25-Year-Old with Neurological Disease Doesn't Sleep: 'Can’t See Myself Making It More Than a Year'

Mar. 15, 2025

Stock image of a man struggling with insomnia.Photo:Getty

Getty

A 25-year-old with a rare, undiagnosed neurological disease that keeps them from sleeping shared, “I don’t know how long I have, but can’t see myself making it more than a year.“

Ina poston Reddit’s popular AMA — Ask Me Anything — subreddit, userBPD-Recoveryshared their journey with this undiagnosed disease, which they said they’ve been told is similar to Fatal Familial insomnia.

As theCleveland Clinicexplains, Fatal Familial insomnia “is a rare genetic condition that causes sleeping difficulties (insomnia), memory loss (dementia) and involuntary muscle twitching. This condition gets worse over time and it’s life-threatening.”

As BPD-Recovery shared, the issues all stem from their spine.

Stock image of an unmade bed.Getty

“Now, I cannot breathe normally due to muscle tension," they continued. “My torso is now lightly twisted away from my problem side, My spine causes mysleeplessness. When my back was better, and I could release it, my sleep would immediately resume.”

The Redditor shared that two years ago, “my spine completely locked up, and I have not experiencednormal sleepsince.”

The PEOPLE Puzzler crossword is here! How quickly can you solve it? Play now!

The user said that when they sleep, they will “Wake up. Extremely exhausted. Can barely move. Energy comes barely online around 3 p.m. Energy comes fully online around 7 p.m. Feel great then.”

Although they shared that their symptoms are similar to Fatal Familial Insomnia, they said “There is no name for my condition. I have progressively deteriorated over 2 years. It began with hallucinations, irritability, extreme mood swings, exhaustion, etc.”

“In the last 4 months it’s began affecting my heart,” the user further noted. “My nervous system is f—–. I have severe dysautonomia, which means my heart and blood pressure go from super low to super high erratically. I’ve been in and out of emergency rooms for borderline heart attacks about 7 times in the past 3 months.”

Stock image of a doctor checking a patient’s blood pressure.Getty

They shared that they’re struggling with cognition, saying “I have also had to bring ppl to talk to doctors because I was so delirious. I have been too tired to speak on hundreds of occasions.”

“I regularly zone out and stare at walls. I forget what I did 30 seconds prior. I literally microsleep while awake,” they shared. “I have strained pasta onto my countertop, hit a parked car in my driveway, called people the wrong names, forgot basic words, said ‘oh hey don’t do xyz’ as I wasdoing it.”

Never miss a story — sign up forPEOPLE’s free daily newsletterto stay up-to-date on the best of what PEOPLE has to offer, from celebrity news to compelling human interest stories.

Although the Redditor noted that “gabapentin (a neurosuppresant) helps marginally,” they admitted that “I am f—— terrified of dying. The cardiac issues are recent and I think I’m on my last leg.”

The thread was full of commenters who suggested new treatment options — from calling specialists to trying new therapies— which may have given the user hope.

“I kind of gave up due to extreme despair from years of medical gaslighting/not getting anywhere,” the Redditor noted, adding, “This thread has motivated me. I called Mayo Clinic and a few places today.”

source: people.com