Good luck to all you brave souls who continue driving ( perhaps only for work , short distances and more cautiously and infrequently with a diagnosis of narcolepsy . More power to you . Since reading other posts and support from my narcolepsy team mates l am at peace now with not being able to drive. I am blessed and happier now that l realize it is OK to ask for rides Thanks folks 🤗
I still have mine. I barely drive and only really close to my house on good days. I know my limits.
I almost crashed several times as a teenager and in college before I had my narcolepsy diagnosis. Now I know when I am safe to drive and when I am not. I also get kind of an aura of such like pixelated vision, facial tingling, and my hearing gets dampened prior to having a sleep attack so I get some time to pull over in a safe location to take a nap. I recently got fried from a coaching job because I had to be late to assistant coach one day because I was too tired to drive and had to wait for my partner to get off of work to drive me. 😣
Yeah, my state automatically takes it for many disorders that can cause loss of awareness or consciousness, including narcolepsy, sleep apnea, and epilepsy. They sometimes take it for diabetes as well if the person has a history of severe lows.
They often take it when you disclose being diagnosed, but you can get it back once your doctor signs a form saying your disorder has been well-controlled for 6 months. For epilepsy, this means being seizure-free for 6 months.
They also say that narcoleptics have to be sleep-attack free for 6 months, but that’s impossible, so that’s where the doctor’s form comes in. As long as the doctor signs the form, you might have to do a driving test, but you can get your license back.
I’ve had to sit in front of a judge for two hours answering questions after I was in an accident. Only due to the fact they changed my medication and after waiting five days to drive I finally did and had a bad case of cataplexy. They put me back on my normal meds and increased dosage. Judge let me keep my license.
However, since then my narcolepsy has worsened dramatically. Especially after I caught Covid.
But I know my limits. I never drive longer than 45 min. If it takes longer then I get someone else to drive or I simply don’t go. I also sometimes take a 20 min nap after driving 30 min. Just to stay refreshed. I never talk or text while driving and if someone happens to be in the car with me (which is extremely rare) I ask them to refrain from talking to me. I have a driving playlist I play. All of this helps me avoid any potential cause of cataplexy.
Lastly I’ll note that staying within a distance is essential along with having friends or family within that range of distance. That way if you’re ever in a bind you can ask someone to come pick you up, and you can attempt the drive again later or tomorrow. It’s not the safest thing sleeping in your car. Oh but if you do I highly suggest making a sign for the window so no cops are called and no concerns are provoked.
ABOVE ALL ELSE…
Know your limits. Set your limits. Keep to your limits.
And always keep real with yourself. Pride can be an ugly and tragic thing
These are musts as a PwN+C. Remember, driving is a privilege not a right.
Best wishes Xo