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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? (108 member(s) have cast votes)

  1. Yes, I have told the DMV about narcolepsy. (10 votes [9.26%])

    Percentage of vote: 9.26%

  2. No, I have not told the DMV about narcolepsy. (98 votes [90.74%])

    Percentage of vote: 90.74%

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#41 2tired2bNormal



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Posted 22 January 2011 - 03:21 PM

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?

Hi. This EXACT same thing happened to me last November! What in the world possessed me to say I had N is just beyond me! I guess I was just being honest! So you want to know what happens? I can tell you!
Obviously, they did not renew your license. You will get a letter in the mail saying you have to go before the "medical review board" on a certain date and time. When you go there, they will ask you a BUNCH of questions on a form and you have to answer. (they will record it too) What they are checking for is.... are you appearing confident to drive - do you appear to be taking your meds as prescribed - do you have any memory problems - etc....
If you had someone drive you there, like you were supposed to, they will also separate you from your driver and they will question them too! They actually asked my Husband if I abuse my medication!!! WTF!!!

So, you won't get your license then either! They have to send your answers and tape recording to the State's DMV department and they will have to decide if you're capable to drive. (Once they receive the medical records from your Dr., of course.) It took them about 2 months to give me an answer. Once my letter came in the mail, I had to make an appointment for a 3 hour EXTENSIVE driving TEST. This means, Written, Vision & Driving.
Once you've passed that...... YOU FINALLY GET YOUR LICENSE BACK! However - with the stipulation that you will need to have medical followup from the Dr. after the first year, and also every time you renew.

Just a word to the wise....... After you pass all the tests, and they ask you AGAIN... do you have anything that would prevent you from driving safely - SAY NO!!!!! (You have by then, been medically cleared to drive!) ;)

I hope this helps you! I feel bad for you cuz I know what you're going thru!

When I was denied my renewal at the DMV, I was by myself. I had no one to drive me home! So I told them I had nobody to come and get me and I wasn't getting in my car and driving without a license! That's illegal and I'd end up in jail! ;) I put up such a stink that they agreed to give me a "temporary paper certificate" saying I could drive until this was settled! Maybe that will help you get back and forth to work!

Please feel free to email me if you have anymore questions! I'm here to help if I can, and most of all support you and care what you're going thru!

Take Care!

#42 2tired



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Posted 28 January 2011 - 02:01 AM

So the Canadian version looks something like this....

A little history first:
I have been told I have N with C that has been progressively getting worse over the past 3 years. Sleep studies don't actually confirm N, but the cataplexy with laughter makes the neurologists believe that it is, in fact N with C.

My neurologist witnessed one of my cataplexy episodes (I was surprised to see her and that triggered the cataplexy. I was really tired at the end of a long week at work and not taking any medication...thus the full body episode.

So she says 'I don't think you should be driving' until we get the cataplexy controlled with medication. I had been on two different meds where the side-effects were intollerable so weaned myself off in late September and didn't start a new med until just before Christmas. The cataplexy during that time was predictable...whenever I laughed I would have some degree of cataplexy and the more tired I was, the more severe the episode. None of the episodes lasted more than 30 seconds (enough time to buckle to the floor and then get up again).

It just so happened that my DL expired on my birthday this year. The neurologist told me that I had to disclose the information about my medical condition so being the honest person I am, I did. They gave me a medical form to give to my doctor to complete, which I did. That was around December 15th.

On Tuesday this week I got a letter from the Ministry of Public Safety indicating that based on the information provided by my neurologist and the guidelines for public safety, they had made the decision that I am unfit to drive. The letter stated that the Insurance company (government) has been instructed to cancel my driver's licence and that I will not be eligible to drive until my doctor submits a letter stating that I have been 'episode-free' for the 12 months prior to the date of the doctor's letter.

Up until this week, I have not been driving - based on an agreement with my physician. If my licence hadn't expired, and I wasn't stupid enough to disclose, I would still have a licence. I still wouldn't drive until I knew the cataplexy was managed, but at least I had a licence!! Now I'm looking at a minimum of 12 months...

It is very frustrating and the impact is growing - I now have to change the principle driver on my vehicle to my daughter (17) which will raise my insurance costs by close to $100 a month. I can no longer fulfill the duties of my current job because I drive to visit my clients in their offices. I have to consider moving so I can be closer to amenities, public transportation and possibly walking distance to work.

Don't get me wrong....it's all doable. It is just very inconvenient. When you are a responsible citizen, it seems especially frustrating 1. to have voluntarily stopped driving and 2. to have been forthright about my condition only to feel like I'm getting blow after blow....very, very frustrating.

I agree with those who say it's an individual thing - everyone's case is different; the extent the the symptoms are varied and awareness of and willingness to accept the responsibility for and possibility of causing an accident....unfortunately, in BC, they distinguish between 'persistent' and 'episodic' symptoms. Those who have 'episodic' symptoms will most always be determined unfit to drive because there is no way to 'measure' the functional ability to drive of someone who has episodic symptoms....

I suppose that makes sense - I think of epilepsy, Diabetes, cardiac arrest, aneurysms, stroke....hey.....wait....??
Sorry for the long post, but I would dearly love to appeal this decision. Irony: I don't have the energy....I am certain there is a case to be made here, but I think it would take the 12 months to get to that point at which time I might well have my C under control and a licence in the mail...who knows :)

Thanks for listening.

#43 Niki V.

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Posted 25 July 2011 - 08:51 PM

I am so glad to know this...don't say a word!!! I have to be able to drive to get to work. I have to work! I know my limits and I DO NOT drive if I have not had my meds!!! My husband is very good about driving when we go places or on trips, no questions asked! He is so good to me and very understanding and my Narcolepsy and how it has changed my life and his and our daughters!

I am lucky that I only work less than 1 mile away from home. I don't know what I would do if I had to drive further than that. In the past when I had jobs that had long drives, I recall falling asleep at the wheel and I thank God everyday that I didn't wreck. At the time, I didn't know what was wrong with me, I just thought I was not sleeping good at night and really tired all the time.

#44 echothat



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Posted 05 October 2011 - 10:05 PM

I won't be telling the DMV that I have narcolepsy. It would be way too complicated.

#45 nerkie



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Posted 21 November 2011 - 11:58 AM

Would I tell the DMV? No. If my doctor feels like I shouldn't be on the road, then he will send the little form to the DMV to let them know I shouldn't be driving. I feel that I am a safe driver... edging almost on the paranoid actually. Driving to me is enjoyable and imparative to my life. I drive an hour or more to work one way, then an hour back, every single day. If I feel that I cannot make it safetly home because I'm too tired, I nap. I monitor my condition closely to prevent accidents. I was only just diagnosed with N with C thisyear and honestly, I haven't noticed a change in my life too much. I still power through my commute, just as I did before I was diagnosed. I still go out, I still drive myself everywhere, because I know I have the ability to do so safetly.
I have had N, I believe, since I was ten. That's when all the symptoms really kicked in. I've been driving since I was 14 (in NC you could get your learners at that age) and haven't stopped driving. I'm almost 22 now, and I just got into my first accident. It really bugged me too, because I had just gotten the car of my dreams and when I told my family I was in a car accident that first they asked me was if I was asleep.
NO. I wasn't. I was wide awake, enjoying my little red convertible on a sunny friday afternoon. The jerk off in the van next to me though, decided he wanted to be in my lane, hit me, caused me to spin out and I hit the jersey wall, totalling my vehicle... How come no one revoked his license? Oh, wait... because he didn't STOP. If the highway hadn't been empty as it was, there would have been a major pile up accident. So if the DMV isn't going to revoke some jerks license, why the heck should they be allowed to yank mine, simply because I have a diease? I'm pissed as hell, but it made me more aware of my own actions on the road. The funny thing (not really) about the whole thing was, was that my cataplexy didn't kick in until the car was stopped, and I was pulled out. I hit the wall TWICE and was calm, but as soon as the car stopped and filled with smoke I paniced and just went limp. Lucky for me though, a lot of people stopped to help.
I guess the whole point of that rant was, no matter what, you will get into an accident. But just because someone has Narcolepsy, that should automatically be to blame for it? I think not.

#46 echothat



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Posted 05 January 2012 - 08:51 PM

I will not be telling the DMV anything. I am a careful driver. I'm 45 and have had only TWO chargable accidents in 31 years at the wheel. Neither was serious.

I know my limits and manage my fatigue.

#47 kyethra



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Posted 10 December 2012 - 09:45 PM

I was in a serious car accident back in 2006, and my license was yanked as a result. I either blacked out or fell asleep or something... ANyway this prompted my neurological evaluation. We started it that summer and then when I got married in August of '06 and put on my husband's insurance I had a sleep study within a month or two. The reason I hadn't had one before despite a REM disorder or problem being suspected was that my student insurance wouldn't cover it. So my new insurance did and it was narcolepsy. I did not drive for three years. I spent time getting around using the bus, having my husband drive me, etc. But about a year after my dx, I started on Xyrem. That, plus provigil did really well for me so after about a year on both I did the sleep study plus wakefullness test and I got the forms filled out so I could drive. I had to have it approved by the medical board of the state. And then I had to take written plus driving test again (I dragged my heals). SO now I drive And I feel confidant and pull over if I do not. I haven't had it renewed yet, it will be interesting to see what that is like.

#48 dormir



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Posted 10 December 2012 - 10:17 PM

To the OP:

I'm so sorry. Did the DMV let you have your license back?

#49 keith_harper



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Posted 24 January 2013 - 04:55 PM

I almost drove into a brick wall once (before I knew what was wrong with me). It scared the hell out of me, and I would attempt to alleviate drowsiness by drinking copious amounts of coffee or opening the window while driving. But without understanding the root cause, it was difficult to say the least.


Now that I know how to solve the problem of drowsiness while driving, it's manageable. I stop and get coffee, open the window, or take methylphenidate (SR version). Living in New York, I rarely drive anyway, but as others have said, you have to assess yourself and figure out what works for you.


I would not tell the DMV personally - the general public doesn't understand narcolepsy to begin with, so I would expect the DMV to always err on the side of denying your license.

#50 NightinPhilly



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Posted 05 December 2013 - 09:51 PM

I would not tell the DMV - I have never caused an accident although I have been hit twice by inattentive drivers. 


On the question of whether to drive with N or not, I will say I feel like that's incredibly personal. You know your limitations and you know your particular N symptoms. If you feel you cannot manage them safely on the road, don't drive. Right now, my symptoms are not so serious that I would worry they would impair my ability on the road. After my diagnosis I waited several days to see how I reacted to the medication (I'm fortunate enough that I can walk to work). But even before I was diagnosed if I ever felt tired on the road I pulled over somewhere safe until I felt alert enough to continue. 


I hate to say it but I see way more distracted drivers on the road who probably don't have N - on their cell phones, texting, reading, reaching into their passenger seat, doing goodness knows what but paying attention to the road. All of those activities are way more likely to get you into an accident than N - it makes me nervous sometimes to drive. 


Since the general public doesn't really understand N or spectrum of symptoms PWN might experience I wouldn't trust that someone at the DMV would exercise appropriate judgement on my capabilities to drive.