Primary and Idiopathic Hypersomnolence: Difficult To Live With, More Difficult To Treat

Most people are familiar with names of certain sleep disorders but a name like primary and idiopathic hypersomnolence may leave many confused.

To begin with what is hypersomnolence? Why are so many people talking about it and how does it impact life?

What the disorder is all about

All illnesses are sad, but there is something particularly tragic about this sleep disorder. The age of onset is during the prime years of one's life - between 15 and 30 years of age. As if this was not tragic enough, it is a condition that does not get cured and remains for life. Fortunately, only 5% of the US population is affected by it, termed aptly as a 'rare disease' by the Office of Rare Diseases (ORD) of the National Institutes of Health (NIH).

It is the medical name for excessive daytime sleepiness and the chronic condition is called hypersomnia. Most sufferers and their families tend to ignore this critical warning sign resulting in the condition remaining undiagnosed and untreated till such times that it completely overpowers all aspects of life for the individual.

Typical hypersomnia symptoms

- Excessive daytime sleepiness. The patient is likely to doze off irrespective of time and place.
- Takes frequent daytime, non-refreshing naps but the need to sleep continues.
- Disorientation and confusion on waking up.
- Sleeps for more than 10 hours
- Irritable, depressed
- Slurred speech; impaired thinking
- Poor reflexes, lack of appetite

At this point, if you are possibly thinking about options available for treatments. In this regard, you have to remember that the term 'idiopathic' means 'no known cause'. This means that all therapeutic initiatives geared to cure the condition only provide symptomatic relief and do not address the root cause of the illness.

How doctors help the patient

Doctors treating this disorder usually adopt a multi-prong cure strategy involving:

- Since this disorder affects not just the patient but also his or her immediate family and close friends, professional counseling usually help the patient to cope better as the environment gets more understanding.
- Quitting alcohol, maintaining regular sleep routine, etc are some of the lifestyle alterations recommended.
- Self-help initiatives involve doing physical exercise, avoiding stimulants, etc.
- Prescription medicines include Modafinil, sodium oxybate, amphetamine, methamphetamine, dextroamphetamine, methylphenidate, and selegiline. Also recommended are Tricyclic antidepressants (TCAs), monoamine oxidase inhibitors (MAOIs), clonidine, levodopa, bromocriptine, amantadine, and methysergide

Single indicator but several sleep disorders

Feeling excessively sleepy could indicate not just hypersomnia but also sleep apnea and narcolepsy. This usually creates confusion in the mind of the patient who wonders which of these three he or she is suffering from. How does one clear such diagnostic dilemma?

Before we grasp the subtle differentiators that exist amongst these illnesses, let us understand one disorder at a time. For example, what is narcolepsy? It is a kind of sleep disorder known for the sudden sleep attacks it causes. However, with other illness, sleep may descend gradually.

This disorder has another typical characteristic. The frequent narcoleptic daytime naps are refreshing. Is it the same way with other sleep problems?

What about sleep apnea? This is a sleep disorder that usually sets in when the patient is about 50 years of age. Also, it is caused when the brain does not function properly. Narcolepsy on the other hand, sets in earlier and is caused by malfunctioning central nervous system. Sleep apnea treatment options involve the use of devices, change of sleeping position, or even surgery if the situation is severe. Narcoleptics need behavioral therapy as well as medicines to get cured.

The above information has made it clear that primary and idiopathic hypersomnolence is unique in more ways than one - though the main feature is similar to that of many other illnesses - excessive daytime sleepiness.

Marc MacDonald is an independent health researcher on sleep apnea treatment, hypersomnia, and narcolepsy, among others. To know more about this article's main topic, visit his hypersomnia website.