drive home, I pulled over at about 5 and woke up at 6:30 when my husband called looking for me. I was disoriented and about as alert as I would have been if he’d called me in the middle of the night (so, not very).

I was scheduled for a sleep study- overnight, followed by MLT the next day. After the first nap, though, the tech came in and said that I had such severe OSA that the doc said there was no need to continue with the MLT- that he had a diagnosis.

I started the cpap and have (and continue to) used it every single night from the time I’m ready to fall asleep until the time I wake in the morning.

Driving issues are no better at all. When I saw my doc about this, he said that I’ve been sleeping approx 7 hours a night and that the OSA is completely corrected, so he feels that this is not the cause of my symptoms. He asked me about some symptoms of narcolepsy (I won’t go into detail because I’m sure you’ve all been there) and then said that he felt confident that this was the problem.

But, I’m beginning to wonder if that could really be the case. Today, I had NOTHING to do at work and basically sat in a chair all day. I feel like this would be a sure trigger for a narcoleptic, but I was fine. Until the drive home, when I couldn’t keep my eyes open.

Does anyone have symptoms that are so specifically situational like this?

I’m sorry to hear about all you’re going through. I have definitely been there…and yes, my symptoms too were pretty specific to situations at times as well. I could go for 2-3 weeks and not have too many symptoms other than behind the wheel, I could also at times go for a couple of weeks and not have many symptoms at all. And then they would all hit at once. I have been known to get into the car feeling fine and get 2 minutes down the road and have to pull over for a nap (and I even had my 15 yr old daughter in the car to keep me talking). I guess my point is that this disease is crazy & unpredictable and often times a little different for each person. Get in for another sleep study as soon as you can so you don’t end up killing yourself or someone else while behind the wheel. It’s very difficult to admit to yourself that you shouldn’t be driving. I’m a very independent person and have finally realized that I cannot drive for more than 10 mins or its dangerous. Thank God I have an understanding family and my daughter is now 16 & driving. If you know that something isn’t right (and we all know our bodies better than anyone) then get yourself to the doctor. And stay safe!!

I would have this problem going to work on first shift and I had a thirty minute drive. I thought it was strange because I had only been up for an hour. I ended up switching to third shift so I could talk to someone on the phone using the sync in my car. On the way home I would experience a lot of automatic behavior (not remembering most of the drive home). Luckily you are being responsible about it and trying to be as safe as possible.

Thank you both so much for taking the time to read and provide such thoughtful replies. It really does help to know that I’m not alone or just crazy! I really appreciate you both!

Hello and Welcome,

Our search for eternal understanding and truth regarding our narcolepsy. First it's great that you are using the CPAP and compliant. I've been on it for 5 or so years now ,100% compliant. When I first got the CPAP I was told "you will feel wonderful! Well that didn't happen because I was then diagnosed with narcolepsy. But I know it is stopping OSA and that is good.

It's very hard and changes at times to figure out how and when narcolepsy will strike us. It's a constant search at least for me. Mine changes from time to time. When it is predictable Rejoice and enjoy the moment or month it is so. Looking back I thank God when it was predictable. Mine would be like Oh, I better head to and lay down because I'm going to go "out". Then at other times insomnia and unpredictable patterns of sleep. How crazy a narcoleptic ---> with insomnia -LOL But the major thing to learn is to accept, love and be kind to yourself as you are. The sooner I embrace my "reality" with loving acceptance the easier it is for me. I realized that "I'm special" and don't have to be like everyone else. There is only one of me and that is a good thing to adjust to. It's a lot easier one you look on the "bright side" and just make the adjustments you need.

Please be careful driving and it's great that you pull over and rest :-)

All the best and I hope this helps :-)


LOL----- "CRAP" for CPAP----LOL! That a good one, first laugh of the day. Thanks!


nate657 said:

Hey, a 16 year old narcoleptic here. I cannot even go try to get my driver's license without passing a MSLT also known as multi sleep latency test. After my first crack at the test (which lasts 7 hours in total might I add) I ended up failing, and this was while on my medication which was one concerta, one effexor, and two modafonil in the morning and two more modafonil at noon. Also, it seems for me atleast that I only seem to fall asleep if my brain isn't really being challenged or having to work. It sort of says "Welp I'm not needed anymore" and buggers off. For example, watching a move, my brain isn't doing anything but just passively taking in the movie, so I end up falling asleep. But if I am doing school work I can usually stay awake unless it's just that time of day. Also, the first time I saw the CPAP thing in my sleep doctor's office in Renfrew I thought it said CRAP at first glance. XD

You’ll feel better when you make a safe (and pleasant) plan. Before diagnosis it was 5 min. before my arm would become lax on the wheel and twitch back to attention. I took stimulants already for ADD. Now I make sure the methylphenidate is in my system before driving. I carry a few 10 mg tablets in the glove box (child-safe cap marked with skull and crossbones) for emergencies. Meds and driving are carefully timed now.I was stopped for a “courtesy” stop where police checked for proof of insurance. The med bottle was okay because the prescription label matched my license. I carry my little camping pillow and blanket for rest stops. I don’t know the legal stuff but your doc might. Safety first; you’re not alone!