Idiopathic hypersomnia – what you need to know

Idiopathic Hypersomnia
Idiopathic Hypersomnia

Introduction

Hypersomnia‘ means excessive sleep or sleepiness that interferes with everyday life.

It can have many possible causes, including conditions such as narcolepsy, sleep apnoea or restless legs syndrome; severe sleep deprivation; depression; certain medications (such as tranquillisers); or drug and alcohol misuse.

However, some people with hypersomnia will not have an underlying medical condition and there will be no obvious explanation for it – they have it throughout the day, despite sleeping for a very long time at night. This is known as “idiopathic” or primary hypersomnia.

The rest of this page focuses on idiopathic hypersomnia.

Signs and symptoms

People with idiopathic hypersomnia struggle to stay awake during the day and are usually compelled to take frequent long naps. These may be prolonged or at inappropriate times – such as during a conversation or meal, or even while driving – and generally don’t provide any relief from the sleepiness.

Most people with idiopathic hypersomnia also sleep for more than 10 hours a night and struggle to wake in the morning, because they feel very drowsy and confused upon waking (“sleep drunkenness”), although some people sleep for a regular amount of time (about eight hours) and are able to wake relatively normally.

The excessive sleepiness may have a negative impact on the person’s work, relationships and social life, and they may also:

have mental health problems, such as anxiety or depression

have low energy

be restless or agitated

think or speak slowly

have trouble remembering things or maintaining concentration

perform behaviours around the house as if on “autopilot”

These symptoms often develop during adolescence or in a person’s early twenties, although they can occur earlier or later in life.

What to do

See your GP if you’re constantly drowsy during the day and it’s affecting your everyday life. They’ll want to know about your sleeping habits, how much sleep you get at night, if you wake during the night, and whether you fall asleep during the day.

They will also want to know if you have any emotional problems, such as depression, or if you’re taking any medication that could explain your hypersomnia.

Your GP may also suggest keeping a diary of your sleeping patterns and sleepiness levels for a few weeks, or filling in a questionnaire called the Epworth sleepiness scale to assess whether you’re excessively sleepy during the day.

If necessary, your GP can refer you to a doctor specialising in sleep disorders for tests to help diagnose the cause of your symptoms.

Seeing a sleep specialist

A number of tests can be carried out to assess your sleep and help identify any underlying cause. These are usually carried out at a specialist sleep centre.

Two of the main tests used are:

Polysomnography (a night time sleep test), which will help rule out sleep disorders such as narcolepsy or sleep apnoea. You stay in a special bedroom and are observed from another room through the night. Electrodes are attached to your face, head and body to record brainwaves, muscle activity, eye movement, breathing and snoring.

Multiple sleep latency test – this test usually follows the next day. You’ll be asked to take several naps throughout the day, so doctors can see how long it takes you to fall asleep when instructed (this shouldn’t take longer than eight minutes for someone with hypersomnia).

Doctors may diagnose idiopathic hypersomnia if you have excessive daytime sleepiness and need regular daytime naps, but no other cause is found.

Managing idiopathic hypersomnia

Idiopathic hypersomnia doesn’t usually get better by itself. Many people find that the symptoms improve with treatment.

Medication

There are no medicines specifically designed to treat idiopathic hypersomnia, but medications used for narcolepsy can often help.

The main medications used are stimulants, such as modafinil, dexamphetamine and methylphenidate, which help to keep you awake during the day. See treating narcolepsy for more information on these medicines.

Antidepressants may be prescribed if emotional problems are interfering with your sleep.

A medicine called flumazenil has been shown to help some patients with idiopathic hypersomnia, although more research is needed to be sure of its effectiveness.

Lifestyle changes

It may also help to adopt good sleeping habits, such as avoiding alcohol, caffeine and medications that make the condition worse, sticking to a bedtime routine, and avoiding working at night or engaging in social activities that delay bedtime.

Useful Links

Multiple sclerosis – how to manage sleep and fatigue problems in MS

Managing Pain and Sleep Issues in MS
Managing Pain and Sleep Issues in MS

Sleep problems like insomnia are a big part of multiple sclerosis

Please check out this video which gives some great tips for getting better sleep when you have MS.

Are you a parent of a child with autism and have 15 minutes to spare? Please help the Karolinska Institutet with a survey

Karolinska Institutet - Autism Research
Karolinska Institutet – Autism Research
Earlier this week we were contacted by one of our readers who asked us to help find people to take a survey. Suzanne Axelsson, herself a mother with a  child on the spectrum told us “My husband is starting up some research into the sleep routines of children with autism. Sleep is an essential part of learning… and also social interaction… if we are tired it is harder to react appropriately to a given situation… and as I see with my own son, who has autism, he is depleted of his energy reserves sometimes rapidly by things that would hardly bother others… this means that good sleep hygiene is even more essential for my son”.
Her husband John Axelsson of the Karolinska Institutet , a leading medical university in Sweden, shared:
“Karolinska Institutet is currently conducting a study to explore the complex relation between autistic traits and sleep quality. 
While we know that sleep is often affected in this group, the underlying mechanisms remains largely unknown. 
If you have a child that has been diagnosed with an autism spectrum disorder or have autistic traits, you can contribute to this research by filling out a questionnaire about your child and his/her sleep, taking approximately 15 minutes. You will not be asked to provide any identifying information such as name or date of birth, meaning that your answers will remain strictly anonymous and confidential. The data will be used for developing better interventions to improve sleep quality and day time functioning in children with autism. 
 
Simply click on this link to participate (https://survey.ki.se/Survey/4695/en) but please make sure that you have 15 minutes to spend as you only can access the questionnaire once. 
Thank you very much for your time, and don’t hesitate to contact me if you have any questions! 
 
Associate Prof. John Axelsson, 
Dept. Clinical Neuroscience
Karolinska Institutet 

Self-help tips to fight fatigue

Self-help tips to fight fatiguee
Self-help tips to fight fatigue
Many cases of unexplained tiredness are due to stress, not enough sleep, poor diet and other lifestyle factors. Use these self-help tips to restore your energy levels.

Eat often to beat tiredness

A good way to keep up your energy through the day is to eat regular meals and healthy snacks every three to four hours, rather than a large meal less often.

Read more about healthy eating.

Perk up with exercise

You might feel too tired to exercise, but regular exercise will make you feel less tired in the long run, and you’ll have more energy. Even a single 15-minute walk can give you an energy boost, and the benefits increase with more frequent physical activity.

Start with a small amount of exercise. Build up your physical activity gradually over weeks and months until you reach the recommended goal of two-and-a-half hours of moderate-intensity aerobic exercise, such as cycling or fast walking, every week.

Read more about starting exercise.

Find out the physical activity guidelines for adults.

Lose weight to gain energy

If your body is carrying excess weight, it can be exhausting. It also puts extra strain on your heart, which can make you tired. Lose weight and you’ll feel much more energetic. Apart from eating healthily, the best way to lose weight is to be more active and do more exercise.

Read more about how to lose weight.

Sleep well

It sounds obvious, but two-thirds of us suffer from sleep problems, and many people don’t get the sleep they need to stay alert through the day. The Royal College of Psychiatrists advises going to bed and getting up in the morning at the same time every day; avoid naps through the day, and have a hot bath before bed (as hot as you can bear without scalding you) for at least 20 minutes.

Read more about how to get a good night’s sleep.

Try these NHS-approved sleep apps to help you sleep well.

Reduce stress to boost energy

Stress uses up a lot of energy. Try to introduce relaxing activities into your day. This could be working out at the gym, or a gentler option, such as listening to music, reading or spending time with friends. Whatever relaxes you will improve your energy.

Read more about how to relieve stress.

Talking therapy beats fatigue

There’s some evidence that talking therapies such as counselling or cognitive behavioural therapy (CBT) might help to fight fatigue. See your GP for a referral for talking treatment on the NHS or for advice on seeing a private therapist.

Read more about counselling.

Cut out caffeine

The Royal College of Psychiatrists recommends that anyone feeling tired should cut out caffeine. It says the best way to do this is to gradually stop having all caffeine drinks (this includes coffee, tea and cola drinks) over a three-week period. Try to stay off caffeine completely for a month to see if you feel less tired without it.

You may find that not consuming caffeine gives you headaches. If this happens, cut down more slowly on the amount of caffeine that you drink.

Drink less alcohol

Although a few glasses of wine in the evening helps you fall asleep, you sleep less deeply after drinking alcohol. The next day you’ll be tired, even if you sleep a full eight hours.

Cut down on alcohol before bedtime. You’ll get a better night’s rest and have more energy. The NHS recommends that men and women should not regularly drink more than 14 units a week, which is equivalent to six pints of average strength beer or 10 small glasses of low strength wine.

Read more about how to cut down on alcohol.

Drink more water for better energy

Sometimes you feel tired simply because you’re mildly dehydrated. A glass of water will do the trick, especially after exercise.

Read about healthy drinks.

5 Tips on Camping Safety for Parents

Boys Playing in the Leaves
Boys Playing in the Leaves

Camping is one of the top summer activities, particularly if you live near a national forest. The fresh air, escape from city noise, and beauty of nature make camping one of the best family-friendly trips one can take in the summer. However, camping often comes with its own set of risks, especially for children. There are a few ways you can make your family camping trip as fun and safe as possible. Here are a few tips:

Be Diligent with Mosquito Repellent

For the most part, mosquitos are only annoying pests that make you itchy. They don’t often pose a major health risk to you or your kids. However, they can carry diseases such as West Nile Virus, malaria, and yellow fever. Although diseases from mosquitos are somewhat rare in North America, it certainly is better to be safe than sorry.

People often also scratch open mosquito bites, which leaves behind an open wound. Kids tend to be very nonchalant about picking and scratching at bug bites, which makes them susceptible to infection. The best way to prevent disease and infection is to prevent mosquito bites altogether.


Life Jackets are a Must

Life jackets are a necessity if you are going to be camping near a body of water. Keep in mind that rivers may seem placid on the surface while concealing a strong current beneath. Rivers easily pull even the best swimmer under and drag them across the river bottom.

Lakes pose a threat to children, especially those who are boating, because they have less endurance. If children are thrown from the boat, they could be stunned by the impact, and it will not take much time for them to lose strength and dip below the surface of the water. Accidents can happen even under the watchful eye of the most observant parent. It is best to take safety precautions.

Maintain a Similar Sleep Schedule

Sleeping in the great outdoors can be a very exciting prospect for kids. It is their vacation and they are more than likely prepared to stay awake for the duration of the trip. Unfortunately for them, it is important that their sleep schedule does not deviate too much from their usual routine. Try to keep bedtime within a half an hour of their normal bedtime. To encourage sleep, you may want to bring some foods that aid sleep. It also helps to stick to your home routine as much as possible.




Apply and Reapply Sunscreen

There’s nothing like a sunburn to make a vacation uncomfortable. Sunburns cause pain and peeling along with an increased risk for skin cancer when the child reaches adulthood. To avoid these issues, apply sunscreen a half an hour before your kids are exposed to sunlight. A good rule of thumb is to reapply sunscreen every two hours, but you should reapply it more frequently if the kids are splashing around in a creek.

Pack Plenty of Water

Dehydration is a very common problem in active kids. The excitement of the vacation, along with the hot sun, are a recipe for a dry mouth or other issues related to dehydration. To avoid this problem, offer your children water, not soda or juice, every half hour. You also can take advantage of the rehydration time to reapply sunscreen.

Keeping your kids safe while camping is, in reality, a fairly easy task. If you keep yourself on the same rehydration, sunscreen application, and sleep schedule, keeping track of what your kids need becomes much easier. However, it also is important that you don’t spend your entire trip worrying about your children. If you forget to reapply sunscreen after a dip in the lake, your children will survive. This is your vacation too; take some time to relax and enjoy.


Sean Morris is a former social worker turned stay-at-home dad. He knows what it’s like to juggle family and career. He did it for years until deciding to become a stay-at-home dad after the birth of his son. Though he loved his career in social work, he has found this additional time with his kids to be the most rewarding experience of his life. He began writing for LearnFit.org to share his experiences and to help guide anyone struggling to find the best path for their life, career, and/or family.