Narcolepsy and driving

Add new topic

This topic contains 35 replies, has 9 voices, and was last updated by  mowyp 3 months ago.

Viewing 15 posts - 1 through 15 (of 36 total)
  • Author
    Posts
  • #13642

    pingpong
    Member

    I just remembered that when I left my neurologist today and he said that if my blood pressure stayed high that I might have to go off the provigil to see if it is affecting my BP, then added as I was going out the door. “That means that you won’t be able to drive.”
    I wasn’t fast enough in brain power to turn back and ask him what he meant. If I am diagnosed with narcolepsy and am not on medication will I not be able to drive? Or do you think that taking me off the provigil will have an effect of my driving? (I have only been on provigil for 4 days.) I will ask him on Monday when I go back to office for BP check. Any information on not being able or allowed to drive would be appreciated. I do not normally have trouble with driving unless it is long distance and I don’t do that. My employment with a major airlines allows me to fly.

    #89957

    sleepymoon
    Participant

    EEEEEhhh! I think now is time for a second doctor’s opinion! hmm. Did you positively rule out all other possible causes of high blood pressure? And what about decreasing your dose to an ineffective amount? I know that sounds ridiculous, but then your doc can’t say “you’re not medicated”. If you drive well normally, or you don’t drive when you don’t feel up to it, then your doc should respect your judgment. He has to notify the DMV if he thinks you are driving and not safe to drive. They can try to suspend your license. There are ways to appeal it. But if you have a clean driving record and have not proved yourself any more dangerous than any other driver out there, then there is no reason for your doc to worry. I always assure my multiple docs that “I don’t wanna die!!” And that if I feel sleepy, I sleep instead of drive. And I do. It happens rarely, esp on Provigil.

    But if your doc is jumping the gun a little bit, I suggest you fly to California and visit with my wonderful neurologist. He seems to be on my side and pretty tuned in to what life is like for us.

    I’m sorry you have to go through this added stress. It is a question we all have to face, but it’s a lot easier to face it if you feel it is your decision, and not in the hands of a doctor who does not care.

    Incidently, because I truly trust myself to make good decisions about driving, I always say “NO” when anyone asks me if I have trouble driving or fall asleep at stoplights or whatever.

    The absolute truth would be that I have fallen asleep at stoplights. But that was early in the morning after 2 hours of driving my exboyfriend to his job and back when his car broke down. I did that for 4 weeks. I started dropping him off, then driving around the corner to Jack-in-the-box to sleep in the shady parking lot. I was waking at 4am to do this. Who wouldn’t need a nap? My average nap was 15 mins, then I was good for another hour.

    I have had dreams that I swerved off the freeway and ran into a ditch. THAT really scared me. And my pastor at my church. He was preaching and I nearly fell off my chair right in front of him, holding an invisible steering wheel in my hands as I tried to swerve back onto the road. But that was just a dream. Hehe. Since then I have avoided church. I enrolled in a Christian college, in a bachelor’s program that is mostly interactive, so I’m doing fine. heh. Slept for 45 mins yesterday on my laptop…I wonder if there is a special cleaner to get make-up off the keypad? Heh.

    Anyways, do what you think is best for your situation. Get all your facts in order and demand another appointment with your neurologist. If he is busy, ask for another neuro in his office. Sit down, tell him, “Last time I was in here, Dr. So-and-so flippantly remarked that I would not be allowed to drive, and I just wanted to discuss this to make sure we are both on the same page. Dr. So-and-so is a great doctor who’s opinion I value highly. I appreciate how much he has helped me so far, but his schedule was booked up today and I wanted to see someone as soon as possible.” Then you start with some “If…..then….” questions. “If my driving record is clean prior to Provigil, and the reason I came here was because of sleeping at times when I was not driving, then does it make sense that I should not drive when I stop taking the Provigil? I am so confused.”

    OH….another good tip is to make sure your appts are 30 minutes rather than 15. because 15 is usually you waiting for 10, flirting with the nurse for 2, then 3 mins with doctor. They write so sloppy because they are already in the next room before they tear the Rx slip off their pad and hand it to you. Otherwise they would smash their fingers. So a 30 minute appointment should give you at least 6 minutes of actual dialogue. That’s 1 min for greetings, 2 mins to look through your chart (I always get nosy and ask to read the records myself), and 3 mins to interrupt each other with concerns and dispell misunderstandings. 😆 If you’re lucky, you’ll get an extra 2 minutes if you ask some question that leads right up to that doc’s favorite subject.

    You gotta work the system if it’s gonna work for you. But please bribe responsibly.

    (I wish I was more than half kidding).

    #89958

    Jared Lindo
    Keymaster

    You dont want to wake up with someone under your car, in someones bedroom, a child care centre ( 69 year old guy had a TIA while driving went through a childcare centre – 2 children dead , 2 burnt under the car but after a year they still struggling with burns healing and deformity.

    We are bound by the rights of others safety and medication allows us the privilege to drive.

    Whether the doctor says you cant drive without medication and you drive or you choose to drive without medication because you forgot to take it is the same.

    Once diagnosed with Narcolepsy or IHS you lose your right to drive without medication.

    Cant have it both ways. Support and help with a condition and do risky things like driving, flying and using mechanical equipment without medication where people can get killed or hurt.

    ( and yes I know those very large truck drivers possibly with sleep apnea taking drugs to stay awake )

    There is very little balance in driving with health issues.

    Not fair. Of course not for the person in the wheel chair or a father or mother who have to raise their children alone because they lost their wife or husband because I or someone with Narcolepsy thought it was my right to drive regardless of my condition and chose not to medicate.

    Once diagnosed you are accountable and you will go to jail if you kill anyone. The doctor cleared himself of any repercussions of you disobeying his directive not to drive.

    Even if its not your fault and your found not be medicated they will still lay some blame.

    Its not worth even thinking about driving without medication. No one will support you and the ramifications will be horrendous. But she or he shouldnt have been driving, the doctor told her or him not to drive etc etc.

    Just not worth starting the engine.

    Why didnt you ask for something else like dex or ritalin. I had similar probelms and went dex one day and provigil the next – dex in the morning provigil at night. Your right to drive was taken away by not being prescribed another medication.

    What happened there. Call the dude up and ask him for something as you need to drive.

    No Provigil cant drive is not assisting your condition. What about your EDS regardless of your right to drive.

    #89959

    pingpong
    Member

    Mr Mango……… After I thought about it, I wondered if that was what the doctor meant. I am new at this………..I figured the rules changed after diagnoses.

    I have driven since I was 16 and had narcolepsy since I was 14. So spent all my life driving as a narc. without treatment. I now drive to Mexico from Tucson, 60 miles and 120 to Phoenix round trip and have no trouble. But on 911 I had to drive for days from Seattle to Tucson to get back to work for American Airlines. I made many stops and went to a motel at dusk to be sure that I stayed alert. The excitement on the talk shows and news on the radio kept me hyper enough that I felt that I dealt more with boredom of sitting more than fighting sleep. But I prefer to leaving the long distance driving to someone else. I just fly where I want to go. Sometimes someone invites me on a road trip……but they drive. I will prepare myself to be driven around if that happens.

    Thanks

    #89960

    pingpong
    Member

    Mr. Mango,

    Didn’t lose my rights to drive yet. He said if my blood pressure doesn’t go down, he may stop the provigil to see if my pressure goes down. I get my BP checked next Monday and am checking it myself until then.

    I am taking an antibiotic for inflamed tendon on my foot. I asked if that med or the combination of the two could be the culprit? He didn’t seem to think so. I would like to stop the antibiotics to see, but my foot is just beginning to feel better.

    I will discuss it more with him when I get my BP checked.

    What happens if I am unable to tolerate any of the meds? To date there are very few meds that I do tolerate for anything. I often endure horrible pain because I can’t tolerate the pain pills. I am suffering nausea to take the antibiotics for my foot. (Better than the pain). I have always worried if one day I might need medicine and there would be none I could tolerate. Hope this isn’t the time.

    #89961

    Jared Lindo
    Keymaster

    Interesting I have alot of problems with medication. I know you drive safe its just those times when we go some where in our minds and come back not knowing where we have been is the danger.

    No one wins in a fatal car accident and mostly it is an accident. But they will fry anyone as an example if that person doesnt show a duty of a care in the publics opinion.

    Good luck. I find dexamphetamine not a problem. But ritalin and provigil bad for B/P.

    #89962

    sleepymoon
    Participant

    Aw Pingpong, I have a real hard tme with meds, too. Antibiotics last March really did a number on me. I had a long visit with my OGBYN yesterday and I asked her if antibiotics affect the enzyme production or something in the stomach because here I am in May and still hardly able to digest my food. She said Yeah, it kills all the flora in the stomach that produces the necessary hydrogen peroxide and that it can take months for it to grow back into the colony size your body needs.

    In my case, I was on antibiotics because I had developed multiple infections when I was on a birth control pill that was too much hormones for me. It caused overgrowth of bacteria and also increased my blood pressure. My neurologist’s nurse practitioner said the many symptoms that I had sounded like my body was trying very hard to detox. That was my feeling, too.

    Due to the nausea on the birth control, and then extreme nausea the antibiotics (Cipro and Flagyl), I lost between 8 and 10 lbs. I am still working hard to gain it back. I weighed 103.5 yesterday. So now I’m feeling much better but hard time digesting foods, so I’ve been eating mostly fruits, veggies, yogurts, chocolate (just because), and other things that are easy to digest. If I eat something bread-like or with meat, I get horrible constipation which later turns into what my OBGYN called “explosive diarhea”. She said to go to the healthfood store and by lactobicilli acidophilis and take a lot of it for a couple months to help my stomach grow the good bacteria it needs so I can digest my foods.

    Also she told me to take omega 3 fatty acids and some other things that it sounds like my body is desperate for. I will post a separate thread, since this thread is about driving. But I just wanted to say there are ways with coping with side effect from antibiotics. How long have you been on antibiotics? What’s wrong with your foot?

    I agree with Mr. Mango. He is absolutely right that the driving issue is a matter of life and death, not just of you, but of other people’s lives. So the issue must be carefully handled. It sounds like you are aware of your limits and drive responsibly. I think it’s important to mention that while all of us bear the label Narcolepsy, we vary very much in range and ability to cling to reality.

    I consider myself to be on the “lighter” side of N. I don’t have cataplexy, as long as I’m on Provigil the hallucinations have stopped and I’m awake when I’m awake. Even before Provigil, I could drive safely. Never been a driver in an accident. I’m very sensitive to my environment and my peripheral vision is amazingly good. In the car I turn up my salsa music and it sorta pumps me up because I wish I was dancing. I tend to get sleepy at certain times of the day. so I avoid driving at those times if I feel I will succumb. And here in southern CA, there is no deserted highway. Everything is city, so I can stop anywhere.

    I will say that when I went off Provigil for a 2 wks for my sleep study, I felt pretty lousy. Foggy!!! I drove around the corner from my house and was surprised to find that my body was very automatic and my brain felt like “Hey, what’s going on down there?” While driving on this one very short trip, at a stoplight I had to do a doubletake to realize the car in front of me was pretty close and I better ask my foot to put on the brake. After this experience, I STOPPED driving and asked my very nice roommates to take me anywhere I needed to go. They were more than happy to oblige. That experience scared me. But it was more from the sudden stopping of Provigil than from anything else. Previously, on weekends without Provigil I always slept till noon or whatever. Now I take just half a dose on weekends if I am planning to relax.

    For me, the lack of Provigil affects my speech more than my driving. I up or down my meds to the amount of verbal skill I need that day. Heh.

    Mr. Mango is not right that “being diagnosed with Narcolepsy means you can’t drive without medication.” It is entirely up to your doctor to assess your condition and ability to drive. But it is not right for him to “mention it in passing” and act like you both know what he’s talking about. What the heck is that? He can recommend to you not to drive while off meds, but he has not even discussed the subject with you, so he can’t make the decision without more input from you.

    And truth be told, in the U.S., driving itself is not a right that anybody has. It’s a priviledge that most people earn. Right to pursue happiness does not mean pursue in a car at high speed, just means pursue. Heh.

    Take care and good luck. If you drive, drive responsibly. Also, for me, antihistamines really help me stay awake better. Prior to Provigil, that was the only thing that helped.

    #89963

    @Mr Mango wrote:

    We are bound by the rights of others safety and medication allows us the privilege to drive.

    Whether the doctor says you cant drive without medication and you drive or you choose to drive without medication because you forgot to take it is the same.

    Once diagnosed with Narcolepsy or IHS you lose your right to drive without medication.

    May I remind you, that this is the opinion and experience of only one PWN, not the law or a fact in the US. Laws vary from state to state, but most states do not require a PWN to be medicated in order to drive. If you are a safe driver, you are a safe driver. If you are an unsafe driver you are an unsafe driver, regardless of meds or a dx of N.

    I would gladly put my ability to drive safely unmedicated up against many of you who drive on meds. In fact, the worst experiences I had driving were while on Provigil because of all the mental and visual perception impairments it caused me.

    I have had N for at least 28 yrs and have never had an accident, a run off, or any near misses. I simply do not drive when I am unable to do so safely and accept that my driving range is very short. Currently not more than 15 minutes total trip.

    Please remember that all PWN are different and the experience of one does not prove to be the experience of all. Whether or not one medicates is a personal choice and is to be considered based on over all effectiveness of the meds vs the side effects.

    #89964

    fanjoy
    Member

    As for driving, I agree with the replies I’ve read so far. Driving is touchy subject and it only takes one second for someone to zone out, nod off, fall asleep. I live in Maine and when renewing my license years ago one of the questions that was asked was do you have Narcolepsy? I told the truth and my license was suspended immediately. My doctor had to fill out paperwork and now my license is restricted. I am not allowed to drive if I am not taking my meds. I am disabled because of my narcolepsy, so I don’t have to drive to work. When I did work I had to take medical leaves of absences if I changed meds or doses.

    Being someone with narcolepsy, I totally respect that I have restrictions and take it very seriously. It takes people who do not respect their privilege to ruin it for others. There are people out there who think people with narcolepsy should not be able to drive at all. i am only 30 years old and enjoy being able to go places by myself and would like to it to stay that way, so please respect your license and find out the laws in your state.

    #89965

    sleepyrn
    Member

    With your high blood pressure, there can be may causitivr factors. First, how high is it? If it is not dangerously high, you have some time to check some of the other factors. Infections in themselves can cause high blood pressure, so can pain. So first I would wait until you got that all cleared up. Usually Antibiotics are not the cause. Neurologists alot of the time don’t look at the whole picture. Also a very common cause of high blood pressure in the Dr’s office is fear or stress of being in the doctors office. I would buy a blood pressure cuff and try some experiments. The old fashined cuff and stethescope are more acurate, but the machines are cheaper and would probably work well for your case. You can find them at Walmart or any drugstore. Log all of them in a book to show your doctor. Take it in the morning before you take your meds and then an hour or two after, I would then take it several other times during the day. Get good info before giving up on this drug because this one seems to have less cardiac effects that the other options. Good luck. As with driving, from what I gather the laws vary from state to state. Check up on your state. Let us know how your BP is doing 😀

    #89966

    Jared Lindo
    Keymaster

    Automobile crash risk is increased (not unexpectedly) among people with untreated sleep apnea syndrome (SAS) and narcolepsy. The proportion of crashes is higher for people with untreated narcolepsy than it is for people with untreated SAS. However, because the latter syndrome is more common than narcolepsy, the absolute number of crashes is higher for those with untreated SAS. As of March 1994, only 4 states in the United States (Maryland, North Carolina, Oregon, and Utah) had guidelines for narcolepsy, while 2 had guidelines for both narcolepsy and sleep apnea (California and Texas

    Well I was surprised by that. Certainly changed my view on how USA view Narcolepsy and driving however I remember when I was there some states allowed no seat belts and no helmets for bikers.

    Different perspectives

    #89967

    Anonymous
    Member

    In Australia you are required to notify the authorities of the department of transport if you have been diagnose with sleep apnea, Narcolepsy, diabetis etc

    You are on a data base and have to do an annual examination

    Failure to do this and be involved in a car accident where someone is killed will see you in jail for years.

    Its not about the person but a way to make the roads safe for others. .

    It was an assumption of mine that the rights of the American public to drive their families around in safety were greater then the individua’s right to drive. That is not a smart remark but an assumption from my experience with being in America.

    You handcuff people routinely and your laws incarcerate people over what we call minor crime.

    Serious crime is dealt with badly as well here.

    eg: youngman drugged out too max runs over 8 year boy and kills him and keeps going – goes to court and walks free because he was not accountable as he didnt know and something to do with drug testing minors, guy shoots shopkeeper in eye and he loses his eye – community service was given ( thank goodness when the shopkeeper went to what you call the governer he reversed the decision.) still only got a few years

    The assumption comes from USA dealing with crime more appropiately and assuming if Australia is going to go heavy on drivers the USA is already there.

    California takes thousands of licences away a year from diabetics so its not about suggesting irresponsiblity . Narcolepsy is probably not understood as well.

    Australia is as big as USA and has only 7 states where you have 50+ states.

    Word would get around faster and understood better with 7 state leaders then 50 state leaders or more.

    New York however is going real heavy with sleepy drivers with new laws to be introduced, sleep disorders or not your in trouble in a fatality if your found to have fallen asleep.

    Depends what state your in I suppose. Legally though how safe are you driving around the USA and your involved in a fatality. Your unmedicated or hide your condition from the authorities.

    You have killed a child or a family of 3, young married couple or caused a major accident costing millions of dollars in time wasted, cleaning up and damage to vehicles.

    Regardless of not being allowed to drive or not because you have Narcolepsy would they hang you out to dry if you caused the accident.

    What I am saying does it free you of responsibility when there is no regulation on Narcolespy.

    The other side of the coin is if I kill someone or people driving my car I cannot be charged and then jailed if I fall asleep driving.

    Wait for it. I would have to have amphetamines in my blood and be registered as a Narcoleptic driver. The doctors would wear the responsibilty for approving the licence

    Rules or no rules is it legally safe to drive untreated as PWN in the USA . Forget the moral side of it. Insurance costs and punishment is my interest.

    #89968

    Anonymous
    Member

    That is a good question for a PWN visiting the USA or any country

    Rules or no rules is it legally safe to drive untreated as PWN in the USA . Forget the moral side of it. Insurance costs and punishment is my interest.

    I dont want opinion but facts. As they say the fine print. Because in the end opinion is not going to help when your sitting in court being charged with murder.

    I read in on the internet it was OK and not against the law is not a defence.

    Can a PWN be charged with reckless endangerment or whatever term for driving without medication if they go to sleep and cause a serious car accident.

    I am interested.

    #89969

    pingpong
    Member

    Thank you for all your input. I am going to check Arizona laws on Narcolepsy. There is so much to learn.

    My blood pressure has always been about 120/78 but this last year, on occasion, it has been 140 at the doctor’s office. They suggested, “white coat syndrome.” The other day it was 160 when the nurse took it, then 148 when the doctor checked it. The nurse took it again before I left the office, but AFTER she removed the acupuncture needles and it was 170.

    I got a machine at Walgreen’s and it was staying about 159/75. At the neurologist’s office it was 148. I went straight home and checked it and it was 159/79. I then took it to my neighbors and checked my BP with his machine and mine for comparison. They matched.

    This morning it was 147/64 and tonight 154-72. I am sorry if I misspoke and said I am taking antibiotics, I am taking anti-inflamatories for inflammation in the tendon on the bottom of my foot. I decided to stop taking them last night. Can’t help but wonder if that is why it is a little lower today?????

    I only take estrogen, thyroid, and fosamax for other health issues. I love the provigil, I

    #89970

    sleepymoon
    Participant

    Ahhhhh….so you kinda already were watching out for high blood pressure and your doc was worried Provigil was aggravatingit….well that makes sense, too.

    Also….another thing good to know is that Provigil takes about 2 weeks until your body adjusts and is able to excrete it from your system. I know you haven’t on it long. After more time, it may not affect you quite as strongly. That would be common.

    Anti-inflammatory pills….I believe that can affect your blood pressure. Did you know that fatty acids can have a role in that too? Seems like we hear more about “good fats” and “bad fats” lately. Omega 6 and 9 fatty acids are mostly the kind of fat we find in our diet, according to what I’ve read and also what my OBGYN said on Tuesday. And those are the “bad fats” or “transfatty acids” which our body uses to produce inflamation. Omega 3 comes from fish oil and flax seed and a few other places. My doc on Tuesday told me that omega 3 are used for all kinds of important functions and balancing your fats can really help your body work more properly. I have inflammation all the time now in my right arm, and I’m hoping that taking omega 3 fatty acids will benefit me. My doc can’t prescribe supplements and insurance can’t pay for them, but my doc did tell me where to get them.

    She said there is a good book about them….The Omega 3 Connection, by Andrew Stoll, MD, She told me the best ones to buy are at http://www.omegabrite.com and that I should start with 4 capsules/day. I told her I was already somewhat aware of the benefits and have been taking fish oil, but my botle says “Omega 3/Omega 6”. She said that website has pure filtered (gotta look out for mercury in fish oils) omega 3, and that they package them in nitrogen packets so they don’t get rancid. She recommended I buy 2 month supply…said it’s kinda expensive but if it helps me, it is well worth it. That is something you might research and ASK YOUR DOCTOR ABOUT, 😉

    okay…I’m reading my doc’s scribbles about “DIGESTION/PREVENTION OF INFECTION” and she wrote “*lactose-free acidophilus” and the brand she recommends is Bifidus…she said to take it for a minimum of 4 weeks.

    Also for me, looking at my hormone levels (my LH and FSH were not balanced when they should have been), she said that’s odd. We talked about some things I noticed that help me and she supported my observations. She recommended i take lutein supplements and an ionized mineral supplement (which I already have). I suffer with bad cramps and exhaustion before my period and she says magnesium and calcium help relax smooth muscles. And antioxidants are really really helpful for inflammation problems, too, I’ve heard.

    So my recommendation is that you have your doctors take a closer look at your hormones, your diet, your chemical balances in general, and maybe your doctor can figure out what it is you need to prevent problems and heal. Obviously your body is not the same as mine, so maybe what I need is different from what you need. I hope you have a doctor who can talk about supplements.

    Why do you take estrogen?

    Heh…I am so skinny now…my OBGYN says if I gain a little weight then my fat cells will produce estrogen naturally. I said, yeah, I know I feel better when I weigh about 12-15 pounds more. So I’m trying!!! Also, she suggested we test me for heavy metals, like mercury toxicity. So I had that bloodtest on Tuesday. (not urine test, because if i have antigens that won’t let me excrete it, then the urine test would be negative because it is trapped in my body). It’s funny to me because all my research for all my other medical problems has led me in circles around mercury poisoning. My doc said she had a friend who had been eating a lot of fish to get the fish oils, but that he developed what seemed like a sleep disorder. She said it is worth checking it out, because if that is my problem or part of my problem, then that is somewhat reversable.

    ACK! I gotta run through my shower and off to work. I’ve been reading posts here in the mornings to help my brain get up and running.

    Again, I wanna emphasize so nobody hires a hitman for me, all this info I just posted about me is about ME. I am not insinuating that you have the same needs. But I am definitely proposing that you find out what’s chemically going on in your own body (through your doctor) and see if there are natural ways to treat it. More meds meds meds can really be hard on your system.

    TAKE CARE!!

    Good luck to you!!!

Viewing 15 posts - 1 through 15 (of 36 total)

You must be logged in to reply to this topic.

Pin It on Pinterest