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What is Idiopathic Hypersomnia? Key Facts

Scott Loeb DO
Medically reviewed by Dr. Loeb
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Scott Loeb DO
Medically reviewed by Dr. Loeb

Struggling to stay awake despite getting enough sleep? You might be experiencing idiopathic hypersomnia (IH). It’s a chronic neurological disorder characterized by excessive daytime sleepiness (EDS). Individuals with IH experience an overwhelming urge to sleep throughout the day. They’re often feeling unrefreshed even after extended periods of sleep at night.

While not as common as other sleep disorders, IH can significantly impact daily life. It’s hindering work performance, social interactions, and overall well-being. This guide is about “What is idiopathic hypersomnia?”. We’ll delve into the key facts. We will explore its signs, diagnosis, and potential management strategies. It’s all to help you gain a deeper understanding of this condition.

 

What is Idiopathic Hypersomnia?

IH is a chronic sleep disorder. It’s characterized by excessive daytime sleepiness (EDS). It’s even after getting what appears to be an adequate amount of sleep. This excessive sleepiness can manifest as:

  • Difficulty waking up in the morning. Despite sleeping for extended periods, people with IH might experience significant sleep inertia. They’re feeling groggy and disoriented for extended periods after waking.
  • Excessive sleep duration. It is another factor what can signify idiopathic hypersomnia. Spending significantly more time sleeping than the average adult. It often exceeds 10 hours per night and requires frequent naps throughout the day.
  • Irresistible need for sleep. Experiencing a constant urge to sleep throughout the day, regardless of the situation or activity.

It’s important to note that the cause of IH remains unknown, hence the term “idiopathic.” This lack of a clear cause differentiates IH from other sleep disorders with specific identifiable causes.

 

Idiopathic Hypersomnia Symptoms

Here is the list of common signs of IH. It’s important to remember that not everyone with IH experiences every sign listed here. The severity and combination of signs can vary from person to person.

Infographic showing symptoms of idiopathic hypersomnia

Excessive Daytime Sleepiness (EDS)

This is a hallmark sign of IH. It’s characterized by an overwhelming urge to sleep throughout the day. It’s even after adequate sleep at night. This sleepiness can interfere with daily activities, work performance, and social interactions.

Unrefreshing Sleep

Despite sleeping for extended periods, individuals often describe their sleep as unrefreshing. They’re feeling tired and groggy upon waking. This phenomenon is known as sleep inertia.

Difficulty Waking up

As an idiopathic hypersomnia symptom, people experience significant challenges waking up in the morning. They often need multiple alarms. And they feel disoriented and confused for extended periods after waking.

Daytime Naps That Don’t Improve Alertness

Napping can bring relief in other sleep conditions. However, it doesn’t provide significant improvement in alertness or energy levels when IH.

Cognitive Difficulties

Individuals experience problems with memory, attention, concentration, and thinking clearly. This idiopathic hypersomnia symptom occurs due to excessive sleepiness.

Mood Changes

Irritability, anxiety, and depression are commonly reported by people with IH. They’re likely due to the impact the condition has on daily life and well-being.

Physical Signs

Some people experience headaches, dizziness, lightheadedness, or fluctuations in body temperature.

Social and Emotional Difficulties

The constant battle with sleepiness can lead to social isolation, withdrawal from activities, and difficulty maintaining relationships.

 

Idiopathic Hypersomnia Causes

The exact cause of idiopathic hypersomnia (IH) remains unknown. However, researchers have identified several possible contributing factors. It’s important to note that these are just potential contributors. Further research is needed to fully understand the causes of IH. Also, these factors might interact with each other in complex ways. It makes it difficult to pinpoint a single cause for any individual case.

Infographic listing causes of idiopathic hypersomnia

Brain Abnormalities

Studies suggest individuals might have subtle abnormalities in brain structure or function. It potentially affects sleep-wake regulation. This includes areas related to sleep regulation, like the hypothalamus and brainstem.

Neurotransmitters

As idiopathic hypersomnia causes, neurotransmitters, such as histamine, can be mentioned. They play a vital role in sleep-wake cycles. Researchers suspect that low levels of histamine might contribute to excessive sleepiness in IH. However, the reason for these lower levels remains unclear.

Genetics

IH isn’t considered a strictly genetic condition. However, family history appears to be a potential risk factor. Having a close family member with IH can slightly increase your chances of developing it.

Underlying Medical Conditions

In rare cases, IH can occur secondary to other medical conditions. They are brain tumors, infections, or neurodegenerative diseases. However, in most cases of IH, no underlying medical cause can be usually identified. Hence, the term “idiopathic.”

Environmental Factors

Certain environmental factors, such as irregular sleep schedules or poor sleep hygiene, might contribute to or worsen signs of IH. However, these factors are not considered the primary cause.

 

Idiopathic Hypersomnia Diagnosis

Diagnosing idiopathic hypersomnia (IH) can be challenging. It’s because there is no single, definitive test. The process typically involves a combination of steps:

  • Detailed medical history. Your doctor will take a detailed medical history. They will explore your sleep habits, daytime sleepiness, and any other relevant signs. They will also gather information on lifestyle, medications, and family history of disorders.
  • Sleep diary. You might need to keep a sleep diary for several weeks, recording your sleep schedule, sleep quality, and any daytime naps taken. This information helps the doctor understand your sleep patterns and identify potential disturbances.
  • Physical examination. During idiopathic hypersomnia diagnosis, a physical examination may be conducted to rule out any underlying medical conditions.

Two main sleep studies are typically used to diagnose IH:

  • Polysomnography (PSG). This overnight test records various physiological parameters while you sleep. It includes brain waves, muscle activity, breathing, and heart rate. It helps identify potential sleep disorders like sleep apnea that can mimic IH.
  • Multiple Sleep Latency Test (MSLT). This test measures your sleepiness throughout the day. It’s done by measuring how quickly you fall asleep during short naps.

Additional Considerations in Idiopathic Hypersomnia Diagnosis

They are:

  • Ruling out other sleep disorders. IH shares signs with other sleep disorders. They are sleep apnea, narcolepsy, and circadian rhythm disorders. Therefore, diagnosing IH involves carefully ruling out these other conditions through the steps mentioned above.
  • No specific diagnostic test. Unlike some other sleep disorders, there is no single test that can diagnose IH. The diagnosis relies on a combination of the signs and results from sleep studies.
  • Importance of a qualified sleep specialist. Consulting a sleep specialist with expertise in diagnosing and managing IH is crucial. They can interpret the test results and provide an accurate diagnosis.

Note that this information is not a substitute for professional medical advice. If you suspect you might have IH, it is crucial to consult a doctor or sleep specialist. It’s for proper diagnosis and management.

Woman sleeping peacefully in a cozy bed

Idiopathic Hypersomnia Treatment

There is no cure for IH. But several non-medication approaches can help individuals manage their signs:

  • Maintaining a regular sleep schedule. Going to bed and waking up at consistent times each day helps regulate the sleep-wake cycle.
  • Practicing good sleep hygiene. Creating a relaxing bedtime routine, establishing a comfortable sleep environment, and avoiding stimulants like caffeine and nicotine before bed can promote better sleep quality.
  • Regular exercise. Engaging in regular physical activity can improve sleep quality and reduce daytime sleepiness. However, avoid exercising too close to bedtime, as it can interfere with sleep.
  • Light therapy. Exposure to bright light during the daytime can help regulate your circadian rhythm. This idiopathic hypersomnia treatment can potentially improve sleep-wake patterns.
  • Cognitive behavioral therapy for insomnia (CBT-I). This form of therapy can help individuals develop coping skills. They are to manage sleep disturbances and improve sleep quality.
  • Napping strategically. While napping can be tempting, it’s crucial to nap strategically. Limiting naps to 20-30 minutes in the early afternoon can help improve alertness. And this is without interfering with nighttime sleep.

Medication Approaches for Managing Idiopathic Hypersomnia

In some cases, medication may be necessary. They are to manage signs of IH alongside non-medication approaches. Here are some commonly used medications for idiopathic hypersomnia treatment:

  • Modafinil. This is the most commonly prescribed medication for IH, promoting wakefulness and alertness.
  • Sodium oxybate. This medication helps improve sleep quality and reduce sleep inertia.
  • Stimulants. In some cases, low doses of stimulants like methylphenidate might help in managing daytime sleepiness.

It’s important to note that medications have side effects. The choice of medication and dosage should be determined by a doctor or sleep specialist. It’s usually done based on individual needs and medical history. Remember, this information is not a substitute for professional medical advice. If you suspect you might have IH, it’s crucial to consult a doctor or sleep specialist. It’s for proper diagnosis and personalized treatment plans.

 

Conclusion

Idiopathic hypersomnia is a complex neurological sleep disorder. It’s characterized by excessive daytime sleepiness despite adequate sleep. While the exact cause remains unknown, potential contributors are being explored. Idiopathic hypersomnia diagnostic test involves combining medical history, sleep diary, physical examination, and sleep studies. There is no cure. However, managing IH often involves a combination of non-medication approaches. They are sleep hygiene, light therapy, and CBT-I, alongside medication if needed. If you suspect you might have IH, it’s essential to consult a doctor or sleep specialist for a proper diagnosis and a personalized management plan to improve your sleep quality and overall well-being.

 

FAQ

How is idiopathic hypersomnia different from narcolepsy? 

They differ in key aspects:

  • Cataplexy. Sudden muscle weakness triggered by emotions absent in IH. But they are a hallmark symptom of narcolepsy.
  • Hallucinations. Vivid dream-like experiences occur during sleep onset or wakefulness. They are uncommon in IH but frequent in narcolepsy.
  • Sleep paralysis. Temporary inability to move upon waking up or falling asleep. They are not typical for IH but can occur in narcolepsy.

 

What are the main symptoms of idiopathic hypersomnia?

IH symptoms:

  • Excessive daytime sleepiness (EDS). Irresistible urge to sleep throughout the day despite adequate sleep.
  • Unrefreshing sleep. Feeling tired and groggy even after extended sleep periods.
  • Difficulty waking up. Struggling to wake up in the morning, often requiring multiple alarms.

 

Can I cure idiopathic hypersomnia?

Management strategies aim to improve sleep quality and reduce daytime sleepiness:

  • Non-medication approaches. Regular sleep schedule, good sleep hygiene, exercise, light therapy, and cognitive behavioral therapy.
  • Medications. Modafinil, sodium oxybate, and stimulants (in specific cases). The doctor or sleep specialist can prescribe them.

 

What causes idiopathic hypersomnia?

The exact cause remains unknown, but potential contributing factors include:

  • Brain abnormalities. Subtle differences in brain structure or function related to sleep regulation.
  • Neurotransmitters. Potential role of low histamine levels in excessive sleepiness.
  • Genetics. Having a close family member with IH may slightly increase your risk.
  • Environmental factors. Irregular sleep schedules or poor sleep hygiene might worsen symptoms.

 

What are the potential complications of untreated idiopathic hypersomnia?

Untreated idiopathic hypersomnia can result in:

  • Impaired cognitive function.
  • Reduced quality of life.
  • Mental health challenges.
  • Heightened accident risk.
  • Relationship strains.
  • Medical conditions.

Seeking timely treatment is crucial. It’s to prevent these complications and improve overall well-being and safety.

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15:34 30 Jun 22
Just such an amazing staff that makes you feel like part of their family. I’ve been going there for over 5 years now... and each visit I get the very best care and treatments that I have ever received in the 20+ years that I’ve been dealing with severe debilitating migraines. Since i started seeing them the number of my migraines has dropped from 15-20 a month to 2-3 every 3 month. I highly recommend them …they will change your life!read more
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22:20 19 May 22
Dr. Askari was very kind and explained everything so I could understand. The other staff were nice as well. I would... have gave 5 stars but I was a little taken aback when I checked in and had to pay 600.00 upfront. I think that should have been discussed in a appointment confirmation call or email just so I could have been prepared.read more
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16:54 29 Apr 22
I love the office staff they are friendly and very helpful. Dr. JODIE is very caring and understanding to your needs... and wants to help you. I will go back. would recommend Dr. Dr. Jodie to other Patients in a heart beat. The team works well together.read more
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19:40 02 Apr 22
I was obviously stressed, needing to see a neurologist. The staff was so patient and Dr. Ansari was so kind. At one... point he told me to relax, we have time, when I was relaying my history of my condition. That helped ease my stress. I have seen 3 other neurologists and he was the only one who performed any assessment tests on my cognitive and physical skills. At one point I couldn't complete two assessments and got upset and cried. I was told, it's OK. That's why you're here. I was truly impressed, and super pleased with the whole experience!read more
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15:05 01 Apr 22
I've been coming here for about 5 years. The staff are ALWAYS friendly and knowledgeable. The Doctors are the absolute... best!! Jodie Moore is always in such a great mood which is a plus when you are already stressed. Highly recommendedread more
Monica Del Bosque
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14:13 25 Mar 22
Since my first post my thoughts have changed here. It's unfortunate. My doctor and PA were great, but the office staff... is horrible. They never call you back when they say they will, they misinform you, they cause you too much stress wondering what's going on, they don't keep you posted. They never answer the phone. At this point I've left four messages in the last week, and I have sent three messages. Twice from their portal and one direct email. No response. My appointment is on Monday morning at 8:30am, no confirmation on my insurance and what's going on. What the heck is going on, this is ridiculous!I've given up... the stress her office staff has put me through is just not worth it. You can do so much better, please clean house, either change out your office staff, or find a way for them to be more efficient please. You have to do something. This is not how you want to run your practice. It leaves a very bad impression on your business.read more
Ron Buckholz
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23:32 23 Mar 22
I was actually pleasantly surprised with this visit! It took me a long time to get the appointment scheduled because no... one answers your phones EVER! After a month, I finally got in, and your staff was warm, friendly, and I was totally impressed! I feel like you will take care of my needs!read more
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It was a nice visit. Happy staff doing all they can do to comfort the patients in a very calming environment. You ask... me they are earned a big gold star on the fridge. My only complaint they didn't give me any cookies.read more
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I had such a good experience with Lone Star Neurology, Brent my MRI Tech was so awesome and made sure I was very... comfortable during the appointment. He gave me ear plugs, a pillow, leg support and blanket, easiest MRI ever lol 🤣 My 72 hour EEG nurse Amanda was also so awesome. She made sure I was take care of over the 3 days and took her time with the electrodes to make sure it was comfortable for me! Paige was also a huge help in answering all my questions when it came to my test results, and letting me know her honest opinions about how I should go forth with my treatment.read more
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16:38 16 Apr 21
I love going to this office. The staff is friendly and helpful. The doctor is great. I am getting the best... neurological tests and treatment I have ever had. The only reason I did not give them a 5 star rating is because it is impossible to reach a live person at the office to reschedule appointments. Every time I have tried to get through to the office it says all people are busy and I am sent to a voicemail. If they could get their phone answering fixed, I would give them a strong 5 stars.read more
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00:26 25 Feb 21
Dr. Harney is an excellent Dr. I found him friendly , personable and thorough. I evidently am an unusual case. ... Therefore he spent a Hugh amount of time educating me. He even gave me literature to further explain my condition and how to follow up. This is something you rarely get from your doctors. So I am more than please with my doctor and his staff.read more
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I have been a patient at Lone Star Neurology for several years. Now both my adult daughters also are patients there. I... love Jodie. She is always so prompt whether it is a teleamed call are a visit in the office. She takes the time to explain everything to me and answers all my questions. I am so blessed to have Jodie as my doctor.read more
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Jodie is wonderful. She is very caring and knowledgeable. I have been to over a dozen neurologists, and none were able... to help me as much as they have here. Thanks!read more
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Let me start by saying that I have been coming here for years. Due to my autoimmune disease, I am in this office... once every three weeks for multiple hours at a time. The office is very clean and the staff very friendly. My only complaint would be there communication via phone. They aren't the best at responding if you leave a voicemail and expect a call back. I understand that this is prob just due to the sheer number of alls they receive daily. What I can say I like the best about the office are the people. Bobby who handles my infusions is great. I never have any issues with her setting up my infusions. She is very quick to reply to messages sent via text and if she were to leave then my whole opinion of the office may change. I also enjoy people like Matt, Lauren, and Jodi. I appreciate all that they do for me and without this team I'm not sure I would be as happy as I am to visit the office as frequently as I have to. Please ensure that these folks are recognized as they are what makes my visit to this office so tolerable :).read more
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