Do I have some kind of sleep disorder?

Signs and symptoms
1

I need some clarity. I come from a family who believes in toughing things out, and if I speak too much about things I notice here or there I run the risk of being called a hypochondriac. I would go to the doctor myself but because of the way I was raised, I feel like it's not "enough" to be anything concerning.

So I get sleep paralysis very frequently. I get it on both occasions while I'm falling asleep and when I am waking up. It happens in cycles. I can feel it coming, it takes me, I shake myself out of it, and then I am so sleepy that I end up succumbing again, and this repeats over and over and over, either at night or in the morning. Just the other night I couldn't go to sleep for an hour because every time I laid my head down and closed my eyes, it would start to take me, and I'd have to force myself to stay awake. (I also get visual and auditory hallucinations here and there but I feel like that doesn't need to be said because thats just what happens sometimes with sleep paralysis). I do sometimes end up sleep deprived because of it.

Another issue I seem to be having is no matter if I got enough sleep the night before, when I'm driving alone, I often get VERY sleepy. To the point where I almost cannot control and I have to completely focus and fight falling asleep at the wheel. There have been a couple of times where I nod off for about a second and I jolt awake and realize how close I am to getting into a car accident.

I am a busy full time college student with a job, but these things still happen even if I'm not busy and I have gotten enough sleep.

2

Just to add, my sleep paralysis comes and goes. When it does come however, it lasts for a month or a couple months, 2-3 times a week, sometimes more.

3

I know I keep adding stuff it's just coming to me, but also the other night I had sleep paralysis but when I thought about it the morning afterward, I realized I had a very hard time distinguishing between sleep paralysis and actual sleeping. If you asked me, I would say I don't know. Something else that has also happened a few times is I lie down to sleep, and I never feel like I have actually "fallen asleep". It just feels like I'm lying there with my eyes closed, and next thing I know its morning. The few times this has happened, I don't ever recall falling asleep, only feeling like I was lying there awake with my eyes closed the whole night. I do however feel rested as if I had slept.

4

Hi Whitney,

Just to introduce myself: I'm a former neuro nurse who's had sleep paralysis (SP) for more than 50 years, so I know a little bit about the subject from both sides.

I'll deal with the easiest point first - your feeling that you've been lying awake with your eyes closed all night, only to discover in the morning that you've been asleep. This is quite a common one, and as far as I know it's not connected with SP. It's usually the result of getting a bit anxious about whether or not one is getting enough sleep, and is especially common in younger people. It's completely harmless. Google sleep state misperception if you want to, but don't get too hung up about it. You need to focus your attention on the real problem - i.e. your difficulty staying awake while driving.

I can't diagnose you, obviously, but it does sound as if you could have narcolepsy, possibly associated with sleep apnoea. They do sometimes occur together, and SP can occur with both of them. You need to see a doctor about this, and try to get yourself to a sleep clinic. Ideally you shouldn't be driving until this has been resolved either. Once diagnosed, obstructive sleep apnoea can be managed by using a CPAP machine when sleeping. Narcolepsy can be treated with medication, usually Ritalin, which is an amphetamine. However, please don't try to get hold of this medication on-line, without a prescription. It should only ever be taken for narcolepsy (or, paradoxically, for ADHD) and there's the additional risk when buying it on-line that it could have been mixed with much more dangerous, addictive amphetamines. Too many young people have died from swallowing stuff without really knowing what was in it. I wasn't even going to tell you the name of the drug, but then I realised you were bright enough to look it up for yourself, so I wanted to address this.

The narcolepsy/SP connection is not automatic, however. While most narcolepsy sufferers experience SP, the converse isn't true. The majority of those of us who have SP don't have narcolepsy. The third arm of the narcolepsy syndrome is cataplexy, though again, not all narcolepsy sufferers experience this. Not to be confused with catalepsy, which occurs in schizoid states. Cataplexy is when the person momentarily becomes paralysed in waking life and slumps to the ground. It's most likely to happen in moments of emotion, especially laughing. I'm just wondering whether you've had any episodes of this kind, though their absence wouldn't necessarily mean you don't have narcolepsy. This can only be diagnosed, or eliminated, in a sleep lab.

From here on, it gets even more complicated. There's another condition, known as hypersomnia, which is a definite symptom of obstructive sleep apnoea, and may or may not be a minor form of narcolepsy - with or without apnoea. Medical opinion has been switching back and forth over this one for decades, and to be honest I'm not sure where it stands right now. For what it's worth, I firmly believe there's a connection, but I'm not a doctor, only a sufferer. If you manage to get a sleep study, and if it turns out you have hypersomnia without apnoea, I'm afraid it will depend entirely on the views of your doctor as to whether you can be treated for it.

My reason for saying this is that narcolepsy is strongly hereditary - though like all these conditions, it has to start somewhere. It might be worth asking around in your family, though I know only too well from personal experience that it's hushed up in some families (like mine!) for fear that the hallucinations of SP are a sign of mental illness. (They're not, of course.) I've suffered from hypersomnia all my life, even from early childhood, and started getting SP with severe hallucinations in my early 20s. I've had both ever since. My father manifestly had hypersomnia too - he twice fell asleep riding his bike - and it was only 20 years on from the onset of my own SP that he finally told me he'd always had it too, with even worse hallucinations. His mother and at least one of his siblings also had the hypersomnia/SP combination, which makes me wonder whether we all had a minor form of narcolepsy.

To muddy the waters further, it's entirely possible in the case of the hypersomnia/SP sufferers in my family that we all had sleep apnoea, as we'd all inherited my grandmother's somewhat squat, thick-necked build. Certainly my father was a heroic snorer, thought that doesn't necessarily go hand-in-hand with sleep apnoea either. None of us ever got to a sleep lab, so we'll never know. Such things barely existed in my father's generation, and not at all in my grandmother's time. And I've never been able to get a referral because of the persistent (and erroneous) view of most doctors that obstructive sleep apnoea can't occur in women.

I'm sorry if this post has been long and somewhat rambling, but I thought it important that you should understand all the possibilities and combinations thereof. The bottom line is that you need to be seen in a sleep lab to find out exactly what's going on. I'd be interested to hear how you get on. You can post here or send me a private message if you want to. Click on the little envelope icon next to my name. PMs via this site don't reveal the email address of either party, or carry viruses.

5

Hello again,

I'm adding this as a rider, to avoid my original post getting too long. You absolutely need to see a doctor and ask for a referral to a sleep lab, but there's also a lot you can do about the sleep paralysis episodes, which you say can sometimes seriously disrupt your sleep.

SP can't be cured, but it can be managed in such a way that you can reduce the frequency of episodes. You need to identify your triggers. These vary from one person to another. My main trigger is getting too warm in bed. I have to sleep in a cool bedroom with light covers - no snuggling under a quilt for me! Another trigger can be getting too much sleep. This is one of mine. I'm much more likely to have an SP episode when sleeping late in the morning or taking a daytime nap. However, other people report more episodes when they haven't had enough sleep. Some people find certain foods eaten late at night can trigger an attack, as can recreational drugs or too much alcohol. Sleeping too close to electronic equipment is another trigger - don't forget the brain operates via electrical impulses - so it might be a good idea to leave your phone in another room overnight. And of course, anxiety and all forms of stress are powerful triggers.

Try keeping a journal to identify what you did, how you felt etc., on the days preceding SP attacks. This won't help the narcolepsy/hypersomnia/apnoea or whatever it is you have, but you should be able to significantly reduce the number of SP attacks you're having, which will improve your sleep a bit.

Good luck!

Lily

6

No need to apologize, your answer was just what I needed and very thorough and educational!

To answer your question, I haven't had any cataplexy episodes, and I haven't heard of narcolepsy occurring within my family- I could ask however.  Since my family doesn't go to the doctor very often, I'm not sure if maybe someone related to me had or has narcolepsy but never got diagnosed.  I do note that my sleep paralysis definitely occurs more often when I sleep in during the mornings and if I'm on some kind of electronic device before bed at night.  However there are times when it occurs even when these things do not happen.  But I definitely try to avoid my triggers.  Usually reading a page of a book or magazine before bed gives me an opportunity to sleep well if my SP is making it difficult, but there have been times where nothing works.  Your answer has definitely given me enough confidence in my experiences to pursue going to a sleep lab and getting checked out.  Thank you so much!

7

I'm glad to hear you're going to try and get to a sleep lab.

Regarding those nights when you suspect you're going to get bad attacks of sleep paralysis whatever you do - have you tried taking a very small dose of antihistamines? Preferably the older kind, as the new generation have had some of their sedative properties developed out of them. In my more troubled times, I used to take about 5mg of promethazine (Phenergan in Europe, don't know about elsewhere) on nights I knew were going to be bad, and it helped a bit. But you shouldn't take antihistamines every night, as you can develop tolerance to them, just like sleeping pills. Also preferably take them an hour before bedtime, as they don't start working immediately. Don't take a second dose if you wake in the night as they can make you groggy the next morning.

I always used to know when I was going to have a bad time, with SP and terrifying hallucinations starting almost the minute I closed my eyes. It was during my mother's last years, when she was going down to dementia. I was an only child, and couldn't get any help for her. I lived about 200 miles away, and was constantly commuting back and forth across the English Channel to stay with her, consequently losing jobs, friends etc. I had terrible SP attacks when sleeping in her house - always including the kind that start at the beginning of the night, which was something of a new experience for me. I'm sure it was mainly down to the stress of our situation, but I suspect it wasn't helped by the overhead high-tension cables that ran just 20ft from the house and the electrical switching station about 100 yards away. In susceptible individuals, SP can be triggered by electromagnetic and even geomagnetic influences.

Maybe you can identify the factors that are more likely to cause SP at the start of the night? Personally, I've always found these early-night episodes much more distressing, as I tend to be more deeply asleep when they happen, and therefore less able to immediately recognise what's going on. As a general rule, this type is more likely to be down to stress.

As already mentioned, there's a lot you can do to reduce the severity and frequency of attacks by paying attention to your triggers, but you'll never stamp them out altogether. They do, however, tend to wear off with age. Apart from the few years when I was coping with a stressful situation, this has been the case for me. The only way to stop them altogether is to ask your doctor to prescribe antidepressants, especially the older tricyclic kind, like amitriptyline or nortriptyline. These work by suppressing REM sleep, which is the phase from which SP arises. However, they don't cure the condition. As soon as you stop taking the medication, your REM sleep will recover, bringing with it the sleep paralysis. Apart from this, antidepressants can have some pretty unpleasant side-effects, not to mention the withdrawal effects when you try to stop them. There's no connection between depression and SP, btw. REM sleep suppression just happens to be a side-effect of antidepressants.

I hope you can find some answers.

8

Also do you know if it's valuable information at all that I've had sleep paralysis since I was very small? When I was little and I would get it, and I mean 5-7 years old, I never questioned it or brought it up to my parents because I thought it was normal. And even when I did tell my parents, they shrugged it off like it was a bad dream. I would also fall asleep on the school bus on the way home every single day, again I wouldn't just be tired I would just completely knock out. My mom would have to get on the bus and wake me up. I may just be stretching too far with that one though, after all, kids fall asleep in weird places all the time. The falling asleep on the school bus thing happened throughout my life though, and again it wouldn't just be me being sleepy, I would have to fight staying awake and I couldn't really control it. After high school I guess it just carried on to cars. I've never had this issue in any other situation though.

9

Oh I'll look into getting those antihistamines! Andwow I'm sorry you had to deal with such stress. For me it's less triggered by stress and em iotion and more by things like being on my phone/laptop before bed (Which I'm working on to stop doing). It used to happen every time the thought of SP popped up in my mind- I know it's weird but that's what used to happen. I hate taking naps or sleeping any time other than my usual night time sleep, because I always wake up with the feeling that sleep paralysis gives me- a sort of "sandbag brain" feeling. Also I had no idea antidepressants could have an effect on SP! Thats also definitely something I'll look into.

10

Hello again!

Antihistamines can be good for getting you off to sleep if you're a bit anxious for any reason, but shouldn't be abused. I'd been a poor sleeper since childhood (even before the SP kicked in) and this was made permanently worse by working an awful experimental shift system for a year or so when I was your age. As a result, I relied on antihistamines for the rest of my working life. However, I was always careful to keep the dose very low, and never took them more than three consecutive nights, always leaving at least a week in between. That way, I never developed tolerance to them, and the occasional 5mg dose still works perfectly 50 years on. These days I only take a dose on "nervous nights" when I'm convinced I won't sleep: e.g. the eve of a journey or a presentation in my voluntary job.

If you start taking antihistamines every night, you'll need a bigger and bigger dose to get any effect, and they'll end up not working at all - just like prescription sleeping pills. In larger doses - or repeat doses during the night - they also make you feel even more hungover and groggy the next morning than sleeping pills. Not something you need if you're already nodding off at the wheel.

One important point about antihistamines is never to exceed the stated maximum dose. Given that your symptoms could point to sleep apnoea, I'd say you shouldn't even go anywhere near the maximum dose. Higher doses of antihistamines can send you into a deep sleep, with the danger that your possibly too-lax throat muscles will relax even further.

I slightly regret mentioning the antidepressants now. They're not really a solution, but can be used as a last resort, especially for those of nervous disposition who are so terrified by their hallucinations they can't sleep at all. Believe it or not, some people still think SP is down to demonic possession, even in the 21st century!

The problem is, you can't use antidepressants on the occasional night, like antihistamines. If you stop and start them you'll be in a constant state of withdrawal, with a lot of unpleasant effects, both physical and mental. They can also disrupt your sleep in other ways, and may actually cause night-time insomnia with increased daytime drowsiness. Once again, something you don't need.

There's also the issue that antidepressants will only deal with the SP, and only for as long as you're taking them. They'll make no difference whatever to the underlying narcolepsy, hypersomnia, sleep apnoea, or whatever it is you may have.

In any case, you shouldn't be taking any sleep-altering medication on a regular basis if you're planning to get checked in a sleep lab. This could suppress symptoms and lead to a wrong diagnosis.

The bottom line is that you need to work on your triggers, as you've already said you're doing. That's the only way to reduce SP attacks long-term. I'm not at all surprised by your admission that working on your phone etc. directly before bed triggers more attacks. Neither, sadly, am I surprised that you're finding it so hard to ditch this addiction. Forgive an old lady for being cynical, but I grew up when dinosaurs walked the earth and social media hadn't even been dreamed of, so I find this whole addiction mystifying. Society functioned perfectly well - maybe even better - for millennia before Mark Z and his ilk came along!

Oh, and it's not at all weird that anxiety about having an SP episode will bring one on. Anxiety about having another attack is a major trigger. In fact, even talking about SP can bring one on in my case. I tend to haunt these sleep boards to provide support for young people starting out on what will probably be a lifetime of managing sleep paralysis. (Did you know it affects around 5% of the population, half of whom will hallucinate on a regular basis?) I won't bore you with the details, but I had a terrible time when mine started more than 50 years ago, both with a psychiatrist and my own family. There was no internet then, and I spent several months in a state of abject terror. I don't want other young people to suffer like I did. Paradoxically, however, reassuring others about SP on these boards invariably results in my having a spate of attacks!

11

I don't know whether or not the info about having sleep paralysis when you were small is useful, but I suspect it would definitely be useful to tell a sleep specialist that your apparent narcolepsy/hypersomnia may have started when you were very young.

I had the same thing as a small child, and not just in buses and cars. I was always in trouble for falling asleep in class, in spite of my parents putting me to bed early.

Although I don't recall having SP as a child, I certainly had vivid lucid dreams about floating around the house and through walls etc. in the night, and found them very enjoyable. My mother went ballistic when I tried to tell her about them, so I learned to keep them to myself. This is another feature of SP in some individuals, accounting for the belief in "out-of-body" experiences.

I also had a specific type of waking hallucination, again associated with SP in some individuals. This occurs when waking normally (i.e. not into SP) at any time of the day or night and consists of vivid visual hallucinations. These can be miniaturised people or objects, or even full-sized people or animals, always motionless, and usually seen in the same visual field. By this I mean wherever you look in the room, they'll move with your eyes. This is a good way of establishing that they are just hallucinations if you get a scare on waking suddenly to a very clearly delineated sinister figure standing at the foot of your bed! Just look across the room and you'll see it there too. I'm convinced these account for a lot of so-called ghost sightings - you know, the type that start: "I woke up in the night and could clearly see a mediaeval knight standing next to my bed". Another variant is precise geometrical patterns covering everything in your visual field. All of these can persist for several minutes, even after you've got out of bed and gone into the bathroom. I clearly remember having these - and being terrified by them - as a child.

There are all sorts of other hallucinatory phenomena associated with SP. Once I got over the initial shock, I started to find the whole subject fascinating, and still do.

My own SP proper started at age 23, in the run-up to my final nursing exams (hence a stressful time). 15-25 is reckoned to be the most common age of onset, but there are always exceptions. I did, however, go through a period around puberty when I was having vivid dreams which would end up with my being sucked backwards at great speed, producing the stomach-dropping sensation one often feels at the start of an SP attack.

I don't know what current medical attitudes to SP are, but if I were in your position and seeing a sleep specialist, I'd be inclined to start off with an account of the frequent bouts of irresistible sleepiness. Some doctors can be a bit strange about SP, almost as if they feel it's some kind of challenge to their authority. This was certainly the case when I was hauled up before the hospital's chief psychiatrist in 1967, and I heard similar accounts when contributing to a US sleep paralysis site about 20 years ago. I've never breathed a word about SP to a medical professional since the 1967 experience as a result. But it may have changed now. Any sleep specialist worth his/her salt should ask about SP on hearing an account of excessive daytime sleepiness, to help establish a diagnosis of narcolepsy. I suspect some may be reticent about this, to avoid "leading questions". In any case, I think you should start off with the sleepiness, then progress cautiously on the subject of SP. Some doctors are more open to descriptions of SP if the patient initially presents it as some kind of nightmare (though of course it isn't). I'm afraid we have to humour them sometimes.

12

I will definitely be cautious when talking about my sleep paralysis then. I'll make sure to describe it is something that has definitely been a lifelong issue for me, since the problem isn't the sleep paralysis itself, it's how often it's been occurring and how long it has been around. I always questioned myself about a diagnosis of narcolepsy, since I can remember the sleepiness only happening while driving (and sometimes on rare occasions during class). But perhaps it's because in my mind, narcolepsy just sounds like a very serious and scary illness to have- partly because of it's warped reputation in the media as well as just how the name sounds. I don't recall having any sort of non-SP hallucinations as a child or growing up, but I have always had very vivid dreams. I never thought they were anything other than normal since vivid dreams are pretty much the only kind of dreams I have. I've only ever had one lucid dream though, and it was for a split second, and then it became a regular dream again. I did manage to make myself levitate for that short moment I had realized I was in a dream. However I lost control pretty quickly after that and forgot that I was dreaming.

I have to take my time with this narcolepsy thing, since I have just convinced my tough-it-out father that I might possibly have ADHD, and bringing this up may be too soon. Definitely have to tiptoe around it!

13

Maybe not mention the N-word to your father, but just tell him about the mini-sleeps you're having while driving? I'm sure any parent would be very concerned about that. If you do get to see a psychologist about the ADHD, you might mention the problem there too, though I have to say most of the psychotherapists I know are so dozy themselves, they probably wouldn't pick up on it anyway. Being a native of the Planet Zog seems to be a job requirement! (Sorry if I sound a bit jaded, but I've volunteered in a mental health centre ever since retiring from paid employment.)

Seriously though, if you are falling asleep at the wheel, even for a second or so, you're putting yourself and, more importantly, other road users and pedestrians, in very real danger. How would you or your parents feel if you were responsible for a fatal accident?

Concerning the lucid dreams - mine took quite a while to get going. They started a couple of years after my first adult SP experiences, and were only occasional at first. They increased in frequency, peaking in my 30s and 40s, and have declined ever since. I rarely get them now and count this a great loss. I had some fantastic experiences in lucid dreams, some of them transcendent, and learned a lot about myself.

The trick if you wake up and find yourself in a dream is to stay as calm as possible. Easier said than done, of course. If you get excited you're likely to wake up immediately, and often into an unpleasant SP episode. Stephen LaBerge (I hope I won't get modded here) who is an authority on lucid dreaming, recommends physically spinning on the spot to keep the dream lucid.

14

Oh wow that's a good suggestion for lucid dreaming I'll definitely try it! And yeah I've gotta mention the sleeping nothing to my dad, and i will also mention it to whoever I meet with regarding ADHD.