Wake up to Narcolepsy!

Narcolepsy is a chronic sleep disorder for which there is, as yet, no cure. It commonly manifests itself during adolescence, although it can begin earlier, in childhood, or much later in adulthood. The condition takes the form of a syndrome, with four main components. People with the condition may have all four of these symptoms, or only one or two, and the degrees to which each individual suffers each symptom can vary greatly.

Most people with narcolepsy suffer from Excessive Daytime Sleepiness. This is usually the first symptom that people notice, (but not always), and for many people, it is the most devastating symptom. For some it means feeling drowsy throughout the day, even though they have had ample sleep the previous night. For others, it can mean overwhelming drowsiness, and sleep attacks, forcing the person to take naps. Often it is impossible for them to control the urge to sleep. The feeling is so strong that sometimes people are asleep before they have time to do anything about it. Attacks can be very sudden. In severe cases of excessive day-time sleepiness, people may have trouble keeping a job because of the need to nap frequently or at inappropriate times, for instance during meetings, or whilst driving. It can interfere with every aspect of their life, jobs, family, leisure pursuits etc. To add to their problems, people with narcolepsy often find it difficult to sleep at night, and wake frequently. Read the rest of this entry »

I set this blog up a few days ago, and true to form it’s taken me a while to get back. Why? Because I can’t stay awake. The medication I have been given isn’t working and it will be a while before I can do anything about it. However, in the meantime, it’s good to know that what I experience is also experienced by others. It helps me cope, knowing that I am not mad! I belong to a forum which is for folk with narcolepsy. It is run by a site which specialises in sleep disorders called http://www.sleepnet.com/ It is a big site covering all the major sleep disorders, such as Sleep Apnea, Insomnia, Narcolepsy, Restless Legs Syndrome, sleeplesssness in children and infants and sleep deprivation. I had been diagnosed with sleep apnea, and was looking forward to being re-energised after a few nights with a C-PAP machine  (Continuous positive airway pressure). Unfortunately it didn’t help with the sleepiness but it did stop the apneas, so I am still using it, but that left me wondering what else was going on. It was by accident that one day I stumbled across a description of Narcolepsy on the Sleepnet site and investigated further. Suddenly, reading everyone elses’ accounts of their experiences, the jigsaw pieces began to fit. After a while I plucked up the courage and asked to see my consultant again, but although he sent me for another sleep study, he was at pains to tell me that he did not think it was narcolepsy. However, by now I was utterly convinced and I have recently been diagnosed with narcolepsy. Although my current treatment is not working, I am hopeful that by trial and error, I will eventually find something that will relieve this perpetual sleepiness.

For more information on sleep disorders visit http://www.sleepnet.com/.