The symptom burden of transthyretin amyloid cardiomyopathy (ATTR-CM) can vary in severity.
Living with cardiac, neurologic or gastrointestinal symptoms can take a toll on mental health and overall well-being, which in turn affects sleep quality.
What is ATTR-CM?
Transthyretin amyloidosis cardiomyopathy (ATTR-CM) is a rare progressive disease of the heart muscle that leads to congestive heart failure. It occurs when the transthyretin protein produced by the liver is unstable. Symptoms include fatigue; shortness of breath; irregular heart rate or palpitations; swelling of the legs, ankles and stomach; brain fog; wheezing; and dizziness. It often goes underdiagnosed because of a lack of awareness and knowledge of the disease. There is currently no cure for ATTR-CM.
A combination of medication and lifestyle adjustments offers a practical approach to getting a good night’s sleep.
How does ATTR-CM affect sleep?
As amyloid deposits build up in the heart, the stiffening and thickening of the heart muscle causes symptoms such as shortness of breath; coughing or wheezing; swelling of the hands, feet and legs; and irregular heartbeat or palpitations.
Read more about ATTR-CM signs and symptoms
You may also find yourself needing to get up at night for trips to the toilet because of poor heart function. All of these symptoms can make it difficult to fall asleep or stay asleep.
Nerve pain, tingling and numbness in the hands and feet and conditions such as carpal tunnel syndrome or spinal stenosis can also make it hard to get comfortable enough to sleep.
An active brain or anxiety can also affect your sleep. ATTR-CM symptoms make life more difficult to manage, with an effect on personal and professional life.
Symptoms such as constant nerve pain, reduced mobility and brain fog can be frustrating and anxiety-inducing. You may find yourself lying in bed replaying the day’s events or mentally planning your movements the next day and how to manage. Stress and anxiety are the enemies of sleep.
Tips for managing sleep disorders with ATTR-CM
Medication for ATTR-CM helps manage symptoms by slowing disease progression.
Below are some tips to help you manage your nighttime more effectively through self-care and conscious sleep preparation.
- Create a comfortable sleep space. Select the bedding, lighting and air flow that are conducive to sleep. Remove dust and avoid overstimulation from electronic devices.
- Follow a structured sleep routine. Go to sleep and wake up at the same time daily to train your mind and body to sleep.
- Help reduce swelling. Fluid retention is linked to a high salt intake, so keep it to a minimum. Monitor your fluids, and ask your doctor about the benefit of compression stockings or a diuretic as an alternative.
- Adapt your evening diet. Avoid heavy or rich meals at night. Eat a light meal, and reduce caffeine and alcohol consumption.
- Do low-impact physical activity every day. Regular movement will improve your blood flow and your mood. Strength training is good for your heart. Yoga and breathing exercises will calm your anxiety. Ask your doctor to advise you on an adapted exercise program.
- Get tested for sleep apnea. Sleep apnea is often found in people living with ATTR-CM. Ask your doctor about testing and treatment options.
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