Still Not Sleeping

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 the 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 arthitic 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.

The Power of Persistence

I haven’t posted here for a while because of my struggle witih all of the problems caused by my Delayed Sleep Phase Disorder — including not being able to find any Sleep Clinics in my area that know how to deal with this problem.

Finally, I did a search for someone, anywhere, who is an expert in cicrcadian rhtythm disorders.  I found one a Harvard and emailed him.  Not only did he respond quickly, but he immediately referred me to his colleague at the Sleep Clinic at Beth Israel Deaconess Hospital in Boston, and also gave me some advice about when I should be taking my medications — which depends on my specific circadian rhythm.

A telehealth visit with the Clinic was quicky scheduled, and, during that appointment, I found out that there are saliva tests I can take that provide data about my specific circadian rhythm.  I was also told to get a test for my iron level, because I might need to go and get an iron infusion. I never knew that iron levels can affect sleep.

I received the test kit in the mail the other day.  The process of gathering up the saliva is complex, and the results need to be immediately frozen and shipped out with an ice pack.  The cost could be as much as $350 because Medicare does not like to cover it, but if I can fix this debilitating disorder it will be worth it.

I might have to go to the Boston hospital at some point, but my daughter said she will drive me.

Meanwhile, I went to my Primary Care to get my blood pressure checked, because the wrist blood pressure machine that I have was giving very high readings.  At one point, the machine told me that my blood pressure was too high to even register.  When the nurse took my blood pressure, it was higher than it should be, but he suggested that I try a few things before I am presdribed any meds.  I admitted that salt is a big thing with me, and I had been binging on bags of Cheetos, which are even saltier that potato chips.  So I am investigating other ways to flavor food, and I have severely curtailed my use of salt.  But the readings I am getting on my home machine are still high. Blood pressure affects sleep, so I have to take this seriously.

I am still tired all of the time, despite sometimes sleeping for 10 hours. I am not a happy camper, but I will follow through with the Clinic’s suggestions and see where I wind up.

Because my daughter is strugglng with A-Fib and asthma, I limit my excursions out into the pandemicked world to avoid bringing anything home. When I do go out, masked and careful, it’s to run errands, and I come home exhaused.  Mental?  Physical?  All of the above.

No Help in Sight

I am contacting neurologists throughout my region to try to get help for my Delayed Sleep Phase Disorder, but I have had no success, despite the fact that DSPD is a neurological disorder.  They will treat insomnia and dementia.  But not the neurological problem that I have.  And it is not that uncommon.  One out of 600 adults suffers from some  form of Circadian Rhythm disorder.

The other day, I came home from CVS and left my car running in the driveway.  I leave doors ajar and faucets running.  My cognitive functions are rapidly deteriorating.  I no longer know when to take my meds, since day and night, for me, are scrambled.

I have never been closer to a mental breakdown.  I almost welcome it if I could get drugged into oblivion.

 

 

It’s All Going to Hell

It has been  three months since my last post.  I have spent these months searching for medical help with my Delayed Sleep Phase Disorder. None of the so-called “sleep” doctors I’ve been to ever mentioned the possibility of DSPD.   In desperation, I just sent an email out to a neuropsychologist because the stress has affected my usually-easy-going temperament, and I don’t even like myself any more.

Also, during these few months, the family brought a rescue dog home.  He was smart, sweet, and cute, but he would not stop biting when playing.  He went back to the rescue.  So, last week, they brought home a cute, sweet, gentle rescue kitten, who is still sequestered in the upstairs bedrooms because their current prissy cat refuses to have any of it.

My plans, after the holidays, is to go the shelter and get a senior cat who just wants to snuggle. I need the companionship.  I need the touching.

I need to find a way out of his personal sleep hell. It has affected my digestion, because when I eat depends on when I sleep.  When should I take my meds?  I often don’t even know what day it is.  It’s making me crazy.

ADDENDUM:  My daughter just told me that when I got home from the store yesterday, I left my car running in the driveway.  It’s a good thing my grandson noticed the car’s lights were on.  I am definitely losing it, fast.

Ooops, I did it again.

With my DSPD, I tend to fall asleep between 3 am and 6 am. Two nights ago, however, I was never able to fall asleep at all. So, I got out of bed at 9 am, took a shower, and sat down at my computer and ordered some Sleepy Time Cheeba Chews from my local medical marijuana dispensary. There are 20 chews for $30. Each piece is a 5.43 mg of a combination of THC and CBN.

I haven’t had any edibles for a while because they are so expensive. At least they are for me. 5 mg is considered one dose. It usually takes me 20 mg to have any effect.

Last night, I didn’t want to take any chances. I had to fall asleep. So I took 30 mg. around 11:30 pm. Got me totally stoned, so that all I could is lie in bed and space out. And I didn’t fall asleep anyway until 3 am.

I’ve done that before, took too much and just had to ride it out. It’s not a bad sensation, but it’s not really what I’m trying to do. I’m trying to fall asleep.

It is now after midnight, so I’ll try taking 3 chewies first, and it that’s not enough, take another one. They take from 1/2 to 1 hour to kick in. In the meanwhile, I’ll get ready for bed and work on a crochet project if my arthritic thumbs can take it. Maybe watch some tv. Or read. When I start getting sleepy, I’ll go to bed.

It’s all trial and error. No one knows how the cannabinols will affect an individual. But hey, I’m a risk taker, right?

09/18/2020, 7:45 PM

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.

Dear Diary: Late, Again

Here I am, already having missed a day venting my madness. This being late seems to be a trait I developed in my very late years. I used to arrive at my destinations at least 10 minutes early. None of that matters much any more anyway — and not because of the Coronovirus Pandemic, which has caused a lock-down and which gives folks too much time on their hands.

Today I’m mad about “Time.” It really seem to go faster as you get older. It takes me longer to do everything, including figuring out new things on this blog platform. You might have to bear with me for a while as I continue to climb the learning curve.

When I moved in here with my family, my grandson was 5 years old. Now, at age 17, he has completed his high school education as a home schooler. Twelve years, in the blink of an eye.

Today, I’m mad at Time, which can take me at any time. And I can’t turn it back to fix what I screwed up.

I will try to be on time tomorrow.

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.

The Eyes Have It

I crave the cosmic and the common,
refusing to sever half my soul.
I choose to grow in all directions:
to grow both fruit and edible root;
to glory in the ground and desire the sky;
to stretch roots across acres
and reach for the bedrock;
to rejoice in the changing shapes of the seasons.
I eschew the single minded vision.
I am all Eye.

I wrote this when I was in my mid-thirties, when life was an adventure. At almost 80, my life now is a different kind of adventure.

These are my eyes as of last week,  Something going on with with the right eye.  The eyes don’t have it any more.

And it’s more than the eyes.  The WordPress I used more than a decade ago is a different animal.  I’m on a very slow learning curve.  But they say that learning new things is good for the brain.  Maybe so, but it’s not always good for the stress..

As I get older, I need things to be more simple. Only nothing is simple these days.  Even though the “Ayes” had it in Washington and voted to impeach the Big Orange Turd, it’s still complicated, and it’s not going to be easy.

The Gaming Life

Everyone in my family plays computer/video games except me. For the most part, it’s a generational thing, and I’ve posted before about how I feel about it.

My 15 year old grandson plays with teens he’s met in real life and online, and their goal is to get a team together to play in a tournament. ESports. Yes,it’s a thing.

According to Marcus Clarke of computerplanet.co.uk, gaming is turning into a serious profession. eSports, video gaming competitions, are expected to become a billion-dollar industry by the year 2018, with millions of people visiting eSports events in person, and even more people streaming them online.

Recently, the International Olympic Committee (IOC) has stated that professional gamers spend as much time practicing as professional athletes spend in training. They also said that “the Summit agreed that ‘eSports’ are showing strong growth, especially within the youth demographic across different countries, and can provide a platform for engagement with the Olympic Movement.” Although for true fans eSports do not need to be compared with other sports to be considered valuable, it is certainly positive to see the world finally acknowledging the effort we put into video gaming.

 

I know that there’s no turning back the clock on computer games, and making them a way to accumulate big bucks only solidifies their place in our culture.

As I notice the time that my grandson plays gaming, however, I’m concerned about the sedentary lifestyle that serious gaming ensures. So, in our family, folks, including my grandson, wear a “Fitbit” type bracelet set to remind them to get up and move every so often.

It’s a strange new world that necessitates being reminded that the body needs a life as well as the brain. I can’t help remember an old Star Trek episode with aliens that had big brains and frail bodies.

It’s going to be interesting to watch my grandson and his teammates try to enter the world of eSports. He’s well aware that they will probably wipe out during the very first round, but a least there will be no broken bones or concussions. As with kids playing any sport, parents need to be aware and involved to make sure that their kids are playing it safely.

As for adults — hell, who wouldn’t want a chance to win over 2 million dollars sitting at a computer playing a game. They just better invest some of that in a Fitbit.