Here are my sleep problems. Any ideas?

I’ve been having chronic sleep problems. A summary:

Background

I’m 45, male, 215 pounds. I exercise moderately most days. I drink maybe 2 drinks of alcohol per week. I get a decent number of hours of sleep, probably 7.5 hours on average. But I feel tired most days, and could take a nap most days. On some days I’ll take two naps, and still feel tired later.

So, I’m usually sleeping through the night—I just don’t feel rested in the morning. I get up, but feel I could sleep hours longer if I wanted to. The trouble is, even if I do, I don’t feel rested then!

Symptom and studies

I had a sleep endoscopy, which found that my tongue is collapsing from front to back, and the sides of my throat are caving towards the middle. The surgeon proposed removing my lingual tonsils, or pharyngoplasty/palatopharyngoplasty.

One thing that I’ve noticed is that if I completely relax my throat muscles, my airway closes completely, and it is impossible to breathe. When I have explained this to doctors, they have usually expressed doubt that this is true, and assured me that this cannot be the case — I must be actively trying to block my airway. But I’m not, and it is true! It happens just as easily if my tongue and jaw are moved forward — the action takes place in my lower throat. I’m not sure what to make of this; the sleep endoscopist claims he did not see this occur when I slept on my side during his study.

Sleep apnea

I’ve also done several overnight sleep studies, and was diagnosed with borderline narcolepsy and sleep apnea. Over time, the apnea and number of waking events seems to have gone up; the first study showed 5 events per hour, and the second showed 12. There were 24 events per hour when I slept on my back; I try to sleep on my side, but sometimes move to my back.

I was given a CPAP machine (a ResMed AirSense 10), and use it most nights. It seems to help marginally, though sometimes I wonder if it makes it harder for me to breathe, not easier. I hand-wash the components (tube, mask, water tank, etc.) with soap and warm water every 2-3 days, and I have the sense that the quality of my sleep seems slightly better the night after it has been cleaned.

Fun fact: in my last sleep study, the doctors and nurses miscommunicated, and I was woken up too early, with only 5 1/2 hours of sleep. Then over the course of the next day, they periodically asked me to try to fall asleep. I was able to fall asleep five times in a row over the course of that day! They were very impressed :)

What else I’ve tried

I’ve tried oral appliances to bring my tongue or jaw forward, but I’ve found them uncomfortable and distracting.

I notice that my sleep seems better in places, like the Carribean, where the air quality is good and where humidity is relatively high. In the winter, when the central heating in New England/New York homes dries them out, I sleep more poorly. I use an ultrasonic humidifier (with distilled water only) near my bed in the winter, but I’m not sure if this actually makes a difference.

Some other things I do: I do some tongue and throat strengthening exercises daily, for a minute or two; I snore, but the exercises seem to have reduced my snoring.

I opened a case on the late site CrowdMed, and people were nice, but no big ideas emerged. Several people suggested I have upper airway resistance syndrome, but from what I can tell, there’s nothing different I would do if that were the case.

I have kept a sleeping log spreadsheet off and on over the years, and recorded how rested I felt, along with number of hours slept, whether I used the CPAP machine, whether I had alcohol, etc. The only consistently high correlation was between number of hours slept, and restedness.

Connection to headaches?

I struggle with headaches in general, especially related to exercise; this has been diagnosed as “primary exertional headache”. Drinking alcohol also can bring on or exacerbate my headaches, while eating bananas and drinking Gatorade preventively helps. (Splashing cold water on my face also helps!) I also notice that I have headaches often in the morning, or at night if I wake up; and that drinking alcohol in the evening makes my sleep worse. I also find I wake up if I feel too hot. I wonder if these phenomena are connected: maybe if I find ways to reduce my headaches and do those fixes in the evening, my sleep will improve?

Appeal for suggestions

Any suggestions of other things I can try?

Ideas welcome! wheeler.benjamin@gmail.com