Originally Published: February 9, 2013 9:59 p.m.
Dear Dr. Rosenberg,I have narcolepsy. My doctor put me on a medication called Xyrem that is taken at night. I took one dose at bedtime and another dose three hours later. It was supposed to help me stay awake during the day. After three weeks I saw no difference so I stopped it. My doctor was upset that I stopped it and felt I should have continued it and increased the dose. What do you think? I'm as sleepy as ever.A: Your doctor was right. Xyrem takes eight to 10 weeks to improve sleepiness. I would suggest you give it another chance and be patient. Xyrem has been shown to be one of the most effective medications for improving sleepiness in people with narcolepsy. However, its effects take time.Dear Dr. Rosenberg,My wife was diagnosed with sleep apnea. Her doctor said it was severe and probably contributing to her high blood pressure and diabetes. She tried a CPAP mask for a few nights but couldn't wear it. We recently read about a muscle stimulator for sleep apnea. Is it available?A: No, not yet. You are referring to the hypoglossal nerve stimulator. Preliminary studies, including one recently published by Johns Hopkins University, look promising. However, there are still many bugs that need to be worked out. In addition, it will require a surgical procedure to be implanted and will likely be quite expensive. Therefore, whether many insurers will cover it may be problematic. In the meantime, your wife needs to try CPAP for more than a few days. She may need referral to a sleep center. Many of the accredited centers have had great success working with patients and getting them compliant with CPAP. Sometimes a change of masks or type of pressure delivery can make all the difference.Dear Dr. Rosenberg, I have had frequent nightmares for several years and was recently diagnosed with sleep apnea. Do you think my nightmares might be related?A: Yes, there is a good possibility. A recent study showed that there is a subset of patients with sleep apnea that have frequent nightmares. These patients tended to have sleep apnea that was most severe during REM sleep (dream sleep). In those who were compliant with their sleep apnea therapy there was a 90 percent reduction in their frequency of nightmares.Dear Dr. Rosenberg,My son is 28 years old and was just diagnosed with narcolepsy. He has had symptoms for years. I have heard that it is not uncommon for there to be a long lag be-tween the onset of symptoms and getting it diagnosed. Is that true?A: Yes, the average delay in diagnosis from the onset of symptoms is about 10 years. This is probably attributable to it being an uncommon disease and one which the average healthcare provider rarely, if ever, is exposed to. Importantly, a study from Germany published in the Journal Sleep Medicine showed that the earlier the diagnosis the better the patient did with regards to education and occupation. Dr. Robert Rosenberg, board-certified sleep medicine specialist, will answer readers' questions by incorporating them in future columns. Contact him through the form at www.answersforsleep.com or via mail at the Sleep Disorders Center of Prescott Valley, 3259 N. Windsong Drive, Prescott Valley, AZ 86314.