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Told the DMV I have Narcolepsy...now what?


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Poll: Have you told the DMV you have narcolepsy? (105 member(s) have cast votes)

  1. Yes, I have told the DMV about narcolepsy. (10 votes [9.52%])

    Percentage of vote: 9.52%

  2. No, I have not told the DMV about narcolepsy. (95 votes [90.48%])

    Percentage of vote: 90.48%

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#21 loki

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Posted 12 January 2009 - 07:26 PM

Most of the time I'm scared to drive.

#22 dogdreams

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Posted 12 January 2009 - 10:46 PM

Our whole country is sleepy. I've found that PWN are so much more observant of their daily fatigue that they are better judges of when they can and can't drive safely. So much better that the people that ignore their sleep their whole lives.

I personally haven't had a problem driving because I never drive when I know I can't. I just don't see how that's different from any other kind of situation where people need to use their judgment in driving. I'm sure there are a lot of alcoholics out there who drive drunk much more often than I ever drive sleepy. And since I've found a treatment that keeps me feeling "normal" and alert most of the time, I don't see why I should tell the DMV that if I eat a banana I can't drive. Why bother? It's up to me to be a responsible driver. They're not going to intervene unless I abuse my privilege and really screw it up. But that's not going to happen!

#23 chimbakka

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Posted 13 January 2009 - 10:50 AM

QUOTE (dogdreams @ Jan 12 2009, 07:46 PM) <{POST_SNAPBACK}>
Our whole country is sleepy. I've found that PWN are so much more observant of their daily fatigue that they are better judges of when they can and can't drive safely. So much better that the people that ignore their sleep their whole lives.

I personally haven't had a problem driving because I never drive when I know I can't. I just don't see how that's different from any other kind of situation where people need to use their judgment in driving. I'm sure there are a lot of alcoholics out there who drive drunk much more often than I ever drive sleepy. And since I've found a treatment that keeps me feeling "normal" and alert most of the time, I don't see why I should tell the DMV that if I eat a banana I can't drive. Why bother? It's up to me to be a responsible driver. They're not going to intervene unless I abuse my privilege and really screw it up. But that's not going to happen!


I agree. I had an accident last year where i wrote my car off, and that led to me being diagnosed. Now I know that when i feel like crap/tired i'ts not "normal" and i know what to expect. for example, last night i left my car at work and got a ride home with someone. it sucks because now i have to take the bus for an hour to work today, BUT i know I wasn't ok to drive so i didn't. usually driving isn't a problem for me, esp as I work hours that don't have me driving past 9/10pm. I agree with medication or other ways of controlling sypmtoms I see no reason for people with N. not to drive. you have to use discretion for driving with or without N. there are probably higher percent of people coming off 12 hour night shifts that cause accidents than drivers *who are diagnosed* with N cause.

#24 petra

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Posted 14 January 2009 - 10:25 AM

Sorry I'm fried so I don't know if I'll make sense here.
All those wrong assumptions that all PWN experience the same problems, and the assumption that we'll all experience impaired judgement and won't know our limits, and we aren't fit to be as big a part of assessing what we can do as anyone else is - that's a big problem. I hope they start to get it that we're all different.
With me, early on in a wave of sleepyness it's my risk awareness and judgement of what I can do that just goes, disappears, without me noticing. I don't get a second to notice it going and think and make a decision to change my behaviour. Even in better moments my awareness of what's around me and judgement on what I can safely do is not so good, and my reaction speed is always slow. I don't drive or even use a bicycle, but Iv still found plenty dangerous things to do just bumbling about on foot. I'm not sure but, looking from the outside it looks to me like the other few PWN I know can assess their capabilities, second by second, better.

This feeling of not ever knowing if I should be trusting myself mentally or physically from second to second, affects so much. It's only my temporary judgement that's impaired - far as I can tell unsure.gif . I'd never want anyone, any PWN to be seeing themself like that, if they didn't have to think like that for their own or others safety. I need to have a think about how to live with this in a way that keeps me physically safer but doesn't do more harm than good. feels like an impossible equation.

There's times I say *BEEP* it, I'm going to do this and whatever happens happens. Because my 'risk assessment' of my situation at that moment is that if I don't go and do it, I'm going to go crazy from squishing my whole life down to doing nearly nothing, and going now where. And so I go and do or try to do whatever it is, and chaos happens and it costs me, but I survived so far. It's that line in a song (ani di franco?) 'When I look down I just miss all the good stuff, when I look up I just trip over things'

It's my second by second judgement that becomes impaired, not my overall longterm thinking, but I meet people who can't seem to get that difference and try to make all kinds of decisions for me and tell me how I need to live, as if because I'm sleepy a lot of the time, my thinking is like a little kid's thinking the whole time. driving and a few other things are not possible, for now. but thinking is, quite a lot of the time.

there's things affect my longterm judgement too - Like lots of people there's times I see what I want to - this was pre dx, it took me about a year of near misses, trashed boots and small wounds, before I got it that, for now, I wasn't ever safe to use an axe to chop wood because of sleepyness and C. I didn't want to give it up, I'd had to give up too much already.
And with me there's a bit of self bullying involved in living with this - I'm still in the habit of telling myself to just cope with it!, and that involves blocking out information on how bad it's getting, and on what I know is likely to come next, and that's not so good for risk assessment.
Ive rambled off on a tangent, not saying anything practical about driving, but reading what people wrote, got me thinking about how if (for some of us) our minds and bodies change this fast, how do we get to feel and hold onto that good basic trust in ourselves overall, that kind of trust in themselves that lots of people don't even notice they have. I know there's lots of other ways to lose or have that feeling taken from you. And how others controlling reactions to N and to how I live with it, affects my feeling about what I can do out there. So much to think about,

#25 petra

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Posted 14 January 2009 - 01:13 PM

replying to myself, what I was wanting to say - I feel for anyone getting told what to do by people making these assumptions about us,
and for anyone that it's less clear for, who's finding it hard to know if it's safe.

anyone else find decisions about safety to do with N and C this complicated, or am I overthinking it?

#26 kristlclr

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Posted 17 January 2009 - 12:06 PM

QUOTE (petra @ Jan 14 2009, 06:13 PM) <{POST_SNAPBACK}>
replying to myself, what I was wanting to say - I feel for anyone getting told what to do by people making these assumptions about us,
and for anyone that it's less clear for, who's finding it hard to know if it's safe.

anyone else find decisions about safety to do with N and C this complicated, or am I overthinking it?



Well, Petra, could be overthinking it, but I appreciate your posts. It makes me feel better to know I'm not the only "over thinker" who "goes off on a tangent". I've found when I'm sleepy my thoughts/conversations are more likely to run off the road than my car is when I'm driving.

Now, don't anyone (namely Hope & Faith) get your panties in a bunch over that comment, it was merely a metaphor, I refrain from driving when I'm not feeling up to it.


My doc suggested taking my license when we were experimenting with my meds a year or so ago stating, "Now next month is N awareness month and it would suck [yes he said suck] if you get into an accident because of your N and I let it happen, so tell me if these meds aren't working". I assured him I was responsible enough that if I didn't feel up to it, I wouldn't drive.

#27 wayne

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Posted 08 May 2009 - 08:23 AM

I was diagnosed about a year ago and just recently got my license and was worried about the same thing. I take provigil but ive found that if i drive alone im more prone to falling asleep. My mom decided we were legally obligated to tell the DMV just in case something did happen and they told us that as long as my neurologist didnt send them a letter saying it wasnt safe for me to drive then i could keep driving.
This is in virginia btw

#28 malachi777

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Posted 08 May 2009 - 11:14 AM

QUOTE (wayne @ May 8 2009, 02:23 PM) <{POST_SNAPBACK}>
I was diagnosed about a year ago and just recently got my license and was worried about the same thing. I take provigil but ive found that if i drive alone im more prone to falling asleep. My mom decided we were legally obligated to tell the DMV just in case something did happen and they told us that as long as my neurologist didnt send them a letter saying it wasnt safe for me to drive then i could keep driving.
This is in virginia btw


Narcolepsy is no reason to have your license revoked, lack of responsibility and stupidity is. I recently received a letter from my company and here is a brief part of it...


I received a letter from my company of 160.000 employees stating, "A safety report I just reviewed identified you as one of the safest drivers in our company. Your commitment to safety is highly commendable. Congratulations! You are invited to compete in the ATA Truck Driving Championship with the Florida state competition. If you win first place, you will be sent to Pittsburgh, PA at the National Championship."

This folks, is a perfect example that being narcoleptic does not make you a danger to other drivers. We are safer drivers than most because we know when we need to pull over. If you work on controlling your condition, you can do whatever you want in life. This disability does not give us a pass to give up on life. Michael

#29 sleepless sleeper

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Posted 08 May 2009 - 01:34 PM

I think it depends on how the illness is for you and how you are with meds. I know that I can't drive for long periods of time. Long periods being more than 30 minutes. In WY, you must let the DPS, DMV, whatever it's called here, know if you have a neurological disease of any kind, and I wholeheartedly agree with this. At that point, you must get evaluated by the doctor that treats you for that illness, and the doctor must fill out the form stating whether or not you can drive, where you can drive (ex: interstate, local, etc), and what class license he believes that you can have. The DMV will then assess before a review board what to do. There is nothing wrong with this. The doctor that you see should know whether or not you are a safe driver. If you don't agree with your doctor, then get another doctor. It's not just about our freedom to drive. The elderly face this also. As we age our depth perception, hence our judgement is impaired. Some people may not have a problem with this, but this is a good reason why every four years or so we need to go in and retake eye exams for the right to have a driver's license.

My doctor knows how cautious I am. My son needed to go to the emergency room and i would not drive him. I would have been a hazard to others and put more people in the er if not the grave. What would i have don if i had mput my own child in the grave? Narcolepsy is that bad. For some of us. But my doctor put that i could drive on interstate becuase i use my judgement appropriately. That may change another day from another illness or age. Who knows? At that time my doctor will change his recommendation.

If you know you are not capable of the drive, don't do it. It is a moral obligation to yourself and those that coexist with you. If you are capable of driving, then it should be no problem getting a driver's license anyway.

#30 malachi777

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Posted 08 May 2009 - 03:02 PM

QUOTE (sleepless sleeper @ May 8 2009, 07:34 PM) <{POST_SNAPBACK}>
I think it depends on how the illness is for you and how you are with meds. I know that I can't drive for long periods of time. Long periods being more than 30 minutes. In WY, you must let the DPS, DMV, whatever it's called here, know if you have a neurological disease of any kind, and I wholeheartedly agree with this. At that point, you must get evaluated by the doctor that treats you for that illness, and the doctor must fill out the form stating whether or not you can drive, where you can drive (ex: interstate, local, etc), and what class license he believes that you can have. The DMV will then assess before a review board what to do. There is nothing wrong with this. The doctor that you see should know whether or not you are a safe driver. If you don't agree with your doctor, then get another doctor. It's not just about our freedom to drive. The elderly face this also. As we age our depth perception, hence our judgement is impaired. Some people may not have a problem with this, but this is a good reason why every four years or so we need to go in and retake eye exams for the right to have a driver's license.

My doctor knows how cautious I am. My son needed to go to the emergency room and i would not drive him. I would have been a hazard to others and put more people in the er if not the grave. What would i have don if i had mput my own child in the grave? Narcolepsy is that bad. For some of us. But my doctor put that i could drive on interstate becuase i use my judgement appropriately. That may change another day from another illness or age. Who knows? At that time my doctor will change his recommendation.

If you know you are not capable of the drive, don't do it. It is a moral obligation to yourself and those that coexist with you. If you are capable of driving, then it should be no problem getting a driver's license anyway.



Sleepless, you must really have it bad and fall asleep with absolutely no warning. I got warnings or symptoms way before I would drop out. I would first lose my speech, later, feel a sinking sensation but was still able to fight the sleep while driving. As soon as I would stop somewhere and take a five minute nap, I was refreshed enough to go a few more hours. Now that I have these meds, I don't need to worry anymore. I have lost two friends over the years who had diabetes and a third with uncontrolled high blood pressure. The two with diabetes, both died in accidents due to sudden loss of consciousness because of low blood sugar. The other quit taking her bp meds and had a stroke while driving.

I think it all falls on individual responsibility and most doctors will pull your license to protect their practice. I have had narcolepsy since my early 20's but was not confirmed until 2.5 years ago. My doctor pulled my license and I was pissed because I would have had to go on social security and struggled through life. When I brought him my numerous past sleep studies, he decided I was responsible enough to drive because he realized I have had it this long with no problems. I have been a professional driver for 17 years and have never had an accident or ticket. I know my limitations.

#31 sleepless sleeper

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Posted 08 May 2009 - 03:31 PM

QUOTE (malachi777 @ May 8 2009, 02:02 PM) <{POST_SNAPBACK}>
Sleepless, you must really have it bad and fall asleep with absolutely no warning. I got warnings or symptoms way before I would drop out. I would first lose my speech, later, feel a sinking sensation but was still able to fight the sleep while driving. As soon as I would stop somewhere and take a five minute nap, I was refreshed enough to go a few more hours. Now that I have these meds, I don't need to worry anymore. I have lost two friends over the years who had diabetes and a third with uncontrolled high blood pressure. The two with diabetes, both died in accidents due to sudden loss of consciousness because of low blood sugar. The other quit taking her bp meds and had a stroke while driving.

I think it all falls on individual responsibility and most doctors will pull your license to protect their practice. I have had narcolepsy since my early 20's but was not confirmed until 2.5 years ago. My doctor pulled my license and I was pissed because I would have had to go on social security and struggled through life. When I brought him my numerous past sleep studies, he decided I was responsible enough to drive because he realized I have had it this long with no problems. I have been a professional driver for 17 years and have never had an accident or ticket. I know my limitations.


I never pass out and never have. I've always said mine is bad. But I also hallucinate. That's the key. Or I think that I'm awake. But as you say, and what I've tried to say is to know your limitations.

#32 sleepless sleeper

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Posted 08 May 2009 - 03:33 PM

I'm not arguing with anyone. The same as I didn't on the friends thread. the whole forum thing is powered by people's opinions. imo

but who am i to type imo?

#33 Lais02

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Posted 08 May 2009 - 05:07 PM

QUOTE (sleepless sleeper @ May 8 2009, 01:33 PM) <{POST_SNAPBACK}>
I'm not arguing with anyone. The same as I didn't on the friends thread. the whole forum thing is powered by people's opinions. imo

but who am i to type imo?


wow... I had to look up "imo" on wikipedia lol. So in case there is anyone else that had no clue what that meant...

imo = in my opinion

#34 sleepless sleeper

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Posted 09 May 2009 - 01:39 AM

imho - not i'm ho, but humble...

impoho - again, not i'm ho thaz po, but personal opinion, humble...

#35 sunrisemoon

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Posted 09 May 2009 - 05:24 AM

QUOTE (sleepless sleeper @ May 9 2009, 04:34 AM) <{POST_SNAPBACK}>
If you know you are not capable of the drive, don't do it. It is a moral obligation to yourself and those that coexist with you.

Exactly. This applies to anyone, anywhere.

#36 sunrisemoon

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Posted 09 May 2009 - 05:30 AM

QUOTE (malachi777 @ May 9 2009, 02:14 AM) <{POST_SNAPBACK}>
Narcolepsy is no reason to have your license revoked, lack of responsibility and stupidity is.

This disability does not give us a pass to give up on life.
Two of the best things I've read in a while, especially the second part.

#37 Lais02

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Posted 09 May 2009 - 02:31 PM

QUOTE (sunrisemoon @ May 9 2009, 03:30 AM) <{POST_SNAPBACK}>
Two of the best things I've read in a while, especially the second part.


I completely agree. I really thought I commented on that second line also, but I guess I didn't!?

#38 Mike B

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Posted 03 July 2009 - 12:59 PM

i did not have a license until my divorce. Then I was given one, but with a mileage restriction to keep me close to home. The DMV also requires that my specialist fill out an annual review. Not so bad considering I never usually venture more that 5 miles from home. I was fortunate in that my company retired me after being diagnosed, so if I am too tired to drive, I just stay home.

#39 SureSleepsalot

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Posted 13 November 2009 - 12:53 AM

Here's some stuff I'm struggling with okay?

1.Uh...
2. zzzzzz


...Huh? no. wait! ? what were we talking about?
My state, (NC) Doc says that any car accident I get in, would "technically" be my "Fault" b/c I had not informed the DMV of my condition... Little did I know I don't even need a DL to lawfully travel about the highways and byways but thats another note another post.
Point is... now that I told them (about my N) they give me these restrictions...
1-No going over 45 mph (anywhere)
2-No Interstate Driving
3-50 mile radius of my home
4-(the biggie) No Night-time driving!!

Now, I don't know what happens if I break these provisions; but lemme tell ya, It won't be pretty... they could revoke it I'm sure, how long is debatable. but thats not the point

I can't drive at night, but guess what? I'm a 2nd shift kinda dude... I can't wake up in the morning bright eyed and bushy tailed, forget it...
so, these days it gets dark at 5:45

So, the state, has completly destroyed my ability to work...HELLO! (if)...I can't work, I can't FUNCTION as a HUMAN BEING.
(sorry, I promised myself I wouldn't rant) I'm just calmly asking... can you help me convince these wet brain republicans and democrats
and whoever the h else is up in the dang place making a successful life unattainable to a young man with more talents and abilites than he knows what to do with?

thanks.
I'll have ALOT more later, but its past my bedtime...

Peace,(out)

-Adam

#40 Mirianda

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Posted 13 November 2009 - 11:58 AM

I'm from Canada but I passed my Licences after being diagnosed. I don't remember them asking for medical conditions... But I am not renewing before next year (I think) So I'll see that when I get there. Other than that if I can pass my Licence then I think I deserve to drive! *even though I take the bus to work and dang its long!*