Looking for advice, medically and just survival. I want to be able to clean my house, work without fighting, and just live better. It’s day 3 with nuvigil. It helps but it takes like 3 to 4 hrs and I’m still fighting the sleepiness. I have no energy or motivation. I was really hoping it would be a huge change. I feel like I’m lazy and I can even watch TV or a movie with falling asleep. I can’t drive more than 10 minutes and it’s still dangerous. I’ve gained 30 lbs just trying to stay awake doing anything. Does it get better? I’m almost 30 years old with dogs, a fiance, a house to take care of and a really great full time job. Any tips thoughts advice would be wonderful! Thank you
Hang in there Heather, it’s a long road. So I jump back and forth between Adderall and Ritalin every few months for my sleepiness, Xyrem to sleep, and Venlafaxine for cataplexy. I’m on some heavy stuff, and with it all, I’m still in the same boat as you. Motivation seems to be the hardest thing for me. I still don’t have a lot of energy but your going to have to work for that. I was a Infantry soldier. I used to ruck 10 miles with a hundred pounds of gear on. (That’s not a joke, i put it on a scale.) My run time was around 11 and a half minutes for 2 miles. I had turned into a PT stud. Besides all that I was a good soldier, and now it’s all gone. I felt like everything I had worked for was taken from me, and I still do. With our condition it’s very hard to push ourselves even when motivated. Because everytime we start to accomplish something, we crash. To be real with uou, we will never be able to do the things that we did before,but that doesn’t mean we stop trying. I keep this thought with me. “I hate falling asleep, but I love waking up. I’m still alive, so I must live.” The last part is the hardest part for me. I also have PTSD,and I tend to isolate myself,and people with N tend to do the same. Unfortunately I have some drastic reactions when I go out. Don’t isolate yourself, it’s not worth it! Keep good people around, people you can trust. I don’t want you to be like me. I’m trying to do more, and to go more places. But believe me, the loneliness is not worth it. I only survived it because I have my two little boys, and their moms are very understanding. The days their not here are the hardest, but just like I swore to make it home to then, I have swore never to leave them. Please don’t feel sad, or pity for me. That’s not why I wrote this. I want you to know that we get knock down, but you can get back up. You will have to play the medication game. Eventually you will find what works best. Your just starting down this long road, and I just wanted to give you the heads up, and some advice to hopefully make it easier. Keep your head up, step outside every morning and take a deep breath. Soak in some sunlight and tell yourself, “Today will be better, and if it’s not,I’ll make it better.”
Yes. You will get better! Motivation is sometimes a big challenge as sleepy giant just wrote. For me, I had to totally grieve N. Then, I could let go, accept and my motivation came back. For me, diet can help…too go easy on carbohydrates…I love to eat, but feel better when the carbs are light. If that medication does not kick in, tell your dr, they can readjust. Blessings.
Do you know to take that med on an empty stomach and wait 30 minutes before eating? Otherwise it does not work as well…check with pharmacists for your case.
A little perspective for you: most narcoleptics picked up the disorder fairly young but it is diagnosis that may take years. You caught your N 20 years younger than I caught mine. While currently-available pharmaceutical interventions are not yet what we all wish for, you still have many advantages over the undiagnosed.
Advantages include:
• ADA protections for your job: I either lost jobs or couldn’t advance due to tardiness and absenteeism
• medicine: Nuvigil may not be the rocket fuel you wish for but it beats caffeine or high off label doses of OTC medicines to cope, and Xyrem is only available to those with an official diagnosis. All other sleep meds made my condition worse one way or another except amitriptyline and I also became a bad alcoholic using drinks to put me to sleep at night.
• social awareness: the most damaging aspect of N to me has been the misjudgments of other people that I am lazy or negligent about my health. Missed social events, sleeping through the Super Bowl, being late to morning meetings, falling asleep in someone’s living room while they are talking, being late to important events like graduations or concerts, these things make others decide that we narcoleptics are not trying hard enough and that has lead to harsh judgements in our low-context society.
• realistic time management: most people have roughly 16 hours of uninterrupted wakefulness in a day. That changes for narcoleptics and can fluctuate extensively. Currently, I personally have about 12 hours a day, broken up into two or three blocks. That is WITH Xyrem, Nuvigil, and Adderall all in play! So realism says that I need to scale life to meet wakefulness resources. I need an easier yard to take care of, else I will likely not fish anymore. I choose activities to fit me rather than whine about how I cannot do what I want. It’s not easy.
• You can give yourself a break! Lord knows you need it, right? Imagine approaching 50 years old still wondering what the heck is wrong with you, why can’t you get motivated, why do sleep so much, why aren’t you taking better care of yourself, and not having answers.
Get informed! The literature is not extensive, unfortunately. But note that this curse was not even proven autoimmune in nature until 2009 and advances are being made toward better intervention all the time. “Psychosocial Aspects of Narcolepsy” is very dry and clinical and covers much of what we stuggle with but without recommendations.
I hope something in this helps; I recently got 5 free sessions with a professional counselor through EAP at work and she has helped me with my gloomy outlook. 
I was diagnosed bi polar and schizo-effective when I was 19. They put me on all kinds of Medicine for yrs until I was put on seroquel and it works. I’m only on 50 mg at night. I always thought I was bored in class and then it was the seroquel that made me so tired. The sleepiness got worse. So bad I can’t sit through a half hour TV show and forget about movies. So bad that when I go to the bathroom I fall asleep too. My fiance was getting concerned so I went to the neurologist and got diagnosed with Severe Narcolepsy. The doctor also said that I’m probably not bi polar that people are mis diagnosed all the time when it’s narcolepsy. 50 mg is a low dose and I’ve been on it for likelike 8 years. I can’t take the nuvigil anymore. I had to go to the emergency room due to it stressing my heart out. I felt so weird. Out of body experience too. I start ritalin on Friday.