A person with obstructive sleep apnea OSA may be compliant with their continuous positive airway pressure CPAP and still have residual excessive daytime sleepiness. Someone with narcolepsy who takes an alertness medication may still experience residual problems with cognitive function as well. A word about sleep state misperception:Many people with insomnia, when studied in a clinical environment, discover they sleep far more than they actually believe. For hypersomniacs, sleep state misperception can also occur: they might think they are actually sleepier than they are, which maybe based on a long-standing problem with sleep debt the outcome of sleep deprivation , which they have not been able to reconcile.
It could also be something as simple as aging, which has a normal impact on sleep efficiency and quality over time. IH forces people out of jobs or makes work life a living hell. If you feel your life has been significantly altered by your daytime somnolence and you have had symptoms for at least 3 months, you may wish to speak to your doctor about a potential IH diagnosis.
A differential diagnosis is required to narrow down root causes for IH. For a differential diagnosis to take place:. Other medical or psychological conditions must also be identified when they can potentially cause excessive daytime sleepiness and fatigue.
A diagnosis of IH can only happen after extensive testing takes place. If, after investigating all these possibilities, your physician diagnoses you with IH, you have a handful of treatment options. The following medications are, or could become, treatment options for people who have IH.
Stimulants:These remain the most common source of relief for those with IH. Stimulant drugs used to treat excessive daytime sleepiness include modafinil, ADHD medications, antidepressants, amphetamine-like compounds, and sedatives. Amphetamine-like stimulants are typically monitored to guard against tolerance and dependence. Clarithromycin: This common antibiotic has been shown to decrease daytime sleepiness in people with IH that could be related to GABA regulating processes.
Current pharmacological treatments may offer welcome relief, but sometimes they can only be partially helpful. Other treatment approaches include cognitive behavior therapy in some cases. Even partial treatment is a blessing for many; it allows them to drive safely, keep working at jobs they love, and make the most of the time they do have when they are feeling most awake and alert. Lifestyle choices that can help reduce sleepiness include the avoidance of alcohol or other drugs that can make you sleep, working only during the day, and keeping to a normal, regular bedtime schedule.
Ultimately, research is still needed to solve the complex puzzle that is idiopathic hypersomnia, to conclusively identify root cause, improve accuracy of diagnosis, and bring more and better treatment options for those who suffer from it.
The Promise of Sleep. Other symptoms include:. Hypersomnolence is similar to another sleep disorder known as narcolepsy in that people experience episodes of sleepiness during the day.
Researchers are still working to identify what interactions in the brain cause hypersomnolance. It is possible that people have an increase in brain chemicals that are known to cause sleepiness. This increase can act much like a sleeping pill. Although researchers have not yet identified the specific substance or molecule that may be involved in hypersomnolence, they believe it interacts with a substance called y-aminobutyric acid GABA , which is responsible for promoting sleep in the brain.
Sedative medications used in surgery work on the same GABA substance to keep a person asleep during surgery. While these are known risk factors and potential contributors to the condition, some people may have hypersomnolence for no known reason. Hypersomnolence without a known cause is called idiopathic hypersomnolence, which affects an estimated 0. Other conditions in this category include nightmare disorder, restless legs syndrome , and breathing-related sleep disorders.
Doctors often diagnose hypersomnolence by first ruling out other possible causes of the excessive sleepiness. A doctor will also review any medication a person might be taking to help identify if this could be causing the daytime drowsiness.
A doctor may also recommend a sleep study. If there are no signs of an underlying disorder or medical cause, a doctor may diagnose a person with hypersomnolence. Stimulants are most commonly prescribed to treat hypersomnolence. Examples of these medications include:. A smaller number 39 percent stuck with the drug long term; the effects weakened over time in a few patients. The most common adverse side effects were dizziness and anxiety.
This was not a randomized controlled clinical trial. Rather, it was a retrospective analysis of patients who had already been treated. Sigurjon and Anna are part of a worldwide community of people with IH and related sleep disorders.
Many people with IH have had to stop school, leave their jobs, or apply for disability. A nonprofit patient advocacy organization called the Hypersomnia Foundation is working to raise awareness and promote research. To gather more information on how the disorder manifests in different people, the Hypersomnia Foundation, in cooperation with South Dakota-based Sanford Research, has created a patient registry.
It has more than 1, participants so far. The Foundation organizes conferences on IH, the first of which was held at Emory, maintains a directory of healthcare providers with experience treating IH and related disorders, and has recently implemented a research award program. It has also created guides for families and caregivers on educational accommodations and considerations for undergoing anesthesia.
Under current criteria, the prevalence of IH is estimated to be around 1 in 3, When Sigurjon tried flumazenil on camera, it was not part of a clinical trial. Although flumazenil is not FDA-approved for the treatment of sleep disorders, the FDA allows doctors to prescribe a drug for an unapproved use when they judge that it is medically appropriate for their patient.
It can be difficult to get insurance coverage for flumazenil, and out of pocket, it costs several hundred dollars per month. In , Emory obtained a patent for the use of flumazenil to treat hypersomnia and related sleep disorders, and the technology has been licensed to a company that is conducting clinical studies on a related drug for idiopathic hypersomnia.
Sigurjon was actually diagnosed in in Iceland with a form of narcolepsy: type 2, or narcolepsy without cataplexy. Cataplexy is a distinctive symptom, which is tightly associated with the type 1 autoimmune form of narcolepsy: muscle weakness triggered by emotions or stress. People with narcolepsy who do not have cataplexy are usually diagnosed through the Multiple Sleep Latency Test.
In this test, someone is asked to take four or five naps throughout the day. If they zonk out quickly enough, averaging a delay of less than 8 minutes, and enter REM sleep during two or more naps, then a narcolepsy diagnosis applies. Neurologist Lynn Marie Trotti seated with research associate Prabhjyot Saini, preparing for a test run on her brain imaging study. Photo courtesy of Diana Kimmel. David Rye and Lynn Marie Trotti have shown that the sleep latency test works well for type 1 narcolepsy but provides inconsistent results for people with type 2 narcolepsy and IH.
That is, the test can put someone in one of those last two categories, but if they take the test again, they will often get a different result.
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