Getting Best Treatment following Sleep Apnea Diagnosis

Posted by crookshank @crookshank, Sep 3, 2018

I was diagnosed with Sleep Apnea following a sleep study in April 2018. CPAP was recommended. The second night in the sleep lab , with CPAP, was not
just uncomfortable, it felt like torture. I got no sleep that night. In the following interview with the Sleep Doctor I indicated an unwillingness to order
a CPAP machine. She suggested that although surgery was no longer recommended for Sleep Apnea, I should consult a specialist regarding my nasal congestion, and then come back to her for CPAP. My reaction was to make an appointment with my primary doctor, who indicated he had found the
use of nighttime Oxygen helpful for sleep apnea. Meanwhile, I had made an appointment with a dentist who specialized in an oral device for the disorder. At the first appointment I was measured for the device, which required an order from my primary doctor. After several attempts to contact my doctor, his
assistant simply said he would not sign for such a device. There was no reply as to why his offer of oxygen had been delayed, now for over a month. Also
I reviewed all the resources I could find and was unable to find any expert who suggested oxygen as a first line of defense for sleep apnea; there was even
the suggestion it could be harmful.
My sleeping remains very troublesome. Waking several times during the night, not well rested. Headaches. I continue to wake with my O2 level declining at intervals, my heart rate racing, feeling hot and clammy, despite the room temperature, gasping for breath.
Realizing the need for help, I see four options:1. Go back to the sleep doctor and request a trial with BIPAP ( she had at one time suggested that but
at the time it felt too much like just another version of CPAP, a reminder of my previous terrible experience). 2. Go to my primary doctor and try to sort
out the confusion, and see if he will in fact order the night time oxygen. 3. As I am soon to move from this rural area to an urban area where options for
medical care are far more available, seek out another Sleep Doctor for a consult, and start fresh from that point. 4. Seek an appointment at Mayo Clinic,
despite the distance, expense, and inconvenience that would entail.

The search for treatment has become discouraging and the toll on my life has become pervasive in my otherwise healthy life, and I appreciate any helpful comments.

Interested in more discussions like this? Go to the Sleep Health Support Group.

Hi @pomah, Thank you for your post and welcome to Connect! I've been using a CPAP machine for about 4 months now and am still in the learning to love it phase. Actually just the learning phase. I'm a mouth breather on my 4th type of mask and still trying to adjust. I have an AirTouch F20 memory foam edged mask that I really like and used it for about a month and my AHI numbers were going along good and were around 4 to 5 then popped up into the 6 to 8 range after a month so I switched to a AirFit F20 sample mask the store gave me and used a cloth comfort cover and for 3 days the AHI dropped to 3.3 then to 4.7 and then up to 8.7. So tonight I'm going back to the AirTouch F20 to see if the numbers go down again. I know my numbers are higher if I sleep on my back so I always try to be on my side until my knee starts bothering me.

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This sounded so much like me. I hope you find some answers to help you. They just found another problem with my colon so it has been a nightmare of downs. Jane

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