This is a bit of a rant, not intended to offend anyone and as usual it does contain a few expletives here and there.
“Drugs are bad… Mmm kay!”
“Right okay Thanks, great. That helps, loads.” Sarcastic face
For the purpose of this post, when I use the term drugs, I am referring to the prescribed medicinal type. Recreational and illegal drug usage is an entire other conversation.
We all know that overall, taking bin loads of chemicals is really bad for you. Resorting to pills straight away for anything is generally best avoided for a variety of reasons, most of them fairly well documented so I don’t need to go into that.
For those of you who don’t know me very well, I take bin loads of drugs. I have been on most of these since I was 12 with a couple of additions in my 20’s.
Why do I take these evil chemicals? I was diagnosed with Narcolepsy with Cataplexy in 1992, after developing it 5 years before at the age of 7.
Narcolepsy is an autoimmune disease in which the immune system accidentally kills off the hypocretin-producing neurons. This results in the entire sleep wake regulating system being shot to shit. It also relates to metabolism. It is indeed monumentally lame.
“Genetic factors may also play a role. Most people with narcolepsy have inherited a gene that codes for the human leukocyte antigen (HLA) DQB1*06:02, which is important for immune function. This gene is found in 12–25% of the general population, and it increases the risk of developing narcolepsy 7- to 25-fold.3 Additional genes can increase or decrease the risk of developing narcolepsy, and, like HLA-DQB1*06:02, most of these affect the functions of the immune system.” – http://healthysleep.med.harvard.edu
It is thought that Narcolepsy may also be triggered by virus or external environmental factors.
Nobody really knows what triggered my illness at such a young age and with such severity but it is possible that I would have developed it later in life. The only major environmental incident that happened exactly one year before my symptoms began to affect me, was the Chernobyl disaster in 1986. Although I live nowhere near Russia, it was documented that the radiation cloud did come over my home town which is the highest point in Nottinghamshire, level with a mountain range in Russia. It is well known that many farm animals in Britain had to be culled because of this. Perhaps if they had known, they could have taken me out to a pasture and had me shot. It would have saved the NHS* a hell of a lot of money.
I have all of the 5 common symptoms, Excessive Daytime Sleepiness (EDS*), Cataplexy, Automatic Behaviour, Sleep Paralysis and Hypnogogic/Hypnopompic Hallucinations. I do not have Sleep Apnea.
There are five common symptoms of narcolepsy. Apparently, few people have all of them. Lucky me, I have all of them.
As I write this and for the last few hours (I wrote this about a month ago) I have been experiencing one of the more debilitating symptoms, Cataplexy. I can describe it as a sort of dizziness and my body occasionally turning into jelly, like I am about to collapse, which is what might happen, but I have recently re-medicated so it’s not too bad right now. (It got much worse) Anyway, because of this, I decided to save time and energy (what little I have and even though I know this stuff off by heart) to cheat by copying and pasting the symptoms from another website. (can’t remember which one, oops! … it’s generally always the same though.)
Throughout the text, My own witty input is highlighted in red.
FYI, I am referring to my own knowledge and experience with these symptoms. I can’t speak for everyone.
The first and most important symptom (this is a matter of opinion, I wouldn’t say it is the most important, it is certainly the most common and so the first if they are to be given some sort of listing order. It is not the most horrific, in my view, but the most fricking irritating and massively inconvenient on a daily basis) is sudden daytime sleepiness more commonly known as Excessive Daytime Sleepiness or EDS* so extreme that it becomes impossible to stay awake for more than a few moments no matter how hard the person tries, even if they’re standing up. This is most likely to occur when the person is passive or bored – for example, in the classroom or at work. In a few cases, however, it occurs during physical exertion or stress. I fall asleep when walking, sitting, standing, you name it, there is nowhere I have been and nothing I have done in life where I haven’t fallen asleep at least once.
It’s not difficult to rouse someone from such a state, and upon waking people may feel refreshed, but the tiredness may return very soon, forcing another bout of sleep. This may happen several times a day in the most severe cases. If someone with narcolepsy is left undisturbed, the sleep may last from a few minutes to a few hours. It is very hard to really describe this because it isn’t black and white. No symptom of any illness is black and white. For me personally, I am tired pretty much all of the time but I only really notice how bad this symptom is when I try do ‘normal activities’ like taking classes, sitting on public transport or trying to hold down any sort of ‘normal’ job. I am a Belly dance teacher and performer but don’t think for a moment that it doesn’t affect me when I dance. It does. I am just quite good at winging it when I need to for short amounts of time. As for how long, I tend to dose of for 15 mins a time but it can repeat over and over. On a very bad day, I can experience Micro-sleeps for a few seconds at a time, hundreds of times throughout the day.
Despite this, people with narcolepsy do not actually tend to sleep more hours in a day than people without the condition. This naturally implies that people with this condition get less sleep at night, and indeed many complain of unrefreshing nighttime sleep that’s often interrupted by nightmares. or sleep paralysis or just not being able to stay asleep for long periods of time. and then there is an entire other conversation about lucid dreaming and all sorts of stuff. Actually the main issue here is to do with a lack of non-REM sleep.
As well as briefly falling asleep several times during the day, people with narcolepsy are prone to waking up several times a night. (Yes, we suck at sleeping at night)
The other three symptoms of narcolepsy (cataplexy, sleep paralysis, and Hypnagogic phenomena) are rarer, they sure aren’t fricking rare for me. but most sufferers experience at least one of them from time to time.
and many people who don’t have narcolepsy or anything of the sort also experience Sleep paralysis from time to time but nothing on the scale of how it manifests in Narcolepsy. They all occur in fully conscious people and can be frightening if the person hasn’t yet been diagnosed and doesn’t know he or she has narcolepsy. fully conscious? sort of … urgh far too complicated to go into all of that.
In cataplexy, the low muscle tone of REM sleep appears suddenly in a person who is fully awake at a time of strong emotion. Laughter, anger, fear, happiness, or, most often, a simple surprise can cause a person to go suddenly limp and drop to the ground. and some people like me have an even rarer type of cataplexy which is apparently called, Status cataplecticus, which sounds awesome but totally sucks balls. It means I have super mega epic Cataplexy. It does not require strong emotion and is even worse when it happens in the bath or when swimming. I have basically waterboarded myself so many times, you don’t even want to know. “So stay out of the water!” I hear you cry. Hell no! Piss off! I have given up quite enough things for this sodding illness thank you. I will take my chances and live dangerously.
Sleep paralysis occurs just before going to sleep or just after waking up. A temporary but complete paralysis prevents the person from moving for a few seconds. Sleep paralysis isn’t actually that rare, especially in children, but it’s only a sign of narcolepsy if one also experiences the primary symptom of suddenly falling asleep in the daytime. Sleep paralysis makes Freddy Kruger look like Pikachu!
Hypnagogic phenomena (hallucinations) also occur just before drifting off to sleep. Hypnopompic phenomena are hallucinations that occur just after waking but are even rarer. Basically, they are vivid dreams that project into the waking period. Because they occur in people who aren’t actually asleep, these dreams are sometimes called hallucinations. This one is the worst of the worst. Often comes with sleep paralysis and sometimes follows an episode of cataplexy if the ol’ brain decides it’s ‘dream time’. This shit makes Dante’s inferno look like a theme park. and along with cataplexy is also even more horrifying when it happens in the bath.
There is one potential complication of narcolepsy, which is also a risk in other sleep disorders, and that’s having an accident due to fatigue. The urge to sleep is so sudden and irresistible that it’s more like passing out than going to sleep. It’s been known to happen while operating a motor vehicle or heavy machinery. Similarly, people who don’t sleep well at night may be below par in the daytime, whether they feel an urge to sleep or not. Even minor fatigue can impair judgment, making vehicles and heavy machinery dangerous. Controlling the symptoms of narcolepsy can go a long way towards preventing accidents. In all these years, I have never (touch wood) had a major accident. Basically, I am frickin’ awesome at doing stuff in my sleep. I have had many near misses and a few kitchen incidents resulting in burns and I definitely should have been hit by more vehicles than I actually have.
MY OWN SYMPTOMS
The severity of each symptom has fluctuated and changed over the years. Overall, my condition has not necessarily improved, perhaps though, I have grown better at coping with it. When socialising, it may not look like anything is wrong with me, unless you really pay attention, then you will see my tiredness levels fluctuating constantly and you might notice me popping pills. If I am socialising or doing anything in public, you can bet I am very well medicated.
EDS affects me, not just on a daily basis, but every moment of every day. Cataplexy used to happen all the time but much less now, thanks to the Venlafaxine. When it does happen though, it is extremely severe. The side effects of Venlafaxine, of course, are nothing to smile about.
I have been on various medications since my diagnosis. (around 25 years ago, Aaaargh! God that makes me sounds so old!)
Currently, my daily medications include the following:
For daytime sleepiness:
• 2x10mg Methylphenidate, 3 times a day or more depending on what I am doing
(I have been on this particular drug since 1992 and when I did attempt to have a ‘normal day job’ I was on up to 15 a day!)
• 2x100mg of Provigil (Modafinil) twice a day
To help prevent Cataplexy:
• 1x Venlafaxine 1 x 75mg daily
So where am I going with this?
Well, I am not in need of your sympathies, but thank you. Some understanding though, goes a very long way.
Over the years I have had people say various things to me, offering bits of advice about remedies they think I should try, or ways they think I should try to feel less tired and sometimes people say things like “You really shouldn’t take those drugs” and “There are loads of natural things that you could take to treat your illness”
Now, I am all down with using what nature has to offer to aid an ailment. However, unless you happen to know which combination of them is going to help me, not to mention how I am meant to pay for them, please refrain from giving me this advice.
Do you really think I prefer being on shed loads of hardcore drugs? Hell no! and while some narcoleptics are lucky enough to manage without medications, many of us have such severe symptoms, which are so debilitating, we can’t function at all without. It’s not just about being a bit tired every day.
Imagine waking up in the morning, as soon as you see daylight your eyes don’t work properly, your body feels weak and you suddenly become unable to move or speak for 15 mins, other grim symptoms follow, as mentioned above, then shortly after regaining use of your muscles, it happens all over again … and again … and again. You can’t make it a few feet from your bed without collapsing into a heap. You can’t go down the stairs without collapsing, you can’t even sit up in bed for long and as well as the paralysis, staying awake for long is impossible. This is me at my very very worst. Thankfully, I am not like this as often now … because of my meds.
Recently, I ran out of one of my medications and within two days, this was the state I was in. This has happened many times and It is unbearable.
I am well aware that coming off those meds will no doubt result in worsened symptoms initially, but I just can’t face being like that for more than a few days. Some people suggested that if I came off the meds that my symptoms might have improved and perhaps I should try it. The thing is, Narcolepsy doesn’t generally improve over time, once those hypocretin-producing neurons have been destroyed, they don’t magically reappear. One may learn to cope with the symptoms or find ways of avoiding them which involves things like blocking out emotions to avoid cataplexy, but for me, that doesn’t work. My cataplexy isn’t only triggered by emotions, it is worsened by them. A PWN*** also might go to great lengths to hide the visibility of the symptoms as well.
So, I wish to conclude by saying that although your hearts might be in the right place and you mean well, when you form opinions about someone else’s illness and how they are being treated, unless you have that same illness, you can’t possibly know what that person has to cope with and unless you have thoroughly researched the subject and come up with some good suggestions that are based on genuine science, please avoid offering advice and never tell someone that they should or shouldn’t be doing something, such as taking medications. Even if you do have the same or similar illness and have found something that works for you, it does not mean you have the answer for everyone. By all means, share your experiences but please don’t think you have some sort of cure for all. If you did, you would probably already be a billionaire.
Don’t get me wrong though, I am always interested to chat about new ideas and willing to try things in combination with my meds, but until I figure out what works best, there is no way I am going to give up my current stability which includes my ability to teach and dance, just to try something that might not even work … and no, my meds are not perfect either. They are in no way a cure and don’t alleviate all my symptoms 100% but I have much more of a life than I had without them.
So, be supportive, or not, up to you. But please keep your ‘advice’ to yourself. Telling me that I have been doing everything wrong for the past 25 years is really not helpful at all and only ends up making me feel shitty about something that has already made my life pretty shitty. I do the best I can and the fact that I am still here at all is something I value and had to fight for. Being eternally tired and basically written off by ‘normal society’ doesn’t make one’s life feel very valuable. Believe me, whatever I am doing and however I am doing it, I had to fight to even get to that point. I am not brave either, I just don’t go down without a fight.
If however, you would like to see what a truly evil stare really look like, go ahead and give me your wonderful advice about how I can be cured if only I do blah blah blah 😉
Rant over. Sleep well chucks 😉
If you are on Pinterest check out my Narcolepsy pins.
* NHS is the ‘current’ National Health Service in UK
* EDS refers to Excessive Daytime Sleepiness
*** PWN is a Person with Narcolepsy