Connect with others who understand.

  • Learn from expert-reviewed resources
  • Real advice from people who’ve been there
  • People who understand what you’re going through
Sign Up Log In
Powered By
Real members of MyNarcolepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyNarcolepsyTeam Member asked a question 💭
Eutaw, AL

My name is Bre, I have narcolepsy Type 2. Diagnosed June of 2026. So far I haven't found a medication that works for me. The side effects are awful and because of that my meds have been charged approximately every 2 weeks or less. I haven't been able to drive or go to work because of the side effects. Lumryz is shipped to me to try next. I'm hoping for better results.

August 9
 · 
Be the first to react
A MyNarcolepsyTeam Member

Prayer is the key. I tried the same medicine and it felt like some was moving in my brain so I quit meds my body let me know when it's bout to.shut down sometimes

August 14
A MyNarcolepsyTeam Member

I'm glad you're doing better. I've been on Modafinil, Sunosi, vyvanse and Adderall. I had very bad side effects with all. I'm kind of afraid to try anything else because my anxiety is high from the effects of the other medications. But, at the same time I do want to find what may work for me so I can enjoy my family and life.

August 10
A MyNarcolepsyTeam Member

I am a mail carrier,, many years before being diagnosed. I would have to climb in the back of my mail truck and take a 10 to 15 minute nap. I just could not function! The heat absolutely made me feel worse! I am better after being put on modafinil but, whenever I see my doctor and explain how my tiredness affects my job, my daily routine… he just raises the dosage of my meds. I’m at 400 mg a day now, and I have to drink an energy drink and take a no doze to complete my day. I’m exhausted all the time.

August 10
MyNarcolepsyTeam

Heat and narcolepsy can definitely be a tricky combination! There's actually some interesting research suggesting that body temperature plays a role in alertness for people with narcolepsy. A small study found that people with narcolepsy felt more awake after consuming cold food or drinks, which caused a slight drop in body Show Full Answer

Heat and narcolepsy can definitely be a tricky combination! There's actually some interesting research suggesting that body temperature plays a role in alertness for people with narcolepsy. A small study found that people with narcolepsy felt more awake after consuming cold food or drinks, which caused a slight drop in body temperature. Warm temperatures, on the other hand, seemed to increase sleepiness.

So yes, heat could genuinely be making symptoms feel worse. A few things worth trying:

- Opt for cold drinks and cooler foods during hot days
- Keep your environment cool, especially your bedroom
- Avoid being in direct heat for long periods The medication journey with narcolepsy can feel exhausting, especially when side effects keep getting in the way. Finding the right fit often takes real trial and error, and it's very common to go through several options before landing on one that works.

Lumryz is an oxybate medication that works by helping improve nighttime sleep quality, which can then reduce excessive daytime sleepiness. Fingers crossed it brings some much-needed relief! It's worth keeping a detailed medication log while trying it, noting sleep quality, side effects, and how alert you feel during the day. That kind of record can be really helpful when talking with your doctor about next steps.

August 9

Related Questions

View All
A MyNarcolepsyTeam Member asked a question 💭
Holland, MI

A MyNarcolepsyTeam Member asked a question 💭
Oklahoma City, OK