Many years ago I stumbled on the term Excessive Daytime Sleepiness (EDS). I had babies and young children then, four in six years. I was always exhausted. The term spoke directly to me. It helped me to be sure I didn't express my chronic fatigue in irritability that might undermine my parenting or my marriage. How nice to have a label for the way I felt!
Now, more recently, I've become interested in folks whose frequent exhausted feelings stem from a biological rather than demands-of-life cause. These folks feel like they will never succeed in paying off their sleep debt. Does that sound like you? Or like someone you know?
What can it mean that you feel tired too much of the time?
Here are four common signs that you may have major hyper-somnolence disorder, a new clinical diagnosis for what is thought to be a neurological disorder that causes excessive sleepiness.
Narcolepsy is a related sleep disorder from the epilepsy family. In general, narcolepsy adds cataplexy to the four symptoms above.
As defined by Wikipedia, "Cataplexy is a sudden and transient episode of muscle weakness accompanied by full conscious awareness, typically triggered by emotions such as laughing, crying, terror, etc. It is the cardinal symptom of narcolepsy with cataplexy, affecting roughly 70% of people who have narcolepsy and is caused by an autoimmune destruction of the neurotransmitter hypocretin, which regulates arousal and wakefulness. Cataplexy without narcolepsy is rare and the cause is unknown."
Chronic fatigue syndrome often includes a similar set of symptoms as hypersomnia. In addition, to be diagnosed with chronic fatigue usually folks need also to have muscle aches and pains.
What can you do if you think that you do have excessive daytime sleepiness, i.e. EDS or hypersomnia?
Start by checking in with your doctor. Doctors can rule out medical causes like mono, recovering from pneumonia, a bad case of sleep apnea, or a thyroid problem.
If this description of excessive daytime sleepiness or hypersomnia fits you, and the cause is more than either real-life demands that cut into your sleep time or an obvious medical problem, your experiences of going to the doctor may prove frustrating. That's because the disorder is not yet well understood. Other than prescribing ADD-type medications to sustain alertness, medications which have limitations and downsides, doctors' ideas about how to treat this disorder are still in their infancy.
On the positive side, while the current medications are not optimal they can be very helpful for some people.
One other suggestion: if you are experiencing too many of the above-listed symptoms without a clear medical or life-challenges basis, you may want to ask your doctor for a referral to a trained sleep specialist.
Most importantly, if any of these symptoms sound like you, be sure to check out these two websites: LivingWithHypersomnia.com is an excellent website that brings together people with the illness and emerging knowledge about the disorder from all over. As to current promising new ideas for understanding and treatment, check out the hypersomnia research website.
Please do write in a comment below if you have ideas to share. We all get by with a little help from our friends.
Denver clinical psychologist Susan Heitler, Ph.D, a graduate of Harvard and NYU, is author of Power of Two, a book, a workbook, and a website that teach the communication skills that sustain positive relationships.
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