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 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.

6 thoughts on “Still Not Sleeping

  1. What happened to that appointment with that specialized doctor? Hasn’t happened yet? Didn’t work? Fill us in!

    • When is a good time next week to Zoom and I’ll catch you up. This post pretty much covers what’s going on with the Boston Sleep Clinic.

  2. Appreciate the update and do hope this all gets resolved for you soon. It took me a few months to get my sleep issues squared around with false stops and starts. I tend to think what I did was reset my sleep rhythms which seemed to be reversed. My occasional use of my computer before I went to bed probably complicated the matter, compromising my efforts to readjust my rhythms. I’ve been using blue light filtering glasses if using digital devices like my computer for at least an hour or more before I go to bed. The blue light, I read, is said to interfere with our system initiating sleep. FWIW, keep in mind that everyone is different and I’m not suggesting what worked for me would work for you or anyone else.

    • I have gotten blue light glasses. Please tell me what else you did to reset your sleep rhythm. I know it takes effort. I am trying to rev myself up to do whatever it takes.

      • FWIW, keep in mind that everyone is different and I’m not suggesting what is working for me would work for you or anyone else. Note: I was not rigid in following my general self-prescribed guidelines. This is broad description; process was erratic and I sometimes doubted it was working, especially in the beginning.

        I set a regular bedtime, often 10 or 11 p.m.
        This was early for me because I tend to be a night owl staying
        up into wee morning hours.
        Sleep could be in 2 hr blocks – periods of being awake. (trips
        to bathroom)
        First 4-6 weeks or so could have 1-2 nights and no sleep at
        all; gradually ceased.

        (I don’t fret, stew, worry lying in bed awake for hours when I can’t sleep. A few times I got up, went to living room for a while, other times not.)

        I didn’t use computer for at least an hour before bed.
        I have recently started using blue light glasses if I use digital
        closer before going to bed.

        I made certain to have regular meals with timing based on when I arose in day trying to get in 6-8 hours sleep.
        (I have prepared meals — frozen/fresh/various sources I
        microwave. I live alone, do not do my own meal preparation f
        for reasons I won’t go into and don’t have anyone preparing
        meals for me.)

        Let me know if you have any questions. Hope you get resolved. Sounds like you have some issues I’ not aware of my having. Probably you’re best following what those medical people are recommending.

  3. Pingback: Sleep still won’t come. | Kalilily Time

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