Driving with Narcolepsy

By Leslee_Lane Latest Activity June 24, 2012 at 5:05 am Views 1,934 Replies 16 Likes 1

Leslee_Lane

I am 28 years old and I was diagnosed with narcolepsy Anne obstructive sleep apnea. My doctor told me not I can no longer drive. I have been on a good cocktail of stimulants and the Exelon patch. My doctors won't let me drive even though my last sleep study was in 2010. I wasn't on any of the meds I am on now. My husband is about to loose his job in the army because he has to take me to my appointments once a week. How do I go about finding out if I can drive? I still have my license and I think I can drive but the doctor dismisses me when I ask about it. What should I do?

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Replies (16 replies)

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  • narco_mom
    narco_mom October 9, 2012 at 1:41 pm   

    Also I still drive myself around I have fallen asleep driving with other people in my car who are aware of my narcolepsy and none of them could even tell I was asleep I drove for about 20 or 30 miles and when we stopped I asked them who was driving … Freaked them all out but now none of them will let me drive if we are going somewhere … And now I am also a little smarter and try not to drive more the 15 min from my house by myself…

  • narco_mom
    narco_mom October 9, 2012 at 1:36 pm   

    Look into transportation help… The state i live in provides rides to and from dr apts…

  • sheepykirt
    sheepykirt September 5, 2012 at 1:44 am   

    I have never driven a car because I was diagnosed aged 12. I was never told I wouldn't be allowed to drive as far as I can remember but it getting behind the wheel of a car is not something I would ever consider doing because I know for a fact I would fall asleep and end up either killing someone or myself or both.
    I realised a long time ago that I simply don't have the right to make that decision for someone else.
    I realise the severity and symptoms of narcolepsy varies massively from person to person so I don't go round telling other nacoleptics that they shouldn't be driving, I hope that people will know their own symptoms and triggers well enough to make a good moral decision that won't put other peoples lives at risk. I often think it must be much harder to be diagnosed when you are older because you have already been driving/working normal jobs etc for years. My entire life has been shaped by narcolepsy, neither way is without great difficulty but I am often thankful, ironically, that my illness began so early.

  • Leslee_Lane
    Leslee_Lane July 23, 2012 at 8:24 am   

    I don't have cataplexy. I actually took my driving test in Hawaii and I passed. I let them know my medical condition. My doctor won't even listen to the notion of me trying to drive. Unfortunately on island there are only two sleep specialists and I have seen them both. The second said he had great respect for the other and it would be best to continue seeing him. I do think the fact that I am using Tricare was an issue as the second doctor was a civilian doctor and was taking a big hit in his normal fees that insurances allow compared to Tricare. He saw me only once. How often do you all see your doctor? He sees me only once every two months at most. At one point there was a seven month gap where he left the hospital because he was upset with the other physicians and no one could continue because there wasn't anyone that specialized in sleep disorders. After six months I finally took it to the Patient Rep and the head Neurologist saw me and " I have no knowledge of sleep disorders it is not my specialty". The one they eventually got me took four months to get in and he saw me for one visit. I really think I should be able to be seen more often. (Sorry for the rant!) Thanks for any input!

  • shakysleepy
    shakysleepy July 12, 2012 at 9:33 am   

    I still drive some but only when someone is with me because I have warnings signs that let me know when I can't drive any further. Better safe than sorry.

  • shakysleepy
    shakysleepy July 12, 2012 at 9:27 am   

    My doctor didn't pull my license but told me not to drive. It is for your own safety and the safety of others of you were to have a wreck and insurance finds out you have narco and drive against doctors orders they do not have to cover you!

  • Black Feather
    Black Feather July 12, 2012 at 7:26 am   

    Why won't your doctor let you drive? Can you get a second opinion. Doctors are good, but you know yourself what the right thing is to do. Ask the question and see what thought pops into your mind. Everyone is different in what they need. Good luck.

  • John2020
    John2020 July 3, 2012 at 10:42 pm   

    I think probably it is right, you should take this problem serious when going for a drive. If laws permit then this might not be a big problem but medical point of view must be kept in mind.

  • sleepymacman
    sleepymacman June 28, 2012 at 11:05 pm   

    cataplexy as a symptom is only reason i could see a doctor saying you cant drive. I have narcolepsy/cataplexy as my diagnosis i can not drive ever again

  • Otterbob
    Otterbob June 28, 2012 at 8:50 pm   

    I just wanted to correct something I wrote to you about your dilemma. Sometimes I forget that I'm not where you live. So do check to see what the laws are in your state and continue respond or
    NOT respond accordingly. Sorry.

  • cataylor
    cataylor June 28, 2012 at 3:33 am   

    My specialist has not told license people about my narco and I've not lied on any form… Though I do have 2 minute warning, don't drive unless necessary and know warning signs and my limits. Also where I live narco is a disability and part of disability assistance benefits is assistance with taxi expenses.

  • Stevie_SIMP
    Stevie_SIMP July 23, 2012 at 12:57 pm   

    Hi, where u from? I'm from Toronto, Canada. So what's this about taxi expenses? I have narco/cataplexy.

  • DayWraith
    DayWraith July 7, 2012 at 5:55 am   

    I need to apply. How did you start?

  • cataylor
    cataylor July 17, 2012 at 1:48 am   

    I went to WINZ - work and income New Zealand who administer all benefits and allowances on behalf on New Zealand government. They gave me list of entitlements, relevant forms and list of documentation I had to provide. NZ bit of a welfare state.

  • Otterbob
    Otterbob June 26, 2012 at 11:39 pm   

    I am not sure why your DR recommend that you don't drive. I know of several instances were narcoleptics still drive including my self and I'm 48 y.o. Here is what you do( I think he is just afraid for you) there are examples of people who drive with the diagnosis. Find them and recommend the he/ she watch them ,second, unless you have a history of traffic infractions or accedents I don't see any reason why you can't drive. People with grand mal and petit mal siezures drive all the time. You do need to be aware of situations on the road which may trigger attacks and avoid them as best you can. For example, drive during non-peak hours, schedule where you need to go when you are most refreshed, like just after a nap or in the morning. But most of all if you feel sleepy and weak…then don't chance hurting someone else and have some sort of back up plan just in case some one has relied on you to pick them up. If you have a long trip to take, just know where you are going so that if you have to take a nap along your trip you will know where the rest stops are. Every once in a while I will drive from my home to my brothers sum 200 miles away and may stop 3 or 4 times. But I don't think he could do much any way. That unless u have a history of driving and getting into accidents. Good luck to you.

  • Tracy
    Tracy June 24, 2012 at 9:39 am   

    Find out what the driving restrictions are in your state. Some doctors are required to report a patient if they deem them unsafe for driving…other states not. Also, if you feel your treatment is working for you, seek another sleep doctor for a second option and undergo another sleep study and mslt so it is in your medical records. You do not mention if you have cataplexy - if so and if it is regular or severe, that may be why your doc denies driving.
    let us know what you find out

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