Porphyria and Sleep

If you have porphyria, you likely may regularly have trouble getting a good night’s sleep. There are ways to help remedy that.

What is porphyria?

Porphyria refers to a group of disorders in which affected individuals cannot make hemoglobin, the protein that binds oxygen in red blood cells. Because of this inability, porphyrins — chemicals the body normally uses to make hemoglobin — accumulate in the body.

Sleep and porphyria

Whether you have cutaneous porphyria or acute porphyria, your sleep is probably regularly disrupted. Usually, it’s pain in your body that rouses you. In acute intermittent porphyria — the common form of acute porphyria — symptoms include chest, leg, or back pain. Some people also have severe abdominal pain.

Even when not experiencing a pain crisis, it may be common for you to have poor sleeping patterns.

The American Porphyria Foundation website features the stories of several people with porphyria and their sleep problems. In one, Steve Stevens, who has variegate porphyria, recounts his long journey to diagnosis. This included an earlier diagnosis of a sleep disorder that he said made him tired all the time.

Advice on sleep

Here are some suggestions that may help improve the quality of your sleep:

• Since anxiety is a symptom of acute porphyria, meditation could be particularly useful in helping you sleep better. Try using visualization or calming music to help send you off to sleep.
• Try not to worry before going to sleep. Instead, focus on dealing with things during the day, or make a list of what you need to deal with the next day.
• Make sure you have a quality mattress, which some say should be changed at least every decade. Test the mattress when shopping so that you get the right one for you.
• Lower your intake of coffee and caffeinated drinks such as some teas and sodas, especially in the evening. Also, keep alcohol consumption to a minimum.
• Exercise more as working out enhances deep sleep. Light activity early evening is best.
• Eat well. If you have acute porphyria, you’re probably already used to a diet of readily digestible foods to combat daily symptoms like nausea. Some foods also inherently promote good sleep. They include leafy green vegetables, nuts, whole grains, mushrooms, and fruit. Avoid rich foods at bedtime.
• Keep cool. A bedroom that’s too warm reduces sleep quality.
• If you can’t sleep, get up, make a hot milky drink, read a book, or listen to relaxing music until you feel sleepy again.

Last updated: June 9, 2020

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Porphyria News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.