I don't understand! What is narcolepsy? Not just "1 minute your awake then your asleep"

Last year I was falling asleep behind the wheel of my car while driving. Had a wreck, just hit a car port. thank God, had some test ran and found out I have narcolepsy. Which means your awake then you fall asleep. Got on medication. Starting driving again. Got my life back. Blowing and going everywhere. Doing what ever I wanted when I wanted. Everything was back to normal. I started cleaning houses to help pay the bills. I'm on SSD for mental issues (depression, anxiety, PTSD). 4 years ago my twin sister and I bought a new mobile home together. So I help her any way I can with the bills.

Last week, I was driving us home and didn't realize it at the time but I fell asleep behind the wheel of the car. My sister was screaming at me to pull over but I told her I was fine and kept going. I almost ran into 3 ditches before I pulled over and she drove us home. I don't remember a thing. Scared the (blank) out of her.

Had a doctor appointment the next day with the neurologist. Doctor said I can't drive until I get things back in order. Since then - the doctor has said I can't drive for 3 months, my sister got a new job (been off work for about a year). I have NO EARTHLY idea what to do now. Doctor said, "its like have diabetes. you have to follow all the steps" I said, "I know more about diabetes than I do narcolepsy. She said " If you feel sleepy stop and take a 10 min. nap". Now I have to take a 10 min nap everyday. I haven't ever felt "sleep". One minute I'm awake then I'm not. It's been a year since the last time I did that. What I know now is - I was doing to much! I over extended myself and got to tired. The doctor wants me to do 1, 2, 3, every night and I would skip one or two. I was not regularly doing everything I was suppose to do. When I do all 1, 2, 3 every night, take a nap everyday, and I don't fall asleep while riding in a car then I can start driving again.

My question is - Should I even be driving in the first place?? I have A LOT OF PRESSURE upon myself to get back to driving ASAP. Like next week! How am I suppose to clean houses if I can't get there. Then again the question - Should I even be driving in the first place??? Cleaning houses is our only means of money to pay the bills until she starts getting paid. If she is the only one that can drive what about buying groceries, her going to work, paying bills, me going to see my doctors, (how am I suppose to do that???) How do I know if I'm going to fall asleep??? Take my sleep medication at 11:00 pm. then again in 3 hours. Does that mean 11:00? every night? not 11:19. or 1 am or when I think I'm ready to go to sleep? I am 60 years old I can go to bed when I want. What if I'm not tired? Now I sound like a 2 year old. lol I just don't get this narcolepsy and what it means. "one minute your awake then your not"

Ladybug, based on what you have written, I cannot see that driving is safe for you or for others on the road around you, no matter what types of pressure are being applied. Look into carpooling solutions and public transport. Staying safe is critical.

Ladybug, you sound like a 60 year old who's frustrated about how narcolepsy's serious symptoms are affecting your life, and if you sound like a two year old when you vent, at least you recognized it :). Been there.

You know your doctor is right about the driving. For awhile you had success with the medication and naps, right? And you know you were over-extended before and that now you're in the same position. I can relate to this!!! I tried so hard to push my limits but it backfired and it took triple-long for me to recover. I'm still trying, but the treatment regimen I stick to (I don't like them but I accept them) are the basis for my improvement

Can you get transportation assistance thru SSD? Can you let go of the clients you can't get to? Look squarely at your financials and see if you can get help with utilities and food subsidies if you haven't already. Not having enough money is a real fear and I'm sorry that adds to your pressure. According to your doctor driving isn't an option. There might be a good alternative, but I urge you to make following the treatment recommendations a priority.

Narcoleptics can fall asleep fast without warning. It's the way your brain is working right now and I hope you and your doctor can celebrate some good results in time. Please be kind and patient with yourself - you have good energy! I hope being part of a group will help.

Thanks for the feedback. Can I ask you and maybe your answer will make it into my brain. Because I have narcolepsy there is no more - should of, could of, or maybe's ....it's a have to...I have to take my sleep medication at 11 pm every night. take the 2nd dose at 2. take a nap everyday (new one from doctor, which I'm doing) wear my c-pac all night every night. PLUS the TV, computer, lap top, and phone, games everything gets turned off at 11. What if I'm not ready to go to bed or to sleep or turn everything off at 11?? Don't matter these are the things I HAVE TO DO because I now have narcolepsy. I didn't have it but now I do. Yes that is what everyone is telling me...Yes I have to do these things. For some unknown reason I can't wrap my brain - my thinking around this. All I know about narcolepsy or ever heard is one minute your awake and the next your asleep. Just one more - I have to turn everything off at 11 and go to bed? Like take the TV and lap top out of the bed room. Maybe if I keep asking these questions it will sink in. lol thanks

Lol yes, because your doctor probably wants to give the best chance at successful treatment, which may mean you’ll gain some measure of control over your symptoms. My doc recommended c-pap at night and for naps. I am finally able to enjoy (I mean noticing pleasant temperatures, or being outside when my neighbors are) the light part of the day more and I like that, for example.
Your driving stories would have scared me into compliance. Please understand that if you’re falling asleep that fast, being tired makes things worse. Way too dangerous. If this is a new diagnosis for you give yourself every chance to improve your wakefulness. It’s worth it. You’ll get used to your routine after awhile. I know other members have coping stories they can tell you, too.