Toph4er

Do you drive?

Do you drive?   113 members have voted

  1. 1. Do you drive?

    • Yes
      88
    • No
      25

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44 posts in this topic

On medication I can drive okay, but not under certain circumstances which I know well and avoid. However, before I was diagnosed and given medication, I should not have been driving but I was anyway. I would fall asleep 20 times on the way to and from work/home. It is truly a MIRACLE that I never got in a wreck.

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I drive short distances mostly, 5 to 10 minutes, and only 20 - 25 miles per hour, it works for me, because I live

on a small island, no freeways--- i have many days when my driving is not affected and i am not drowsy while driving but if necessary, i pull over to a parking lot, stop the car, and take a short

refresher nap.

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Yes, but I shouldn't, but I haven't a choice.

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I don't drive right now, although I am hoping that once I start Xyrem I'll be able to drive again.

I had been having EDS that was uncontrolled by 600mg of Provigil per day for 2 or more months. So, I scheduled appointments with both my endocrinologist for evaluation of my hypothyroid condition, and my sleep doc for evaluation of control of my severe obstructive sleep apnea. The sleep doc shocked me when he said he wanted to evaluate me for narcolepsy. I thought, "Yeah, right."

Then, about 3 weeks ago, I disclosed the fact that I needed to stop driving one day to my employer when I had forgotten to take my Provigil, and my decreased awareness caused me to run a stop sign that I simply did not see. Thanks to the driver coming through the stop sign in the perpendicular direction, there was no accident as she hit the brakes and squealed to a stop as I drove obliviously forward.

My employer would not take me at my word that I was fine to drive when on Provigil, and required me to provide a doctor's note that I was competent to drive. I drove all day as a part of my job. I was absolutely convinced that I was competent to drive as long as I took Provigil. My sleep doc has three offices, and couldn't see me at the closest office for several weeks. Anxious to get that note for my employer, I scheduled the soonest appointment that I could get, and drove 90 minutes to his farthest away office. By myself.

By the time that I got to his office, I was aware that 1) I missed one exit and obliviously drove onward for 15 miles, finally unable to remember if I'd taken the exit, and convincing myself that I had; and 2) I had a microsleep episode after stopping on the way there, in which I had fallen asleep for one or two seconds while preparing to back out of a parking space. I fell asleep with my foot on the brake, and when I woke, my foot had relaxed and my car was rolling very slowly backwards out of the parking space. I began to question my denial.

So the sleep doc told me that I had narcolepsy, and that I absolutely should not be driving at all due to the extreme fatigue seen on my MSLT (fell asleep in less than 2 minutes on all 4 naps, with REM onset occuring within about 60 seconds in all 4 naps). So, there I was, a 90 minute drive from home, with my husband out of state. It took quite a while to figure out how to get both my car and myself home.

My doctor told me that after I've been on Xyrem for awhile, I can take some sort of test to measure whether I've recouped enough alertness and ability to stay awake without micro-sleeps that I am able to drive. Has anyone ever taken this test?

I am terribly grateful that I didn't cause any accidents, or kill myself, or someone in my car that I love, or any of my innocent neighbors out driving on the roads. I truly thought that I was absolutely competent to drive, till I looked at what was going on with the knowledge about what can happen in narcolepsy. So, that's my long story, with a moral of "Let's be careful out there."

Saraiah

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Yes I drive on a daily basis. I do try to keep my vehicle usage to work and back though. Yes at times I have problems and have had problems in the past but over time i have learned to watch for signs along with little tricks to help keep myself alert. Besides is it any worse than the daily commuter that drives to work or home and doesn't remember making the trip? For a long time i thought that to be a narcolepsy thing but over the years have learned that many people have that problem with being such a routine thing they sort of automaticly manage to drive home. Sort of the car knows the way.

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I do drive I actually passed my drivers licence after I was diagnosed with N. So I don't mind driving but I am doing it less and less. One thing I hate is that the transit system is so lame that something that can take me up to an hour can take me 20 minutes with my car :( My car is getting real old (95) in Canada (dreaded winters) So I have to decide if I buy a new car or not because if I don't well... I won't be able to live in the country which is my dream... But up till now I have never experienced trouble driving so I guess I will buy another car but maybe not a new car another used one.

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Hello to all my fellow sleepyheads! How nice to find this website! I am learning quite a bit so far.

So far, I can relate very well to this quote below:

I too drive, but don't feel comfortable driving for more than one hour during the day (and only on a rare occasion). I do NOT drive at night unless I absolutely have to do it. And, I only do it for short (10 miles or less) trips. I think sleepy.erin is right it is case by case often. Knowing our own limits is vital. Also, though, someone this weekend raised the point that some of us when we are too tired to drive likely lack the executive decision making skills to stop at that point.

And I can relate very well to this one too:

--- i have many days when my driving is not affected and i am not drowsy while driving but if necessary, i pull over to a parking lot, stop the car, and take a short refresher nap.

Yes, I do drive - I must. I could not imagine not driving - I need to go to work and I live in the suburbs. However, I need to limit freeway driving and night driving - Either one will have me out like a light in about 20 minutes.

My ethical dilemma: I have not gone for the sleep test or even mentioned N to my primary Dr. or to any Dr. I simply do not want the diagnosis on my record anywhere. I am too afraid that in the event I am involved in an any type accident, even if I was not at fault (as a previous poster told us), that it can come back to haunt me. I am also afraid of potential insurance problems. Based on everything I had been reading over the years, and all I read on this forum in the past week since finding it, it is no doubt I have N, as do/did a couple of fellow female family members (RIP Aunt T.) I am very against taking any meds unless absolutely necessary, and so far I don't think it is.

The main drawback for me is an inability to comfortably get myself to evening events, such as the rock concerts I so love, many of which are 1+hours from home. This is what hurts most. Sometimes I go anyway and stop the car a few times along the highway coming home. Sometimes the cops stop me because I am weaving and they think I have been drinking (No!).

So that's me - middle aged female who has suffered mostly mild symptoms of N for at least 25 years. But lately it's getting a little worse, that's why I started looking around for some help/advice/others like me.

Thanks to all who post here.

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Hello to all my fellow sleepyheads! How nice to find this website! I am learning quite a bit so far.

So far, I can relate very well to this quote below:

And I can relate very well to this one too:

Yes, I do drive - I must. I could not imagine not driving - I need to go to work and I live in the suburbs. However, I need to limit freeway driving and night driving - Either one will have me out like a light in about 20 minutes.

My ethical dilemma: I have not gone for the sleep test or even mentioned N to my primary Dr. or to any Dr. I simply do not want the diagnosis on my record anywhere. I am too afraid that in the event I am involved in an any type accident, even if I was not at fault (as a previous poster told us), that it can come back to haunt me. I am also afraid of potential insurance problems. Based on everything I had been reading over the years, and all I read on this forum in the past week since finding it, it is no doubt I have N, as do/did a couple of fellow female family members (RIP Aunt T.) I am very against taking any meds unless absolutely necessary, and so far I don't think it is.

The main drawback for me is an inability to comfortably get myself to evening events, such as the rock concerts I so love, many of which are 1+hours from home. This is what hurts most. Sometimes I go anyway and stop the car a few times along the highway coming home. Sometimes the cops stop me because I am weaving and they think I have been drinking (No!).

So that's me - middle aged female who has suffered mostly mild symptoms of N for at least 25 years. But lately it's getting a little worse, that's why I started looking around for some help/advice/others like me.

Thanks to all who post here.

Dear IsItNapTimeYet,

I would strongly recommend that you go and see a sleep doctor for testing. I think that if you were to get diagnosed and treated, your chances of being in a car accident would be much lower than now. Based on your description, you sound like you have a very high chance of being in an accident. If that happens, I am sure you would feel terrible. Instead, why not just go for an evaluation and treatment and skip the accident. Pretending you don't have this if you do is very dangerous. My other thought is that many people who think they have N actually have sleep apnea. The symptoms (other than cataplexy) can be quite similar. Apnea is also very treatable. People with sleep apnea are at increased risk of dying from heart attacks, diabetes, and strokes if they don't get treatment. My husband has apnea. I am glad he is participating in treatment. We are both safer now that we have accepted our diagnoses and chosen to engage in active treatment rather than risk ongoing health problems and car accidents. In my state, when you are diagnosed your doc doesn't inform the DMV or your car insurance company. If you choose not to get diagnosed and treated, then I urge you to find alternative transportation. I write this not to lecture you, but to express serious concern for your safety.

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I haven't drive since the end of 1997.

I had an accident on November 5th, 1997....I was driving down the #1 at 120km/h when I 'blinked' and missed the exit/curve in the highway and went straight through the middle instead and flipped the car.

A passerby pulled me out of the car for fear that it would explode, and I spent a long rest of the day strapped down for C-Spine precautions (first in Strathmore and later in Calgary) while doctors mulled over whether there was really something to worry about at C4/C5. They eventually kicked me out to make my own way home.

I drove for a little while afterwards, but only short trips like to doctor or local hospital. But rental car gets expensive. And, I switched back to my walk and use public transportation lifestyle that I had been living pretty much up to December 12, 1996 when I got my first car (at 28).

In April of 1998, I moved to the US. Where I opted to not pursue getting a local driver's license. And, I stick to walking...there was limited public transportation when I lived in Dublin, OH....and none at all now that I live in Manhattan, KS.

Still to this day, if I spend any length of time riding in a vehicle...I'll be hit with the overwhelming urge to sleep, and despite all efforts and stimulants...I usually succumb. On both legs of flying in to Arlington, VA yesterday...I succumbed, even though I took 200mg Provigil....

I sometimes wish I could drive...because its a barrier in exploring the finding a better doctor.

The Dreamer

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Like many here I feel it comes down to a careful look at ones self. I do drive and I have a perfect driving record because I am very aware of my limitations and very careful. Recently however I made the choice to drive much less and I now restrict myself to short trips, drive only in my alert hours and do not drive at night (if possible). I only drive now because my N does not induce immediate sleep or severe cataplexy, mine induces strong sleep urge and fatigue cataplexy (anger induced). Should it get worse I understand the next step is driving will need to go. Although I would be mad at myself if I pushed myself to the point I had an accident which involved damage or hurting myself, I could not live with the thought I might hurt or kill someone else.

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Like many here I feel it comes down to a careful look at ones self. I do drive and I have a perfect driving record because I am very aware of my limitations and very careful. Recently however I made the choice to drive much less and I now restrict myself to short trips, drive only in my alert hours and do not drive at night (if possible). I only drive now because my N does not induce immediate sleep or severe cataplexy, mine induces strong sleep urge and fatigue cataplexy (anger induced). Should it get worse I understand the next step is driving will need to go. Although I would be mad at myself if I pushed myself to the point I had an accident which involved damage or hurting myself, I could not live with the thought I might hurt or kill someone else.

I did the exact same thing. Driving was a concern for me, now I hardly drive at all due to some very close calls. The eye opener for me was a nodd off in a tunnell. I drifted and was alerted by a horn. It probably took less than than a second but about 100 yds further the lane turns and one second asleep there puts me in on coming traffic at a closing speed of at least 120mph. I say closing speed because the only thing you can hit is another car and that really hit a nerve with me. It is a difficult and personal decision to make, but it's imperitive we are honest and impartial in our reasoning. Good luck to you.

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I drive. I know when I can't or shouldn't, then I don't. It annoys my husband some days, when I refuse to drive. I don't care, I know it's not safe.

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I drive. I know when I can't or shouldn't, then I don't. It annoys my husband some days, when I refuse to drive. I don't care, I know it's not safe.

People with N don't understand it and it's easy to let that get to you. I try to remember that just as I want people to be understanding of me, I also need to be aware that this can be just as tough on those around me as it is on us. To bad it's not as easy as it is simple.

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I drive ......b/c I have to. I used to love to drive when I was in my 20's Now I hate to drive, But I drive to and from work,. Always very sleepy. I have fallen asleep at the wheel more than once. And I am sure I have automatic behavior when I drive because sometimes a 30 min drive seems like a 2 min drive and I wonder wow I don't remember driving here.

What states now take your license if you are DX with N

HOW CAN YOU NOT DRIVE.....IF I DON'T DRIVE I DON'T WORK ....IF I DON'T WORK......WELL... I HAVE TO WORK .......WHO ELSE IS GOING TO PAY MY BILLS....DO WE HAVE A CHOICE???

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I've been driving 2.5 hours each way to my boyfriend's house pretty much every weekend for the last 10 years. When my doc asked me if I ever have trouble staying awake when driving I said, "No!" Then I actually paid attention during one of my trips and realized that I have a whole host of coping mechanisms that I don't even notice anymore. I used to have a cigarette or two during the drive, though I almost never smoke now. But I always either start the trip with a large tea or coffee or get one about 45 min. into the trip.  I often have something to eat on the way. I scan the radio and sing along at the top of my lungs. Sometimes I put the window down for a blast of cold air. And I try to drive at times of the day when I know I'm more alert, which for me is later in the afternoon or late in the evening (which is a great way to avoid traffic, too.) 

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Recognizing your limits, knowing your boundaries, constant reflection and observation of self, understanding of the disease, total preparation in advance and/or with complete prior focus, strictly and stubbornly adhering to what makes you (only you can know this, yet many don't know themselves, very well at least) safest, and only when/if necessary accordingly within one's set perimeters (distances, with passenger or with n0 passenger [that is most important for me], night/day early/late, coffee or water, etc..), no road rage, pulling off and napping at any 1st note of tiredness or dreamy-ness, etc...; such is how I roll.

Yet that is compared to 5 years ago, when I drove near daily including occasionally back and forth across the country.

I now only drive maybe, 1 to 3  days a week and typically all combined, for no more than an hour that week, usually.

I'm in the process of setting up a GoPro to use also as a dashcam, which will hopefully have me (somehow, perhaps pointed straight at rear view for reflection of face, plus hands and side/back of head ideally) within the camera frame, as well as a wide frame of, out, the front of car; seems like a good all around safety measure, being as honest as I am it will comfort me somehow if nothing else...

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I drive every day. I live way out in the country, and work and go to school in the city. It's a 45 mile/45 minute-1 hour (depending on traffic) drive each way. Heck, it's 20 miles just to the nearest grocery store!

 

I am, however, extremely careful. I didn't actually start driving until about 9 years ago. Before that, I lived and worked in the city (this was back in Texas), and riding the bus was cheaper than owning a car, so that's what I did. When I first moved out of the city, I moved to a small town and opened my own business--a secondhand book store. Sure couldn't afford a car then, so I rode my bicycle everywhere--between the shop and home, the bank, the grocery store ... If I needed to go further, I got a ride from my mother. But, when the book store didn't make it and I had to go back to work--which was back in the city--I decided to stay living in the country and get my driver's license and a car. I always hated living in the city, because I don't like being around a lot of people, and when you live in an apartment you're constantly surrounded by people--upstairs, downstairs, left and right ... I couldn't make myself go back to that.

 

So, I got my license. It was an even longer commute, back in Texas--closer to 50 miles. I was very cautious, since I'd just gotten my license, and refused to drive if I was tired (long before the Narcolepsy diagnosis). I often pulled over in a rest area about halfway between work and home to take a short nap before I continued. And when one of my co-workers later told me about a time (years before) when he'd been working 2 jobs, not getting enough sleep, and he fell asleep driving and wrecked his car ... that was, to me, my personal vindication for doing what I'd been doing. (He rolled his car, was hurt pretty badly, and ended up in the hospital for a while, but he was lucky that he was the only one in the car and he didn't hit anyone else.)

 

I still don't drive when I'm tired. If I get tired, I pull off the road and either lock the doors and take a nap, or--if I'm somewhere it wouldn't be safe to do that--get out and walk around a bit. And I'll stop as many times as it takes.

 

I even still drive on road trips--by myself or with others. If I'm with someone I trust to drive, we'll switch drivers (and usually stop for gas) every 2 hours or so, so we each get a chance to nap, and we can stay fresh and alert. If I'm by myself, every time I stop for gas, I spend 20-30 minutes walking around at the gas station/truck stop before I go on--and I'll still pull over and sleep in rest areas several times along the way. It makes road trips a lot longer than normal, sure, but I'd rather be alive than on schedule!

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I do drive, but since finding out that my EDS is probably a medical condition, I am starting to rethink this. Initially my SO was very unforgiving about my tiredness when driving, once we were driving home from about an hour away and I told her I needed to pull over and take a nap and she said she was going to take a cab home(a $150 cab ride give or take) and that she couldn't be with someone so lazy! At work we all drive a lot, often seven or more hours in a day on some of the deadliest highways in Canada, but they encourage us to drive in pairs, take breaks if we are tired and nap when necessary... Arriving alive is more important than pushing yourself to be on time... But these sentiments were not echoed at home.

Since I've begun assessment for my condition she has become more supportive and understanding. She also suffers from an anxiety disorder so that was a big part of why it affected her so much, anything unexpected triggered a lot of stress for her. I usually smoke when I drive to stay alert, but I don't do it around her so most of the Times I felt I was pushing my limits she was there freaking out haha. Hopefully a diagnosis will put all of that behind us.

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never have, never will.  I bike or walk, only take the bus to the doctor

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