I've made a massive assumption that anyone who comes across my blog will have either experienced narcolepsy or have some knowledge of what the condition is. Apologies, I got a little ahead of myself. I remember how I was blinded by terminology that was difficult to understand when first researching the subject. So although I'm no medical specialist, I can describe how it feels from a patient perspective and explain the many symptoms (including the lesser discussed ones), using terms that may make more sense to someone new to the condition. But first...
What is it and why does it occur?
Most people have heard of the word and some think they know what the condition is. I can pretty much guarantee that unless you are a sufferer, the partner/carer of a sufferer or a specialist with a wealth of experience in treating or researching the area, you will not have anything near an accurate understanding of its symptoms and/or cause. I wouldn't be at all surprised if its the most incorrectly perceived condition ever! So what is it? Well in short a life-long, chronic neurological condition that causes no end of problems, all stemming from one area of the brain...the hypothalamus. Despite being very small in size, the hypothalamus has a very big role in maintaining automatic, biological functioning by producing hormones that control sleep, appetite, thirst, body temperature, moods and sex drive. It also influences hormone production within the gland system, including the incredibly important pituitary gland - the control room to a bigger system designed to maintain balance, encourage cell growth etc. So it's really NOT just a 'sleeping condition'!
Orexin or hypocretin (which are the same thing, just named differently by two different researchers) are neurotransmitters or communicators for the hypothalamus, which are needed to regulate the everyday, biological functioning mentioned above. PWN (people with narcolepsy) have a depleted supply of these communicators and consequently the hypothalamus becomes ineffective at delivering messages. Unfortunately the body doesn't naturally produce oxerin and at the moment there is no treatment to temporary or permanently boosts levels. Individuals with the condition can either choose to manage symptoms naturally through regular, strategic daytime napping or use a variety of different medications that are symptom specific; these unfortunately don't work well for everyone. The most exciting recent development within treatment research is the possible development of a nasal spray, which may be successful at 'topping up' oxerin levels in the future. However from what I've read online, pharmaceutical companies have yet to show an interest in researching this further.
Life effects
There is little research that concentrate upon symptoms and its effects upon the lives of PWN, however it is my belief that they are easily comparable to those frequently identified in other chronic, neurological conditions such as MS (Thomas et al, 2009, Mitchell, 2005). Leading researcher and all round narcolepsy guru, Dr Mignot has stated that the negative "effects are even more severe than the well-documented deleterious effects of epilepsy" (2013), yet still the condition continues to be regarded as just another mild sleeping disorder within the general public arena. Sadly, this is also an opinion shared by some health care professionals who have little experience in treating the condition effectively.
Symptoms
There are many, however literature and research in the past has mainly focused upon sleep due to poor understanding of the cause of the condition. I'm glad to say that there are many research projects emerging now addressing other associated symptoms, which can vary from person to person. PWN will experience some or all the symptoms listed below.
- Excessive exhaustion / Poor cognitive functioning. Everyone gets tired, but this is different. PWN do not find sleep at all refreshing/restorative as our bodies have a tendency to 'skip' critical stages of NREM sleep that our bodies require to remain healthy. We accumulate a sleep debt every day that goes by, which may exaplain why severity of some symptoms vary from person to person. For me, the exhaustion sits heavy within my body and I consciously have to force myself to work harder to complete basic, everyday tasks that I hadn't given a second thought to previously. There's a frustrated awareness that I'm physically reaching (and pushing beyond) my bodies limitations, even though I'm not achieving very much. When I step beyond these limits (which I'm afraid is easily done), my body will send warning signals in the form of visual disturbances and my sight takes a soft-focus, hazy feel. Cognitive processes (thought processes) become affected, with 'brain fog' settling in making thinking, conversation, memory and word recall difficult. If I ignore the warning signals it's likely to end in a migraine, which can sometimes take days to recover from. If you're reading this purely to educate yourself about the condition (something that I thank you for doing), ask yourself how you would feel after no sleep for 48-72 hours. I've read that it takes this long to adapt an average persons sleep cycle, before it can become comparable to someone with narcolepsy. I'll add a link for this source when I find it again.
- Sleepy autopilot/automatic behaviour. A pretty dull symptom and something that everyone has experienced at some time. However working on autopilot can have massive and sometimes dangerous implications for people with narcolepsy, as we are at risk of actually being asleep during these periods. I think this is a concept that most people would question and struggle to understand as everyone knows when they are asleep, don't they? Sleep tests & brain scans have repeatedly proven that we may look, feel and function as if we are awake, but our brains can sometimes be in sleep mode; giving a whole new meaning to the phrase 'I can do that in my sleep'. I didn't really believe it myself until I completed my assessment sleep tests and shown proof that my brain was asleep when I could have sworn I was awake. I find this a frightening thought - Its not such a big deal if people know their bodies well and have found a way to manage symptoms, whether that's with medication or naturally. The physical signals/signs before reaching this state can be easily identified and necessary action can be taken as appropriate. However if you're in the early days where symptoms are haphazard and merge into each other quickly, then let me be clear....this can be dangerous. Imagine it happening whilst you were driving on a fast, busy road. It doesn't bear thinking about.
- Uncontrollable daytime sleeping. The symptom that receives the most publicity and refers to the inability to stop ourselves from falling asleep, no matter how hard we try. I would like to make it clear that the majority of people with narcolepsy don't just find themselves falling asleep with no warning at all. These uncontrollable episodes typically occur when we have pushed past our limitations and ignored bouts of excessive exhaustion. On the occasions I've been stubborn and tried to work through the tiredness (which were many in the past!), I would find myself continually falling asleep. When my body has reached this point, I am likely to have a series of micro-naps, falling asleep for minutes to then wake and drop off again minutes later. Before learning how to manage this symptom, I would embarrassingly fall asleep and then wake completely unaware that I had dropped off. I would feel the extreme tiredness, but not be aware that my eyes were rolling or closing. I didn't know how to describe these episodes and referred to them as blackouts when I first saw my sleep specialist. I'm glad to say that these episodes can be minimised once people are diagnosed, realise their limitations and adopt an appropriate symptoms management plan. More on the struggle to stay awake here.
- Excessive, vivid dreaming. Because of the disrupted sleep cycles that PWN experience, they tend to head over to the party that is REM or dream stage sleep incredibly quickly. It takes the average person around 90 minutes to reach this stage of sleep, it repeatedly took me less than 2 during my sleep tests. Because we go to dream sleep so quickly, we are more likely to have disturbing dreams. It's logic really - You're nodding off with a head full of stresses from the day, that it's no great surprise that thoughts, stresses and mental to-do lists manifest into bad dreams. Many of us have learnt to manipulate the direction of our dreams (lucid dreaming), by deliberately thinking happy, positive thoughts as we drift off. This is great when you have a particularly great dream as you can just 'pick it up' or rethink it the next time. Unfortunately changing the direction that dreams take once sleep has fully taken hold, is a much harder skill to learn and one I've yet to master. Myself and others also experience vivid dreams that feel incredibly 'real', filled with 'true to life' emotion. These can make particularly good dreams, but also awful nightmares that can be difficult to shake off upon waking. We may wake knowing that events within these dreams hadn't really occurred, however it's almost as if the mind continues to process the emotions felt as real anyway. Occasionally, myself (and I'm relieved to say others too!) experience 'false memories' as a result of vivid dreaming of everyday, mundane aspects of life, that we may not give attention to upon waking. We maybe convinced a memory is real, until others point out that it isn't.
- Night Terror's. Some PWN experience night terrors, which is a sleepy, dazed state accompanied by an intense feeling of fear, harm and dread. It's difficult to calm and reassure someone during a night terror episode, even though they may appear to be physically awake after abruptly sitting up or jumping out of bed. People will snap out of these episodes, often unable to explain why exactly they felt so frightened. More info on this here and details of my own experiences here.
- Fragmented / broken sleep. Yes really! PWN may be able to drop off at record speeds, however many find it difficult actually staying asleep. I can wake anywhere between 6 or 20 times a night, which I now know isn't unusual after talking to many other PWN.
- Hallucinations / sleep paralysis. Oh this is a fun topic. Not. Basically the line between wakefulness and sleep is very blurred, with one overlapping with the other at times. Hallucinations can occur when you wake up directly from REM sleep. The body is awake, but the brain remains in dream mode. Not pleasant. Again, it affects people in different ways. Mainly I experience audio hallucinations, but have also experienced visual and tactile - for example I was convinced I was pregnant for a while, after I kept 'feeling' a baby move in my stomach upon waking! Unfortunately, most hallucinations seem to play on peoples fears and are very disturbing. Sleep paralysis is the same pattern in reverse. The mind is awake, but the body is still sleeping. It can be quite frightening if you suddenly find yourself unable to move upon waking and seems at the least very odd to be able to hear life around you, particularly if people are discussing your sleepiness! More info on different types of hallucinations and my personal experiences can be read here and here.
- Body temperature. Until recently I thought this was just a me quirk, but it seems I'm not the only one to experience odd body temperature episode. This seems to differ from person to person, however I sometimes wake chilled to the bone and need to wrap myself in ridiculous amounts of clothing and blankets to bring my temperature up. Annoyingly many of these layers will need peeling off later in the night. I'm not sure what the official, medical thinking is on this. However, I guess it's related to depleted oxerin levels, as the hypothalamus is also responsible for body temperature control.
- Increased appetite / sugar cravings. An increase in appetite when feeling tired is a perfectly normal physical reaction for everyone; it's just our bodies way of saying 'hey, more energy if you please'. Again, its logical to say that an increase in bouts of tiredness are likely to cause an increase in energy prompts from the body. However putting aside the tiredness aspect for a moment, some PWN find themselves becoming hungry for no reason, with hunger pangs leading to nausea. It's not uncommon for a PWN to wake sick with hunger in the middle of the night. To complicate matters further, there are a couple of other elements of appetite to consider. Firstly, some people find themselves caught within a continual cycle of sugar rush/craving, after using sugar as an energy boosting tool. Caving into cravings can create a false sense of energy, which will inevitably be followed by a drop and further, intense cravings. You find yourself needing more sugar to counteract the previous craving. Its something I've done myself when I was able to work. I became reliant upon the sugar rush of a chocolate bar mid afternoon. After a while, I started needing two chocolate bars for the same effect, then bigger sized bars. I totally got drawn into the falsehood that an instant sugar rush can create, without considering the consequent sugar drop. Secondly, some studies have demonstrated a link between altered orexin levels within the hypothalamus and prompt cravings for glucose, with orexin levels being further affected upon further consumption of sugary foods. I won't attempt to explain this, as I would never do the research justice. A more detailed account can be found here.
- Physical Pain. When some PWN ignore their limitations they may experience bouts of muscle pain. It's difficult to say if this due to our bodies being in an exhausted state or due to other conditions, such as Fibromyalgia. Many PWN that I have spoken have also had a diagnosis of Fibromyalgia and more info on this can be found here. My muscles take on a deep ache which increases in intensity, eventually making walking short distances difficult if I don't rest.
- Other sleep conditions. Research has found that PWN have a higher chance of suffering from other sleeping conditions such as Restless Leg Syndrome and Sleep Apnea. As if PWN didn't already have enough sleep issues!
- Moods. I think its a fair point to say that anyone living with an intrusive, life long condition will have times of feeling frustration, anger and low. However, there is increasing amount of research demonstrating the influence the hypothalamus has upon mood, particular in relation to depression. Link to further reading about this here.
- Cataplexy. Although this is treated as a separate condition, it often goes hand in hand with narcolepsy. It is possible to have the symptoms of narcolepsy, without cataplexy or for it to develop at a later date. Cataplexy episodes are triggered upon strong emotions such as laughing or crying (fear triggers the strongest episodes for me), with people experiencing muscle weakness that can lead them to them collapsing. I suspect that when the general public imagine a stereotypical PWN, they are actually thinking of someone experiencing an extreme cataplexy attack. I have a varying form of cataplexy and very thankful that it doesn't interfere in my daytime life. With the exception of episodes triggered by fear, a cataplexy episode generally feels like I'm about to lose control of the muscles in my legs, however something stops me from collapsing just before my legs actually give out. My cataplexy attacks are at their strongest when I'm experiencing fear (generally during a hallucination of after a night terror). The heaviness in these incidences washes over me, physically pinning me to the mattress and psychologically exhausting my thought processes.
- Other Conditions. It's fair to say that if the control room that's responsible for maintaining balance within the body is upset, there will be knock on effects. Many PWN find themselves being treated for other conditions, particular those which are autoimmune in nature. A very interesting survey of physical and psychiatric comorbidity within PWN was presented a few weeks ago, demonstrating a link between narcolepsy and other conditions. Further details can be found here and here.
Ways to help others understand the condition better
Narcolepsy can be a very difficult thing to explain, as the severity of symptoms can very much depend on the activities that have been engaged in minutes, hours or days before. Most people with the condition can identify a base level, the minimum amount of activity that can be performed without pushing their bodies to its limit. However, anything beyond that can be dependent on other factors such as activity, stress and general overall health. I have found the Spoon Theory to be a very useful tool in helping to explain varying energy levels to others and would urge anyone who hasn't come across the Spoon Theory to have a quick read.
Poor public perception of the condition
Narcolepsy with or without Cataplexy is a very invasive, debilitating condition that can hugely affect individuals social, personal and working lives. The public perception of the condition is far from the reality of living with the condition and I get very annoyed when it is flippantly regarded as just a 'sleeping condition'. This is incredibly misleading and encourages people to make comparisons to their own, mild sleeping difficulties. Unfortunately, poor public perception can affect how open and honest a person with the condition is with others. Many feel ashamed or fearful of how symptoms will be interpreted by friends, family and work colleagues and as a result some (like myself for many years) choose to hide their symptoms from others. This can create a very lonely, isolating world. It can be difficult to maintain a positive outlook, when someone is silently struggling; particularly when others interpret this struggle as laziness.
The importance of correct diagnosis and health care support
Many PWN experience misdiagnosis upon disclosing symptoms to primary carers. I was told that I was just stressed by several GP's for years before a correct diagnosis was made. I was finally referred to a neurologist, who then sign-posted me on to a sleep specialist. I was lucky, many people are treated by neurologists who sometimes have little understanding of the condition. It seems wrong that sufferers have to educate the very health professionals that are treating them. Each of us have the right to appropriate health care and should be able to access professional support and advice from those who have an adequate understanding of the condition, its severity and its implication upon a persons life. This unfortunately sometimes requires us to be our own health advocates and take an assertive approach towards doctors and referral requests. If you are having trouble accessing appropriate treatment, the charity Narcolepsy UK may be able to help if you are based within the UK or The Narcolepsy Network if based elsewhere.
Graphics / video’s to help explain narcolepsy
PWN sleep / wake graphic chart
Julie Flygare’s narcolepsy Info-graphic
General narcolepsy information slideshow YouTube video
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