Idiopathic Hypersomnia
Hypersomnia means “excessive sleep.” Patients with idiopathic hypersomnia sleep a reasonable amount at night (at least six hours) but have difficulty waking up and always feel tired and sleepy. In addition to excessive daytime sleepiness, people with idiopathic hypersomnia may:
- Sleep enormous amounts every day (10 hours or more)
- Display “sleep drunkenness,” such as extreme sleep inertia, difficulties waking up with alarm clocks and feeling groggy for long period of times.
Idiopathic hypersomnia (IH) belongs to a class of sleep disorders known as Central Disorders of Hypersomnolence. This group of sleep disorders includes narcolepsy types I and II, idiopathic hypersomnia, Kleine-Levin syndrome, insufficient sleep syndrome, and hypersomnia due to medical, hypersomnia due to medication or substance, and hypersomnia associated with a psychiatric disorder.
IH is a chronic disorder that remits in less than 1 in 6 cases, and that responds poorly to traditional treatments. It often negatively impacts upon the patient’s life to such an extent that working, socializing and even driving eventually become impossible due to an inability to sustain vigilant wakefulness.
Causes
The exact cause of idiopathic hypersomnia is unknown. Researchers suspect that a genetic link may be possible because it appears to run in families, but there is no proof of this. It seems to be a rather uncommon type of sleep disorder. The condition usually develops slowly before the age of 30. In the vast majority of cases, idiopathic hypersomnia is a lifelong condition.
Idiopathic hypersomnia causes people to sleep a long time during the night. People may sleep more than 10 hours a night. Despite such long periods of sleep, people with idiopathic hypersomnia feel very sleepy during the day. No matter how much they nap during the day, they still feel very sleepy. This condition can be very disabling, limiting a person’s ability to maintain employment, relationships, and quality of life.
Symptoms
The most common symptoms shared by sufferers of IH are –
- Greater than 10 hours sleep per 24 hour period – often as much as 16+ hours per 24 hour period
- Long, unrefreshing naps that typically last several hours
- Awakening from sleep feeling unrefreshed, often with significant sleep inertia (commonly known as ‘sleep drunkenness’)
- An inability to be woken from sleep – even multiple alarm clocks or physical attempts made by family/friends are largely unsuccessful.
- Cognitive problems caused by the overwhelming desire to sleep (commonly referred to as ‘brain fog’)
As the condition progresses less common symptoms can include –
- Anxiety and depression – often as a result of the limits this disorder imposes upon what the patient is able to do with their limited time awake
- Raynaud’s type phenomena – freezing cold hands and feet
- Loss of impulse control – especially in regard to food
- Impotence
Those with IH often describe themselves as experiencing two types of sleepiness –
- A physical exhaustion that ‘normal’ people might experience after missing several nights sleep in a row.
- A cognitive exhaustion similar to Executive Dysfunction that can make even simple tasks like reading, conversation with friends, or watching a movie beyond their reach.
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 people awake during the day. See treating narcolepsy for more information on these medicines. Antidepressants may be prescribed if emotional problems are interfering with the sleep.
The most common treatments prescribed are:
- Amphetamines (such as Dextroamphetamine® or Adderall®)
- Methylphenidate (such as Ritalin® or Concerta®)
- Modafinil (such as Provigil® or Modavigil®)
- Armodafinil (such as Nuvigil® or Waklert®) (Currently unavailable in Australia)
- Sodium Oxybate (such as Xyrem®) (Currently unavailable in Australia)
- Antidepressants
Lifestyle Changes
- Keep a consistent sleep schedule
- Avoid caffeine and alcoholic beverages
- Talk to others about the condition.
- Don’t over extend oneself.
- Avoid operating motor vehicles or using dangerous equipment
- Avoid working at night or social activities that delay the bedtime
Alternative Treatment
Exercise – Regular exercise not only helps people to lose weight and gain strength, it can also help treat sleep disorders naturally. Regular exercise increases feel-good chemicals such as serotonin in the brain, which can help ease feelings of anxiety and encourage restful sleep.
Nutrients that can help manage IH include calcium and magnesium, choline, chromium picolinate, coenzyme Q10, omega-3 fatty acids, B vitamins, vitamin C complex (including bioflavonoids) and vitamins D and E.
St John’s wort is an herbal remedy recommended for IH because of its action as a nervous system treatment. The herb might improve sleep quality and calm the nerves, which can be affected by the disorder as well as the emotional effects of living with the disease.
Ginkgo biloba nourishes the nervous system in two ways: It protects cells with its antioxidant effects and it improves circulation to the brain. Both of these functions might improve the condition of IH. The active constituents in ginkgo leaves are flavonoids and terpenoids. Balch recommends not taking the herb if you have a bleeding disorder or upcoming surgical procedure.
Gotu kola is an ayurvedic herb native to subtropical climates and has long been used in India as a treatment for the support of veins. It works by strengthening connective tissues. When veins are strong, blood flow is improved and the brain receives more oxygen and nutrients, which might be an effective treatment for narcolepsy, according to Balch.
Country mallow is an ayurvedic herb that stimulates the body and might help those suffering from IH stay awake. Be careful using this herb if you have a cardiovascular disorder, as it causes a rise in blood pressure.
Reference –
https://www.patientslikeme.com/conditions/513-idiopathic-hypersomnia
https://stanfordhealthcare.org/medical-conditions/sleep/idiopathic-hypersomnia.html
http://www.talkaboutsleep.com/message-boards/forum/idiopathic-hypersomnia/
http://idiopathichypersomnia.org/
http://www.medmerits.com/index.php/article/idiopathic_hypersomnia/P9
http://www.nodss.org.au/ih.html
http://www.orpha.net/consor/cgi-bin/OC_Exp.php?lng=en&Expert=228315
http://www.mayoclinic.org/diseases-conditions/hypersomnia/basics/definition/con-20036556