It’s Not Insomnia, It’s DSPS

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.

The Plague of Elders

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.