The Little Hours

My brain and I don’t like each other very much.

My brain is like that guy at a party who follows you around expounding on some pet theory you want to hear less about than you want to hear about Donald Trump’s regularity. Its favorite time to do this begins at about 11pm, and goes until about 4am, the result of which is that I haven’t have a solid night’s sleep unmedicated in decades.

I am aware of what some people think of this– at best, I’ve been told I’m not really sleeping I’m passed out; at worst I’ve been called an addict (no, nothing I take is a narcotic or barbiturate). People who say this do not have to live with my brain. They are a little like those rich people who criticize poor people for not saving money by buying things in bulk, or people with even-tempered, well-behaved children, who criticize the discipline methods of people whose children have ADD, autism, or are just extraordinarily stubborn and cranky. “Sleep when the baby sleeps” Is poor advice to someone who cannot just lie down and fall asleep, and whose baby only sleeps forty minutes at a time.

I am aware of the number of dime-a-dance blogs out there offering advice on curing your insomnia.

I don’t have any cures. If I did, I’d be sleeping, instead of typing at 3 in the morning.

I do have a long list of things people have told me to try, which failed, and a much shorter list of things which helped a little, maybe a lot in the aggregate.

Currently, I am experiencing a particularly bad bout of insomnia. Unless I double down on my PRNs, which can’t go on forever, I’m sleeping at most, 3 hours a night, usually less, and terrified to go anywhere. My one sure-fire soporific is driving, one of the few things for which hyperwakfulness would serve me well. I can manage a nap during the day sometimes, another thing I’ve been told not to do– but my net sleep in a 24 hour period is still only about half of what it “should” be.

So if you came here for advice; sorry. But if you need a paradigm shift, I can help with that. I can make your reality OK. If friends and family are offering the same worn-out advice over and over, and making you feel a little guilty, I can give you permission to ignore them. And I can give you a forum to complain. If the people around you are sick of hearing about it, I’m not; come here and commiserate.

ADVICE FROM ALMOST 4 DECADES

These have come over the years from actual doctors, from licensed therapists, from print articles, from random people on the internet, from well-meaning friends, from unsolicited buttinskies, and from people who swear they were inveterate insomniacs too, until this sure-fire solution worked for them.

1. If you don’t fall asleep in 20 minutes, get up and do something else.

2.  Avoid screens right before bedtime.

3.  Don’t fall asleep in front of the TV (even if it has a programmable shut-off).

4.  Don’t use the bed for anything but sleep, sex, and reading.

5. Don’t use the bed for anything but sleep and sex.

6.  Don’t use the bed for anything but sleep.

7.  Don’t use the bedROOM for anything but sleep.

8.  Use a white noise machine.

9.  Get plenty of exercise during the day.

10.  Don’t exercise right before bedtime.

11.  Don’t eat a heavy meal before bed.

12.  Do eat something light, with protein, before bed.

13.  Check your blood sugar before bed. You want it to be right around 100.

14.  You need a completely dark room. Block any light coming in through cracks in the windows. Get black-out blinds.

15.  Meditate before bedtime.

16.  Meditate during the day.

17.  Take care of everything possible that you will need to do in the morning, so you have less to worry about: lay out your clothes, make your lunch for the next day, etc.

18.  Sleep in a cold room. Buy a fan or crank up the AC. Put a wall AC unit in the bedroom, even if you have central air.

19.  Sleep under a weighted blanket.

20.  Reset your sleep schedule by staying up all night one night, then going to bed at your “target bedtime” the next night.

21.  Go to bed at EXACTLY THE SAME TIME EVERY NIGHT.

22.  Get up at the same time every morning.

23.  Don’t nap during the day.

24.  Don’t set a sleep goal for yourself– don’t think you MUST get a certain number of hours of sleep each night. What you get is what you get.

25.  Don’t drink anything for the two hours before you go to bed. You won’t have to wake up to pee.

26.  Make sure your bed isn’t under a window, particularly an east-facing one that will get morning sun.

27.  Practice yoga during the day.

28.  If you are a side-sleeper, sleep with a body pillow to support your back.

29.  Take melatonin supplements.

30.  Sleep with your head elevated.

31.  Sleep with your feet elevated.

32.  Get checked for sleep apnea.

33.  Take a warm bath right before bed.

34.  Don’t drink caffeine after noon.

35.  Don’t drink caffeine at all.

36.  Play classical music (yeah, The Rite of Spring is very soothing).

37.  Play an audiobook.

37.  Check the feng shui of your bedroom.

39.  Quit smoking– Hah! I don’t smoke, and never have, but I love how many people assume that I do because I have trouble sleeping.

40.  Try acupuncture.

41.  Get professional massages.

42.  Make sure you get exposure to sunlight during the day. Use a sunlamp in the winter.

43.  If you have intrusive thoughts that keep you awake, write them down just before you go to sleep. This will keep you from obsessing over them.

44.  Don’t have any clocks visible in the room where you sleep. You don’t want to know what time it is, so you aren’t constantly calculating (ie, “worrying about”) how much “sleep time” you have left.

45.  Buy an orthotic pillow.

46.  Buy a cooling pad for your pillow.

47.  Practice deep breathing. (Exactly what it sounds like– you takes deep breaths.)

48.  Count backwards from 100.

49.  Count backwards from 1,000.

50. Use “Alpha-stim,” a thing that delivers mild electric currents to alligator clips attached to your earlobes.

51.  Take Hyland’s Calm Forte (a homeopathic preparation, something people should know better than suggest to me).

52.  Drink something warm right before bed.

53.  Take X, Y or Z herbal supplements (too numerous to list).

54.  But for gawd’s sake, DON’T take prescription drugs given to you by someone with a medical degree. They are evil.

When I think about some of the idiocy I’ve tried, I want to dropkick my brain, but yes, I’ve been desperate enough for nearly all of the suggestions above. As 3am closes in, and I haven’t slept, and didn’t the night before either, elevating my feet is a very small thing to do. Once, at 2:24am on my third night of less than three hours of sleep, I found myself checking Amazon.com to see if they sold the Alpha-stim.

I hyperventilated once, trying to “deep breathe” myself to sleep.

I’ve been to four psychiatrists, and two sleep specialists, as well as a couple of therapists of different ilk (NP psychiatry, & PhD psychology). I let a several people come into my home and move furniture around– not for feng shui, but to adjust where the light fell on my bed in the morning, to clear the path to the bathroom, to “take advantage of air currents” and various things like that. I’ve allowed my bed to be remade, and told what pillows to buy, what sheets. One guy said “plain white, no distractions,” another said “black or navy blue,” so even a little light in the room wouldn’t be reflected, while yet another wanted me to take a personality test to determine what sort of abstract print I would find the most soothing.

The actual print I sleep with:

Images from the pinball machine Wild Fyre. It’s a great old electro-mechanical machine, and on my list of things to buy if I even find a magic lamp.

Yes, there is a laptop in the foreground, and a collection of NES games in the background. And a screen. But only after I tried going screenless, and wow, did that ever fail. With a capital F, and that doesn’t rhyme with anything.

I have NEVER tried acupuncture, homeopathy, or feng shui, I want to state for the recordI have standards, low though they may be– I did drop over $100 dubious dollars at the GNC on herbal preparations I never really thought would work. When you have slept seven hours in the last five days, you have poor judgment.

I followed a get up/go down schedule so punctually, people who had to live with me were driven to drink. And I mean punctually– to the minute. I would stand by the bed counting down minutes, and climb in at exactly 9pm. I rearranged the house so I was sleeping in the tiny back room that had space for no more than the elevated bed I’d built, and the dressers built in under it. I found a futon at Goodwill, which I put in the house’s official bedroom, transformed into a library, and the futon became the platform for any other activity besides sleep.

Sleep ease, for me, on a meter that goes to a 10, usually hovers around a 7. Every thing on the list that chipped away a little at the difficulty (to mix my metaphors), brought it down to maybe a 4.5. The trouble is, that to get a decent night’s sleep, you really need to get down to a 2, at the most.

Here’re things that actually worked, some a lot, most just a little, but I’m desperate enough to keep doing anything that made the tiniest ding in the problem, even when it begins to look like superstition.

·  Use a white noise machine.

·  Get plenty of exercise during the day (getting crazy lots of exercise turned out not to be necessary; but being active during the day really helps).

·  Sleep in a cold room (it gets expensive in the summer, but I set the AC on 67°F at night).

·  Eat something light, with protein, before bed.

·  Check my blood sugar before bed. (I have reactive hypoglycemia, and keeping my blood sugar from falling very low while I’m asleep is a good idea.)

·  Sleep with a body pillow to support my back (I vary; sometimes I sleep on my side, sometimes on my stomach; but having this at my back does seem to keep me asleep longer).

·  Take melatonin (I take an embarrassingly high dose of this every night, but it helps).

I really don’t think you are supposed to take 6.

·  Don’t drink caffeine after noon (I tried giving up caffeine completely; turns out that in me, it has a slight antidepressant effect; without any at all my mood deflates like the bounce house when the carnival is over).

·  And my #1: Don’t set a sleep goal for yourself– don’t think you MUST get a certain number of hours of sleep each night. What you get is what you get. This one was huge. I used to lie awake in bed, worrying myself into wakefulness over the fact that I never got 8 hours of sleep. I’m not sure where I read that adults needed to average 8 hours of sleep a night, but I was fixated on that number, and I never even got a cumulative 8 hours, even when all my little fits and starts were added together. At some point, though, I decided not to worry about it. I would sleep what I slept. That was when I went from having many completely sleepless nights, to occasionally getting as much as four hours, to sometimes getting as much as six, and once in a while, even seven. And I discovered I could live with that much. I never really needed 8 in the first place.

So I’ve returned to the list, and decided to try some of the things I was perhaps overly skeptical of before.

My weighted blanket was supposed to arrive by FedEx today, but it got waylaid in Champaign-Urbana, and now isn’t expected until tomorrow.

“But for gawd’s sake, DON’T take prescription drugs given to you by someone with a medical degree. They are evil.”

This is the advice I hear most often. I get it from therapists, but mostly I get it from lay people. I get it on what seems like a weekly basis from people who swear they “healed” their insomnia with meditation; sleep hygiene; or herbal tea. They always turn out to be people who couldn’t sleep well after a death in the family, or being fired from a job they’d had a while, or some other upheaval in their lives. And their “chronic” insomnia had lasted a devastating 3 or 4 months before they cured it.

Yeah, those affect me too; upheavals. I go from struggling to get six hours, to getting two or three. I will wrestle an alligator for the last Ambien on those nights.

For years, throughout college, and my first several years as an interpreter, when I was young, and it was just somehow easier to live on less sleep, I survived on four hours a night, and a LOT of caffeine– I was taking two 200mg pills every morning with coffee, and then usually another pill around noon.

ADENOSINE, and why caffeine wakes you up

On the weekends, I would sleep from exhaustion. I thought then that I was using the weekends to “catch up,” and everything was fine. I’m sure now that it wasn’t. Who knows what those years did to me?

At any rate, by my late 20s, I had a job that required lots of driving, frequently out of town. I ended up in a serious car accident (both cars were totaled, but no one was badly hurt), when I fell asleep behind the wheel, trying to make daily 50 mile commutes on 4-5 hours of sleep a night.

So I went to see the NP at my doctor’s office, someone I trusted a lot. I confessed to her I hadn’t slept through the night since I was a teenager. She was much, much less shocked than I had expected. Here I was, thinking I harbored a shameful secret, and it turned out I had a problem nearly as common as teenaged acne. She gave me ten days’ worth of Ambien, and said if that didn’t reset my sleep cycle, we’d start looking at a daily medication, such as trazodone. She said it as though she were talking about choosing a color of paint for the bathroom.

Have you ever felt a paradigm shift? You’re sitting in a chair, and a minute later, it’s the same chair, but it’s different? Maybe it’s the fact that you aren’t usually aware of the chair under you, but there it is, cushioned, but solid, and it has a name, “chair.” A short word, but strong; apt– it will hold you up during this moment of vulnerability. The air is there; you don’t miss a breath, but a knife has fallen, and severed the continuity, so the air you breathed in doesn’t feel like the the air you are holding in your lungs. Holding, until you are reminded to exhale.

I didn’t count how many seconds it took me to absorb this new reality, but she had to call my name, tell me to breathe, and after looking at me like I was a specimen for a moment, asked whether I was OK. I lied, “Sure. Just tired, y’know.”

“Of course.” My savior reached out and touched my shoulder. At that touch, suddenly, I wanted to hug her, like a little kid hugs a parent who has just returned from a long trip. Then she said “Do you want a referral to a counselor?”

“What?” I had tears in my eyes. “Oh, no,” I answered. I wanted to say “I just can’t believe there’s light at the end of the tunnel.” But I needed to sit perfectly still; I couldn’t talk. I needed not to cry, and freezing in place was the only way to dam up my eyes.

When I was a kid, I had an infection with Helicobacter pylori, the bacterium responsible for giving people ulcers. When I had it, people still believed ulcers were the result of stress, and anyone with the kind of gastritis I came down with needed to reduce stress, nevermind that I was 12.

Nevermind either that I had the kind of parents who wouldn’t dream of sending me to a counselor, nor doing any of the other things the doctor recommended, other than put me on a regimen of Mylanta and Tagamet (which was a prescription drug when I took it).

I don’t know if you ever tasted 70s era Mylanta, but it tasted like an industrial chemical. Choking it down was as difficult as getting an injection at the dentist, I’m not making that up. And I had to take it three times a day. It came in tablets the diameter, and twice the width of Necco wafers, and had to be chewed and swallowed. I used to break them in pieces and take the pieces like pills, which means that it might not have been doing me any good, but it was the only way to choke it down. I have no words for how nasty this tasted. Gritty on one side, sugar-free fake lime flavor on the other, and with an undertow of disgusting, that could be used like syrup of ipecac.

And by the way, to be diagnosed with this kind of gastritis, I’d had x-rays and an upper endoscopy at age 12, complete with the bowel cleanse, self-administered. My mother was in Prague at the time, doing research for her dissertation, and my father just dropped me off at the doctor for my preliminary appointment, where they gave me all the instructions on the prep, which I followed to a T, having no idea what was going to happen to me. I faithfully took four large yellow pills, at the appointed time, not knowing they were powerful laxatives.

So I went through my tweens and teens with lots of abdominal pain, that was my “fault,” for allowing myself to get stressed out all the time. Albeit, Mylanta came out with a better delivery system, and I discovered Rolaids. Popping them like candy helped, but didn’t solve the underlying problem.

All this time I built a self-image of a person who didn’t handle stress well—who held everything in, until physical symptoms appeared, because that’s what I’d been told I must be, to have this stomach condition.

It wasn’t really true—I had an infection, that to anyone’s best guess, finally went away when I took a pair of antibiotics for a raging bladder infection, and stayed on one of them long-term (six weeks).

As for how I was exposed to H. pylori– when I was 10, I lived in the Soviet Union, where the water wasn’t the cleanest. We were pretty faithful about boiling our drinking water, but in a year’s times, slip ups happened.

Years later, I had to have surgery on my stomach to remove parts of it that had undergone some bizarre tissue changes—I had polyps, and intestinal tissue was creeping into my stomach lining. They took it all out, and now I’m back to getting a lot of gas, heartburn and reflux from the reconstruction, but at least I know there’s a physical cause, and not an emotional one.

However, I don’t think I have ever ditched the idea of myself as someone who internalizes my emotional baggage until it pops out in inconvenient symptoms. Even though the Ur-symptom was never real—I mean, never really psychosomatic; it was entirely real—I think I became someone who displays psychosomatic symptoms in response to stress, after being told since the age of twelve that that is who I am.

So I’m sure that any time there is any stressor in my life, it interferes with my sleep, and probably to a greater degree than it would other people—and this is sleep that is already not going well.

On a scale of 1 to 10, most people’s sleep-ease is a 1, 2 or maybe 3. I’m a 5, on a good day, with no stressors, and no complications, no reason not to get to bed on time, no ambulances screaming to the building across the street in the middle of the night.

Then, I have medications that bring me down to a 4, and all my other interventions, my body pillow, rigid schedule, and I get down to a 2.5, or so. And I stay sane. But when any little thing is off, I crank up to a seven. Or an eight, or even a nine. I have PRNs to try to kick the number back down again.

But those little things that kick it up, some of those, at least, are surely learned?—those are part of my identity as someone who internalizes stress.

However it came to be, I am an insomniac. My brain refuses to sleep. And I hate my brain for it. But I have to admit my own culpability in the situation. Thus I have spent 30 years unsuccessfully unteaching myself that poor medical understanding of Helicobacter pylori in 1979 is not a reason to lie awake at night. Of the hundreds of thousands of things I have learned and forgotten that could have been useful to me, this, I cling to.

The first medication the nurse practitioner-savior tried me on was Restoril, or temazepam, a benzodiazepine (Xanax-Valium family). It worked. Oh my gawd, did it work. I took it right after getting into bed, kept it by my pillow, along with a bottle of water, and woke up blissfully eight hours later, not wanting to get out of bed, like I used to feel when I was a young teenager.

It seemed like the miracle I was looking for, for about two weeks, but then I started to feel hung-over in the mornings, and getting out of bed was becoming a chore. On top of that, my knee and elbow joints were sore.

Next med I tried was Trazodone. It put me right to sleep, but I didn’t stay asleep. I kept waking up at 4am, unable to fall asleep again. Buspar left me feeling odd during the day– spacey and unfocused. I got great sleep on Remeron, just amazing, but I also gained 25 lbs.; had a similar response to amitriptyline. So, the next try was desipramine, another tricyclic similar in structure to amitriptyline, and that was a keeper. I did really, really well on it for a few years on it. It made me a little constipated, so I took a bulk supplement, and had a huge BM right after breakfast every day.

They were great years. Going to bed at night, knowing I’d fall peacefully asleep right away was a joy. I loved my bed– I bought new sheets, and expensive pillows. I bought a swing arm lamp, because now it was OK to read for 20 minutes before turning the light out and going to sleep. I even started leaving the phone on the hook overnight– I used to take it off, because if I got a phone call after going to sleep, that was it, I was up for the rest of the night, and late night calls were nearly always wrong numbers.

It was back in these days. –>

Then someone published a paper about desipramine and heart attacks, and the psychiatrist I was now seeing at the behest of my NP, who wanted me to have a sleep study done, took me off of it, even though I had none of the heart attack risk factors. Next came Rozerem, Risperdal, and Geodon. They all worked for a while, but eventually failed, as though my brain built antibodies.

The psychiatrist also put me on Luvox, an OCD med, to stop intrusive thoughts that were interfering with my ability to fall asleep.

In the meantime, a neurologist I’d gone to see for good measure thought I was getting up too many times at night to pee, so I got sent in for a glucose tolerance test to make sure I wasn’t diabetic.

This is how I found out I have reactive hypoglycemia. When I eat sugar, particularly on an empty stomach, my pancreas releases more insulin than is necessary, and my blood sugar drops precipitously.

I was supposed to have eight blood draws (and finger sticks) during the glucose tolerance test, but on number six, my blood sugar was at 25 (100 is normal; 0 is dead), and so the test was halted, and I was sent to the emergency department to get something to eat, along with an IV drip with something in it that was supposed to raise my blood sugar slowly. I’ve forgotten what it was. I’m a vegetarian, so they brought me a diabetic version of an Ensure/Boost-type product, peanut butter, saltines, cheese, and a banana. It was apparently the best they could do at an off-time for a vegetarian. They wouldn’t release me until my blood sugar was 90, since I was driving myself home.

I got a prescription for Detrol, which freaking works, by the way. I was skeptical of that as well, but my gawd did it work. I could sit through a movie without needing to pee, for the first time in years. I could drive the 4.5 hours from Indiana to Chicago without a stop.

And now I was getting up only once a night to pee.

Risperdal was great, when it worked, and Geodon did nothing. I don’t remember the name of something I took briefly, that worked, but was a difficult medicine to manage. It had to be taken in several doses during the day, and they had to be at the same time each day. If I missed a dose two days in a row, it had to be titered back up, or I could have a serious reaction to it, and then not be able to take it at all.

The Luvox had the desired effect of slowing down my brain, but at the same time, the undesired effect of making me anorgasmic. I don’t mean that I had a depressed libido– I mean, I’d been chemically clitoridectomized.

I wanted my brain to shut off so badly, though, that I did without orgasms for over a year, and took the Luvox.

I cannot tell you how any other person thinks. I’ve never been in any head but my own, and it’s thorny enough here— but from what I gather, my thought process is sui generis. My thoughts come so fast, words can’t keep up with them. I think in pictures that pile up on sounds, on top of tactile sensations– a pile-up that would block the highway for hours, but my thoughts just see the pile coming, and vault over it, sometimes in the form of sensations I understand, but cannot describe to other people. I’m surprised you can’t see my skull bulging and protruding from the outside while the melee goes on inside.

I have trouble sleeping, because my head needs a c-section.


Current

Medications

for those of you wondering

So many things have been tried, errored, tried, combined, titered up, down, across and back. This mix is the result of dumb luck, mostly. I have been on this cocktail for over ten years. Generally, I do pretty well on it. I’m still an insomniac, like a diabetic stable on insulin is still a diabetic, though.

200mg topiramate / day (5pm): this is primarily an anti-seizure medication; I am not an epileptic, but I startle awake a lot during the night. This is supposed to suppress my startle reflex. It also is supposed to slow my brain down in general.

5mg aripiprazole / day (8am): this is an anti-psychotic. I take too small a dose for someone with psychosis. This is also just supposed to slow down my brain so my thoughts don’t come tumbling so fast that I get a little obsessive trying to keep track of them. And no, that isn’t psychosis, because I know they are all in my head, and I can distinguish my thoughts from reality. This medication helps with obsessional behavior as well, without the side effects that Luvox has.

.5-1mg clonazepam PRN: this is a benzodiazepine (in the same family as Xanax and Valium). I take it when some extraneous life-circumstance is keeping me from sleeping. When my mother was in hospice, I took it every night.

5-10mg zolpidem PRN: this is generic Ambien; it’s a medication specifically for inducing sleep, but it becomes less effective the more you take it, so I use it sparingly. I take it if I need to go to bed very early and get up early, or had to stay up late the night before, and need to get back on schedule. I use it when changing time zones. I use it during very bad spells, which happen a few times a year, and last usually 1-2 weeks.

200mg bupropion: this is generic Wellbutrin. It’s an antidepressant, but it also makes you alert without making you jumpy, the way caffeine does or prescription uppers, like amphetamines, do. It keeps me alert on days after I slept poorly. There’s a sustained release version, but if I take that, forget falling asleep at night. I have to take the old-fashioned “regular” version which a lot of pharmacies don’t even stock. The pharmacy I go to all the time does, for me. I can’t forget this one if I go out of town.

30mg melatonin, rapid release / day (8pm): this is a sleep hormone people secrete that I apparently do not make enough of. This is a burst of it right when I go to bed.

30mg melatonin, sustained release / day (8pm): I take two kinds of melatonin, one that is supposed to release slowly through the night, and one the kicks in in a large dose right when I go to bed. One is supposed to get me to sleep in the first place, while the other, that releases slowly, is supposed to keep me asleep. I am skeptical.


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