Narcolepsy is a condition which affects 1 in 2-3,000 people but commonly goes undiagnosed for years. Awareness of it as a recognisable medical condition is fortunately increasing and there are now a handful of units in the UK, including the RSSC where people with suspected narcolepsy can be investigated and treated.
The main symptoms are:
- Excessive daytime sleepiness (EDS)
- Cataplexy - sudden muscle weakness brought on by emotion ("conscious collapse")
- Hypnagogic & Hypnopompic hallucinations - dreams invading wakefulness
- Sleep paralysis - a frightening feeling of paralysis upon waking from sleep
Testing for Narcolepsy at the RSSC
If you regularly experience some or all of these symptoms then you should consult your GP about being referred to a sleep centre for further investigation. If referred to the RSSC you would typically be admitted overnight to our sleep laboratory for a sophisticated sleep study called a polysomnogram (PSG) and multiple sleep latency test (MSLT).
Treatment of Narcolepsy
Some people with narcolepsy have only mild symptoms and are able to use regular naps during the day to avoid falling asleep when they need to stay awake. When daytime naps are not practical or sufficiently effective alone then drug treatment is considered. There are now effective medicines which increase alertness and are generally well tolerated. If symptoms such as cataplexy remain troublesome then separate drug treatment can be used, which again is effective and usually well tolerated.
Case Study
A 25-year-old hairdresser (K) went to her GP with the problem of increasing difficulty staying awake during the day. Her sleepiness had developed over the previous 3 years. It had reached the stage where she was falling asleep during work breaks, and sometimes needed rousing by her boss to return to her clients. On days off she would regularly sleep half the day away. This was not an immediate problem, but she and her partner were hoping to start a family and she was worried that her sleepiness would make this impossible.
K was also experiencing embarrassing symptoms of sudden leg weakness whenever she laughed (cataplexy). On a number of occasions she had collapsed to the floor behind clients in the middle of doing their hair. She had begun to avoid interacting with customers and it had been commented to her boss that she had developed an aloof manner.
K's GP referred her to the RSSC. She underwent a PSG and the next day had nap studies. After the final study had been analysed she was met by a sleep specialist. He confirmed that she had narcolepsy and explained that it was responsible for both her sleepiness and cataplexy. K went home and started treatment the next day for her sleepiness. After supervised dose adjustment she noticed a marked improvement in her level of alertness. She no longer struggled through the day and rarely needed to have a nap at work. Her cataplexy had improved somewhat but was still troublesome, so at her outpatient review a few weeks after the PSG it was decided to try her on a second medicine, this time for her cataplexy. Her cataplexy quickly improved to only rare occurrences and K was able to engage with her clients with renewed confidence.