'Don't Know How Long I Have': Reddit User Shares About Rare Neurological Disease That Prevents Sleep

A 25-year-old with a rare, undiagnosed neurological disease that prevents the person from sleeping recently shared on social media, “I don’t know how long I have, but can’t see myself making it more than a year,” the person said. In a post on Reddit’s popular AMA (Ask Me Anything), user BPD-recovery shared the journey with this rare condition. The user explained that it shares similarities with Fatal Familial insomnia (FFI), a genetic degenerative brain disorder. FFI can cause severe insomnia, leading to significant physical and mental decline.

“I’m 25 years old. I have a neuromuscular disorder that affects the way my brain regulates sleep. My disorder is similar in symptoms to the rare Fatal Familial Insomnia, but different in origin. I sleep ~8 hours a night without experiencing rest. I have vivid dreams but I have no sensation of sleep,” BPD-Recovery wrote.

Explaining about the condition, the user shared that the sleep issues began around 4 years ago when the spinal condition worsened. Initially, the person was able to get a “restful sleep,” but the situation deteriorated significantly over the next few years. “There is no name for my condition. I have progressively deteriorated over 2 years. It began with hallucinations, irritability, extreme mood swings, exhaustion, etc.,” the user added. The person further revealed that from the past 4 months, the rare condition has started impacting their heart.

“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,” the user noted.

“My quality of life is about 1/10 and based on my symptoms. I have heart and exhaustion symptoms 24/7. I don’t know how long I have, but can’t see myself making it more than a year,” the user concluded.

Since being shared online, the post has garnered significant attention. Users have flooded the comment section with questions about the disease and some even suggested treatment options.

One curious commenter asked, “How exhausted do you feel day to day? If I miss a night of sleep I feel completely dead the next day.” In response, BPD-recovery wrote, “For reference, I used to stay awake for 70+ hours in uni due to spine pain. This is a constant level of about 5-6 days awake of exhaustion.”

Someone shared, “Super strange that I’m reading this while watching a video called “here’s why sleep is terrifying” and the first part was about chronic insomnia. Nothing to ask, just really weird to see this right now.”

Another added, “No questions. I’m so sorry you’re having to live this way. That sounds absolutely awful. I hope you’re able to find some joy and happiness in the midst of all of it.”

On the treatment front, a person suggested, “You should try to get your case seen by Mayo, Cleveland Clinic, John Hopkins, or through some other rare/unknown diseases program. UAB in Alabama has one.” BPD-recovery replied with, “I’m actually otp with Mayo as we speak. This is a great idea. This sub gave me a kick in the ass. I had kinda given up which is why I posted here.”