Feeling dizzy, weak, or faint after standing up can be scary, especially if you’re living with transthyretin amyloid cardiomyopathy (ATTR-CM). These symptoms may be signs of hypotension, also called low blood pressure.

Hypotension doesn’t always cause noticeable symptoms. When it does, it can make you feel lightheaded, tired, or unsteady. Hypotension doesn’t always need treatment, but very low blood pressure can reduce oxygen to your organs and cause serious problems.

People with ATTR-CM may have a higher risk of low blood pressure for several reasons, including nerve changes, heart problems, dehydration, or certain medications. This article discusses specific risk factors and explains what a drop in blood pressure can mean.

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What Is Hypotension?

Hypotension happens when the force of blood against the walls of your blood vessels is too weak. What’s considered low blood pressure for one person may not be too low for someone else. A blood pressure reading of less than 90/60 millimeters of mercury (mm Hg) is generally considered to be hypotensive.

Common Signs of Hypotension

You may have hypotension without any noticeable symptoms, in which case you would only know about it by getting a blood pressure reading.

Some people do have hypotension symptoms, which can include:

• Blurry vision
• Fatigue
• Dizziness
• Feeling lightheaded
• Trouble concentrating
• Stomach sensations

A sudden drop in blood pressure can be dangerous or even life-threatening if it causes shock. You may be experiencing shock if you have a weak pulse, cold hands, and pale skin. Get medical attention right away if you have any of these symptoms.

Understanding Orthostatic Hypotension

Orthostatic hypotension happens when your blood pressure suddenly drops after you stand up from sitting or lying down. This type is a common symptom in people with hereditary ATTR (hATTR), a form of ATTR that runs in families, affecting up to 60 percent of people with the condition.

Some people with ATTR-CM have hATTR, while others have a nonhereditary form called wild-type amyloidosis.

Why Does Hypotension Develop in ATTR-CM?

There are several reasons ATTR-CM may raise your risk of hypotension. Some may be linked to your diagnosis, but others might not be related to your amyloidosis. For example, your blood pressure can drop after spending too much time in the sun.

Talk to your doctor if you often have symptoms of hypotension.

Amyloidosis Affects the Autonomic Nervous System

Your autonomic nervous system is the part of your nervous system that controls unconscious processes like your heart rate, breathing, and digestion. It involves nerves from both the central nervous system (brain and spinal cord) and the peripheral nervous system (all other nerves in your body).

Nerves within the autonomic nervous system can be affected by ATTR-CM if amyloid deposits build up in those areas. This can cause autonomic neuropathy, or damage to autonomic nerves that leads to nerve dysfunction.

Autonomic neuropathy commonly leads to orthostatic hypotension because the autonomic nervous system plays a role in regulating your blood pressure.

Some Heart Medications Cause Side Effects

Some people with ATTR-CM are prescribed heart medications such as beta-blockers, blood thinners, or angiotensin-receptor agonists to manage heart problems associated with cardiac amyloidosis.

Although these can help manage heart complications like heart failure, some can cause a significant drop in blood pressure.

Your doctor may also prescribe diuretics (water pills). These medications can be helpful if your body is holding on to excess fluid, which causes high blood pressure and can cause stress on your heart. However, because diuretics cause you to lose extra fluid, they can drop your blood pressure and make orthostatic hypotension worse.

Always take heart medications as prescribed by your healthcare provider and do not stop taking medication without your doctor’s advice. Tell your doctor if you’re concerned about hypotension from diuretics or other medications you take for your heart.

Dehydration Can Lower Blood Volume

Dehydration is a well-known trigger for orthostatic hypotension and a cause of general hypotension. When you don’t have enough fluid in your body, your blood volume drops, which can lead to low blood pressure.

People with ATTR-CM can become dehydrated if they lose too much fluid from diuretics. Additionally, when ATTR affects your nerves, you may have diarrhea. Severe diarrhea can cause even more fluid loss and lower your blood pressure.

Heart Failure Can Cause Hypotension

Heart failure is a possible complication of ATTR-CM. The amyloid deposits stiffen the heart muscle and make it weaker. Heart failure can cause hypotension, including orthostatic hypotension.

Can Hypotension Be a Sign of Undiagnosed ATTR-CM?

ATTR-CM is often hard to diagnose because its symptoms, including low blood pressure, can come from many other causes. Low blood pressure and dizziness can be among the symptoms you first notice, but you might not think ATTR-CM is causing them.

Orthostatic hypotension often appears as an early sign in people with hATTR, especially those with early-onset hATTR. It’s usually severe enough to be noticed in these cases and may even be the first sign.

How Do You Treat Hypotension With ATTR-CM?

Your cardiac amyloidosis specialist can help you manage or prevent hypotension and complications like fainting. Tell your healthcare team if you often feel dizzy or lightheaded, as these are signs you might need to adjust your treatment plan to address hypotension.

Adjusting Heart Medications

Some heart medications, like calcium channel blockers, aren’t typically prescribed for people with ATTR-CM because of the high risk of low blood pressure. Your doctor may decide to adjust heart medications for cardiac amyloidosis, such as beta-blockers, if they’re causing your blood pressure to drop.

Your doctor may tell you to discontinue certain heart medications or try other options if orthostatic hypotension is affecting your quality of life.

Taking Medications for Orthostatic Hypotension

If you have orthostatic hypotension from amyloidosis, your doctor may decide to prescribe a separate medication specifically for your orthostatic hypotension.

Managing Diarrhea

If diarrhea is related to ATTR amyloidosis, treating it may help lower the number of times your blood pressure drops. Talk to your doctor about treatment options for diarrhea that can help you avoid losing too much fluid and prevent dangerous drops in blood pressure.

Staying Hydrated

Staying hydrated is an important way to manage your health, especially if your hypotension is related to diarrhea. Make sure to drink plenty of water and replace fluids lost through diarrhea or diuretic use.

Your doctor might also advise you to avoid habits or situations that can dehydrate you, such as drinking alcohol or spending too much time in the sun.

Talk to Your Doctor

Frequent hypotension is common in people with ATTR-CM. Tell your healthcare team if you often faint or feel dizzy, especially after standing up. They can explore possible causes of hypotension, both related and unrelated to your ATTR-CM.

If your doctor finds that your low blood pressure is linked to ATTR-CM or its treatments, they may adjust your treatment plan. Follow their instructions closely for heart failure medications or medicines used to treat orthostatic hypotension.

Join the Conversation

On MyAmyloidosisTeam, people share their experiences with amyloidosis, get advice, and find support from others who understand.

Has ATTR-CM ever caused your blood pressure to drop? Let others know in the comments below.