Everyone needs sleep, but some people with pulmonary hypertension struggle to get the quantity or quality they need. Mary Ferguson finds out more.

Regular inability to sleep can be frustrating and distressing, and have a significant impact on wellbeing and quality of life.

Struggling to drop off, tossing and turning and waking regularly are common problems experienced by many people with PH, with the resulting fatigue making day-to-day life difficult.

Why do we need it?

As a nation, sleep is something we simply don’t get enough of. According to The Sleep Council, more than a third of people in the UK average less than six hours’ of sleep a night.

Generally, adults aged 18-65 require seven to nine hours and in this time, our bodies are able to replenish energy stores and make repairs, while our minds organise and store the memories of the day before.

A good night’s rest is essential to a healthy lifestyle

The Sleep Council’s Lisa Artis told Emphasis: “A good night’s rest is essential to a healthy lifestyle – protecting you physically and mentally as well as boosting your quality of living. Just one night of interrupted sleep negatively affects mood, attention span and cognitive ability.”

The consequences of not getting enough, she said, are serious. “Each hour of sleep lost per night is associated with a temporary loss of one IQ point and chronic sleep debt can have a seriously damaging effect on our mental and physical health.”

Hampshire-based PH patient Lorraine Dior tries to counteract her lack of sleep at night by napping during the day. She said: “I sleep much better during the day than at night for some reason. I go to bed between 10 and 11pm and often don’t drop off until 4am. I’m then up again at 7.30am for the school run.

“It’s been going on ever since I was diagnosed with PH, so for over 20 years. I just put up with it, as I feel like I’ve tried everything.”

Unlike Lorraine, Catherine Makin from Lancashire avoids daytime naps as it then affects her ability to sleep later on. She said: “Sometimes I end up tossing and turning all night, then when I’ve finally got over it, it’s time to get up. Some nights I can get to sleep really easy but end up waking early in the morning. It makes me feel frustrated and means that I end up resting longer and sometimes I have to cancel plans to go out with friends if I’m feeling too tired.”

Quantity Vs Quality

Research conducted in 2016 found that the sleep quality, not quantity, is what makes a difference to the wellbeing of patients with PH.  

The ‘Sleep Quality and Quantity: Association with Quality of Life and Function in Patients with Pulmonary Hypertension’ was funded by the PHA UK and forms part of the wider IMPHACT cohort study. It involved 179 patients and found that the quality of sleep experienced by an individual affected quality of life, fatigue and function to a greater extent than the amount of sleep someone has.

Andrew Hargreaves, 40, has been struggling with his quality of sleep since his Hickman line was fitted last November. He said: “When I try and sleep I toss and turn, only managing two or three hours at a time. Concern about my line getting tangled keeps me awake and it’s become more of an issue over the last six months.

“It’s affected my quality of life because I find myself needing a ‘power nap’ more often now, and my poor wife’s sleeping pattern has been knocked about as I’m always fidgeting. I can find myself to be very short-fused.”

The ‘Sleep Quality and Quantity’ study concluded that the use of sleep questionnaires may be a simple method to identify patient difficulties and highlight those who need further investigation.

Other research, conducted in America, has shown that quality of sleep can be improved by having something worth getting out of bed for the next day.

In July, scientists at Northwestern University in Illinois announced they had discovered that when people feel they have a ‘purpose in life’, they have better quality of sleep and fewer night-time disturbances.

Despite all the research, many PH patients live day-to-day with the fatigue and frustration caused by disrupted or limited sleep.

My life is affected so much by my sleep

It’s a feeling familiar to Helen Akers from Chesterfield, who has struggled with her sleep since being diagnosed two years ago. She said: “I have awful strong palpitations and missed heartbeats when I lay down. It greatly affected my marriage as I kept the ex-husband awake and it’s one of the reasons he is now my ex.

“I have tried all kinds of things to help; meditations, audio, no phone at night, even strong sleeping pills –  and still was awake all night. My life is affected so much by my sleep.”

  • If you have concerns about your sleep, please speak to your specialist centre or GP.
  • Got any sleeping tips or experiences you’d like to share with other patients? Email editor@phauk.org or find us on Twitter @PHA_UK or on Facebook @PULHAUK

Visit www.sleepcouncil.org.uk for further advice.