Sleep Disorders Community
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Just Wondering if there are any others with a dx of narcolepsy on this site?

If there are i would like to know how long it took for you to get your diagnosis, what medications your are taking, and if you have any tips on how to live productively.

I am newly dx'd and am struggling a bit so any suggestions would be wonderful.

Thank you-
1 Responses
Avatar universal
Hi, how are you doing. Narcolepsy is a neurological disorder that affects the control of sleep and wakefulness in which people will experience excessive daytime sleepiness and intermittent, uncontrollable episodes of falling asleep during the daytime. In many cases usually begins between the ages of 15 and 25, but it can become apparent at any age. Cause is not known. Excessive daytime sleepiness (EDS) - interferes with normal activities on a daily basis, whether or not a person with narcolepsy has sufficient sleep at night. People with EDS report mental cloudiness, a lack of energy and concentration, memory lapses, a depressed mood, and/or extreme exhaustion. Cataplexy - This symptom consists of a sudden loss of muscle tone that leads to feelings of weakness and a loss of voluntary muscle control. It can cause symptoms ranging from slurred speech to total body collapse depending on the muscles involved and is often triggered by intense emotion, for example surprise, laughter or anger. Hallucinations - Usually, these delusional experiences are vivid and frequently they are frightening. The content is primarily visual, but any of the other senses can be involved. These are called hypnagogic hallucinations when accompanying sleep onset and hypnopompic hallucinations when occurring during awakening. Sleep paralysis: This symptom involves the temporary inability to move or speak while falling asleep or waking up. These episodes are generally brief lasting a few seconds to several minutes. After episodes end, people rapidly recover their full capacity to move and speak. Modafinil is a central nervous system stimulant used for the treatment of narcolepsy. It is also used for the treatment of excessive daytime sleepiness caused by obstructive sleep apnea/hypopnea syndrome and shift-work sleep disorder. It would be better to consult your doctor before you chose to take any drug for an evaluation. Lifestyle adjustments such as avoiding caffeine, alcohol, nicotine and heavy meals, regulating sleep schedules, scheduling daytime naps (10-15 minutes in length), and establishing a normal exercise and meal schedule may also help to reduce symptoms. Please post your thoughts. Take care.
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