Narcolepsy and Sleepiness: I wake and sleep and sleep and sleep

I am always sleepy. I am always sleepy.  I am always sleepy.

That said, my best time, if I have had enough sleep the day/night before, is after midnight. Dr O — whom if you recall I now refer to as Mary in most other contexts, since she is no longer my doctor and has temporarily retired from the “business” or is “on sabbatical” as she calls it — told me once that the notion of some people being “night owls” and some being “early birds” is a real phenomenon and not just a myth, that in fact there are reasons why certain people like me prefer the hours post-midnight and feel most alert and alive then, and why I claim that it is then that I get my best work done. As I understand it, there are actual “chemicals” — I hate that generic term for more specific biological substances! — which impel a person towards sleep and that these are at their lowest in the morning and constantly building up during the day until for most people, or at least for those whose drive to sleep peaks at around 10 or 11pm or so, the sleep pressure is such that they feel the urge to sleep and usually do so easily around that time. (I think this is modified somewhat by the fact of artificial light and that in fact were we bound by (some would say limited to) the natural cycle of daylight, our “sleep chemicals” might take on another pattern, pushing us to sleep whenever it got dark enough that sleep was our only recourse. Of course, we still don’t really know why we sleep at all, but the fact that there is nighttime, that it is too dark to see in and do anything in, or was before we acquired artificial means to light up the darkness, and that there is nothing to do then except sleep seems to me to be reason enough. Better sleep than fidget! And better sleep than try to venture outside of your warm cave and get yourself killed in the dark…

But as I was saying, I am always sleepy. Or almost always. Sometimes, when my medication is actually helping me, and when I have added to it a strong cup of coffee (often it seems that the coffee is a more effective alerting agent than the methylphenidate, oddly enough, since I can easily sleep through 40mg of the latter but not through the 150mg of caffeine in a cup of coffee …) I feel somewhat able to get things done. No, I can’t read, or not very often. Reading more than a few pages is usually beyond my concentrating abilities. This is partly because my eyes, with their strange tendency to conflate inability with lack of desire, reject it and partly because reading simply overwhelms all the powers of any alerting agent to keep me awake: To sit down and read and stay awake seems literally impossible. However, years back, in the 1990s and early 2000s, when I took Zyprexa 35mg, reading was massively important to me, more important to me than any other activity I could imagine (due to the Zyprexa having wakened me to the world…). Dr O, who became my sleep specialist as well as my psychiatrist in 2000 and so was able to monitor both my schizophrenia as well as my narcolepsy, was aware of this and treated it with both methyphenidate SR and ER and Provigil and sometimes Adderall as well. These in varying combinations plus the Zyprexa were at least helpful. I remained sleepy, and continued to suffer from hypnogogic/hypnopompic hallucinations — that is, REM intrusions into waking states, or dreaming while awake, and not just when getting up or falling asleep but in the middle of the day — but I was alert enough to read as much as I wanted to, at least during part of the day.

Now, however, my eyes refuse to let me read, even when it might be possible. And when I do  at least try to read, that is, when other activities such as writing are possible and so reading ought to be as well, I find myself falling asleep because of eye strain and fatigue. Talk about a vicious circle. Yet I will work around both of those in order to write! Weird…Even now I can barely see what I am writing, have to contort myself to “get around” the confusion of dancing and shimmering letters, but I continue to write nonetheless, as my eyes do not refuse to do that. Yet they do and would refuse to read someone else’s blog, especially anything longer than a short paragraph, if that.

Sleep sleep sleep and that well known “ravell’d sleeve of care” as in Shakespeare’s MACBETH:

“…Sleep that knits up the ravell’d sleeve of care, The death of each day’s life, sore labour’s bath, Balm of hurt minds, great nature’s second course, Chief nourisher in life’s feast….”

Balm of hurt minds…Indeed, yet I did not sleep well last night. I was both too upset and riled, and too raveled or would we say, unraveled by the things that I felt I had to do to please too many people. I didn’t, I thought, have the right, or the wherewithal to say No to anyone,  I didn’t know how, I didn’t feel, after I had said “Yes, I will, I would, I can, I should,” to then say, essentially, “F—K off,” and “No, I won’t after all.” Well, of course, to say, “No, I can’t,” is not necessarily to say, “F—k off!” to any one, but I was feeling that way. I felt so angry but also so terribly tired and so overwhelmed and crazed by people demanding of me more than I could cope with and then just that one inch more that I thought I would die…and then, and then…it was basically “F—k you, everyone! I cannot take it anymore. I quit!”

Luckily I didn’t tell anyone that, not exactly, and not in the middle of the night.  I didn’t even call Lee and tell him that I felt overwhelmed and unable to take it any longer.  I cried, yes,. And I wrote emails to people I could scream to, in  despair without jeopardizing our friendships or my freedom…I always have to worry about that! (*Nor did I admit to anyone  — except one pen-friend — that I also feel, frankly, obese, so obese that I want to —but I won’t say it, won’t say it, won’t say it…All I will say is that I hate myself and that I will never again take either the Zyprexa or 30mg of Abilify. If I had known that the additional 15mg of Abilify would make me gain 20 pounds in 6 months I never would have agreed to stay on it after the hospital stay last spring. If I hadn’t taken it after I got out, I would not be in this horrible situation now. No one, least of all the visiting nurse who presses both drugs on me in the name of keeping me sane (hah), seems to understand  how insane it makes me) But I have digressed yet again…

I was speaking of how tired and over-committed I was,  and how I felt that I could not say, “No, I cannot do this, that or the other” to anyone, most especially after I had made a commitment, however unwilling– or even unwittingly. That is not to say that I did not want to do all of what I had to do, only that  I had signed up for too much and now had to draw back and decide what my priorities were. Even those I wanted to do, I had to choose among as well. But I wasn’t calm enough to think this last night, let alone to do such choosing.

Instead, though I had taken my Xyrem, the sleep medicine for narcolepsy that usually zonks me right out, and had taken it early, I tossed and struggled with the green microfiber cushions of my recliner for about an hour, trying to find  a tunnel into sleep, so that I could forget my woes for a while. But it was, as you can imagine, useless, even with the Xyrem. So instead of fighting the green any longer, and tearing holes in it, I turned the lights back on and pulled the lever and sat up again. To my small satisfaction, I discovered that I had in fact slept a  little in my tossing, and that it was 3 a.m. and not just midnight. Good, so I was not going to be up the entire night. At least I could say that I’d slept a few hours…But I was wide awake now. So instead of brooding the more, I decided to…well, there were some poetry contests with December 31 deadlines, so I started the long process of finding poems and making duplicate copies and such to enter those…and it was in doing that, and cleaning the apartment, that the night finally came to an end…

Today, of course, I suffered from extreme sleepiness, until now, when it is nearly midnight, and I am awake again. Go figger.

2 thoughts on “Narcolepsy and Sleepiness: I wake and sleep and sleep and sleep”

  1. Hey, Brenda, It is indeed a flash from the past to have finally met you, but a very pleasant one indeed. I thank you for your wonderful suggestions and will try the ones I most like when next I need them — i.e. not overstimulating myself before bedtime by getting into, say, writing in my blog, which I think does to me what game-playing does to you (though I think in the case of schizophrenia it is already the case of an overproduction of dopamine that is thought to be the problem; however in the case of someone who takes medication, it may well be that the supply has been artifically lowered a tad too much, who knows?)

    I too tend to eat at night, so that being a “waking activity” doesn’t surprise me! The one thing I would say is that I have been so sleepy all day that I usually quite welcome the post midnight alertness and do not fight it, so long as I am not tortured by painful thoughts and have work to do. It is only when I brood and want to sleep that it becomes a problem. Or when I know I must get up early in the morning!

    Take care, and leave a comment any time. As you can imagine, comments are always most welcome!



  2. Hello Pam – how incredible to meet you as I did at the reading at Otis Library – suddenly flashing on the memory of talking to you about editing a manuscript, it must be about 25 years ago?

    and how exciting to see you are publishing your work!

    I want to chime in, now, on the sleeplessness problem.

    I am not sure whether it’s because I’ve started menopause or because of my ADD symptoms (or both), but I am having a hell of a time trying to get anything more than 2 to 3 hours of uninterrupted sleep, and lately it is taking until 4 or even 6 a.m. to finally “crash.”

    Here are two observations, however.

    One is that I often play a computer game after finishing my writing work, which is usually at about midnight.

    I am sleepy at that point, but once I start playing a game, it takes over and before I know it, three hours can go by, and now I am just awake enough to not be able to get to sleep, but not awake enough to do anything except maybe wash dishes.

    I believe that what I’ve done by focusing on a game is “wake up” the chemicals in my brain — such as adrenaline and the neurotransmitter dopamine, which is normally in short supply because of the Attention Deficit Disorder.

    Also, as you point out, I am sitting in a room filled with (artificial) light.

    I normally do feel sleepy at 10 pm-ish, but am overriding that impulse by (1) continuing to work on a writing assignment and (2) stimulating my brain with a game that, ironically, I turn to as a means of unwinding!

    I also tend to eat after 10 pm because of my boyfriend’s work schedule, and I find that eating has the same effect on me as a cup of coffee.

    Two things that have helped me get to sleep, however, are:

    * some “energy medicine” exercises that involve “thumping” on meridian points (i.e. the hollows at the base of your collar bones)

    * and a Bach flower remedy about which I was initially very skeptical — but two spritzes on the tongue and my mind gradually starts to let go its grip on planning-type thinking, or rehashing the day, or reliving some stress-inducing memory (i.e having to put my dog to sleep in July).

    I also am about to haul out my Happy Times light box, which actually works, in terms of resetting the biological clock by “tricking” the pituitary gland into thinking it’s spring, if you use it regularly each morning.

    So, there are some thoughts on the topic of sleeplessness, which may or may not be useful.

    One other comment — this one related to our brief discussion about being emotional in front of people.

    Those of us who struggle with an unruly brain often brutally self-monitor our reactions and behaviors.

    However, as friends have gently pointed out to me, my reactions and behaviors are often much healthier and “normal” than those around me who are repressing their reactions out of self-consciousness and fear of being vulnerable.

    So, for example, it is not at all “weird” to cry as you read a poem about rehearsing your mother’s death.

    Nor was it “weird” for me to burst into tears when I read about that man who shot his fellow soldiers on the military base in Texas.

    Or to insist my boyfriend change the channel when the History Channel is showing old black-and-white news reel footage of dead bodies strewn about as the result of some battle.

    As I say to him, “That is not some movie… I don’t want those images in my brain… those are real people.”

    Who is more “weird,” the person who is disconnected from the horror of what they’re seeing? Or me, who is sickened and weeps over the insanity of war?

    So, please don’t assume there is something “wrong” with your reactions. I know it’s hard — but sometimes we of ADDled minds and others are actually healthier than the “normal” folks.


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