I am new to the site but have so much i want to get off my chest about my narcolepsy. So I was diagnosed at the beginning of my freshman year of high school. well I didn't have to worry about the whole driving with my disorder because I didn't have my license yet. But then my junior year came around and I had gotten my license that summer. And my mom was letting me drive to school my first day. Well with my medication I take, I would take my 200mg provigil in the morning, and then around lunch take it again. Well I was driving home from school, and happened to fall asleep behind the wheel. I hit a tree and totaled the car but was perfectly fine. So of coarse no more driving for me after that. And it was back to the doctor for me, I got new medication that I would take before I would drive.
Now I am a sophomore in college. And live at school which is about 45 mins away from home where my family lives. I am on the softball team here at my college and we are in the off season, and everyone likes to go home on the weekends, cause there isnt shit to do in this little town. But my mom wont let me drive home, I dont know if she thinks i am going to get into another accident or what. But my grandparents have been driving to my school and meeting me, then following me back home. Which they tell me that I have been doing great with. Which makes me happy. It is just my mom, she doesnt want me making the drive. I just am looking for anyone that has been in a situation like this, what you have done. Or really anyone that has any thoughts to add.
I count myself lucky that I am still able to drive with my N. One of my very first concerns (it almost sent me into a panic) when I was diagnosed, was is this going to cause me to lose my license. Because I personally have had no episodes while behind the wheel, that is not an issue for now.
It is interesting though because I was only diagnosed about 6 weeks ago, but it is suspected that I have had N since I was a teen and it wasn't properly diagnosed. I am now starting to understand a lot of my behaviors while driving. Unknowingly I created coping mechanisms for myself so that I didn't fall asleep while driving. Perhaps there are things you can find that will help you? You can practice these whIle your grandparents are following you and then present your new strategies as well as the report from your grandparents to your mom and see if that eases her fears. And of course, promise her and yourself (for your own safety) that if you ever feel too sleepy to make any drive, no matter how far, you'll pull off the road and take a short nap or you'll just stay home. No trip is worth your life.
So this is what I've found that works for me. Of course, you'll have to see what works for you. (Keep in mind, I am in no way trying to advocate distracted driving. My coping strategies to stay awake actually help me focus on the road better and keep an eye on traffic and what is going on around me. Please please don't do something behind the wheel that may keep you awake but doesn't allow you to pay attention to your surroundings!) My daily commute to work is 35 minutes. There is a morning radio show that I enjoy listening to. They discuss all kinds of things from serious to funny and I find listening to them as I drive helps engage my brain as I am waking up and gets me thinking more clearly, which allows me to focus on the road better. And it doesn't distract me from the road. On my way home from work, I typically call family or friends to catch up. (I do this hands free only as that is the law in both states I am traveling through to get home from work). Personally, I have never fallen asleep while talking on the phone. Talking to someone as I drive helps me stay awake as I am heading home at the end of the day, exhausted. This is the harder drive for me by far as my medication is no longer working at this point. If I don't have a call I can make, I'll listen to music and sing along. The singing is key for me because just listening to the music alone is not enough. I need to sing so that I am actively engaging my brain in something.
I have done these things for years, probably almost as long as I have been driving and I never really knew why. Now it's starting to make a little more sense to me. It's how I've coped with something I didn't even know I had.
See if there are things you can SAFELY do (that do not break laws in your state or country of course) when you are driving. I've seen people post that they put a rubber band around their wrist that they can snap if they start feeling sleepy. And talk to your mom. She's going to worry. That's her job. But you need your independence and to lead as normal of a life as possible. You've done great with your grandparents following you. You can come up with some coping skills. And of course, don't take the risk if you are too tired. It's ok to pull over or wait an extra hour to leave or maybe just not go at all. Telling your mom you understand that may show her that you've grown up a lot and understand the responsibilities of driving with N in a way that you couldn't before your accident.
Hi Lauren, I'm into my 2nd year of knowing I have N. and I've had 2 wrecks because I went to sleep behind the wheel driving. The last time was only 4 months ago. I looked into Unite Way and other agencies that offers drivers and at this time I did find someone in my area that takes me to doctors appointments and bring me home. I was almost ready to turn in my licences but my doctor said it might be to soon for that. Being VERY STRICT with my myself and following what the doctor says I can drive again. However, if I have another wreck I will lose my license for good and if I kill someone I could go to prison. So before I drive I ask myself do I really need to go there and do I feel tired in anyway. If I say, 'It can wait until I've rested, or I don't need it that bad today I don't drive. It is a very large responsibility specially for us with N and know it. And it is very scary. And it is very restricting not being able to jump up and go. I've been driving for 45 years and those are the only 2 wrecks I've had. It's just HARD.
Lauren, Thank goodness you were not hurt. I was not able to successfully able to manage my N. with Nuvigil and 1 Adderral at lunchtime and dr. threatened to end my driving. Meds changed to 200MG. Provigil in AM and 100MG again at noon. I also drink 8 oz. cans of Diet Coke as boosters at 8:00, 12:00, & 3:00 and I am managing pretty well.
Once I fell asleep at a signal light and rolled into a truck...only a sm. scratch on his truck. Another time I was driving so slow that a policeman stopped me only.
You are in my thoughts and prayers. Best wishes as you regain your driving priviledges.
Thank you guys so much for your replies, I’m loving this sit more and more each day. I really wish I had a friend In my town that has narcolepsy so we could talk on day to day bases.
Hi Lauren: I don't think I have already replied to your post. I am not in the situation that you are in as in my Mom doesn't me to drive as I am 57 years old and my Mom is deceased. I am the one questioning myself if it is OK if for me to drive. I have not been diagnosed with Narcolepsy but experience many of the same symptoms that Narcoleptics do. At present my neurologist is telling me I have epilepsy. I haven't had any episodes of falling asleep, losing consciousness or muscle tone since September which would qualify me medically able to drive in March, but ethically I wonder if I should. I feel so shut in, not being able to drive but I have had 6 car accidents where I have either fallen asleep, lost consciousness and lost muscle tone. At present I have had 6 car accidents, 3 of which I've had to be hospitalized. Thank God, I haven't hurt anyone else. I couldn't deal with doing that, so here I sit instead of being out and about. I feel your pain.
I take Provigil 200 mg at am and 100 mg at noon. To booster this I drink 3-4 cans if Diet Cokes 8 oz,. This allows
me to work in the afternoon without falling asleep and to drive. I have N., Chronic Anemia, Lupus, & Sjorn. Synd.
I get Procrit shots wkly. for my red blood count otherwise......I would surely not be able to drive. I fell asleep one am and rolled into a truck (barely a scratch), he was mad but said fine just go. I have been stopped for driving too slow as well.
When I told my dr. then she changed my meds to what I take above and threatened to take away my lic. I see Dr, again this Fri. and hopefully all is well. I understand how you feel. You have gotten some good sugg. from others. Best of luck. Hold fast.
I know I replied earlier Lauren, and I do drive without incident. I just wanted to stress, after reading other replies, how very big of a responsibility driving is. When you get behind the wheel of a car you take on the responsibility of not just your safety, but the safety of those around you. This is why we obey traffic laws, do not drive after drinking etc. Driving with N is an even greater responsibility. We know that we have the potential to fall asleep behind the wheel and cause an accident that could injure or even kill ourselves or someone else. It is so important that we take this responsibility seriously and only get behind the wheel if we are capable of making the drive. If you are too tired and fear you may fall asleep, stay home. No trip is worth your life. If you feel that you may start nodding off while driving, pull over as soon as it is safe and let yourself rest. Listen to your body. It knows what it can handle. I think that people with N can drive responsibly (on an individual basis of course, we are not all the same) but we have to listen to what our bodies are telling us. It's easy to get caught up in what others around us are doing and can do but the reality is that N makes certain things different for us. Driving is one of those. I drive every day but since my N was diagnosed I have become much more aware of the potential consequences. I'm not trying to say you shouldn't drive, I just want to remind you how important it is to be sure you can drive safely before getting behind the wheel. You were so lucky after your first accident to not be seriously hurt. I am sure that is not an experience you want to repeat. Your mom won't always be able to make the decision on driving for you so just make sure you check in with your body and listen to what it tells you so that you can keep playing softball for a long long time :D
Can you tell us what medication you take before you drive? I take Ritalin/methylphenidate for any long drive, and if I'm sleep deprived I stay home. I wasn't diagnosed in college, but one time I drove home to see my parents and it took me 5 hours to do a drive of 1 hour 30 mins. I had to keep stopping to sleep. Otherwise I would have crashed.
The medication that I take before I drive long distances, is Provigil. I have only stopped and pulled over a couple times when I was driving long distances. A lot of times, if I am driving, i like to bring a friend that I can talk to, and if I do get tired, we pull over and switch. One of the things that I thought about was when I get older and have kids, I dont want to put them in danger with my narcolepsy. Any thoughts on that?
Carol said:
Can you tell us what medication you take before you drive? I take Ritalin/methylphenidate for any long drive, and if I'm sleep deprived I stay home. I wasn't diagnosed in college, but one time I drove home to see my parents and it took me 5 hours to do a drive of 1 hour 30 mins. I had to keep stopping to sleep. Otherwise I would have crashed.
Yes! First worry about yourself and the responsibility you have to your present family (you included) and to others on the road and their families. You are ultimately responsible for every driving decision you make.
State laws vary, so ask your doctor about legal requirements, if any, for driving with your medical condition and again about medication for driving. Soon you'll know more about this than anyone, so keep us informed :). This is always a very important topic to discuss so thanks.
I take 40 milligrams of Ritalin 200 milligrams of caffeine to 400 milligrams can I do an e cigarette pipe with the nicotine level at 18 to 24 grams my narcolepsy is severe the highest recommended daily dose of Ritalin is only 3 pills a day and I take every bit of 5 to 6 pills a day along with about 900 milligrams of caffeine has been my average and I have not calculated how much nicotine I’m actually smoking i know i smoke a high dosage through the e-cigarette I’ve never been a smoker and don’t care to smoke true cigarettes it’s mainly when I’m driving it gives me something to do with my hands in my eyes and of course it gives me stimulation I use flavors that are strong to the brain like cinnamon and menthol along with some other stimulations that I do is wearing a cowgirl hat and having pins and Yuri on it that jingle I double pierced my ears and I will purposely wear earrings that tap together in I wear uncomfortable binding latex clothing underneath my clothing so that I’m uncomfortable I listen to extremely loud music with lots of bass I have noticed the vibrations in the base music can stimulate me if I’m driving in the car by myself or truck and if at any given time I start feeling sleepy I immediately find a safe location and and pull finding your local police department Fire Department in parking in their parking lot I go into a bank 4 blade the bank branch that I bank at i sat down in the customer service lobby I don’t sign in my local bank the manager knows that I have narcolepsy and I will at least notify her I need to close my eyes for a little bit and need a safe haven . They don’t seem to mind at all they’re actually very accommodating offer me water or coffee I put my cowgirl hat over my face in my purse under my feet and I close my eyes I put my cowgirl hat over my face in my purse under my seat and I close my eyes I put my headphones in my ears and I do my medication along with calling someone and letting them know that you’ve just taking some more medicine or you’re getting some coffee or getting out of your vehicle and taking a walk to the bathroom to try to stimulate yourself I will also step outside of the vehicle and do some jumping jacks yes I know it look funny country girl in a cowgirl hat doing jumping jacks in a parking lot but it for everybody safety and the last resort is just let your body take a power nap I have an application on my phone that’s called power nap it was free to download it’s a 15 minute power nap of meditating unless the Ritalin and caffeine has kicked in but the phone call to a loved one that knows I’m on the road will give me a good 30 minutes as requested for a good power nap that usually does the trick and I’m back on the road feeling good as ever there is many many many things I do especially when I’m driving I have to know beyond a shadow of a doubt I am NOT putting anybody’s life at risk I don’t even want to take a chance of just nodding off for a second and hitting or bumping a mailbox because all those circumstances brings headaches to other people’s lives and my issue should not ever be a headache to a stranger’s life. And I fully understand your mom being extremely scared you are her child and a mother is never to let her child be in a dangerous situation and having narcolepsy and driving is a very dangerous situation not only for you but for others. There is many times I will not go driving by myself if I have spells through the day while getting ready to go somewhere I will request for someone to go with me my daughter or a good friend or someone if I’m having spells and no one can go with me then I don’t go it’s not worth it I very rarely let others drive me I am it I am too much of a control freak I want to dominate in control many things but with all the medicines and all the simulations that I do still there is days I cannot control my narcolepsy on those days I do not drive I periodically go through a cleanse and do not take any medicat sleep
I am a physician and realty need to drive for my work. My husband came up with a brilliant idea which I want to share with everyone. They make little devices that you put behind your ear and it is motion sensitive. Every time your head goes down as if you are about to fall sleep it gives out a very obnoxious, but effective beeping sound which of course keeps you awake. There are several types and you can find them on the internet which is where I bought mine. It works great.
As far as drowsiness during driving it is important for you to really get to know your narcolepsy well enough that you know when you should not be driving and either take a nap, take a dose of meds or ask someone to pick you up.