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If you have trouble sleeping, you might wonder how long you can stay awake. The good news is that regular insomnia will not shorten your life. However, there is a rare type called “fatal familial insomnia,” and that can be deadly. Let us explore this condition and how it can impact daily life.

What is Fatal Familial Insomnia?

Fatal familial insomnia is a rare disease that causes difficulty sleeping and damages the brain, which impacts one’s daily life and worsens over time. It comes from a genetic abnormality that causes the death of neurons in the brain and can also disrupt body temperature regulation.

How Common is Fatal Familial Insomnia?

Fatal familial insomnia is extremely rare. People with this condition develop prions due to a genetic mutation in their PRNP gene. It is passed down through families, with only about 70 families in the world having the mutation.

It is very rare for someone without the gene mutation to get the prion disease, known as “sporadic fatal insomnia.” Though named differently, the symptoms and outcomes are the same.

What Causes Fatal Familial Insomnia?

Though it goes by the name “insomnia,” fatal familial insomnia is not just a sleep problem. It is a brain illness caused by prions, abnormal proteins that can harm the brain. They cause damage in parts of the brain like the thalamus and medulla oblongata, leading to symptoms of fatal familial insomnia. As the brain gets worse, the symptoms also worsen.

What are the Symptoms of Fatal Familial Insomnia?

The major symptom of fatal familial insomnia is trouble falling or staying asleep. When a person with FFI does sleep, they might have vivid dreams and muscle spasms or stiffness.

Other symptoms of fatal familial insomnia include:

  • Fever.
  • Sweating.
  • Rapid heart rate.
  • Weight loss.
  • Trouble controlling body temperature.
  • Memory loss.
  • High blood pressure.
  • Difficulty in speech.
  • Difficulty concentrating.
  • Double or jerky vision.
  • Trouble swallowing.
  • Muscle spasms.
  • Difficulty concentrating.
  • Mood or anxiety disorders.

The symptoms of FFI are normally mild at first but can worsen over time, impacting daily life and eventually causing complete sleeplessness. In more severe cases, it might result in a coma or even death.

How Do You Diagnose Fatal Familial Insomnia?

Diagnosis of fatal familial insomnia is difficult because it is so rare, and the symptoms may be identical to those seen in other illnesses.

Experts have developed specific criteria for determining who needs to undergo testing. If individuals meet these criteria, healthcare professionals will request diagnostic tests to confirm the diagnosis, which may include:

  • EEG.
  • PET scan.
  • MRI of the brain.
  • Cerebral spinal fluid testing.
  • Genetic testing for PRNP gene mutations.

To Sum It Up

A diagnosis of fatal familial insomnia may be distressing, especially if the symptoms worsen over months. However, one should never hesitate to seek support from healthcare providers, family, friends, and mental health professionals.

If you want to discuss your insomnia, book an appointment with Sleep & Headache Solutions at (832) 688-8886.

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