Archive for Sleep

Autism, Insomnia, and Pharmaceuticals

May 16, 2010 Rachel Childhood, Depression, Happiness, Medications, Sleep

Disclaimer: In this post, I’m going to describe my ongoing experience with pharmaceuticals and my process of weaning off them. I speak only for myself, in the knowledge that each medication affects each person differently, and that the process of weaning off medications is unique to each individual. In other words, everything I write here is descriptive of my own experience and is not intended in any way as a form of advice.

Despite the severe symptoms that accompanied my abortive attempt at Lorazepam withdrawal, my progress with weaning off my other meds has been going very well. In fact, except for the Lorazepam, I have stopped taking all of them. In April, I went cold turkey off Amitriptyline (which I’d been taking for over 20 years) and weaned off Topamax (which I took for a truly horrible six weeks). On May 1, I began the process of weaning off Zoloft, and took my last 25 mg dose on the evening of May 14. Last night was my first Zoloft-free night in seven months, and wow, do I feel better! On May 4, I began stabilizing on 1.5 mg of Lorazepam per day in three .5 mg doses, and that seems to be going well.

When I was taking both Zoloft and Lorazepam, I was sleeping about 6-7 hours/night. Last night, with no Zoloft (and only Lorazepam), I slept for 8 hours and had a series of very powerful and vivid dreams. And I woke up happy! And energetic! Without an anti-depressant! Can you imagine? In researching the side effects of various medications, I learned that Zoloft can cause insomnia (!), so it wasn’t exactly the best thing for me to take, given that my main challenge is, um, insomnia.

Isn’t it amazing that I’ve figured this stuff out in the absence of a medical degree? It’s astonishing what you can do with an Internet search engine and the ability to read.

I’ve also found that weaning off Zoloft (and other SSRIs) can cause “discontinuation syndrome” (which sounds suspiciously like a euphemism for “withdrawal” to me). This “syndrome” can start 1-3 days after the last dose and can include irritability, agitation, anxiety, insomnia, dizziness, vertigo, lack of coordination, nausea and vomiting, and flulike symptoms such as fatigue, lethargy, muscle pain, and chills. You’ll notice that the subtle side effects of acute Lorazepam withdrawal (seizures, acute suicidal ideation, and death) do not appear on the Zoloft withdrawal list, so I feel confident that I can weather the Zoloft discontinuation for however long it lasts (and may it not last long).

As for weaning carefully off Lorazepam, I’m going to wait until the Zoloft withdrawal is over. Otherwise, I won’t know how much is due to the Zoloft withdrawal and how much is due to an overly confident Lorazepam taper. The good news is that my regular doctor has been a gem about this whole process. I sent her information about how I can very, very gradually taper off Lorazepam, and she’s completely supportive of what I want to do. She’s going to do her homework so that she makes sure I’m tapering slowly enough and at the right doses. And she also plans to stay in regular contact with me as I go through the process, which will take several months. She knows that weaning off benzodiazepines is no fun. At all.

Of course, at some point, I will get to so low a dose of Lorazepam that I’ll start to experience insomnia. This is the part of the whole process that scares the living shit out of me. My insomnia (first controlled by Amitryptiline in 1987 and now by Lorazepam) began in early childhood and was induced by protracted trauma that included consistent sleep interruption and deprivation. Very, very bad stuff. Coping strategies aren’t enough. I have many coping strategies, but the only thing that has ever helped me overcome the insomnia is medication. Fortunately, the other doctor at the family practice is very keen on homeopathic and other natural remedies, so he is going to help me try a non-pharmaceutical alternative when the time comes. If the natural remedies don’t work, however, I am going to get a prescription for a new medication called Silenor, which treats insomnia and is not addictive. It seems to be based on a tricyclic anti-depressant (similar to the Amitriptyline I used to take, but without many of its side effects).

I’ve come to realize that the goal here is not to be medication-free. The goal is to be able to sleep. Of course, if I can do that without pharmaceuticals, all the better, but I can’t be a purist. Without sleep, I have no quality of life at all.

Which leaves me wondering: how much of my insomnia is due to autism and how much is due to trauma? I’d like very much to hear what your sleep patterns are like and what your challenges have been—whether or not you have a trauma component thrown into the mix. Hearing from other autistic people about sleep will help me start to get more clarity on how to separate the effects of trauma from the effects of autism. Of course, to some extent, I can’t separate them. The trauma was even more acutely damaging given my autistic sensory and emotional sensitivities, and given how acutely the ordinary world affects me, the autism itself can cause my system to feel very traumatized. Nonetheless, I would like to understand the origins of the insomnia as well as I can, and hearing about your experiences would be very helpful.

© 2010 by Rachel Cohen-Rottenberg

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Letting Go and Starting Over

June 1, 2009 Rachel Autism-Literate Therapists, Eye Contact, Marriage, Meltdowns, Occupational Therapy, Parenting, Sensory Processing Disorder (SPD), Sensory Processing Issues, Sleep, Spectrum Pride, Volunteer Work

Last night, I reached a milestone in my life. And today, I am so relieved. Tired, but unbelievably relieved.

The backstory: We’re having a new ceiling put into our living room because the old plaster was flaking off. The process entails moving everything out of the living room into the dining room so that the contractors can work. The whole job will probably take another three days. So everything is piled up in the dining room, and I have to walk through the mess if I want to use the bedroom, the kitchen, or the bathroom. Did I mention that I hate clutter?

Yesterday, the contractors were supposed to be here at 9 am. I had planned to do some writing in my loft in the morning, while they were here, and then hang out in the rest of the house after they’d left. It’s always difficult for me to have people in the house, especially ones making lots of noise, so I figured I’d burrow into my loft for a few hours, and by the time I came out, they’d be gone.

Nice plan, huh? Unfortunately, the guys didn’t get here until 11 am or so. Isn’t it fun when people are late and blow your plans right out the window? I got very agitated. I could feel my nervous system panicking. They had good reasons for being late, but I felt like my day was getting totally disrupted. 

In addition to getting here late, the guys were here a lot longer than I’d thought they’d be, and the whole thing became very overwhelming and disorienting. There is only so long that I can hide upstairs before I need to go to the kitchen and get something to eat. And, of course, the irony of the whole situation is that the guys doing the work are wonderful people—friendly, conscientious, and good at what they do. In other words, they’re the kind of people that anyone without a jangly nervous system would love to have around.

But I’ve got a very jangly nervous system, and by the evening, it felt like my day had been turned upside down and shaken a few times. Needless to say, I started to get upset. The disorder in the dining room was driving me nuts. My nervous system was so keyed up that I was shaking. I was feeling angry, and I said so, but the anger very quickly turned to tears. My meltdowns seem to follow this pattern these days. I go through the anger part really quickly and then go straight for the sadness.

I felt really exhausted, but it wasn’t just because of the work on the house. What happened yesterday was just the proverbial straw that broke the camel’s back. What I’m really exhausted by is all the energy I’ve expended since forever in my ongoing quest to become neuro-typical. Now that I’ve realized that I don’t have to pretend anymore, everything I do out in the world feels impossible. Working at the store feels exhausting, because every single time I have a conversation with anyone, I have the following script running in my head:

“Okay, smile……Make eye contact. No! Not that much……Pause. Say something helpful, but don’t jump in too fast……Wait……Wait……Now! Say something clever……Very good……People laughed……Now, make more eye contact……Okay, the conversation is winding down……Okay……Oh, shit, how do I exit gracefully from this interaction? I have no idea……Help……Okay, okay, I’ll just use my strong voice and act confident……There……I’m walking away now……G-d, I feel like such an idiot….”

For some strange reason, running this script just isn’t fun for me anymore.

My husband and I talked for a long time last night, and he helped me to see that almost all of the commitments I’ve made in the outside world are optional. I don’t have to do them. I made most of these commitments when I was still thinking that I just had to work really hard at the store, or on my OT work, or whatever, and things would get better. Even though I knew that I couldn’t change my neurology, even though I had accepted that I wouldn’t make friends at the store, even though I knew that the OT work might not have any effect at all, I still went into everything with the old idea of progress. It’s hard to shake. In large part, it consists of trying to be the NT that I think the world expects me to be. I know I’ll never get there, but over the course of my life, I’ve tried getting as close to it as inhumanly possible.

At some point in the past six months, it did dawn on me that I might not be the quite the actor I thought I was. But this realization didn’t stop me from trying. I still catch myself working on my big, ongoing, lifetime challenge to see how close I can get to “normal.” I used to wonder whether I’d actually fooled anybody, but you know what? I don’t care anymore. The only way for things to get better is for me to start untangling my true Aspie self from all my ridiculous mega-efforts to be someone I’m not. 

I’ve had an NT impersonator job all my life, and it’s time for me to retire. Fifty years is enough. It really is. I don’t need a pension, and I’m not going on the public dole. I’ve got all kinds of great things I love doing, and the old job is getting in the way.

So, although I love my OT, driving an hour to see her is really out of the question. I’m so exhausted by the intensity of all the sights, sounds, movement, and emotional energy out there in the world that I need to pull back in a major way and have some respect for myself. And I don’t want to work at the store again until I find some way to be there without constantly running my script. Having come to these realizations, I emailed my OT and the people in charge at the store. My OT wrote me back a really lovely, supportive email. I’m pretty sure I’ll get a similar response from the people at work. After all, I have taken care to surround myself with very nice people.

Meanwhile, here I am, living in this strange transitional state of knowing that the old ways won’t work, and wondering what the new ways will look like. I hate transitions, but there you are. I don’t know what the future has in store, but I do know that my marriage, my mothering abilities, and my capacity to be a friend all depend upon being in some kind of harmonious relationship with who I really am.

I’m only beginning to understand how different I am from most people. I’m only beginning to understand that most people do not experience the world with anything remotely approaching the intensity that I do. And I have to respect that. I have to respect the fact that just going outside and seeing all the green leaves on the trees can be a beautiful and overwhelming experience. It’s overwhelming because it’s so damned beautiful.

Perhaps I need to experience the world in small portions. Something like that.

It  feels so good to start over—to get up in the morning and tune into my hyper-aware, hyper-sensitive Aspie nervous system and see what we can do together. Last night, I didn’t sleep well, and when I have things to do in the outside world, I always feel very anxious trying to do them without enough sleep. But this morning, I realized that I didn’t have to go out there. I could be tired, and it would be all right.

The one outside commitment I’m keeping is to my new therapist. First things first. I want to work on accepting who I am, and she seems quite willing to help me. So that’s where I’ll begin. Again.

© 2009 by Rachel Cohen-Rottenberg

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Sleeping, Listening, and My Fourth OT Visit

April 15, 2009 Rachel Anxiety, Hearing, Occupational Therapy, Sensory Processing Disorder (SPD), Sensory Processing Issues, Sleep, Therapeutic Listening, Vestibular System, Weighted Blankets

Note: For posts about previous visits, including my sensory assessment, see the Occupational Therapy category, to the right of this post.

After receiving so many wonderful ideas from all of you about my sleep resistance dilemma, I went to see my OT on Monday. The first thing she had me do was to write out a list of objectives for the therapy. A list! I was so happy.

Objectives

  • To stop resisting sleep by eating and watching TV.
  • To reduce auditory overload. (Auditory overload seems to be the most intense for me, followed very closely by visual and vestibular overload.)
  • To do the grocery shopping one day per week, every week. (My husband does most of the grocery shopping these days.)
  • To deal better with changes to my routine. (I don’t get upset with people anymore when plans change, but I still get very stuck and have difficulty adapting.)
  • To keep up with OT tasks, such as exercise, singing, and drumming.

We began working on the top two issues on the list: sleep resistance and auditory overload.

Sleep Resistance
We talked about my sleep issues from a sensory point of view. My OT feels very strongly that I need to reframe the way I see winding down, ending the day, going to bed, and sleeping. Right now, I resist all of those things. She said that I need to frame all of them as being very positive. Sleep is the time that our bodies regenerate cells. Sleep provides rest for the immune system and for the nervous system. Both systems are key to the health of the body and to the enjoyment of the daytime hours.

We then discussed ways to take care of my sensory needs so that I don’t try to calm myself by watching TV and eating too much. It’s clear to me that what calms my nervous system is a lot of physical, tactile pressure, like the pressure of a weighted blanket or the vibrations of the Thumper. On Passover, I fell asleep under two weighted blankets—30 pounds of pressure. Since I’d like to start going to sleep earlier, my OT suggested that in the evening, when I imagine the best possible place in the world to be, I imagine lying underneath 30 pounds of weighted blankets at 10:15 pm! Talk about reframing. Given that lying under weighted blankets feels a little bit like heaven, I think I can do it.

As we talked about the process of replacing one routine with another, my OT was very adamant that I not completely ditch the old way of doing things until I add something more powerful to it. My tendency is to try to jettison an entire routine before I’ve started on a new one. The results are usually not good. So this time, for example, I will not take away chocolate without giving myself something that works better. In other words, I need to respect that I am in a transition. Transitions are difficult, but I’m willing to put some energy into this one.

I’ve decided to make some changes. Over the past couple of days, I’ve taken a look at my daily list and given more attention to the times for my late afternoon and evening tasks. According to the list, I have different self-care tasks and chores to start by 4 pm, by 6 pm, and by 8 pm. Up to now, I’ve been getting the tasks done, somehow, but I’ve paid virtually no attention to the time at which I get started. For example, sometimes the dishes get done at midnight, even though according to the list, they should get done by around 8 o’clock.

In addition to keeping better track of my present tasks, I added a new task, which is to make myself a very weird but useful concoction of mashed bananas, soy powder, and tahini at 10 pm. I used to eat this little concoction when I was on an elimination diet to weed out food allergies and sensitivities. It always helped me to feel full so that I could fall asleep. So, on Monday night and Tuesday night, I had this lovely dish and also allowed myself a small piece of dark chocolate. On Monday night, I feel asleep at 10:30 pm, woke at 4:20 am, and then meditated myself back to sleep until 6 am, when my alarm went off. On Tuesday night, I fell asleep a bit later, around 11:15 pm, woke up again at 4:20 am (not sure why, except that perhaps the heating system was coming back on), and then fell back to sleep until about 7 am. Not too bad at all. I didn’t watch TV either night.

I can see that this whole transition is going to be a one-day-at-a-time proposition.

Therapeutic Listening
After our conversation about sleep, my OT and I went into the gym and began the Therapeutic Listening program. The goal of the program is to help me filter out sounds in my environment so that they don’t feel like they are all rushing in at one high volume. It involves using a special headset and a series of CDs.

While lying under a heavy weighted blanket, while standing up on a swing and rocking laterally, and while rocking laterally on a peanut-shaped physioball, I listened to part of a CD called Mozart for Modulation. The makers of the Therapeutic Listening program take pieces of music and change them in ways that work the muscles in your ears. The music is supposed to be in the “background” to make your ears reach for some of the sounds, so I heard it at a low volume (from 2-4 on a CD player, without any bass boost), and I could still talk to the OT without needing to speak loudly. I was supposed to listen to the music while not actually concentrating on it (not so easy for an Aspie), so my OT had me swinging and rocking while I talked to her about, well, whatever—my daughter as a baby, what her sleep patterns were like back then, and a lot of other stuff I don’t remember.

Listening, talking, and moving were a lot to do at once, and I felt pretty tired and disoriented by the end of the session. My system really resists that amount of multitasking. But the OT said that the point of the therapy is to ask my brain to attend to several things at once without getting overloaded. I overloaded this time, but the goal is to begin to reduce the overload, so I’m willing to commit to this program and see whether it helps.

I brought home the CD and special headphones. I don’t have a portable CD player, and my OT said it was okay to listen to the CD on my computer, as long as I wasn’t watching the screen. (She said that, under no circumstances, should I listen to the CD while driving or watching anything on a screen. I don’t know what happens exactly, but it doesn’t sound good.) I was supposed to combine movement with listening to the CD, but right now, the only way to move and listen at the same time is to put the computer at the foot of my bike while I’m working out. I really don’t want to do that, because I love the routine of biking and singing my favorite songs. My OT agrees that I shouldn’t interrupt that routine.

So yesterday, after work, I came home, got myself organized, lay down under my weighted blanket, and listened to 20-30 minutes of Mozart for Modulation until I fell asleep! I really enjoyed lying under my weighted blanket in the late afternoon and listening to the CD. It was the first time that resting felt like a good thing, because my mind was occupied with something other than my own constant thinking. Since it feels so nice to me, my OT said that once a day, I should listen to the whole CD while resting, and then listen to it again at some other point, while I’m moving around. Moving around can include walking, eating a meal, knitting, making mobiles, or doing the dishes. The goal is to activate and integrate the visual, auditory, and vestibular systems. The CD is nearly 75 minutes long, so I’ll need to work up to listening to the full CD twice a day.

[Correction: I just heard from my OT, who reads my blog. She said that I only need to listen to the CD for 30 minutes, twice a day, with at least three hours between listening sessions. She said that the beginner CDs are 30 minutes long, and that she had forgotten how much more music was on the one she gave me.]

Of course, I finished off the OT visit with the Thumper, and this time, I could feel the vibrations in my teeth! Very cool.

© 2009 by Rachel Cohen-Rottenberg

8 comments

Sleep Resistance, Anyone?

April 12, 2009 Rachel Anxiety, Childhood, Food, Girls and AS, Sensory Processing Issues, Sleep

I’ve been reading lately about Asperger’s and sleep disorders. From what I can gather, the problems fall into two categories. Some Aspies can fall asleep without a lot of trouble, but wake up several times during the night. Other Aspies have great difficulty falling asleep, but few problems staying asleep. At any given time, an Aspie can have one difficulty or the other, or a combination of both.

My Life as an Insomniac
I’ve experienced both types of difficulties, but my biggest challenge has always been falling asleep. As a child, it took me 2-3 hours to fall asleep at night. I had all kinds of ways of passing the time. My favorite was to hide a small transistor radio under my pillow and listen to talk shows about baseball or hockey. I’d turn the volume down low so that my parents couldn’t hear. In the absence of a radio show, I’d create an elaborate fantasy in my mind about becoming the first female baseball player and pitching a perfect game in the World Series. (For details about this particular portion of my interior life, see my earlier post.)

Outside of baseball and hockey season, I’d run through all the songs from Mary Poppins or The Wizard of Oz in my mind. We had LPs of each, and I’d listened to them so many times that I could recreate them verbatim in my head. If I were still awake, I’d make up stories about being adopted by some all-American family, like The Brady Bunch. This particular pastime would generally put me to sleep.

In the midst of the radio shows, the musicals, and the hope for a TV family, there was a constant anxious undercurrent. The only way I can express it is to say that I was just plain afraid to fall asleep. Specifically, I was afraid to lose consciousness. As a child, I was sure it would hurt to drop from consciousness into sleep, rather like falling from a second-story window onto my head. I used to go around in circles, believing that the longer I stayed awake, the worse it would hurt to fall asleep. Of course, the fear would only increase the wakefulness, and the wakefulness would only increase the fear.

As an adolescent, the problem became worse. High school meant loads of homework, constant sensory overload, and an alarming increase in the dysfunctionality of my home environment. I’d routinely stay up studying until 3:00 or 4:00 in the morning. I don’t think I was really learning anything. I was just keeping myself awake by staring at print and taking notes. Of course, having to get up a few hours later for a 7:30 bus didn’t help my stress level at all. By the time I left home, I was already chronically and painfully insomniatic.

As a young adult, I struggled with this condition for the next ten years. Not only was I unable to fall asleep easily, but I also started waking up in the middle of the night and often had difficulty getting back to sleep. For a short time, I used over-the-counter sleep remedies, otherwise known as The Pills From Hell. They suppressed my REM sleep, so although I slept, I woke up the next morning stressed from not having dreamt. The stress created so much pain in my body that I continued taking the pills just to fall asleep, which led to a vicious cycle of increasing stress, increasing pain, and increasing insomnia. The cycle ended two weeks later, when I finally realized why my mother’s friends had gotten addicted to sedatives. Never sleeping ever again was better than the alternative, and thus my two-week foray into the land of sedative medication came to an abrupt and bitter end.

I continued to struggle until 1987, when I was a graduate student and went to UC Santa Cruz for a weeklong conference. After three terrible nights of not sleeping at all, I drove myself to the emergency room, signed myself in, and told the attending doctor that he had two choices: give me pills to help me sleep or hit me over the head with a hammer. He gave me the pills. They were tricyclic antidepressants called Amitryptiline, and he had used them himself when he’d come back from Viet Nam in a state of traumatized exhaustion. After taking the first one, he’d slept for two straight days.

That sounded good to me. So I took the first tablet at 8:00 that night, and the next thing I knew, it was 6:00 the next morning. I had fallen asleep easily, I had slept through the night, and for the first time in my life, I felt happy to wake up and start the day. My heart was open, the birds were singing, and I was connected with everyone and everything. I felt, for lack of a better word, normal. At least, a lot more normal. Okay, a little more normal, but in a major way: I understood why other people got out of bed and looked forward to the day.

Fast Forward to the Present: Fighting Sleep
I’ve taken the same medication for over twenty years, and I no longer suffer from chronic insomnia and its associated physical and mental pain. The medication I take is non-addictive and non-narcotic. It allows me to get gradually tired and sleepy, like a, um, normal person. That’s the good news.

The bad news is that I now resist that effect of the medication. I resist going to sleep. Some people have a very good nighttime ritual, with a routine bedtime and everything. Some people can’t wait to get under the covers. Not me.

I’m okay until about 10:00 at night. I’ve generally had a good day. I’ve worked out, eaten healthy food, drunk plenty of water, spent time with my family, gone out to work, and immersed myself in writing or singing or art work. I’ve taken very good care of myself. Then 10:00 pm comes, and I stumble off the path. Consciously and willfully.

It starts with turning on the TV and watching some detective show, like Law and Order or CSI:NY. While I’m watching the show, I start getting hungry. At least, that’s what I tell myself. But I’m not really hungry. It’s more like my head saying, “Enough with the healthy food. Enough with the exercise. Enough with taking care of yourself. Let loose. Eat just to feel the food in your mouth. Eat whatever you want. In fact, bring up a spoon and a bowl, and eat in front of the TV, so you can feel worse and worse about the poor dead people on the show, and you can eat more and more to feel better. Won’t that be fun?”

That’s how it starts. If I’m very lucky, I can extricate myself from the TV by 11:00. You’d think by that point I’d be ready to call it a day, but you would be wrong. I come downstairs, and then I begin this strange, repetitive, non-functional routine (ever heard of those?). It consists of first going to the pantry and eating, in succession, some spoonfuls of almond butter (hmm, smooth and crunchy and healthy), some spoonfuls of tahini (hmmm, smooth and smooth and healthy), and some spoonfuls of granola (yum, refined sugar and crunchy stuff, too). Then it’s time to check the freezer, where I eat, in succession, spoonfuls of each kind of soy ice cream, spoonfuls of any other kind of ice cream, and then some chocolate. If there happen to be any large chunky things in the ice cream, like pieces of Snickers bars or cookie dough, all the better. I can begin excavating.

By this point, it’s about 11:30, and I’m almost literally stumbling around because I’m so tired. But I am determined to stay awake. So I go through the whole routine again, telling myself that I’ll just eat one more thing, and then that will be enough. It never is, of course. I finally have to close the freezer door and admit defeat. Whatever it was that I was searching for in the kitchen simply isn’t there. I could have avoided the entire last hour and a half and just gone to sleep.

But I never do. I’m like a kid again, afraid to go to sleep, afraid to let go of the day, afraid to lose consciousness.

Up to now, this problem hasn’t felt insurmountable. Lately, though, as I get more in tune with how the Asperger’s affects me, this strange late-night TV-and-food ritual has begun to make me feel literally sick. I go to bed feeling congested and sick to my stomach, and I wake up sick to my stomach and not wanting to eat or drink a thing.

I’m not sure how to work out of this pattern. I’m beginning to see its cause, however. Going to sleep means that I have to put in my earplugs, close my eyes, and stop ordering my world. I have to stop tracking and translating all the visual and auditory chaos I work so hard to keep in order.

How do I stop working so hard? How do I turn off the hypervigilance, the need to scan my environment and notice all its details? It feels like it hurts to stop. And I’m afraid. What will happen to the world when I sleep? What will happen to me? Will the chaos swallow me up? Will I awaken to a world that is completely overwhelming? Will I be able to put it back together?

So I use food and the TV to zone out while staying awake. I’m not working quite so hard. After all, the TV is creating its own order, and the food is just sitting there, waiting to be eaten. But I’m still vigilant. I’m still working. And ultimately, I have to go to sleep, and it never gets any easier.

There must be a better way.

© 2009 by Rachel Cohen-Rottenberg

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