Pulmonary hypertension (PH) is a condition where the blood vessels between the heart and the lungs narrow, causing high blood pressure in those arteries. Along with chest pain, heart palpitations, and fatigue, difficulty breathing is a common symptom of PH.

It’s important to note that pulmonary hypertension is different from systemic hypertension, or regular “high blood pressure.” In systemic hypertension, high blood pressure in the systemic arteries carries blood to other parts of the body.

If you’re experiencing shortness of breath with pulmonary hypertension, here’s what you need to know about its role in PH, including why shortness of breath happens and how to work with your healthcare provider to help manage it.

1. Difficulty Breathing With PH May Be Mild, Moderate, or Severe

Shortness of breath with PH can range from moderate to severe. Some people experience trouble breathing only in certain situations. One myPHteam member shared, “I get short of breath when bending over to pick something up.” Another said, “It’s really hard to take a deep breath or walk very far outside in the cold air.”

Other people with PH experience shortness of breath more often. One member described it as “shortness of breath with slight movement.” They added, “Sometimes it goes away in a few minutes, but it usually lasts for several hours. Sometimes I even wake up with it.”

“I get short of breath when bending over to pick something up.”

— A myPHteam member

Another member shared that they struggle with shortness of breath at home as well. “I get short of breath when I exert my energy to do chores or anything,” they said.

Even when you know the cause, shortness of breath can be scary. As one member said, “Sometimes it is terrifying, because it feels like I am suffocating.”

2. Shortness of Breath Is Caused by Poor Blood Flow With PH

Pulmonary hypertension occurs when the pulmonary arteries — the blood vessels between the heart and lungs — become stiff and narrow. This causes high blood pressure and poor blood flow. But how does this lead to shortness of breath?

In people with PH, shortness of breath is caused by issues with blood flow between the heart and lungs. Even though blood eventually passes through, it doesn’t spread evenly across the lungs. As a result, some areas don’t get enough blood to pick up oxygen properly. Imagine pouring water into one corner of a sponge — the rest of the sponge stays dry. Similarly, when there’s not enough oxygen in the blood, a person will feel out of breath, even if their lungs are taking in plenty of air. This lack of oxygen makes you feel out of breath.

In pulmonary hypertension, shortness of breath is caused by issues with blood flow between the heart and lungs.

Over time, PH can weaken the right side of the heart, which pumps blood through the pulmonary arteries. This makes blood flow and oxygen exchange even harder.

At first, shortness of breath may only happen during physical activity or bending over. In severe cases, you may feel short of breath even at rest.

3. Shortness of Breath Is a Symptom of Pulmonary Hypertension

Shortness of breath is often the first symptom of PH, but more symptoms can develop as the lung disease progresses or gets worse. Other symptoms of pulmonary hypertension include:

• Chest pain or feelings of pressure in the chest
• Swelling in your legs, ankles, or stomach area
• Fatigue
• Dizziness or fainting
• Bluish or grayish lips or skin
• A pounding or racing heart
• Stomach pain and reduced appetite

People with PH may also experience general or muscle weakness. One myPHteam member asked, “Does anyone else struggle with balance from leg weakness?”

Another replied, “Yes, balance issues, light-headedness, and leg weakness were my first symptoms,” another member replied. “I have to take a big breath before standing up.”

If you experience sudden weakness or can’t move your arms or legs, call your local emergency number or go to the emergency room immediately.

Breathing troubles can also disrupt sleep for people with PH. Some people with PH also have obstructive sleep apnea, a sleep disorder that impairs the body’s ability to get enough oxygen during sleep. Shortness of breath and fatigue may go hand in hand. “I didn’t sleep last night, and then I tried to sleep today,” wrote one member. “I had problems breathing, but at least I got a couple hours.”

Conditions such as chronic obstructive pulmonary disease (COPD) — including chronic bronchitis and emphysema — and interstitial lung disease can also cause PH and breathing difficulties.

4. Pulmonary Hypertension Treatment Can Help You Breathe Better

Several treatments can help manage PH and ease symptoms like shortness of breath. Talk to your healthcare provider to find the best options for you.

Medications

Certain medications can help PH symptoms, including:

• Vasodilators (blood vessel dilators) — Open narrowed arteries to improve blood flow
• Anticoagulants (blood thinners) — Thin the blood to prevent blood clots
• Calcium channel blockers — Relax blood vessels in the lungs, improving blood flow
• Diuretics (water pills) — Remove excess fluid to reduce strain on the heart
• Digoxin — Helps the heart pump more efficiently

Combination Therapy

For people with PH and pulmonary arterial hypertension (PAH), a type of PH, healthcare providers may recommend combination therapy. This involves using two or more medications that work differently to improve blood flow, reduce strain on the heart, and slow disease progression.

Combination therapy may include:

• Endothelin receptor antagonists (ERAs) — These block the effects of endothelin, a substance that narrows blood vessels.
• Phosphodiesterase-5 inhibitors (PDE-5 inhibitors) — These relax blood vessels to improve blood flow.
• Combination medications (like macitentan/tadalafil) (Opsynvi) — These combine two types of drugs in one pill to target blood vessel narrowing and improve circulation. Macitentan blocks endothelin, which helps prevent blood vessel tightening, while tadalafil relaxes blood vessels by increasing blood flow.
• Prostacyclin analogs and receptor agonists — These mimic prostacyclin, a natural substance that widens blood vessels and improves circulation.
• Activin signaling inhibitors — These drugs target proteins in the TGF-beta family, which help send signals between cells to balance two main pathways: the activin pathway, which encourages cell growth, and the BMP pathway, which slows down cell growth. By keeping these pathways balanced, TGF-beta modulators can help prevent abnormal cell growth.

Research suggests that starting with combination therapy can slow disease progression and improve breathing and exercise capacity. Your healthcare provider can determine the best combination based on your condition and response to treatment.

Oxygen Therapy

Many people with PH and low levels of blood oxygen find that getting extra oxygen helps ease shortness of breath. Some people use oxygen therapy all the time, while others use it as needed.

One myPHteam member shared, “When I’m walking with oxygen and it gets harder to breathe, I stop and rest for a minute to get my oxygen saturation rates up again. Then I am good to go another 25 to 35 feet before I have to stop again.”

Other devices, like continuous positive airway pressure (CPAP) machines, can help people with PH and sleep apnea breathe better at night. One member said, “I use a CPAP at night but no oxygen, as my rate only falls to about 80 upon exertion.”

Breathing Exercises for Pulmonary Rehabilitation

If you’re eligible and your doctor thinks it would be helpful, pulmonary rehabilitation can teach you ways to manage your shortness of breath. “When I went through pulmonary rehab, they taught us different ways to breathe,” shared a member of myPHteam.

Another said, “When I have trouble breathing, I sit and do pulse breathing. I breathe in and breathe out until my oxygen level goes up to at least 90, and then I do my work again.”

Pulmonary rehab may also include light physical activity. One member noted,“I don’t exercise very fast because I get so out of breath, but rehab has helped. Even a little bit makes a difference.”

“When I have trouble breathing, I sit and do pulse breathing. I breathe in and breathe out until my oxygen level goes up to at least 90, and then I do my work again.”

— A myPHteam member

5. Lifestyle Changes May Help You Breathe Better With PH

Many doctors recommend lifestyle changes to help manage PH and its symptoms. These lifestyle changes include reducing common risk factors, such as:

• Managing your diet and weight
• Quitting smoking
• Avoiding high altitudes
• Getting enough sleep
• Staying as active as your body allows
• Avoiding saunas, hot tubs, and hot showers
• Seeing your doctor regularly
• Asking for help when needed
• Getting all the vaccines your healthcare provider recommends

If you need help making these changes, talk with your healthcare provider. They can suggest a healthy lifestyle plan to complement your treatment and help manage shortness of breath and other symptoms of pulmonary hypertension.

Connect With Others Who Understand

Living with pulmonary hypertension can feel isolating, but support from others who understand can help. On myPHteam, the social network for people with PH, more than 56,000 members come together to ask questions, give advice, and share their experiences with pulmonary hypertension.

Have you experienced shortness of breath with PH? What strategies have you tried to manage it? Share your experience and tips in the comments below or by posting on your Activities page.