rls-diagnosisIt has been awhile since I posted (over a year) and I apologize about that. I have had a few posts ready to go, but for varying reasons didn’t post them. That got me out of the habit which I am now trying to get back into.

One of the reasons I am trying to return to blogging is having discovered an online support group for RLS. I won’t be sharing the name and location due to the privacy of the group, but already in short order I have discovered I am not alone. In a future blog, I’ll chat about how I sometimes feel by myself with this diagnosis and symptoms, but today I want to focus on something members of that group found interesting. How I have shifted my sleep in the last year.

Part of my diagnosis with RLS and PLMD includes Circadian rhythm sleep disorder (CRSD). It is a significant player in all of this. There are lots of reasons I probably developed CRSD. I could go through the list, but that would make for a very long read. What I am certainly not sure of is when it might have developed.

Note: found an interesting side article from Alaska Sleep Clinic: Six Circadian Rhythm Sleep Disorders that May Be Disrupting Your Sleep

My detox off my old RLS medications revealed the CRSD rather emphatically. While I was weening off and then completely drug free, my body was showing signs of not being ready to go to sleep until 3 or 4am. While I might have gotten up as early as 6 or 7 am during the detox phase, going through memories and other notes clearly showed my sleep clock then ran until 10 or 11am – even noon. It was surprisingly obvious.

But what do you do about it? I can’t simply just say I’m going to bed at midnight and my body adjusts immediately.

Working with my doc started one of the craziest behavior modification I had ever experienced. The goal was simple, shift my circadian rhythm. The process was anything but easy.

melatonin
Started taking 3mg of Melatonin, but now take 1 mg with my RLS medication.

Here were the basics:

  • I was to take 3mg of melatonin the same time I took my new RLS medications (around 4 or 5pm each day)
  • I was then to stay up until my body’s clock was set to go to sleep; 3 or 4 am – no exceptions
  • At midnight, I was to stop using my computer, smart phone, and any other devices I hold close to me (TV was okay; doctor says it is far enough away to not affect me)
  • I was then to wake up at 8am, no exceptions, and immediately put special blue light blocking glasses and wear them for a certain amount of time

There is a lot just on paper that looks daunting. Staying up until 3 or 4am and then waking at 8am?! Insanity. Let’s also not get into how bad these blue blocking glasses look!

The real trick with the glasses was the schedule. This was the secret to the entire thing. I would wear the glasses at first until 11:00am. Then after a week take them off at 10:30am. A week later, 10:00am. So on and so forth, until I brought the time down to the same time I was waking (not getting up, more on that later).

The brutal part was the clear lack of sleep I was forcing myself not to have. Granted, I have been operating much of my life on little or no sleep, but to do it on purpose seemed like self-imposed torture. While I had multiple alarms, including my wife and kids, to help me wake at 8am, it was very difficult to get out of bed and get moving. The back and forth my mornings had gone through in just six months was unbelievable. Before the detox and everything else, I would struggle to get up in the morning and would be exhausted (in hindsight, very understandable if my body didn’t want to get up until 11!). Then during the detox, I was getting up at 6 or 7 am due to the pain and discomfort and couldn’t go back to sleep. Now I was back to struggling to get up in the morning.

amber-glasses
Solar Shield Amber Sunglasses – reminded me of glasses my grandmother wore while dealing with cataracts

The other part, those glasses are hideous! One pair reminded me of my grandmother’s pair as she suffered from cataracts. And it didn’t matter if it was sunny or cloudy, I had to wear the glasses. I ended developing a strategy. If I had go out in the morning (like to drop my kids off at school), I put in my contacts and wore the yellow glasses (the ones factory workers tend to wear). If I could stay at home, I would leave my glasses on and wear the amber glasses instead. I also had one other rest bit. If I was working in my office (in the basement with no windows), I could take the glasses off when in the room.

 

yellow-glasses
Uvex Skyper Blue Light Blocking Glasses (Courtesy: Amazon)

My mornings got to the point of blindly reaching for my glasses until I had them on. Even having my son find them downstairs if I accidentally left them there the day before. It turns out, I could go without the glasses for a few minutes, but discovered that later. I was so paranoid about this not working and didn’t want to screw anything up.

 

A couple of other things I discovered:

  • 3mg of melatonin was WAY too much to take. Eventually it was lowered to 1mg and even to not taking any. I finally discovered 1mg was the right dosage and still take it to this day.
  • It can be a real challenge as time goes on to stick to the plan. Staying up until at least 3am was rough as this went further and further.
  • And staying off devices was a real challenge considering how much of some of my work I do late at night. I had to readjust a lot of things, but eventually got good at it. I still try and get off my devices to this day at midnight (and thinking about moving that time up).

It is a good thing I didn’t have a “traditional” job during this. I was a zombie most days. I could get things done during the afternoon and evening, but my mornings and nights were shot. It was on purpose as well. My doctor wanted me to be tired. He wanted to force my body to shift the clock.

sleep-temp-cycle
Graph courtesy of National Center on Sleep Disorders Research

Why the blue-blocking glasses? That’s where it gets a little complicated. It has to do with my body temperature, when I was waking, and how it affected my sleep schedule. I can’t even come close to describing this well, but did find this site that seems to explain it best. What I can say is that because I am waking shortly before or shortly after my body reaches its lowest temperature during the sleep cycle, my body wants to stay asleep longer. I need to get my sleep cycle further away from that dip in my body temperature as I understand it (there is also a REM component which anyone with RLS or PLMD will tell you is a wonderful thing to get into!).

All and all the idea was to force the shift of my sleep clock.

By the way, once the schedule reached a week of not putting on the glasses (about two months into it), the second part of the adjustment took place. Now I started shifting my bed time earlier and earlier. Just like with the glasses, I would now focus on going to bed at 3am (instead of when I was tired between 3 and 4am). After a week, shift it to 2:30. A week later 2:00. This once again continued until I got to somewhere between midnight and 1am. All the while, waking at 8am.

working-on-computer
Adjusting the sleep cycle also meant adjusting my late-night device and work habits.

But it wasn’t easy. This three-plus-month span took place during one of the busiest parts of my year. I had multiple trips, some to different time zones, during this period which caused all kinds of problems. Depending on how long I was in different time zones or what the nature of my trip was and thus when I was getting to bed and needing to get up threw wrinkles into everything. It was challenging to say the least. I also needed to be on top of my game, despite massive sleep deprivation.

Thus, I have not done this circadian sleep shift once. I have now done it at least three times. The second two were not as intense. My sleep clock certainly shifted after the first modification, so the second go around I could go to bed at 2am and take the glasses off at 11am. And the third time, go to bed around 1am and take the glasses off at 10am.

But it made a difference. I am far more capable of getting up at 8am than I have been in probably 15 or more years. I am far more sensitive with what is going on around me in the morning – waking to my kids either in bed or showing off their best sibling rivalry; something I slept through more times than not in the past. I am far more tired at midnight than I have been in 15 or more years. I have gone to bed BEFORE midnight a handful of occasions.

But I also “wobble.” One night I might crash at midnight and the next I might be up until 1:30. I might be able to wake at 8am one morning, but struggle to get out of bed until 9am the next. On some weekends, I will turn my alarms off and trust my body or my family to wake me – I tend to get up at 9am. That last part makes me laugh. I used to get so frustrated when I slept in until 11am or so on the weekend because I felt I lost a ton of time (and I still felt like crap). Now I am frustrated if I am getting out of bed shortly before 9am. My perspective has completely changed.

sleeping-on-couch
I will doze off on the couch watching TV far more often than I have in 15 years.

I also struggle with dozing off on the couch at any point in the day, especially at night before I am ready for bed. It can rejuvenate me after midnight when I need to go to sleep. It is a sign my body is tired and wants to go to bed, but I haven’t figured out if it is a consistent indication of an earlier bedtime as it doesn’t happen every night (though, I think I have tied it to my device usage at night).

But how has this affected my RLS? Not sure yet. The problem with RLS and sleep problems is they are a vicious circle. If one has a bad night’s sleep, it will feed into the RLS and symptoms and tend to make those symptoms worse. If one has RLS, not to mention an increase in the severity of their symptoms, that feeds into a bad night’s sleep. The circle is endless. Bad night’s sleep causes worse RLS symptoms which cause a worse night trying to sleep which causes even worse RLS, etc., etc., etc. It doesn’t stop.

The biggest key for all of this was to try and get my body and mind back into a “normal” life. Waking when everyone else is waking. Going to bed when everyone else goes to bed. Feeling like I am part of my family’s normal life and more.

I am nowhere close to solving this. And there is an understanding that parts of this will not be solved. I know I still have strong PLMD symptoms at night. I notice it when I am pulling my covers back on. My wife notices when she has had a rough night’s sleep it usually coincides with what I might call a bad night’s sleep for myself (obviously, I have a different set of standards). She also notices when for whatever reason she is awake and notices how much I am kicking.

But the work continues to make things better. After well over a year with my “new” doctor, weaning off my old RLS meds, starting new medication, and shifting my sleep clock, I will finally have a new sleep study done. It will be my third and possibly most revealing considering what has happened in the seven or so years since my last one. The sleep study will help treat the next phase of my sleep challenges which still include a more normal and less wobbly sleep schedule and reducing how much I am waking or stirring due to PLMD. It also will probably help me take the next step forward on my current medication. I am not completely comfortable during my days, but let’s be honest I am a far cry from 18 months ago which means by that standard I am as comfortable as a baby.

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