Transthyretin amyloid cardiomyopathy (ATTR-CM) can cause symptoms similar to those of heart failure or those associated with nervous system disorders.
Dizziness and balance issues can result from either or from side effects of medication. Such symptoms can significantly affect quality of life, but there are ways to manage and alleviate their effect.
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.
Reasons for dizziness and balance issues in ATTR-CM
The accumulation of amyloid fibrils in the heart damages the muscle and impairs its function and capacity. As the heart muscle thickens and stiffens, pumping blood to the rest of the body becomes more difficult, and the heart is under pressure. The strain caused by this extra exertion can cause light-headedness and even fainting.
Read more about ATTR-CM signs and symptoms
In ATTR-CM, the heart struggles to send oxygen-rich blood to all parts of the body, including the brain. A lack of blood in the brain can also lead to dizziness or loss of balance or consciousness.
Blood pressure can drop suddenly upon standing, causing dizziness, fainting and disorientation. This can result from cardiac strain or nerve impairment.
When amyloid fibrils are deposited in the autonomic nervous system, the nerves deteriorate, leading to motor and sensory dysfunction. When the nerves that control blood pressure and circulation are affected, blood flow is not correctly regulated.
Medications used to treat ATTR-CM, such as diuretics and beta-blockers, can also cause or exacerbate the feeling of being lightheaded.
Managing dizziness in ATTR-CM
In ATTR-CM, it is not possible to reverse symptoms, as amyloid deposits cannot be removed. But it is possible to manage symptoms and reduce their burden on daily life.
- Keep a symptom diary to track the evolution of your symptoms and the effectiveness of your treatment.
- Be proactive about talking to your doctor about adjusting your medication to better manage side effects and ATTR-CM symptoms.
- Take your medication consistently. Treatment adherence is key to staying on top of your symptoms. ATTR-CM medication can slow disease progression and the buildup of amyloid deposits, easing some symptoms.
- Move mindfully. Don’t stand up too quickly. Don’t overexert yourself and put pressure on your heart. Rest often.
- Stay hydrated, and don’t make things worse by missing meals, as low energy can make you lightheaded.
- Avoid extreme heat and hot environments.
- Consider a walking stick or walker if you are concerned about losing your balance when out in public.
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