Living with Idiopathic Hypersomnia : Causes & Coping Tips

Idiopathic hypersomnia is a type of sleep disorder that does not have a cure. It is not really understood, and most experts don’t know what causes this disorder. The term hypersomnia means excessive sleep, and patients with idiopathic hypersomnia tend to sleep the usual amount at night, around six to seven hours, but they have difficulty waking up in the morning and continue to spend the day feeling sleepy and tired. Going through the day feeling extremely sleepy can make it challenging to carry out your daily activities. Here’s everything you need to know about living with idiopathic hypersomnia.

Idiopathic hypersomnia is a rare type of sleep disorder in which people feel excessively sleepy during the day, even after having a good night’s sleep. It also causes difficulty in waking up after sleeping at night or even after a nap. People Idiopathic hypersomnia usually don’t find naps to be very refreshing due to the trouble they have waking up from one.^{(1, 2, 3)}

Apart from excessive daytime sleepiness, people Idiopathic hypersomnia may also experience the following:

• Sleep for large amounts of time every day (i.e., 10 hours or more).
• Show signs of ‘sleep drunkenness, such as difficulty waking up when the alarm rings, extreme sleep inertia, and feeling drowsy or groggy for long periods of time.
• The need to sleep can strike a person with idiopathic hypersomnia at any time, including while driving a car or working, making this condition potentially dangerous.

Idiopathic hypersomnia usually does not develop overnight, and it can take weeks to a few months for the condition to develop. Diagnosis of idiopathic hypersomnia is made by ruling out other, more common, sleep disorders, and treatment focuses on controlling the symptoms with medication.^{(4, 5)}

As mentioned earlier, the exact cause of idiopathic hypersomnia is not known, and there has been little research done in this area. It is believed that idiopathic hypersomnia is not really an illness, but instead, it is a combination of symptoms that have many causes. The excessive sleepiness could be due to the following:

• Low-grade infections in the body that are unknown usually start up after a flu-like illness or brain damage.⁽⁶⁾
• A brain abnormality that has an unknown cause. For example, some people with idiopathic hypersomnia have been found to have low levels of the chemical histamine in their brains.⁽⁷⁾

Some people with idiopathic hypersomnia may also experience other psychiatric conditions, such as psychosis, depression, or anxiety, and the symptoms might get more complicated by certain factors, such as:^{(8, 9)}

• Sedative or stimulant medications that are taken at the wrong time or in excess.
• Irregular or abnormal sleeping schedule and exposure to light making it difficult to sleep.
• Having other sleep disorders such as circadian disturbances or sleep apnea.

It is but natural that this type of excessive sleepiness interferes with your day-to-day life. And when this happens, you will eventually find out that people around you just don’t understand how difficult it is to manage your symptoms. However, it is important to remember that idiopathic hypersomnia is a medical condition, and it is not your fault that you feel sleepy.

It is important that you don’t leave Idiopathic hypersomnia untreated. Your doctor can help you design a treatment plan for Idiopathic hypersomnia that works best for you. This may include medications, lifestyle changes, or therapy. While it can be a challenge to manage life with idiopathic hypersomnia, there are certain strategies and tips that can help. Here are some tips to help you live a better life with idiopathic hypersomnia.^{(10, 11)}

1. Get Enough Sleep

   It is important to make sleep a priority for yourself if you suffer from idiopathic hypersomnia. The majority of adults need to sleep for at least seven to nine hours a day, but people who have idiopathic hypersomnia are different. It is possible for people with idiopathic hypersomnia to sleep for over 11 hours every night. However, you may still not feel totally awake even after sleeping a lot.

   Nevertheless, it is still important to get a good night’s sleep. If you don’t get enough sleep, it is highly likely that sleepiness will hit you even harder than someone who didn’t get enough sleep at night but does not have idiopathic hypersomnia.

   Remember that sleep is not optional for anybody, especially people with idiopathic hypersomnia. Remember that without sufficient sleep at night, you will be much less likely to function properly. So try to get a good night’s sleep.⁽¹²⁾

2. Don’t Shy Away From Asking For Help

   It is important that people at school or work are aware that you have a medical condition known as idiopathic hypersomnia. It is challenging for people with this condition to get up in the morning, no matter how many alarm clocks they have. Oversleeping is a real issue for people with idiopathic hypersomnia.

   If you have trouble waking up in the morning, you should make some arrangements at your workplace and inform the school authorities. At the workplace, this could include a flexible or late start time or having a conversation about raising awareness of conditions like idiopathic hypersomnia. Remember that it is important for the school or employee to be aware that the reason behind the tardiness is an actual medical condition and not laziness or wanting to sleep in.

   If your child has idiopathic hypersomnia, it is important the teacher or the school administrator is aware of the condition as the child might be late sometimes as they were actually not able to wake up. Idiopathic hypersomnia can also have an impact on your child’s learning in many ways. Idiopathic hypersomnia is known to cause symptoms like poor memory, brain fog, or trouble focusing in class. A child may take longer to do their classwork, or they may have trouble staying awake. Strategies like extra time, breaks, having a small snack, having to stand up from time to time, or anything that helps the child stay awake and alert will help deal with the situation.^{(13, 14)}

3. Seek Help With Cognitive Behavioral Therapy

   Cognitive behavioral therapy (CBT) is a form of talk therapy that helps change unhelpful behaviors and thoughts to help improve the overall quality of life. The techniques taught in CBT fit in alongside the other forms of medical treatment for idiopathic hypersomnia.

   CBT for idiopathic hypersomnia can help in the following ways:

   • It Helps Reframe Your Thoughts: Many people with idiopathic hypersomnia have to deal with taunts of being lazy, not working hard enough, or not doing the right things to overcome their sleepiness. CBT can help you come to an understanding that idiopathic hypersomnia is a biological disorder, and you are not to blame for what is happening.
   • Helps Relieve Depression And Anxiety: There is a lot of evidence to show that CBT can help relieve the symptoms of mental health, such as depression and anxiety, which often accompany idiopathic hypersomnia.^{(15, 16)} This is good news for people with idiopathic hypersomnia because research has shown that there is a lot of overlap between most sleep disorders and depression and anxiety. It is a known fact that if you don’t sleep well, you are unlikely to feel well either. And till the time you don’t target one part of the problem, the other one will continue to get worse.⁽¹⁷⁾
   • Help in Time Management: CBT for hypersomnia can help in teaching patients how to better manage their time. Early research on idiopathic hypersomnia has shown that people with this condition can be more efficient and get more done even when they are sleepy if they break up their daily schedule. It is important to understand that people with idiopathic hypersomnia cannot approach their day much like what other people do, that is in one big chunk of time. This is because they feel sleepy much faster. This is why dividing the day into smaller parts of time can make it easier and more manageable to get through the day.⁽¹⁸⁾

Having idiopathic hypersomnia may feel like you are perpetually on a sleeping pill. However, others who do not know anything about this sleep disorder are not likely to understand what you are going through. This is because people tend to assume that you are just sleepy and having late nights that cause you to feel drowsy at work or school. To help others get a better grasp of what you have to go through, it is best to educate your loved ones and friends about your condition. It is important for the people around you to understand that your sleepiness is not something you can control. Spreading awareness about idiopathic hypersomnia will also help you feel less alone.

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