After Years of Sleeplessness, 25-Year-Old Gains Strength from Social Media

A 25-year-old, diagnosed with a rare neurological disorder that prevents them from truly experiencing sleep, shared their story on social media. Despite sleeping for 8 hours a night, they wake up without any sensation of rest.

In a Reddit AMA (Ask Me Anything), the user explained that their condition shares symptoms with the rare Fatal Familial Insomnia but has a different origin.

Fatal Familial Insomnia
Find the facts of fatal familial insomnia including symptoms, causes, treatment & diagnosis.

‘Fatal Familial #Insomnia (FFI) is a nightmare. This rare disease robs people of #sleep, leading to a horrific decline. A 25-year-old is sharing their battle with #sleeplessness. #goodnightsleep’

What is Fatal Familial Insomnia (FFI)

Fatal Familial Insomnia (FFI) () is a rare and invariably fatal neurodegenerative disorder characterized by progressive insomnia. This genetic condition leads to a complete inability to sleep, accompanied by severe physical and mental deterioration. As the disease progresses, individuals suffering from FFI experience hallucinations, panic attacks, weight loss, and eventually, dementia. Unfortunately, there is no cure for FFI, and treatments focus on managing symptoms while the condition inevitably progresses to a fatal outcome.

“I’m 25 years old and have a neuromuscular disorder that affects how my brain regulates sleep. My disorder is similar in symptoms to Fatal Familial Insomnia but is different in origin. I sleep about 8 hours a night without feeling rested. I have vivid dreams but no sensation of sleep,” they wrote.

The sleeplessness began nearly four years ago, coinciding with a worsening of their spinal condition. Initially, they still experienced restful sleep every other night. However, about two years ago, their spine locked up entirely, and normal sleep became impossible.

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The user revealed that their condition remains unnamed and has progressively deteriorated over the past two years. Early symptoms included hallucinations, irritability, extreme mood swings, and exhaustion. In the last four months, their heart and nervous system have become severely affected, leading to severe dysautonomia—causing their heart rate and blood pressure to fluctuate erratically.

They also shared that they’ve been in and out of emergency rooms for near-heart attacks about seven times in the past three months. "My quality of life is about 1/10 and revolves around my symptoms. I have heart and exhaustion symptoms 24/7," they said.

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Feeling disheartened, the user admitted they don’t know how much time they have left, but “can’t see myself making it more than a year.”

Social media users responded with an outpouring of questions and support. One asked, “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 energized?"

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Another commented, “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?”

In response to a question about how exhausted they feel, the user 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.”

Grateful for the overwhelming support, the 25-year-old thanked Reddit, saying, “This blew up. I’m trying to respond to all comments, but I will miss some. Thank you for the support, Reddit.”

Reference:

Fatal Familial Insomnia - (https://my.clevelandclinic.org/health/diseases/25001-fatal-familial-insomnia)

Source-Medindia