I was just recently diagnosed with Narcolepsy. I have never experience cataplexy or anything dramatic I just know I have excessive daytime sleepiness and sometimes at night I won't know if i'm dreaming or awake. I get up at 6am and I begin my day, I am currently taking Ritalin and in the morning I feel okay but as the day progresses it gets worse. At 11:40am I take my second dose but it feels as if i'm already damaged by that point I have something I like to refer as a "crash." My whole body feels weak, i'm so tired I can't stand it. I want to cry, I want to scream, I want to just go to sleep and stay asleep for awhile. I used to be the most outgoing person and I would laugh so much, it was rare not seeing me smiling or laughing. But ever since I've experience narcolepsy symptoms i've felt like a whole different person. I hardly smile, I hardly laugh. Everyone sees me as lazy and when I say i'm tired they just think i'm saying it out of habit. My parents don't truly understand. Some morning I wake up wondering why are you going to get out this bed? You know in about 6 hours you are going to just come home and get right back in it. I never feel overwhelming happy about things anymore I feel as if i'm just drifting through life. Waking up one day and going to sleep the next. Is my second dose of Ritalin not working?? What is this "crash" i'm experience? Is there anything else to help me? Can someone please explain to me??
Kelsey I’m so glad you found this site early on in your diagnosis. My top advice is to share any information about the disease with your close friends and family, They more they know the more they’ll understand. Secondly I wanted to share that from my experience while narcolepsy has one major thing in common, it happens to be a disease that is different for everyone. For me the best meds I’ve ever taken was Ritalin but even in taking it I find myself exhausted most of my days. As cliche as it may sound I really try and dig my heels into my faith and my family, it helps me stay positive when most days I feel like I just can’t. As you learn you will be able to cope better. Don’t give up, you will be okay.
Hi,
Welcome! There are many bright sides but they will be hard to find. Best advice that I can give is eat the heathist food you can and take the vitamin supplements that you need and love yourself for who you are..each day. Also get out for that 20 minute walk each day...remember no one knows you better than you and how this will affect you day by day.
Take care,
Ranger
PS: We all are here for you in your journey.....
Hi Kellsey,
I am so sorry that you are struggling right now. It has been my experience that getting friends and family to understand what i go through on a daily basis, has been one of my biggest struggles with this disorder. I agree that knowledge is power so do your best to educate them the best you can. As far as your medication is concerned, there are other drugs out there that will combat excessive daytime sleepiness. Speek with your doctor and see if perhaps a different medication might work better for you. I have found, that for me, Provigil works best. I think that the key to surviving this disorder is communication. Dont be afraid to fight for yourself…you deserve it!
Hi Kelsey,
We actually have a LOT in common. I was also recently diagnosed with mild narcolepsy. I do experience cataplexy occasionally, but mostly just when someone is tickling me. I am also taking Ritalin. (generic, instant release) I'm not sure how exactly your doctor explained it to you, but it will take some experimentation. You don't necessarily have to take the max dose, and you can change up the times for your doses as well. (Seriously, the doctor blatantly told me to experiment) For me personally, I can take up to 60 mg, but I usually only take 40. When I started the medication though, my body wasn't used to it and I would feel shaky sometimes so I started out by halving the pills. I took half a pill (10 mg) in the morning, and the other half with lunch. I also found that eating helps with the shakes. Now that I've been on it for a while my morning dose is a whole pill, and then I take one or two at lunch, depending on my symptoms for that day. If I know I'll be in a situation where I will be out late at night and need to drive home (possibly after my medication has worn off) I take another half a pill around 6 or 7 in the late afternoon...enough to 'take the edge off' my symptoms without keeping me up too late at night. Obviously, I'm not a doctor, but I would suggest doing some experimenting as well. It took me about two months to get this down to a science. I know that when my medication wears off though, I can REALLY feel it and I crash HARD. It's like all the sleepiness I would have felt if I didn't have the medicine hits me at once and it's all I can do to hold my head up. The key is to take the second or third dose about 45 minutes before the moment of crashing because it's really difficult to recover after you hit that point. I have never taken an extended release form, mostly because it's not covered by my insurance, but you may want to ask your doctor about that option. I know adderall is similar to the Ritalin and may be another option, but since it's also not covered by my insurance, I've never taken it either.
I completely understand what you're going through emotionally. I should have been diagnosed sooner but I ignored the warning signs for way too long. The 3-4 years leading up to the diagnosis were some of the worst of my life and the two-three months following my diagnosis weren't a whole lot better, but once I got everything worked out I am so renewed! I feel happier and more motivated than I have in years, and I really feel so thankful I was finally diagnosed and learned to truly manage (rather than just deal with) my symptoms. The only time I still feel like absolute sh*t is in the morning, trying to roll out of bed...but again, once I've taken a walk, and my first dose, I'm great for the rest of the day.
Hang in there and keep working with your doctor and listen to your instincts.
Kelsey, I take immediate release Ritalin, too. If I wait too long to take the next dose I feel like you describe. And if I feel weak and tired, I take a nap. I used to fight the urge to sleep, take the stimulant and eventually feel more alert, but I was barely effective for a period, and certainly could not drive. Is it possible for you to get good sleep at night?, or during naps? because it does help.
I’ve been through periods of hating to sleep, hating beds (cuz of depression and migraines on top of it) etc. My doc said folks with sleep apnea have a higher incidence of depression and headaches, so if you have even mild apnea consider treating that, too. It helped me somewhat, and I welcomed the improvement: better quality wake time.
Sounds like you miss happier days, but you can get some of it back with a good routine and meds that work for you. The suggestions by others here have reminded me to keep good habits I tend to let slide… ironically, when I begin to see improvement. Some people are really good at getting healthier routines to stick. I need reminders. So thank you for asking for advice - and thanks everyone for the helpful tips!