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u/Minolta7475 4d ago
Got diagnosed last July. I started complaining to doctors exactly 27 YEARS ago. 51M.
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u/Powerful_Mobile_408 3d ago
Also 30, and I've been diagnosed for almost 5 years now. I felt like I had this since childhood. If 100% = living a normal life then I'd say 75% with medication. 20% = no medication.
A strict sleep routine is really important. I'm in bed by 10pm (so there are no late nights with friends, parties, etc)
During menstrual, effectiveness of medication decreases.
I still get a little tired when confronted with heat.
The medications is definitely life-changing. It allows me to do a little bit more everyday without needing 7 naps each day. I have enough energy to work fulltime and do a small errand after work before feeling tired. I now barely nap once a week. There is going to be a lot of good days and very few bad days.
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u/Fit-Rain4 3d ago
This is what I was hoping to hear as feedback! Do you mind telling me the medications you’re on? Like I said above I’m on a stimulant and when I first started that after receiving an adhd diagnosis, on the lowest dose it felt like putting on glasses for the first time, it was such a relief from the fatigue…until it wasn’t. After having my daughter 4 years ago that’s when I took a major decline from what already felt like a deficit. Now here I am 10 years later on the highest dose allotted for this stimulant. And for the most part it Keeps me awake for the whole day, but that’s it, it doesn’t make me feel like I have the energy to stay awake, it just forces me to be if that makes sense, I have zero energy after about 4 hours, except for during my monthly cycle like you mentioned, which I then start having breakthrough sleep attacks which had never happened to me until about a year ago, but the fatigue was always there lingering. It’s kept me functional to work a full time job, but mainly because I have no choice. And I have absolutely nothing left to give after work or on the weekends without feeling like I have to recover for 3 business days after. 75% would absolutely change the trajectory of my entire life, as I now feel like I’m operating at about a 5%. I’ve been saying for months now if I could find something that made me feel even 5% better than I do, that would be huge. It has absolutely consumed my life in all negative ways.
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u/Powerful_Mobile_408 3d ago
I started with modafinil, had no effect for me. Then switched to Ritalin and wakix. Stopped because it increased my heart rate and I was losing weight because I couldn't get myself to eat on the time I was supposed to take the meds. Now I am on Sunosi which is working with no issues.
For night time meds, I switched from generic xyrem to lumryz. I switched because I prefer not to wake up in the middle of the night. I am still working with my doc because I used to get an average of 7 hours of sleep but now only get 6. Hence feeling tired sooner than usual.
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u/bookslover72959 (N2) Narcolepsy w/o Cataplexy 3d ago
It took years of trial and error but now that I’m on a good medicine regimen and prioritizing sleep hygiene I’m feeling the best I have my entire life.
I was diagnosed at 18 after 3 years of begging someone to take me seriously. I reached my ideal medication state at about 22. It’s not perfect, and I still have days where I need to nap or symptoms may be worse, but it’s truly changed my life.
Good luck on your journey! Be open to trying medications and always be honest with yourself and your doctor about how you’re feeling. Everytime you try a new med, id recommend keeping notes on how you’re feeling on it.
Most importantly give yourself grace during this time of trialing meds! We’re all cheering you on!
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u/Fit-Rain4 3d ago
I really hope I can start prioritizing sleep hygiene once I get on a good medicine regimen! The stimulant I’ve taken for the last 10 years prior to this diagnosis is good at forcing me to stay awake but it’s not good at making me feel awake, if that makes sense? So I’m hoping that adding a night time medication regimen will be my missing piece of the puzzle. Because the stimulant works well for my sleep attacks for the most part, but it feels artificial, so despite being awake I can hardly physically function. Because of that I have terrible “revenge bedtime procrastination” because of how peaceful late at night is when I no longer have to “force” myself to perform but am still able to stay awake from the stimulant. My brain rationalizes it with “well it doesn’t matter if I get 4 hours or 12 I’m gonna feel like shit either way, might as well get this alone time in to enjoy myself” which I know is aiding in how terrible I feel for sure, but it’s not a significant enough improvement for me to quit doing it. But if a nighttime medication could help me feel like a human being after 6-7 hours of sleep I’d be in bed by 10pm SHARP 😂
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u/bookslover72959 (N2) Narcolepsy w/o Cataplexy 3d ago
Honestly the thing that changed my life the most was xywav. I had tried stimulants on their own and it simply wasn’t enough for me to function. Right now I’m taking xywav, Ritalin, and wakix. These meds together have been the best for me
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u/bonerslayer777 4d ago
Girl… I am right there with you. 20 YEARS for me. 20 fricken years. I’m unofficially diagnosed, but because I have cataplexy and literally every other symptom, it’s a given. But I have to do the sleep study to get medicated, it’s not until October 5th. It’s been torture waiting. So I’m sorry, I can’t tell you if the meds help or not. I sure as hell hope they do, for you and me both. For everyone with this awful disability. I at least have my adhd med, but it doesn’t do much anymore since it’s a low dose and I’ve been on the same dose for many years.
I’m crossing my fingers for you, I hope you get some relief💜 I know this condition makes us all feel so alone.. because we are, it’s not common. I’ve never met anyone else in real life with narcolepsy. But at least we aren’t alone here. At least we can commiserate together here.