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

• A 25-year-old Reddit user shared the worsening of his undiagnosed neurological disorder, which he said is affecting his sleep to the point where they don’t think he has much longer to live
• In a Reddit post with more than 11,000 upvotes, they noted that it was similar to Fatal Familial Insomnia, but shared that doctors had been unable to diagnose the condition — other than the fact that it stemmed from ongoing spinal problems
• Users said they had given up hope – but the comments and suggestions in the thread “motivated me” to find help

The 25-year-old, with a rare, undiagnosed neurological disease that makes it impossible for them to sleep, said: “I don’t know how old I am, but I can’t last more than a year.”

In a post on Reddit’s popular AMA — Ask Me Anything — subreddit, user BPD-Recovery shared his journey with this undiagnosed illness, which they said is similar to a fatal family insomnia.

As the Cleveland Clinic explains, fatal familial insomnia “is a rare genetic condition that causes difficulty sleeping (insomnia), memory loss (dementia), and involuntary muscle twitching. This condition worsens over time and is life-threatening.”

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

Stock image of an unmade bed.

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“I have had severe muscle pain since I was 16. It initially started as carpal tunnel. Muscles progressively deteriorate over time. Over time, he discovered everything musk. The problems were coming from the left shoulder,” the user wrote in a post that had 11,000 upvotes and more than 1,600 comments.

“Now I can’t breathe normally because of muscle tension,” they continued. “My torso is now slightly twisted from my problem side, My spine is causing my insomnia. If my back was better and I could release it, my dream would resume immediately.”

The Redditor shared that two years ago, “my spine completely congested and I haven’t slept normally since.”

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The user said that when they sleep, they will “Wake up. Extremely exhausted. He can barely move. Power is barely on around 3 p.m. Power is fully on around 7 p.m. Then you feel great.”

Although they said their symptoms were similar to fatal familial insomnia, they said: “There is no name for my condition. My condition progressively worsened over the course of 2 years. It started with hallucinations, irritability, extreme mood swings, exhaustion, etc.”

“In the last 4 months it started affecting my heart,” the user further noted. “My nervous system is fucked. I have severe dysautonomia, which means my heart and blood pressure go from super low to super high irregularly. About 7 times in the last 3 months I have been to the emergency room for borderline heart attacks.”

Image of a doctor checking a patient’s blood pressure.

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They shared that they were struggling cognitively, saying: “I also had to bring the person in to see the doctors because I was delirious. I was too tired to speak on hundreds of occasions.”

“I regularly stand out and stare at the walls. I forgot what I was doing 30 seconds before. I’m literally microsleeping while I’m awake,” they shared. “I’ve spilled pasta on my work surface, hit a parked car in the driveway, called people the wrong names, forgotten basic words, said ‘oh hey don’t do xyz’ while doing it.”

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While the Redditor noted that “gabapentin (neurosuppressant) is helping slightly,” they admitted that “I’m f—— scared of dying. My heart problems are new and I think I’m on my last leg.”

The thread was full of commenters suggesting new treatment options — from calling a specialist to trying new therapies — that could give the user hope.

“Kind of given up due to utter desperation from years of medical gaslighting/getting nowhere,” the Redditor noted, adding, “This thread motivated me. I called the Mayo Clinic and a few other places today.”

Categories: Trends
Source: HIS Education