Sleep is one thing humans take for granted because of its constant availability, but what if there was someone who experiences total insomnia and has lost the ability to sleep?
That is exactly the case of this 25-year-old Redditor who shared their story on Reddit’s popular AMA —Ask Me Anything— subreddit. According to the user, they have a rare, undiagnosed neurological disease that prevents them from sleeping, and it has gotten so bad they don’t think they’ll make it past the year.
An Undiagnosed Disease Similar To Fatal Familial Insomnia
The post the user, identified as BPD-Recovery, shared on the Reddit AMA subreddit contained their journey with this undiagnosed disease, which they said is similar to Fatal Familial insomnia.
According to the Cleveland Clinic, 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.”
BPD-Recovery wrote in their post that all the issues attributed to the disease stems from their spine.
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Years of Pain With a Bleak Future in View
According to BPD-recovery, they have had severe muscular pain since age 16. It reportedly started like a carpal tunnel at first, but then muscles progressively worsened over time. In time, they discovered all muscular issues were radiating from the left shoulder.
Now, BPD-recovery says they cannot breathe normally because of muscle tension. They also said their torso is now lightly twisted away from their problem side. “My spine causes my sleeplessness. When my back was better, and I could release it, my sleep would immediately resume,” the Redditor added.
They further revealed that two years ago, their spine completely locked up, putting an end to normal sleep ever since. Now, when they sleep, they wake up very exhausted and can barely move. According to them, “Energy comes barely online around 3 p.m. Energy comes fully online around 7 p.m. Feel great then.”
Although their symptoms are similar to Fatal Familial Insomnia, the user said their condition currently has no name and that it began with hallucinations, irritability, extreme mood swings, and exhaustion.
The Last Leg
BPD-Recovery also shared in their post that their symptoms have only been getting worse. “In the last 4 months, it’s begun affecting my heart,” the user further noted.
The condition has affected the user’s nervous system, saddling it with severe dysautonomia, which means their heart and blood pressure oscillate from super low to super high erratically. It has resulted in borderline heart attacks about 7 times in the past 3 months, according to the user.
According to the Redditor, “gabapentin (a neuro suppressant) helps a little, but they are still “terrified of dying” and think this is their “last leg.” Under the thread, there were many comments from people suggesting new treatment options which seem to have given the user hope.
They are now motivated and have stated they have been making calls after deciding to keep looking for solutions.
What Triggers Fatal Familial Insomnia?
Fatal Familial Insomnia (FFI) is the closest disease to the one BPD-Recovery is suffering from. It is a rare, inherited sleep disorder caused by a misfolded protein called a prion. Triggers for FFI may include Genetic mutation, autosomal dominant inheritance, prion misfolding, and brain degeneration.
What Is the Life Expectancy of Someone With Fatal Familial Insomnia?
The life expectancy of a person suffering from Fatal Familial Insomnia (FFI) varies. However, it typically ranges from 12 to 18 months after symptoms set in. Sometimes, it can be as short as 6 months or as long as 3 years, but it is ultimately fatal.
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What Are the Four Stages of Fatal Familial Insomnia?
The first stage is the incubation period, which lasts between 10 and 30 years before moving to the prodromal phase. This phase lasts between 1 and 4 months and has non-specific symptoms like fatigue, weight loss, and mood changes.
The next phase is the acute one, which lasts between 6-12 months, complete with rapid decline, insomnia, and neurological deterioration. The final phase is the terminal phase, and it lasts between 1-6 months with complete inability to sleep, mutism, and eventual death.
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