Living with a narcoleptic

No it isn't related to epilepsy though they sound similar. I hope to inform with this lens. I do appreciate your visit and please feel free to leave comments.

It was approximately 1983 when my husband, Bruce, found out he had narcolepsy. Neither of us knew much about the disorder. Before Bruce was diagnosed, he thought he was having a breakdown or acquired a tumor. He had to have a cat scan first to reassure that he wasn't. His doctor referred his case to a neurologist. The neurologist, after talking with Bruce about his symptoms, gave him a medical text book with a description regarding narcolepsy. Bruce indicated that was exactly what was happening to him. My husband had a "text book" case of it. As time went by, we found it he had a very severe case with all the, excuse the phrase, "bells and whistles". However, only after a sleep study was he diagnosed 100% that he had narcolepsy. With Bruce, along came the sleep apnea.

Narcolepsy is a chronic sleep disorder characterized by overwhelming daytime drowsiness and sudden attacks of sleep. Severe cases of narcolepsy may include the following: having extreme physical reaction to emotions (anger, humor), sleep paralysis, sleep apnea, cataplexy or loss of muscle tonus (the steady reflex contraction that resides in the muscles concerned in maintaining erect posture), excessive daytime sleepiness (EDS), extreme dreaming and/or vivid hallucinations. However, on the last point, the vivid hallucinations, through my husband's experience and my observation, it is not clear if these hallucinations were caused by the dreaming (or due to it), or by the medications taken to treat the narcolepsy.

Bruce needed the CPAP machine to treat his sleep apnea. This can be more severe than the narcolepsy as you can die from sleep apnea but not from narcolepsy itself. I have to say that he never got use to the machine and after awhile would not use it. They have better machines today; easier to wear and adapt to.

Not getting enough sleep can contribute to insomnia. You can't sleep or you need to stay awake. Taking your meds to late in the day throws everything off. Bruce was a night person and loved staying up and it was hard to unwind. Sometimes he would take a "drug" holiday. If he wasn't going to be doing much on a weekend, he would stop Friday and would sleep through a good part of the weekend to, catch up.

Rapid eye movement (REM) and non-rapid eye movement (NREM) comes in to play. Take a moment here, and go over to Mayo Clinic for information on REM sleep.

There is no cure for narcolepsy and it still isn't real clear what causes it. It has been only recently that they suspect that those who have narcolepsy may be missing a chemical (hypocretin) that causes autoimmune disorder within the brain.

Many people who acquire it, do so at an early age, usually within their teens. Bruce was about 46 when he first acquired the symptoms. The very onset of problems was trying to stay awake while driving. It got to the point that he needed black coffee while driving, the window down or he mentioned, a couple of occasions he would slap he leg to stay awake. He thought it was just being overly tired or possibly stress. He also had episodes of light patterns in front of his eyes. What finally sent him to the doctor was this: He was driving to a job around the mid part of the day and by the time he got there, pulled into the parking lot and parked the car, he woke ten minutes later with his hand on the ignition key. He had got to the driveway, parked and fallen asleep. We thanked the Lord he did not have an accident!