Connect with others who understand.

Sign up Log in
Resources
About MyNarcolepsyTeam
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.

Narcolepsy And Severely Sleep Deprived

A MyNarcolepsyTeam Member asked a question šŸ’­
Stafford, VA

Even though I sleep 9-10 hours a night, my neurologist said that I have been severely sleep deprivation for over a year and it is effecting my memory and cognition to the point of being diagnosed with Mild Cognitive Disorder.. Anyone else?

June 19
ā€¢
View reactions
A MyNarcolepsyTeam Member

I'm glad to see that someone other than me experiences the extreme fatigue, and the brain shut down that lets you know you had better lay it down. Atleast every other weekend is like that for me. I don't make commitments on the weekends because that's the only time I have to give my body the rest it needs.

June 26
A MyNarcolepsyTeam Member

Over time Iā€™ve discovered that my fatigue gets more intense the longer Iā€™m using medications to stay awake. Occasionally my brain lets me know to just not bother taking any that day andā€¦.sleep. And sleep. Sometimes for 2 days, just indulge in sleeping. Seems to allow my system (brain?) to somewhat catch up? recharge? replenish? whatever else I seem to have run out of. Then resuming my ā€˜normalā€™ narcoleptic days are (more) tolerable and the meds are working again.

June 22 (edited)
A MyNarcolepsyTeam Member

Iā€™m glad to hear Lumryz is helping. How many milligrams? I tried it but had to stop due to side effects. I was a week on the 4.5mg, I started the 6mg and next day had to go back to 4.5mg. After a week the doctor stopped the Lumryz.

June 30
A MyNarcolepsyTeam Member

Before meds and when some meds stopped working, it was literally like being tortured. Every single day felt like three AM. It's better now I'm on Lumryz. Still have EDS, but I do get a chunk of restorative sleep.

June 30
A MyNarcolepsyTeam Member

I suffered a TBI in 2013 and seemed to have memory issues, and mild cognitive impairment since. I had been a Microbiologist for 25+ years in a hospital. Most will say I donā€™t appear to be disabled and quite intelligent. But I canā€™t even do math now and I have multiple ā€œto do listsā€ I write, re-write daily, I forget medications and sometimes to eat. I seem to struggle with sense of time. I can be on my phone texting for hours and wonder why my hands hurt, I think Iā€™ve been on the phone a much shorter time. My neurologist who isnā€™t proficient in sleep medicine said it was due to the brain injury. I was diagnosed in 2019 with Narcolepsy 2 with cataplexy. Now he says Narcolepsy can come from a TBI. NOW he saying itā€™s an autoimmune disease. This disease has robbed me of my life and the hardest struggle has been finding the right doctor/medication.

June 30

Related content

View All

Would You Say You Have Good Days And Bad Days With Narcolepsy?

A MyNarcolepsyTeam Member asked a question šŸ’­

Has Anyone Tried CBD For Narcolepsy?

A MyNarcolepsyTeam Member asked a question šŸ’­
Boise, ID

Can Someone Please Help Me Understand Why Narcolepsy Takes So Long To Diagnose? What's Wrong With Our Society?

A MyNarcolepsyTeam Member asked a question šŸ’­
Continue with Facebook
Continue with Google
By joining, you accept our Terms of Use, and acknowledge our collection, sharing, and use of your data in accordance with our Health Data Policy and Privacy policies.Your privacy is our priority Lock Icon
Already a Member? Log in