Category Archives: chronic insomnia

Still Not Sleeping

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I thought it was time for an update on my struggle to fix the fact that I can’t/don’t fall asleep until 4 or 5 am.  After that, it’s a restles sleep until 1 or 2 pm, unless I have to drag myself out of bed for an appointment — which is what I had to do on Monday to drive to Boston for an iron infusion.  My daughter and grandson drove me.  I slept in the car back and forth.

Why an iron infusion?  Well, this whole effort has been an education.

For example, the sleep clinics around her are just really “sleep apnea” clinics.  That’s all they do.  They do not deal with any circadian rhythm disorders, which is what I have — which is why I am going to the Sleep Clinic at Beth Israel Deaconess Medical Center in Boston.

The first thing they had me do is take an at-home melatonin saliva test over several hours during the day.  Melatonin levels are supposed to peak between 2 and 4 AM.  My saliva test shows that mine peaks at 3 to 4 PM. Totally upside down. That’s going to be hard to change.  I will be taking a 24 hour melatonin saliva test next week to get an even better profile.  What most folks who take melatonin supplements don’t realize is that you need to take the supplement in relation to when your melatonin levels peak naturally, and there’s no way to know that without testing for it. If your melatonin levels are on the usual schedule, you should take the supplement two hours before bedtime.

The next thing they had me do was go to their infusion center for the iron infusion, because (who knew) ferritin iron levels affect sleep.

They also are insisting that, based on the two sleep studies I had done locally over the past several years, I have apnea and need to get a bipap machine.  I was trying to avoid that, but I’m going to do whatever they say.  They obviously are taking my disorder seriously and are approaching it from all angles.

One of the disturbing side effects of the sleep disorder is a worsening of my reflux because I don’t eat meals at normal mealtimes.  Often, when I finally get up, it’s almost dinner time, and, since my daughter cooks, I wind up eating dinner when my stomach really should be getting breakfast.

Just to add injury to insult, my severely arthritic knees are slowing me down, so I just finished getting a series of hyaluronic acid injections in both knees.  I am getting around much better now, but the relief will not last forever.  I just want to be able to do some gardening, once the weather stabilizes.

My focus on fixing my sleep has pretty much taken over my life; I’m too tired to deal with much more than putting one foot in front of the other,  I have not been able to lift myself from the depression that is worsened by my sleep disorder.  Even the meds aren’t helping.

So, I have signed up to take a three week Ketamine Therapy program.  More on that to come.

It’s Not Insomnia, It’s DSPS

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I don’t have insomnia, I have Delayed Sleep Phase Syndrome.

Over the past decade, I consulted with various sleep specialists, none of whom ever mentioned DSPS as a diagnosis. I finally had to diagnose myself. All of them told me that I, indeed, had a sleep disorder and provided various suggestions, all of which I tried and documented here. The last sleep study I endured, several months ago, required two Ambien to even get me to sleep on their schedule. Then they woke me up after 4 hours (5 am) because I had to leave, and I was barely able to walk out of the lab and find a place to sit and wait for my daughter to pick me up. I have found that few doctors do the investigations necessary to actually find an accurate diagnosis. It has become cookie-cutter medicine. One size fits most.

Three months ago, I had a serious emotional meltdown, which prompted me to find someone to prescribe more effective anti-depressants, since there would be days I would only get out of bed to eat and go to the bathroom. Struggling to change my circadian rhythm — and failing over and over — finally sent me on an internet search to see if my 3 or 4 am to noon or later sleep schedule was something others were experiencing. And they are. Many. All of the world. Almost all just learned to live with it because nothing worked when they tried to change it. One woman who lived on the east coast took a job on the west coast because she figured that would put her bedtime at midnight, and she could live with that. But it didn’t take long for her body to relapse back to a 3 am bedtime, even on the west coast.

This household shuts down around 11 pm each night. That leaves me with a good four hours to find something to do that won’t wake them up. It’s so easy to just sit, watch tv or read, and eat. I wish I could use that time to write poetry.

Anti-depressants, at the potency at which I am now consuming them, dull the sensibilities that I need to be inspired to create poetry. Even my prose becomes drab and spiritless. But now that I have a diagnosis and an actual official name for what I am experiencing, I will try to ease off some of what I began taking to climb out of the Major Depressive Disorder that I fell into because of all of my failed efforts to change my circadian rhythm.

What I wonder is, why now, since most folks with DSPS are adolescents or young adults. I think there’s a connection to the 5 year trauma I lived through taking care of my increasingly demented mother while dealing with the constant harassment and abuse heaped upon me by my brother. During that time I had no set sleep schedule and often had to resort to sleeping pills to get any rest at all. While enduring my recent meltdown, I realized that I really do have PTSD as a result. Knowing is always better than not knowing.

I’m back writing on this blog to fill up some of that time until 3 or 4 am, when my sleep switch activates. That’s really what it feels like. While I feel relaxed and tired during those wee morning hours, there comes a time when I simply fall asleep, as though a switch is flicked. There is nothing I can do to make that happen. When my brain is ready, it shuts off. And then I sleep deeply for 8 or 9 hours and wake up rested.

So, this is my life now, at age 81. It could be worse, and I try to be grateful that I can still see and hear (with help) and drive (but not at night) and I don’t have any serious medical conditions. I can live with that.

“to sleep, perchance to dream”

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Yes, that’s from Shakespeare.

Boy, am I doing a lot of sleeping and dreaming. As a matter of fact, my dreams are a hell of a lot more engaging than my life these days. It gets so I don’t want to get out of bed, because if I stay there and fall back to sleep, I will have more adventurous dreams that are more interesting than any of my daily doings.

My dream world has very specific landscapes that include a section that is some odd representation of the campus where I went to college; a distorted version of the part of the city where I worked for 20 years; a kind of Catskill Mountain vacation hotel where I once attended ballroom dance weekends; and a weird version of an apartment complex where I used to live. I am always trying to get somewhere among those places, but it’s usually a matter of “you can’t there from here”. On those excursions, however, I might meet up with friends, go dancing, play with cats, and come up with a good first line for a poem. But then I wake up, and it’s all gone where dreams go.

No matter how hard I try I can’t reclaim a normal sleep schedule. I often don’t fall asleep until early morning hours, and then I sleep until afternoon. My sleep got messed up more than a decade ago when I was taking care of my demented mother. A search of this blog for “caregiving” or “dementia” will unearth full details.

I have tried to get control of my insomnia (search “insomnia” if you are curious). Medical Marijuana worksto get me to fall asleep, but it is awfully expensive because it takes a double dose to have any effect on me.

There actually have been more than a couple of times when I didn’t get out of bed for more than 24 hours. To be honest, I there are times that I would just as soon not wake up. I kind of identify with a 1999 episode of Ally McBeal, in which “Ally’s favorite teacher from high school is dying, but she has a wonderful dream life which she would like to remain in. Ally decides to get a court order to force the hospital to put her into a coma.”

In my dreams, I have relationships, friends, hugs, interactions, adventures — kind of the opposite of life with Covid-19. (I do live with family, but that’s not the same as hanging out with peers.)

On the Late Show last night, Bill Gates suggested that it might be close to a couple of years before we can settle into some kind of normalcy. How are we all going to keep from going off the deep end before then? Will I even live long enough to see a “new normal.”

In the meanwhile, lacking motivation, energy, and inspiration, I continue to avoid my pile of half-done creative projects that are wasting away in the corner where I piled them months ago. And, also in the meanwhile, I have tracked down a former therapist and have started, again, trying to find my muse, looking for some fuse that will propel me out of this mindless funk.

Dream Addiction

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If I have strong enough marijuana to ingest, I can sleep, but I still don’t fall asleep until 3 a.m. If that stops working for a while, I revert to taking night time cold medicine — double dose. (I can’t drink alcohol because of my Reflux disease, and I can’t get a sleeping pill prescription because of my age.) My brain seems to ignore the effects of sedatives unless they are pretty potent. It makes me wonder if some synapses in my brain have become immune to sedatives.

When I do sleep, I dream — elaborate scenarios, filled with people I know and people I don’t. One of the people I don’t know is a guy. I never see his face, but he is obviously someone I am close to, emotionally and physically. He hugs me, holds me, whispers in my ear. Obviously, I am compensating for these things I no longer have.

I have been missing that kind of interaction for more than a couple of decades. That is how long I have been without a relationship with a man — more because of situation rather than choice. My situation has also taken me away from close women friends that I have had for more than 40 years. And Covid-19 makes it very hard to be optimistic..

So I have a much more enjoyable dream life than my awake life. And so I sleep. A lot. Yes, it’s an escape during these depressing times, and yes, I take an anti-depressant. There are days I sleep from 3 or 4 a.m. until my daughter wakes me for dinner the next day. I need to find a prescribing psychiatrist to determine if I should be taking something else and to help me figure out the rest.

For now, I am addicted to sleep and the dreams that come.

Years ago, I saw an episode of “Ally McBeal” that featured an old woman who is dying in a hospital and was put in an induced coma. When they woke her up, she insisted to be put back in the coma, where she lived a whole other life as a happy, young wife and mother. She was much happier in the coma, and she was dying anyway. I get it. I’d rather be sleeping and dreaming rather than experience the dreariness of what my daily personal life has become.

I used to be able to amuse and entertain myself creating stuff — sweaters, upcycled t-shirts, learning to paint and draw, cooking….. Not these days. I used to dance for exercise. Not any more with my escalating arthritis and torn rotator cuff that will never really heal. I used to go for short late afternoon walks. Instead, I now sleep.

Maybe the results of the coming election will lift some of my depression. But not all of it. I have to figure out how to get rid of the rest of it. I’m assuming the psychiatrist will help.

But in the meanwhile, my life will be what it is, and my dreams will be my escape.

It’s so frustrating that my sleep issue is one that so many elders experience. We create vehicles that explore outer space, but no one has figured out how to solve the problem of elder insomnia (which must be associated with how the brain ages). And neither has anyone figured out how to make a removable partial dental bridge that actually fits and works.

09/18/2020, 7:45 PM

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I never worried about getting old. I figured that I would deal with it when it happened. Well, it happened, and I’m not dealing with it very well these days. Objects seem to fly out of my grasp. I’m constantly misplacing things. If I get down, I can’t get up without help. I trip when there’s nothing there to trip on. The technology that I used to use without a second thought now requires too much figuring out. It doesn’t help that, back in March, I accidentally sent my removable partial denture down the garbage disposal, making it unusable, and it’s taking forever to get a new one. I lose track of my finances and find myself owing more than I thought. My crazy sleep pattern doesn’t help, of course.

It wouldn’t have helped if I had worried about getting old before it happened. There’s no way to have known what it was going to mean for me. Everyone is different. My mother lived until she was 94, but her last 10 years were lost in dementia.

I wonder who those old people are who go out dancing, marathon running, paddling canoes. Of course, I’m assuming the Pandemic has put the kibosh on all of that now — unless they are the deniers. Good luck to them, I say.

I finally let my hair go gray more than a decade ago, and I was very happy with it. Only now, my hair is thinning. Not so happy, now.

The other day I took a magnifying mirror outside so I could see my eyebrows, which are also thinning – except for the long wiry white ones, which I plucked out. I suppose I could get one of those eyebrow stencils, that so many of the folks on tv seems to be using, but I think they look horrible. Not many choices here for me.

Over on Ronni Bennett’s blog, she has been chronicling what it’s like to get older. Exactly my age, she is now chronicling how she is dealing with the pancreatic cancer that is literally killing her. She is heroic in dealing with her situation. I wonder how I would handle it.

Don’t get me wrong. I am grateful that I can still drive, blog, see the tv, chat on the phone with the one close friend I’ve been able to make in the ten years since I’ve moved here (more on that another time). Grateful for the support of my family, especially during this time of quarantine.

The one thing I certainly never expected to happen when I got old is the Great Orange Turd, who has made all of our lives a nightmare. And I just heard that Ruth Bader Ginsberg has died. Fuck it all.

9/18/2020, 1 AM

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I still have insomnia. Weed works, but it’s expensive. The only solution is to grow my own, and while I’m waiting, I bought some CBN – also expensive, but it’s the stuff in weed that makes you sleepy (supposedly). I guess that I will find out tonight. I started using medical marijuana four years ago, and I blogged about it then.

I usually don’t fall asleep until after 2 AM, so I waste time scrolling through FaceBook or stream something unredeemable on TV.

I am getting fed up with FB for all kinds of reasons, but what just annoys me is that folks are starting to write awfully long posts. GET A BLOG! I tell them. I find I never read through long FB posts. I often plan to after the first paragraph catches my interest, but when I go back and try to find the post again — FB has sent it somewhere out of my reach. So, fuck it. I’m about ready to sign off Herr Zuckerberg’s monster for good, even though I like the cats.

>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

Dear Diary: I’m Adrift in Chaos

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All around me. All around my insides as well as my outsides.

I am used to being able to have some control over my life of 80 yeas. I get it that Covid 19 is in the driver’s seat right now. One of my “talents” has always been that I am able to find some pieces of myself to hang onto even in the midst of various forms of chaos; but I can’t seem to find any of those pieces.

As grateful as I am for the support and protection of my family, that all comes at a cost. And the cost is my sense of self at a time when very little is making sense at all. My reality has succumbed to the total chaos that rages all around me.

I am bummed that I don’t seem to be able to handle any of it. Mindfulness? Meditation? Forget it. Chaos rules my mind. I just want to sleep until I can wake to a better reality. And so I sleep. A lot.

I used to be able to gird my loins and launch myself into some creative craft project that would, at least, surround me with a brain buffer. I used to be able to take that chaos and re-purpose it into pretty decent poetry.

Is it so terribly hard now because I am old? Because I have used up my finite resources? I feel totally depleted. I don’t know who I am or why I am.

My late-diagnosed adult autistic son writes about trying to understand who he is in the context of his undiagnosed, fragmented journey.

My late once-husband, who tended to be single-minded, once told me that he wonders what is at my “core”; he saw me like an onion. The layers get pealed back and there’s nothing at the core. And this is how I saw him.

.House cactus.
You stand firm and fundamental
in your solitary nesting place
apart from your leafing, budding sill-mates.
You remind me of someone I know

So, I am an onion. Each layer is a period of my life that I created and lived and survived. My layers are what I am. Does that mean I have nothing at the core? Nothing solid, impermeable? Does it matter?

Maybe it does, if I find myself adrift in a chaos that is being absorbed by whatever is left of who I am. Do I even have another layer in me, or is that all there is?

>

Dear Diary: Of Course

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Of course, I’m late again. Of course I’m still trying to get my crazy sleep schedule under control. Of course I’m eating too much chocolate. Of course I’m still experimenting with medical marijuana, which is the only thing that can get me to fall asleep. Last night, I put some alcohol tincture in a glass with V8 juice. It tastes like a Bloody Mary.

It still took at least an hour for me to fall asleep, so while I was lying there, I listened to one of my playlists on Spotify. It includes most of the songs I liked over the past 50 years. As I listened, I realized that I could put the songs in an order that reflected where I was in my life at the time each song was popular. I might try to do that at some point.

Listening to each song brought back very specific feelings, some of which I wish I could choose to forget. I have always tended to make choices based on what I wanted or needed. It’s not that I didn’t consider the wants and needs of others involved; but, ultimately I did what I wanted.

When I lie in bed at night, waiting for the THC to kick in, I let each song take me back, like the images in a photo album, to past places. When my mind reviews what my life was like each time, I feel regret. Regret about how little I understood myself and what little wisdom I had. Regret that I never learned how to “plan” — financially, physically, inter-personally. Regret that many of my choices negatively affected other people. Regret that I must have been very emotionally immature.

Throughout these 80 years I never set long-term goals, but rather I took advantage of opportunities (which worked out fine as far as my various careers, but not so fine in terms of my various relationships.)

It’s obvious to me, now, that the men with whom I chose to have a relationship were chosen because I knew they would not be around long. (The exception was my late ex-husband, but that’s a whole other story.) I knew, instinctively, how to get them to leave when I was ready to move on. In the meanwhile, each contributed, in his own way, to something I wanted or needed in my life. (Perhaps I also knew, instinctively, that there was no one man who could give me all I thought I needed; and now I see that I didn’t particularly care what they needed as well.)

From the perspective of decades, I am finally realizing several things: I am a bit of a narcissist; I am good at manipulating situations and people; I need people more than they need me; I like beginnings and endings and don’t do well keeping things going in the middle; I never knew who I really was. I’m not sure I even do now.

The Plague of Elders

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I don’t mean that we Elders are the plague; I mean an awful lot of us Elders are afflicted with the same “plague.” It’s called There are lots of kinds of insomnia and there’s no cure for any of them.   There are a host of “remedies”, however, and I have tried all of them (see the end of this post), to no avail.  So had the author of a book I read several years ago, Insomniac, by Gayle Greene.  The book was published in 2008, and you would think there would have been some progress made since then with a treatment that works.  I contacted Greene last year to see if she ever found a way rid herself of insomnia  Basically, she said no; all she could do is schedule her life around it when she can, take sleep meds when she has no other choice, and keep looking for a solution.

Here’s a review from The Journal of Clinical Sleep Medicine:   Insomniac, by Gayle Greene, provides an interesting perspective and offers support to those with treatment resistant insomnia. It also offers a fresh perspective to readers who are also medical providers. The author defines insomnia in a way that sets the stage for the discussions that follow, as “Insomnia is when you can’t get the sleep you need to feel good, for no reason other than that you can’t.” By the end of the third chapter, the reader has a very clear understanding of the problems faced by insomniacs.

Greene’s book is both a memoir and a research paper. If you don’t read the book, read the whole review.  Here are some of the facts she shares in her book

⇒ A third of the American population suffers from insomnia enough to complain about it; in people over 65, estimates are as high as 60 percent.

⇒  Sleep has little part in medical curricula today, when doctors get an average of one or two hours’ instruction in sleep and sleep disorders.  The patient with a chronic complaint of insomnia will usually be referred to a psychiatrist.

⇒  With all due respect, this is so ass-backwards, Greene states. The reason I want more sleep is so that I won’t feel depressed.  I need sleep not to avoid my life, but so that I can live it.

⇒  This is what she learned from interviewing a range of sleep researchers and experts (all given citations in her book).  We do not know….the nature of the basic neural mechanisms underlying primary insomnia.  Nor do we know the identity of specific neurotransmitters that might be involved, or even whether specific neurotransmitter systems are involved.  The genetics of the disorder are also not known.

⇒ The behavioral model (change your attitude, change your ways) has had, perhaps the unfortunate consequence of discouraging research into the neurobiology of the disorder.

⇒ Insomnia is a subjective state..  There’s no blood test that it shows up on, no biopsy or x-ray that picks it up, and it doesn’t even show up on the EEG….. How much easier it is to tell us, as many clinics do, that we have “sleep disordered breathing,” or apnea.

⇒  Exercise helps some people, but not all. “In order to make a difference, it has to intensive, enough to raise the core temperature (inside body temperature) to two degrees Fahrenheit for about twenty minutes, which happens with twenty to thirty minutes of aerobic exercise….. Since only people who are in shape can sustain vigorous exercise for twenty minutes or more, they’re the ones whose sleep is likely to be improved.

⇒  Some billionaire who has a relative with terrible trouble sleeping…should endow a private foundation. There should be patient advocacy groups for insomnia, but they’ll need to stay independent of the pharmaceutical companies.

I wish every sleep doctor would read Greene’s book, which explores the various and complex reasons why folks have insomnia, including the gut-brain connections and the individual ways that insomnia manifests itself.  For example, I have the kind that prevents me from even falling asleep, from having my brain trigger what Greene calls the “sleep switch.”  I get relaxed and tired, but that last step evades me.

At the end of this month, I will have a sleep study.  I am going to give the doctors there a copy of this post.

Of all of the remedies I have tried for my insomnia,  I have to admit that I like the effect of medical marijuana (and I like the buzz I get before I fall asleep).  But trial and error has proven that I need sometimes 4 times the recommended dose to have any effect on my sleep.  That would cost me several hundred dollars a month, and I can’t afford that.  CBD helps with my daytime energy and mood, but has done nothing for my sleep issues.  And it’s not cheap, either.

I even bought some EMF fabric shield to cover my electronics at night. At my age (80), doctors will not give me prescription sleep meds.  Hell, I’m 80.  What’s it going to do, kill me?  Not sleeping is killing me and is depriving me of having any kind of satisfying life.

I no order of chronology or non-effectiveness, here is a list of what I have tried.
  Soto Bio-tuner; hypnosis; environmental changes; behavioral modification; yoga breathing; every pain and sleep-associated OTC on the market; a range of herbal, amino acids, and other supplements (sometimes combined); oxycodone (I’m running out of my old dental RX; I only take it when I can’t take the sleeplessness any more); binaural beats; relaxation, meditation, and music tapes; hot showers; massage (when I can afford it); decades of depression meds; tapping……..

Badly arthritic knees and a troublesome torn rotator cuff preclude me from doing the kinds of exercises that might tire me out enough to crash into sleep.

“Set your alarm and make sure you get up every morning even if you are tired,” they tell me.  Yeah, sure.  After finally falling asleep at 3 a.m. or so every night, I’m not about to get up at 9.  Maybe 11.  Sometimes noon or later.  When I finally sleep, I often sleep deeply and have great dreams.  But I miss half of the day.

There are still no advocacy groups for and by insomniacs to help spread the word and urge researcher and doctors to keep digging to discover the biological insomnia triggers and causes. There are plenty of support/forums for patients, but all those do is give us more places to complain.