Narcolepsy is not as well known as MS. There are no big telethons and very limited advertising; although that is beginning to change. Before my son was diagnosed, I only knew a little bit about it, and only because I worked for someone that had narcolepsy. Even when he explained it to me, I didn't really understand. He said at times he just fell a sleep - in fact I witnessed this a couple of times.
The organization I am supporting, Wake Up Narcolepsy (WUN), has a lot of detailed information about this disease. I want to share with you some facts, and my own observations in this blog entry. Please also go to WUN's web-site (www.wakeupnarcolepsy.org) for more detailed information.
Narcolepsy is a sleep/wake disorder that affects 200,000 US citizens, and about 3,000,000 worldwide. So for those of us in the US, that's approximately 1 in 200,000. Cataplexy is an extension of Narcolepsy that affects roughly 60% of narcoleptics. Both of these are incurable at this time and like MS, they are believed to be an autoimmune disorder.
Research suggests certain brain cells that produce a neurotransmitter called hypocretin, are attacked and destroyed by the person's own immune system. Basically, it's your body fighting itself. Without the proper amounts of hypocretin, the brain can no longer regulate the normal sleep pattern it is expected to have. It is this disruption that causes the problem.
A normal person experiences 5 stages of sleep. Each stage has a purpose in allowing your brain and body to basically reset and refresh. Most of us know one of these stages - the one called REM, or Rapid Eye Movement. REM is our dream stage. During this stage, our heart rate, blood pressure, and brain activity rise - this is not the rest phase of sleep. A complete cycle takes about 70 to 110 minutes. REM only accounts for about 20% of the cycle. The cycle continues until one wakes up.
Without hypocretin to control this cycle, REM starts to take control with narcoleptics. The sleep tests my son went through showed that he was entering REM within 5 - 10 seconds of falling asleep, and was dreaming more than recovering. It is this non-recovering sleep that leads to the sleep deprivations among narcolepsy patients. They can get 8, 10 ,12 hours of sleep and wake up exhausted. Over time, this builds up until they just fall sleep - in the middle of a class, a conversation, etc.. Of course, they go right into REM and the vicious cycle starts all over again. For my son, the deprivation would also manifest itself in hallucinations, or basically dreaming wide awake. I will share more of my son's build up to his diagnosis in a future blog.
There are drugs for treating Narcolepsy, but only the symptoms and not the cause. My son takes 2 drugs. One is to help with focus when he is tired, and the second is to make him sleep. This is a very harsh drug and not everyone can take it. This drug induces a deep sleep and must be taken two times a night, as it only lasts for 4 hours. Between doses, there is really no way to wake up until the drug wears off. My son is fortunate in that his body was able to eventually acclimate to the medication, but only after many very difficult weeks of titrating up to the needed dosage. The medicine has made an overall positive difference in his life, but not without some tough sacrifices.
My son also has Cataplexy. This becomes an issue when he becomes sleep deprived. Cataplexy is a sudden episode of muscle weakness, or complete collapse. It is often triggered by sudden emotional swings like laughter, surprise, or fright.
As mentioned, I will share more of my son's journey in later blogs in the goal of helping others who may be going through this. Hopefully, this blog gave you a better glimpse into how life changing this disorder is, and the need for more support. Thanks for reading.