I can't find a single doctor to explain to me, why, when my weight goes
down, I finally get the good, restorative sleep but when I gain the weight
back, I'm fatigued again. The cpap is supposed to be stopping the apneas,
and I had it tested and my apnea count is almost zero, but with the cpap
I still have profound fatigue.
I had braces earlier in my life, and my upper teeth were brought forward,
which totally changed my bite, so maybe that has some effect. That, in
addition to the fact that I have large tonsils, my tongue rolls back, and I seem
to have excessive soft tissue.
Your sleep breathing problem started off with an anatomic problem—your jaws didn't grow enough. That's why you had dental crowding and braces. The braces may have straightened your teeth, but didn't enlarge the jaw. If the total volume in your mouth is smaller than normal, then your tongue takes up too much space, and is more susceptible to falling back when on your back and especially in deep sleep. The reason for your large tonsils is because of inflammation due to your apneas, which cause a constant vacuuming of your stomach juices into your throat, causing any lymphoid tissue (tonsils) to stay swollen. This is why you can't normally sleep on your back. Any soft tissue enlargement due to swelling (tonsils) or weight gain (fat) will narrow the airway even more, aggravating the vicious cycle. This process probably contributed to your jaws not enlarging properly when you were a young child. This is also why it's important to keep the weight down. Also, I agree with Vicki that any degree of significant weight fluctuations will change the therapeutic CPAP pressure.
This is why a tonsillectomy or UPPP+tonsillectomy alone will not cure you of your apnea. It may help you to lower your CPAP pressure, however. If you wanted definitive surgical treatment, you either have to enlarge your jaws significantly, or make your tongue smaller (in addition to the UPPP/tonsil—that's a long discussion in itself with many pros and cons). Using a mandibular advancement device in addition to CPAP is a good idea. Dr. Lawler, a dentist who posts here often, recommends this form of therapy for many patients.
One possible explanation for your continued fatigue despite having "normal" apnea scores is that a sleep study only measures breathing stoppages greater than 10 seconds. If you stop breathing 20 times every hour but wake up after 1-5 seconds, then that doesn't get counted at all. Along with the fact that your CPAP pressure may be inappropriate due to your weight changes, the CPAP itself may be waking you up. People with mild obstructive sleep apnea and upper airway resistance syndrome (what you also have) have very sensitive nervous systems and have trouble tolerating CPAP. It can be a double-edged sword.
Your best bet is to try the dental device, and keep the weight down. Also if you have any degree of nasal congestion, you should take care of that as well. Hope this helps.
Steven Y. Park, M.D.