I’ve recently been asked to write a post about what narcolepsy actually is and how it affects me. Given that for me my narcolepsy is coupled with diagnoses of depression, hypermobility and chronic fatigue syndrome it is sometimes difficult to distinguish which symptom goes with which illness – but I’ll give it a go. The thing is, many people with narcolepsy also suffer from the aforementioned and similar illnesses. In fact, in an article published in Med Page Today on June 6, 2013, it was discussed that “patients with narcolepsy had a substantially higher incidence of…comorbid diseases”. In the study it was found that people with narcolepsy were:
- 3.7 times more likely to have nervous system complications
- 3.8 times more likely to have a mental illness
- 2.7 times more likely to have a digestive illness
- 3.5 times more likely to have a musculoskeletal problem
- 2.2 times more likely to have a genitourinary illness
Given these numbers, it is highly unlikely that you would ever come across 2 narcoleptics with an identical list of health complaints. So whilst I will now endeavour to explain my narcolepsy, please note that it won’t fully match that of any other accounts you may come across.
The most common symptom for those with narcolepsy is known as Excessive Daytime Sleepiness or EDS for short. This is probably the hardest symptom for people to understand as “everyone gets tired during the day”. After all they don’t call it 3.30itis for nothing! Yes, people naturally hit a lull mid-afternoon, but EDS is a whole new level of siesta sleepiness and it doesn’t only hit mid-afternoon. It will hit multiple times a day, regardless of how much sleep we’ve had and it will hit hard!
Now, before you suggest an earlier bedtime, more caffeine, a better diet or more exercise…it is not that simple. In fact, it is often recommended that caffeine be avoided by people with narcolepsy.
I won’t go too far into the science of it all – but essentially there’s a part in the brain dedicated to regulating the sleep/wake cycle. Studies have found that in narcoleptics a large chunk of these cells have died which therefore prohibits us from being able to keep with the natural flow of sleep. This is what causes us to want to sleep multiple times during the day and wake multiple times during the night.
Levels of tired are not easy to explain or understand, but it is said that a healthy person would have to have been awake for 48-72 hours to feel the same level of sleepiness as that felt during an EDS episode. It is this symptom that causes us to easily fall asleep at any point during the day in any location. It’s not just the overpowering need to sleep that is felt here, it’s the physical and mental pain that comes with this level of exhaustion such as:
- Brain fog
- Lacking concentration
- Muscle weakness
- Heightened emotions
Another thing with EDS is the type of sleep had during a nap. Those who have studied psychology would know that there 5 stages of sleep. There is non-REM stages 1-4 followed by a REM stage. REM usually occurs after around 90 minutes and is typically when dreaming occurs. For people with narcolepsy REM starts a lot earlier in the sleep period. During a short nap a person shouldn’t hit REM – those with narcolepsy will often have periods of REM sleep showing in the 4 x 30min naps they have to take during their diagnostic sleep study.
Given that each stage of sleep has its own restorative purposes, it is of little wonder that people with narcolepsy awake feeling unrefreshed and suffer a realm of other illnesses.
NB I haven’t read any studies around this point – but it’s an interesting hypothesis I will be looking into further.
So typically that’s my main experience with narcolepsy. It may or may not sound like much, but if you can imagine living your life with the EDS symptoms you can see how disruptive it can be to your work, social and family life. Even one late night can exacerbate symptoms for days or even weeks if there hasn’t been a chance to catch up on sleep and rest.
In addition to EDS there are 3 other symptoms common for people with narcolepsy. There is cataplexy, which occurs in about 70% of those with narcolepsy and sleep paralysis and hallucinations which are somewhat less common. Only 10-25% display all four of these major symptoms during their illness.
Personally, aside from EDS the only other symptom I have experienced is sleep paralysis and hallucination. Even then, I’ve only had one episode of this.
As I don’t have cataplexy, I don’t really want to comment too much on what it is. Essentially it is a sudden loss of muscle control, causing the person to stumble, fall or collapse. It is typically triggered by emotion whether it be through laughter, anger, sadness, surprise or any other range of emotions. This website gives a bit more detail into the condition.
So there you have it. Quite the essay, I know, but it just shows that it’s not as simple as it seems in the movies. It’s a lot more complex and debilitating than many people realise.