Any help/advice?

Hi! My name is Leslie and I came across this form and it gave me hope to realize I wasn’t alone. I was officially diagnosed with narcolepsy without the cataplexy) almost 2 years ago at the age of 27. However I know I went years before being formally diagnosed by a sleep specialist with the sleep study and MSLT test. Anyways, as with a lot of people with narcolepsy there are good periods and bad. Lately I’ve been stuck in a bad period. I am just so exhausted and tired and if I’m not at work I’m home in my bed sleeping or at least resting because I’m physically and mentally just absolutely exhausted. I’m on adderall, nuvigil, vyvnanse, clexa, and then lunesta and sonata for when I go to bed at night. I feel like no matter how much medication I take I just am always exhausted and have barely enough energy to make it through the day at work. I’m always thinking just a few more hours till I can go home and back to bed. I could sleep 22 hours a day and it wouldn’t be enough nor would I feel better. My family thinks I’m lazy (which is the furthest thing from the truth) and I’ve had countless follow up appointments with many neurologists and sleep specialists who have tried other medications but nothing’s worked and they don’t know what else to do with me. Of course when I tell the Dr’s it’s not working and maybe we could increase the dose they look at me like I’m a druggie (which is the furthest thing from the truth…what I wish they knew is that all I want is to be able to function for a few hours a day and not just have to constantly think about how much more time before I get to go home bad back to bed) I really don’t know how I am going to live the rest of my life like this. I’m 30 years old, healthy, not overweight, and I can barely get up enough energy to get together with girlfriends once in awhile. I usually end up canceling because I’m just so tired. (Depending on how exhausted I am I can still sometimes fall asleep after taking any of my medications) and forget about dating…I can barely take care of myself right now. Anyways I’m sorry to go on and on I just thought I’d reach out and see if anyone could help.
Thanks everyone for showing me I’m not alone like I thought I was and that besides you guys no one seems to understand.

I am 34 and have been dealing with this as well since I was about 19. One thing I have found for me is that the anti-depressants have the opposite effect and just make me more sleepy. I have tried every sleep medication you can name and for those with Narcolepsy they do not have an impact. We do not have problems sleeping, we have problems resting since we are in so much REM sleep. The sleep medicines only made the problem worse for me as well. I would consider discussing with your Dr about coming off of the sleep medications and if you are only taking anti-depressants because you sleep all of the time those as well. The problem I am having with the Narcolepsy drugs such as Adderall and Nuvigil is that you get used to them and then they do not work as well. I am going back to the Dr this month to discuss getting on a rotating schedule of medications so that I can switch when I get used to one. Another thing I have found that helps is to stay busy. When I sit and work or watch TV the urge to sleep is overpowering, but if there is something I have to do and adrenaline kicks in, I can seem to make it better. Please do not get discouraged, there are people out there who will understand and be a help mate. I am married with two children and a full time job. Some days are really hard, but understanding how the drugs really affect your body will help you so much in the long run. Please feel free to message me if you have any questions or just need to vent.

Doing whatever it is you want to do, plus working, is enough for anybody but I know that you don't want to spend so much time in bed! I'm so sorry you're going through a difficult period and your frustration is justified.

Narcolepsy can be really hard to control, and it sounds like you've tried very hard to manage your symptoms. You've probably re-assessed your meds a number of times. Right now do what you need to do to feel at least well enough to think things through. I know even doing this takes energy. You are definitely not alone!

On bad days I have to rest or sleep, partly because even with scheduled naps my body gets tired from meds and always fighting the sleepiness. When I have good days it's easy to do too much and then have to recover from that. I went through a prolonged period of disability and learned that though I'm thin and look fit, I have to move! Inactivity made even walking or yoga exhausting. If you enjoy fitness please try to at least get some exercise in. I didn't use it and I lost it ;). LOL! but seriously! I'm getting better but more slowly at 58 than when I was younger.

I also have depression and migraines so those are factors in my disability. If you're stubborn like I am I don't recommend pushing yourself to your actual limit. It's really tempting especially if you believe you're doing everything you can and still want to achieve more. I'm adjusting to the "I am who I am" idea and regaining my health.

I want to encourage you because I know that you and your doctor will make right adjustments for you to have a better quality of life. You aren't lazy. Your family doesn't understand yet. My family got tired of me not changing for them (I did try LOL!) and treat me more fairly now. I think I sent my sisters info like Nel suggested.

Looking back on my MSLT my doctor noticed I had mild sleep apnea and prescribed CPAP treatment and that seems to help me feel more alert when I'm awake.

Hi guys! Thank you everyone for the replies. I am so appreciative! I’m so grateful I found this group and that I’m not alone and am surrounded by people who “get it” who I don’t have to try to explain things to. It’s 2:40AM my time here and I’m sill awake after working a 12 hour shift. I’m exhausted mentally and physically but my brain just can’t seem to shut off. I’m already dreading tomorrow morning because I know my mess don’t worrk that great. If it’s a good day I can get about 2 1/2 or 3 hours out of them and then if I take an other medications during the day I might as well not take anything because they don’t work. I could fall asleep on them! I just hate not having enough energy and strength to not be able to go do errands without dreading it and counting down the minutes til I’m back in bed.
Thanks for listening and letting me vent everyone! Leslie :slight_smile: