evelyn

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

Have you told the DMV you have narcolepsy?   108 votes

  1. 1.

    • Yes, I have told the DMV about narcolepsy.
      10
    • No, I have not told the DMV about narcolepsy.
      98

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I don't know why I did it, but when I renewed my license this year I wrote that I had narcolepsy. I immedietly regretted putting it on the form and turned around and went back for my form, but thanks to computer automation it had already been sent to the medical office and was unretrievable. I am expecting a letter any day now from the DMV. I don't know what it's going to say but I suspect I'll have to get a lot of medical clearances from my doctor. I think my doctor will help me with the forms. My narcolepsy is controlled with medicine and I need to drive to work, I do not live in an area with public transportation. When I present this information to the DMV will they still let me drive?

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I don't see why not. Studies comparing accident rates between controlled narcoleptics and the general population do not indicate that narcoleptics are at an increased risk for being involved in an automobile accident. (I believe there's a 10-fold increase in the risk of being in an automobile accident if you're an unmedicated narcoleptic). If I were in your shoes, I'd be more worried about your insurance rates once your insurer receives wind of this information (especially if you have a history of sleep-related car accidents/inattentive driving).

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I unfortunately did the same thing as you did and I was very sorry that I told them.

First of all, my license was suspended for a year. Then I had an interview with a DMV person that lasted about 45 min. I told her that we were safer drivers because we are always aware of our problem and also that my daughter allowed me to drive with my granddaughter in the car. She told me that it was against her better judgement, but she would reinstate my license. Then for TEN years, I had to renew my license every year. I even had to take a driving test once.

My advice to everyone is DO NOT TELL THE DMV you have narcolepsy.

Bev :roll:

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Hi everyone I am so glad we have this forum and friends that go thru the same thing I go thru now I feel normal ...

Thanks for the advice on this topic I have to renew mine next year and was thinking what will I say, I need my car to take my kids to school and to go to work I take medication but, not everyday is a good day...

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I agree - don't ask, don't tell-absolutely, because we need to be able to drive legally to the grocery store and whatever. I do not pretend that I can drive long distances. I hardly ever drive longer than 20-30 min. without stopping so I can monitor my situation and take a refresher nap if necessary.

I find that most people are not able to understand that narcoleptics are not all falling asleep all the time. I made the mistake of self disclosing on an application and they turned me down for a course. I tried to explain that people with narcolepsy could be anywhere on a scale from 1 to 10. Somedays I am an 8 and some days I'm a 3, and more importantly, most days I am a 4. But they would not change their decision and I understood that they didn't understand - and that I should not have told them - no bigee.

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I really don't mind telling most people about my narcolepsy--BUT--I would not tell the DMV. Even though I understand that a medically controlled narcoleptic is legal, I would not tell. I went for diagnosis because I was unexpectedly driving off the road, etc. I know my situation and never drive far. I would never drive more than an hour. If I drive that far, I work hard to be sure I have had as much sleep as possible, am well-medicated (Provigil), and as attentive as humanly possible.

I also fear what insurance rates would be if the insurance company didn't just drop me anyway.

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I still have my lisence, although my Dr. says I should not drive and I know I am not safe, I was falling asleep or blacking out w hen I was going down the road, or at stoplights. So I do not go anywhere by myself, my independence is gone. So if you have a severe case of narcolepsy please be careful when you are out on the road, who's life besides yourself are you possibly jepordizing?

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Narcolepsy and driving suck. I actually enjoy driving because I love singing out loud and talking to myself, and no one is there to hear me or tell me to shut up. But I get soooo tired when I drive so I try to avoid it. I totaled my first car when I was 16, falling asleep, and I was given a ticket for inattentive driving. I never suspected narcolepsy until I drove off the road 2 years later. I have been diagnosed for almost a year now and the last thing on my mind is telling the DMV I have narcolespy. As long as I am medicated, which I am, there is no reason for me not to drive locally. Life is so much more of hassle when you have to ask/wait/pay for rides.

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I've heard that truckers sometimes use a device that monitors the number of times that they blink in order to judge alertness. If they are falling asleep the device will beep to wake them up. I looked into them a little bit online and have some questions...

1. has anyone ever used one before, do you think it works well?

2. is there a particular brand/model that you recommend?

3. where did you go to buy/order yours?

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Hi everyone. Im new here and need some very needed advice. I've been treated for having problems staying awake and other related problems, for several years now but havent been told that I have anything. I've had problems sence I was very young and It's just getting worse. So bad, that I cant even remember if im doing my job right or rememeber where im going. I get lost all the time. I eather nod off or can sleep all the time without even knowing it. Everyone has to wake me and ask if im ok. I say yes, but im back to sleep at an instance. And thats just a few things that Im talking about. The worst thing is my 18 year old is having the same problem. He's going to lose his job if he dosent get a handle on it. (my dad had the same problem) Im scared to go and get the real disnoses (im a bad speller, sorry) for my son and I. Im on provigil and I just had it increst to 400 a day. But that was by a pyhic. I have bipolor 1 and having type 2 episodes. But after reading this and other pages on the internet. I think that im just having afects of narc. instead of type 2 episodes. I cant even keep a job because im nodding off to much, feeling insecure about if im up to there standard or getting sick all time. The meds are helping but i have to have my lic to drive. I fall into the all the specs of narc. I never even thought about this problem until I picked up my meds and the med sheet had changed to say that its a treament for narc. I was told that it was to treatment for ms paitents with sleep disorders in 2002. And I dont have ms .Please, if anyone can talk to me about this, I could maybe understand how to deal with this better.

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I have been driving for 22 years and driving professionally for 17 years. I have been fortunate for not having any accidents and have suffered with sleep conditions for the last 10 years. I was finally diagnosed with narcolepsy without cataplexy and after the sleep study, I had a DNA hla test for narcolepsy and was tested positive for that as well.

I have seen many forums where others blame narcolepsy for their traffic accidents. I disagree in most cases. When a person knows they have a problem such as narcolepsy, we are much more aware and careful because we unquestionably need to be.

Where there is an accident, it is usually caused by those with cataplexy or those who are unsafe, inattentive drivers. My boss asked me what I do different that keeps me from having an accident while everyone else at work has had one. I told her that if I was not careful, I would lose my license and I will lose my job. I cannot afford to have an accident.

I am on a very strict sleep schedule that I stick to everyday. During my lunch time, I take 15 minutes to eat and 30 minutes to sleep. After this, I am refreshed enough to continue my work. I also have the intelligence to get off the road when I am fatiqued.

If you suffer with cataplexy, the smart thing to do would be to refrain from driving if symptoms are not resolved. I would not tell the DMV because they would love to pull my license. If they suspend our license, they need to pull the license of diabetics, heart patients and those suffering with other conditions.

If your symptoms are controlled, you should be able to drive.

Mike

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Do you drive drunk?

Do you drive under the influence of any pain meication?

Do you do drugs & drive?

If the answer to these questions is no - then why would you drive with narcolepsy? Is your meciation effective 100% of the time? Are you guarenteed you'll never have an accident? Won't you always wonder if your reaction time would have been quicker if you weren't narcoleptic? Did you black out or pass out for 1/10 of a sec? Or were you 100% focused 100% all of the time?

And if you kill someone, let's say a small child, will you continue to drive?

I HATE not driving, HATE IT. HATE IT.

But, there's something I would hate more. I can live with myself with narcolepsy. Don't know if I could if I hurt or killed another person.

Can you?

I don't see it as my doctor's decision. He doesn't drive my car. I'm the one that will have to live with myself. So, it's my decision. It's hard. Very hard. It NEVER pays to lie. Grow up and be responsible.

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There are literally millions of Americans who suffer with some kind of medical issue that can cause accidents. There are thousands of accidents caused every year just from sneezing so says the DOT. Anyone with low blood sugar, diabetes, high blood pressure etc... I feel that the government has no right to step in as far as revoking a license unless an accident has occured.

The issue is not narcolepsy, the issue is being responsible. I have been driving for 17 years, have not had any accidents and no tickets. I have had narcolepsy without cataplexy for 8 years and do not get sleepy behind the wheel. If I felt it was unsafe for me to drive, I simply will stay home.

I have seen posts where a few people blame narcolepsy for their accident while the true cause could be the lack of proper driver training or just not paying attention.

I am sure there are many sufferers with extremely severe narcolepsy with cataplexy and they should not be driving.

Let me reiterate, most accidents are caused by not paying attention, excessive speed and other medical conditions, not by narcolepsy.

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No, I would not volunteer to the DMV that I had N. In my experience PWN are more aware of their driving abilities than the average driver. All of the PWN I know still drive, and two of them drive professionally for a living. They are ACUTELY focused on awareness of their EDS at all times, and if they need to pull over and nap, or take an additional dexadrine they do so. For three generations of PWN in my family, not one has driven when they feel unable to do so for any reason. For the record, there has not been a single N related car or truck accident in any generation. Just my opinion.... Thanks

Suzzanne

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I m from Canada, dont know if the laws are the same all over for physicians: however in Canada it is the legal obligation for the Dr. to report to the ministry of transportation the name of any patient with whom he diagnosis with a disorder that has the " potential to impair their driving ability ". I found this after recently receiving a letter in th mail suspending my lincence until I provide them with a medical letter stating my condition and treatment etc. I was apparently sent a letter in the mail in nov 2007 telling me of the need for this letter or my liscence would be revolked! I never received the original letter as it was mailed to an address that I lived at 3 years ago. The ministry says not their fault!!!! The solution, Wait for an apt with my Dr.

( not for three weeks ), the fax the letter to the ministry for review and final decision. Another 6-8 weeks!!!!!!!!1= No liscence for at least 2-3 months. The treatment is unbelievable ! Excuse the expression but it really pisses me off!!!

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Do you drive drunk?

Do you drive under the influence of any pain meication?

Do you do drugs & drive?

Did you just say my narcolepsy impares my judgement like drugs and alcohol? THAT is the kind of misconceptions all narcoleptics are up against!

If the answer to these questions is no - then why would you drive with narcolepsy? Is your meciation effective 100% of the time? Are you guarenteed you'll never have an accident?

Narcoleptic or not, your not EVER going to get a free pass that says you will NEVER have an accident.

I applaud your knowledge of your own driving skills. If you are to tired to drive, you shouldn't. Again, narcoleptics don't have exclusive knowledge to this. It's just common sense. My narcolepsy can make me too tired to drive at times, but it doesn't challenge my common sense.

Won't you always wonder if your reaction time would have been quicker if you weren't narcoleptic? Did you black out or pass out for 1/10 of a sec? Or were you 100% focused 100% all of the time?

No! NO! NO! That's just fear talking! We are smarter than that, Hope! Maybe if I was on my cell phone! Maybe if I didn't have to worry about the guy driving next to me has Johnny Walker riding shotgun!

It's just common sense. If your common sense tells YOU it's not in your better judgement to stay off the road, that's admirable, but we all (!!!!!) have different degrees of the condition.

And if you kill someone, let's say a small child, will you continue to drive?

What part of that question is NOT intended to invoke fear?

I HATE not driving, HATE IT. HATE IT.

But, there's something I would hate more. I can live with myself with narcolepsy. Don't know if I could if I hurt or killed another person.

Then DRIVE!! Don't let your condition dictate to you what you can and can't do! Use common sense, Hope&Faith! Not fear! We are so much more than that! Drive, and don't hurt or kill anyone!

Know yourself. Know if it is a good idea to drive at any given moment, but free yourself of the fear!

I don't see it as my doctor's decision. He doesn't drive my car. I'm the one that will have to live with myself. So, it's my decision. It's hard. Very hard. It NEVER pays to lie. Grow up and be responsible.

So, are you saying no one on this board should drive? Are you claiming this would be "responsible"?

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I have narcolepsy and I don't drive anymore. Most with N don't have it as bad and still drive, as long as they are aware of their own abilities, then great! I know I have lost alot of independence not driving, but I have a good husband who will take me places when he is not at work. I do miss driving, but it was my choice since my N and cataplexy were making it dangerous.

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I can never remember who I have/haven't told especially since I haven't ever applied for a license. I don't fear driving and I know for a fact that I have very fast reflexes (less than .25 seconds). I don't drive because at this time I don't need to drive, but maybe when I'm out on my own I will. It's all a personal choice, it shouldn't matter what people tell you you should feel because of the N, especially if they don't live with it! If you trust yourself, drive, if not, don't...think about all the elderly they let drive 20 mph under the speed limit with 5 second (on the fast end) reflexes. Most of us would make far better drivers than the majority of folks over 60. Sorry if you are one of those elderly folks, but it is true for the most part, with the exception of my grandmother who drives like a bat outta...yeah...:lol:

Chris"Toph4er"

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My license was suspended by my doctor when she sent a letter to Penn DOT. Luckily after I was diagnosed and began treatment my neuro gave me a wakefulness test (dark room in the middle of the day) and I passed. He sent a letter to the DMV and they cleared me.

No insurance troubles either.

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Do you drive drunk?

Do you drive under the influence of any pain meication?

Do you do drugs & drive?

If the answer to these questions is no - then why would you drive with narcolepsy? Is your meciation effective 100% of the time? Are you guarenteed you'll never have an accident? Won't you always wonder if your reaction time would have been quicker if you weren't narcoleptic? Did you black out or pass out for 1/10 of a sec? Or were you 100% focused 100% all of the time?

Driving with narcolepsy (a medical condition) is not the same as driving drunk (a temporary, physical state), driving sleepy (another temporary, physical state), or the other options you've mentioned. Narcolepsy's "sleep attacks" don't happen every day, for example, especially not for people who respond to medication.

If I cause an accident, I doubt I'd blame my narcolepsy right off the bat. There are a lot of things that can cause an accident - maybe I didn't see the black ice, or my turn radius was too large, or I didn't stop fast enough. I know plenty of people who have accidents for these very reasons... It has little to do with their sleepiness, generally -- A lot of accidents are, well, accidents. Someone makes a mistake. It happens.

Also, to be perfectly honest, I know few people who are 100% focused 100% of the time. Most people listen to the radio, sing along, talk to other people, whatever, while they're driving their cars. Driving is one of those things you need to know for yourself - YOU need to know if you can handle singing in the car, or drinking coffee, or talking with hands-free headset/cell phone. YOU need to decide if you a good driver under those conditions.

And if you kill someone, let's say a small child, will you continue to drive?

But, there's something I would hate more. I can live with myself with narcolepsy. Don't know if I could if I hurt or killed another person.

Can you?

I don't see it as my doctor's decision. He doesn't drive my car. I'm the one that will have to live with myself. So, it's my decision. It's hard. Very hard. It NEVER pays to lie. Grow up and be responsible.

Right, because apparently, if you cause an accident, the only possible outcome is death, right? Most accidents are minor ones, and even the semi-major ones have few physical injuries. It's obvious your method is a scare tactic. And, why are you only applying it to people with N? What about people with work-shift sleeping disorder, or sleep apnea, or EDS w/sleep attack? What about people who have high-stress, emotional problems, heart problems, high blood pressure, or other things that can not just impair them physically, but mentally, too?

Anyway, humans need to use judgment all the time, self-assessment. I never have driven after drinking, even just one beer hours before, because I was made uncomfortable by that fact. However, to proclaim all people should do the same simply because my self-assessment say so is ridiculous. In the same vein, I assess my narcolepsy every day. Can I drive? Now? Should I carpool instead? Or, if I am "out" and don't feel well, I call someone to help me out -- grab some friends, have'em drive me back to my place with my car. Pay them back by making dinner or something.

But, let's be honest, if you're not narcoleptic and you suddenly feel ill and/or weak while at the store, should you be driving? Probably not. This is, again, self-assessment. I can't drive when I have a cold (primarily a sneezing issue for me) but I know people who can drive when having colds (without cold medicine) because they don't have those problems. Self-assessment.

The problem with N is that few people seem to understand it. I've had sleep attacks before (never while driving, only while being passive) and was diagnosed rather quickly. I'm responding to medications and have restricted my driving significantly (short distances, planned trips, only when necessary, etc.). I've read about people who have uncontrolled sleep attacks or cataplexy - and don't drive. Again, self-assessment.

drago

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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!

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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: . 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,

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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?

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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.

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