Whether you have trouble falling asleep, staying asleep, or simply getting quality rest, sleep issues can leave you feeling drained. Your transthyretin amyloid cardiomyopathy (ATTR-CM) diagnosis may be to blame for your sleepless nights.

“I’ve been having insomnia a lot lately, so I slept in late this morning. I needed that extra sleep. Does anybody else have problems with sleeping?” one MyAmyloidosisTeam member wrote.

Common symptoms of ATTR-CM, like swelling and shortness of breath, can interfere with restful sleep. So, too, can certain sleep disorders that are linked to ATTR-CM, as well as some medications used to treat the heart condition.

Here’s what you need to know about ATTR-CM and trouble sleeping.

How Can ATTR-CM Symptoms Affect Sleep?

ATTR-CM is a type of cardiac amyloidosis. In ATTR-CM, a buildup of amyloid deposits (misfolded proteins) in the heart makes it difficult for the muscle to pump blood effectively. This dysfunction can lead to several symptoms that can disrupt sleep.

Shortness of Breath

Heart problems are a common cause of shortness of breath. This is because the heart and lungs work in sync to deliver oxygen to the body. When the heart isn’t working properly, blood oxygen levels can fall.

If a heart condition affects the heart’s electrical system, it may cause arrhythmias (abnormal heart rhythms) to develop. These can make the heart muscle less effective, contributing to shortness of breath.

Shortness of breath at night may lead to waking up coughing or gasping for breath, which can disrupt your sleep.

Swelling

ATTR-CM can reduce blood flow due to heart weakness, causing fluid to build up in the body and lungs. Fluid in the lungs can make it harder to breathe, especially when you’re lying down trying to sleep.

People with heart failure affecting both sides of the heart can have this problem because when they stand, gravity pulls fluid into the legs and other tissues. The fluid makes them swell up. When they lie down, the gravity effect is reduced, and some fluid moves into the lungs — causing shortness of breath.

If you aren’t able to breathe while lying flat, you may need to sleep propped up in your bed or a chair. Having to sleep in an awkward position can make it even harder to fall asleep and get a full night’s rest.

Pain

Transthyretin amyloidosis (ATTR) is defined by tissue damage caused by the buildup of amyloid proteins. When these protein clumps affect nerves, tendons, or ligaments, they can cause painful conditions like carpal tunnel syndrome. Pain can make it hard to sleep.

How Can ATTR-CM Complications Affect Sleep?

Having ATTR-CM also increases your risk of developing certain sleep disorders. These conditions can make it harder to get restful sleep and increase daytime fatigue.

Obstructive Sleep Apnea

ATTR-CM can lead to heart failure (the inability to pump enough blood) over time. Living with heart failure increases your risk of developing sleep apnea. Sleep apnea is a type of sleep-disordered breathing that can further strain the heart.

In obstructive sleep apnea (OSA), soft tissues in the upper airway relax too much, causing the throat to collapse and prevent airflow to the lungs. This collapse leads to temporary breathing pauses. People with OSA may wake up abruptly several times per night, gasping for breath or choking.

If amyloid deposits collect in the soft tissues of the mouth and throat, ATTR-CM can cause the tongue to enlarge and the upper airway walls to thicken. This effect can make you more likely to develop OSA because it narrows your airway.

Frequent apnea episodes can lead to poor sleep that doesn’t leave you feeling rested. People with OSA may find they feel very tired or are unable to focus due to broken-up sleep.

Insomnia

Insomnia refers to both trouble falling asleep and trouble staying asleep. People with ATTR-CM have noted that insomnia is one of the most difficult symptoms of the condition.

ATTR-CM symptoms, such as shortness of breath and pain, as well as OSA, can make you more prone to insomnia. Living with a heart condition may also leave you feeling stressed or anxious, which are common causes of insomnia.

Certain medications used to treat ATTR-CM may also lead to insomnia. For example, diuretics (water pills) help manage fluid retention. They can disrupt sleep by waking you up to use the bathroom during the night.

Doctors sometimes prescribe beta-blockers to help manage irregular heartbeats. However, these drugs can also lower levels of the hormone melatonin. Since melatonin helps control sleep patterns, taking beta-blockers can lead to trouble sleeping.

Are Sleep Problems Common in People With ATTR-CM?

Trouble sleeping is a common issue for people with ATTR-CM. One study that evaluated people with cardiac amyloidosis found that 90 percent were also living with sleep-disordered breathing. In particular, 73 percent had OSA.

According to the American Heart Association, OSA occurs in 40 percent to 80 percent of people with heart failure, high blood pressure, atrial fibrillation (a type of arrhythmia), coronary artery disease, and stroke.

Among people who have symptomatic heart failure, 40 percent to 60 percent are reported to have OSA or central sleep apnea (CSA). CSA causes breathing pauses due to the brain’s inability to properly signal breathing muscles.

MyAmyloidosisTeam members have also noted how quality sleep, and sleep in general, has been hard to come by:

What Members Are Saying About Sleep

“My quality and quantity of sleep have lessened since my diagnosis. I am tired most of the time.”

“I am now on night six with the poorest sleep quality and about three hours max of steady sleep.”

“My husband has been having a rapid heartbeat when lying down. … The doctors are not concerned, but he cannot sleep. It will stop if he sits up, but who wants to spend the night sitting up?”

Can Sleep Problems Worsen ATTR-CM?

Breathing pauses during sleep cause low blood oxygen levels and put stress on the heart muscle. As a result, living with untreated sleep apnea can worsen ATTR-CM and other heart diseases, potentially contributing to life-threatening complications.

Low blood oxygen levels can also affect the heart’s electrical rhythm. This means that OSA can play a role in heart arrhythmias, causing existing arrhythmias to worsen or new ones to develop.

Long-term insomnia may have negative effects on heart health, worsening ATTR-CM even in the absence of sleep apnea. Added strain on the heart may cause ATTR-CM symptoms to become more severe. In turn, more severe symptoms can make it even harder to get to sleep.

This can result in a vicious cycle of sleeplessness, fatigue, and heart problems.

Talk to your healthcare team if you have trouble sleeping with ATTR-CM. You can work with your cardiologist to find the right treatment options to address your specific sleep issues.

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