Friday, July 8, 2016

So your CPAP treatment isn't working?

I've gone through seven or eight sleep studies. I've lost count of exactly how many, but the last three at the same sleep lab, without my symptoms being fully improved. I would estimate that at the beginning they were about 20-30% better, but years later seemed to fail completely.

What I eventually discovered is that exercise actually made my sleep quality much worse. If this sounds like  you, it might, then it is possible we share an odd, and previously unreported condition. The only other two conditions which I've read that can cause this is Cushing's Syndrome and Chronic Fatigue.  However, sleep apnea that is not fully treated can mimic both of these, including elevated cortisol levels. So if you have noticed, or are able to determine if exercise is bad for you, then we may share a condition, which is treatable!

The problem in my case only was that I have two modes of sleeping. The lazy day, fully rested mode, and the "I've worked out" mode.

Why didn't the previous sleep studies help?

The previous sleep studies did find a partial solution.

I didn't notice the problem at the time, but looking back it seems that since I slept poorly after exercising I learned not to exercise, even a little. I stopped taking the stairs and always chose an elvator, had groceries and food delivered, anything I could do to avoid physical labor. That is, my symptoms conditioned me not to exercise, so I would go get a study done after a couple of days of being fully rested, and as a result my full symptoms did not occur. I only know this after-the-fact because of the use of a Jawbone UP (lasted 3 months, but did the job) which allowed me to discover exactly when I had good and bad days of sleep.


After using the Jawbone for several months looking for clues to my problem I was able to completely correlate exercise with poor sleep the next several nights. This is the exact opposite of what should happen for most people but for me was the wall I could not overcome.


Confounds

Moderate exercise (5,000 steps / day) would not cause this problem to occur immediately.  It would sneak up on me.  I needed it to be vigorous, or weight bearing to cause the symptoms to show up faster.

Another thing that seems to trigger this effect is calcium channel blocking medications, or medications which are related. These can be prescribed for a range of issues from depression to high blood pressure.  The good news is that if this is you then your sleep studies should show up without having to go through the exercise portion of this experiment. 

Further, the post-exercise crashes would last for days, sometimes even a week.


How can I tell if this fits me?

If you have a Jawbone, FitBit or ResMed S+ you may see your deep sleep very disturbed, or lots of wakings, despite the CPAP measuring otherwise low AHI numbers and tolerable leaks.

In the picture on the left I share an image from the Jawbone UP application showing my very worst night of sleep.  See how many different periods I have of deep and light sleep?  There should be about 8 of them.  Instead I have about 17.  Also notice the time I slept. Over 11 hours! That's because the sleep quality was so poor.

You should have big chunks, around 6-9 of deep sleep/light sleep cycles with no awakenings. 





Be Your Own Guinea Pig


If you want to investigate on your own first, try to correlate it over a couple of weekends.  One weekend take it completely easy. Do no physical labor for two days, see how well you sleep Sunday night. If weekends are your housework days, hire a cleaning service this once. If you are already in a disturbed sleep cycle though you may need to do this for several days until your symptoms clear.  Only after you are in a "good" cycle should you attempt to disturb your sleep with exercise.

The next weekend, attempt to exercise normally both days. I don't mean do your normal routine, I mean work out 30-45 minutes each day, see how much of a difference this makes to your sleep Sunday night. If you find that your first Monday was great, and your second Monday terrible, you fit this profile.  However, there are many unanswered questions that remain, and I've noticed in addition to exercise a secondary, cyclical pattern which I have yet to pin down.

Notice that the ResMed S+ was less sensitive for me than the Jawbone for this particular issue.


How can I get better?

Schedule another sleep study, but this time make sure you exercise normally the day of the study, if not two days before the study. In my case this was really a challenge, since my symptoms had been getting worse, my energy levels and moods had been suffering, causing me to exercise less and less.

It really helps to hire house keepers and have friends to support you.  Let them know what you are up to and that you'll need extra help while you try this. Take time off from work if needed. If you are like me, you'll crash for 3-5 days and be completely unproductive after the exercise portions.

It's also important to stress that immediately after exercising I felt great. My lungs felt clear, I felt light on my feet, it was such a great thing. It was only after I slept and failed to recover that symptoms appear.


Tips:

Remember that exercise IS recommended as part of almost every sleep improvement regimen, so you aren't breaking any rules by following the advice here. In all cases follow the advice of your doctors and personal trainers, but the guidelines here should be in compliance with them.

Right now as far as I know, there is no guidance on exercise before a sleep study/titration, however it's generally recommended not to exercise in the late afternoon evening as it can wake you up and prevent you from sleeping fully. 

The day before the sleep study:
  • Have no alcohol.  Zero.
  • Stop caffeine and chocolate after noon. 
  • Have a couple of bananas.  
The bananas and stretching do nothing for sleep, they are to help prevent leg cramps, skewing your study, and possibly disconnecting your wires. If you aren't used to exercising, a little extra potassium will help.  Any other potassium-rich food will do of course, if you are allergic, or just don't like them.

The day of the sleep study:
  • Have no alcohol, Zero, nada, zilch. 
  • Exercise as much as you should be able to do if you had no sleep issues.
  • Exercise vigorously 30-45 minutes in the morning if possible, but no later than early afternoon. Get into your aerobic zone for most of it. Again, be an adult and follow the advice of your doctors and qualified exercise instructors. For me, it seems that weight bearing causes the symptoms faster than aerobic exercise, so a few squats to tire your legs out may be all you need. Climb stairs with a couple of gallons of water in each hand should do the trick as well if a gym is out of your reach.
  • Make sure to cool down and stretch your legs.
  • Have a couple of bananas after your workout.
You may be desperate for an answer, but if you are like me, this doesn't take THAT much effort to tip your body over, so don't give yourself a heart attack before your sleep lab!

In my case, it was like magic, symptoms that had never shown up before became clearly and consistently visible during the lab work. The CPAP machine that was fine for the first 6 studies was completely inadequate now.


By challenging your body, and your CPAP machine you'll have the best study possible.

If you are a sleep specialist, or researcher, and would like detailed information I would be willing to make that available privately.  Please leave me a comment with information about your publicly visible contact information and I'll reach out to you.

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