Narcolepsy Support Group

I don't have an experience to adivse you based on, but I do have similar concerns for myself, so here is what I would do:

-sleep well the night before

-drive during optimal alertness hours.

-drink lots of water. I would personally avoid caffeine, because it makes me jittery. Water keeps you alert, (and the frequent need to pee keeps me awake).

-listen to lively music.

-make bathroom stops, get out and keep moving

-maybe citrus scented air freshener?

Best of luck. Hopefully that helps!

Good list of advice, GillianM!
I would only add pull over and nap if you need to.

Great advice ;-)
Whenever I drive any distance (I don't allow myself to go too long-- make the hubby drive then) I listen to techno or rock.... anything with a beat that will keep my attention or something I can sing along to.

Caffeine is the opposite for me-- without my provigil/nuvigil medication, it's all I had lol Even with my medication, some soda or green tea or something in the afternoon/early evening usually helps get me through the rest of my day.

For me it is the excessive caffeine that is the problem - if I have too much on top of my stimulants, I get jittery. A cup or two can definately help. It's different for everyone what works and what doesn't.

Something to sing along to is definately a great idea. Especially when driving alone, singing makes the trip more fun and stimulating :)

I usually chew gum, eat hard candy, or shell sunflower seeds or pistachios. Just eating and keeping my mouth busy will keep me awake. I have to drive 45min one way to school in the mornings and in my extreme tired time in the afternoon. ALWAYS pull over and nap if you feel sleepy. Its better to be late than dead!! Good luck- you can do it.

i actually wouldnt do the drive but thats me, good luck with all the good ideas people have given you.

I'm with Vonny. Why do you "have" to do this by yourself? From the tone of your post, you really don't think this is the best idea and if you don't think it's the best idea, it probably isn't.

If you're anything like me, your N, and therefore your meds, are hit or mess depending on the day. One day you may feel great on your Ritalin and one cup of coffee, and the next you may be able to drink a pot and still sleep through a natural disaster.

I zonk in the car as a passenger within 10 minutes, easy. When driving, I try not to go anywhere further than about 1/2 hour alone, and will NOT drive more than an hour. Even short breaks don't do it. I would have to stop for at least a 20 minute nap every half hour to make it for a trip like you're talking, and that's assuming the caffeine is working.

One of the problems is that long distance driving is mostly highway, which is straight, monotonous, boring stretches of nothing that lull you to sleep. Back roads that involve more concentration, are curvier, change in speed limit, have obstacles, tend to be easier to navigate longer between rest stops.

If you still MUST do this alone, plan for a LONG day. Make stops as soon as you feel even the slightest bit sleepy or fatigued. Drink whatever you need to, but be careful what you eat and when...you don't want to eat nothing and have no energy, but don't stuff yourself or you'll get sleepy from that.

Is there really no one to go with you? Maybe even someone who can't drive but who could at least be in the car with you and be alert?

Is someone driving you back, or are you going to have to do this twice?

And remember, stress can make N symptoms worse, so in all honesty, just worrying about this could make it more difficult.

Good luck, and BE CAREFUL!

The first question I have for you, is how bad is your Narcolepsy. We all experience different degrees of it. Some of us know when an attack is going to occur. Others have no idea it just strikes.

I really would beg and plead for someone to help if you must really go. How about a bus or train. Anything is better than losing your life, or worse yet taking someone elses.

I am against those who think that everyone with Narcolepsy should have their Dr. license taken away. Like I said we are all different. My father died in a car accident leaving my mother with 3 small children and 8 months pregnant with me. It is a decision I wish he would have not made that day, it has impacted all of our lives tremendously. Of course that was 46 years ago before they could diagnose narcolepsy. But I have talked to my mother and my aunts, that along with the family history am convinced he had. It wasn't worth his life (it was a 4 hour trip). Thank God my mother stayed at home with my siblings.

I am not trying to scare you but you are young with a whole lot of life left, don't make a bad decision. I know when I am going to have an attack and I always pull over. I used to live 45 min. away from work. I moved to be closer 45 minutes was too far.

If you must do it be careful pull over often. Does the Ritalin help you. Maybe you could get a prescription for the 10mg of Adderall for emergency driving. That's what I did it seems to help. I'll take one to perk me up when needed.

Please keep us informed, I am worried about your upcoming trip.

I find that alternating between various stimulating things keeps me going.

Some examples are:
- a really exciting novel on CD, MP3, etc
- taking along the lyrics to songs one really enjoys and then memorizing them
- oranges ... take your time peeling them intricately and then eating them real slow (if you can't multitask don't try this)
- breathing exercises .... try to set up a new guiness record for holding yout breath. If you keep an eye on the mileage you can try holding your breath for increasing distances. See how far you can go without breathing in. The trick here is to exhale very slowly once you can't hold it any more.
- try pumping your pelvic floor muscle as you breathe in and relax it as you exhale . do this for a minute. This has the effect of pumping energy up your spine to your brain believe it or not which is very useful.
- leg exercises .... set a new world record for the 'lifting yout free knee up and down' If it burns your still awake.

If you are driving with someone singing or whistling will help him know you're still awake.

Avoid loud music. It tends to create stress and stress will put you under

bon voyage

Thanks everyone for the wonderful advice!! Unfortunately, I do have to make this trip alone. I have an interview for grad school. I have even offered to pay ppl to go with me, but no one can make it. I'm having a really bad day today just in my regular driving routine, so as you can imagine, I'm really starting to freak out on whether I can make it or not. I'm thinking about canceling the trip altogether.

My mother doesn't like the idea of me being a girl driving alone and having to pull over to take naps anyway...