A 25-year-old, diagnosed with a rare neurological disorder that prevents a person from sleeping, shared on social media that even though they “sleep” for 8 hours, the user has no sensation of sleep.
At Reddit’s popular AMA (Ask Me Anything), the user shared that their condition shares similarity with the rare Fatal Familial Insomnia in terms of symptoms but has a different origin.
“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,” the Reddit post read.
The 25-year-old also shared that the sleeplessness started nearly 4 years ago when their spine got worse. Before then, the user said, they got ‘restful sleep’ every other night.
“About 2 years ago, my spine completely locked up, and I have not experienced normal sleep since.”
The user also shared there is no name for the condition, and that it has progressively deteriorated over the 2 years. “It began with hallucinations, irritability, extreme mood swings, exhaustion, etc.”
In the last 4 months, the user said, the condition has begun affecting their heart, and nervous system. “I have severe dysautonomia, which means my heart and blood pressure go from super low to super high erratically.”
The 25-year-old added they’ve been in and out of emergency rooms for borderline heart attacks about 7 times in the past 3 months.
“My quality of life is about 1/10 and based around my symptoms. I have heart and exhaustion symptoms 24/7.”
Disheartened, the user said they don’t know how long they have, “but can’t see myself making it more than a year”.
Social media users flooded the post with questions about the condition and how the user manages day-to-day life.
“What do you do in a regular day? I can imagine it's hard to do anything when you're constantly exhausted. Do you have any hobbies or things you like to keep you energised?" one user commented.
Another added: “I get extremely emotional when I'm exhausted and stressed. I can imagine knowing you don't have long can be incredibly tough, how have you handled it with no sleep?”
“How exhausted do you feel day to day? If I miss a night of sleep I feel completely dead the next day,” another curious commented. In response, the 25-year-old replied, “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.”
Motivated after so many people commented on the post, the 25-year-old thanked Reddit for the support, and said, “this blew up. I am trying to respond to all comments but I will miss some. Thank you for the support Reddit.”
