A little history of my apnea. Started feeling bad about 4 years ago. Very rarely had dreams, tired and run down all the time. Wake up feeling bad with headaches and all over body aches; almost flu like. Waking up many times through the night. Laying awake for many hours due to insomnia. It seemed to progressively get worse over the course of a year until I couldn't take it anymore. The sleep deprivation was killing me. After many doctors visits complaining about how I ache so badly that I can't sleep they finally sent me to have a sleep study. Turned out I had mild apnea. They also diagnosed me with fibromyalgia and post lymes disease syndrome among several other things. My aches and pains get better with the more sleep I get. I actually feel real good the couple times a year when I can actually sleep for about 12 hours or so. I'm pretty certain all my problems are related to sleep deprivation.
Started cpap therapy in May of 2014 and have used the machine most every night since. I have mostly solved the insomnia problem by eliminating stress, but still feel sleep deprived and bad every day. Occasional morning headaches, run down, tired all the time, many aches and pains still. Basically not much has changed since I started cpap. Most nights I'm sleeping 7-8 hours. Most nights I wake 6-8 times per night that I know of. Probably waking more that I don't know about. A rare good night will be 2-4 times and occasionally I have some awful nights where I consciously wake 10-12 times. All for unknown reasons.
Minor adjustments in pressure to my cpap did not make any difference. I was in the average 2-4AHI range most of the time so they told me everything is good each time I attempted to get help. I was prescribed sleeping pills several times by my general doctor to knock me out through the night. This seems to make my apnea worse so I don't take them. I finally I reached a dead end with my sleep doctor. He said I have anxiety.lol I never went back to see him after that. Since then I have not heard good things about him.
Went to Mayo for a second opinion and a second sleep study. They said everything looks good. They sent me back to my local sleep center and said to have them set the pressure to 5 instead of 8 where it had been. And if I cannot tolerate that to go without the machine. So I got nowhere going to Mayo and I'm still in the same boat.
I have just touched on all the the doctors visits, tests and programs I've been through over the last 3 years. Many thousands of dollars later and very little relief. Anyone I talk to about it is dumbfounded. Basically my faith in the medical system is very low at this point. It's amazing how screwed up it is in the way it operates(services and financials). I've found out first hand why so many people continue to suffer.
I took a break from doctors visits this year and decided to take the matter into my own hands. Since I believe that most of my problems still stem from sleep deprivation this is where I'll be focusing my efforts. Did a ton of reading this past year.
I recently bought a Withings Aura sleep monitor that tracks how often I wake every night. It's not highly accurate, but from the graphs it's pretty obvious that I'm aroused from sleep often and likely many times that I'm not aware of. The arousals/awakenings seem to correspond with the apneas and hyponias that I'm still having.
Thanks to the internet I was able to find out how to adjust my Remstar S1 Auto by myself. Now I can start tweaking the settings. I also found software called Sleepyhead that shows me all the graphical data that before I could only get by going to the sleep center. Also this week I found this forum and decided to sign up.
4 years of sleep deprivation and hoping to still figure this out. I haven't completely given up. Have gone through some rough patches though. Sorry to be so long winded to start with. It's been a long road.
|Mask: AirFit™ N10 Nasal CPAP Mask with Headgear|
|Humidifier: PR System One 60 Series Heated Tube Humidifier with Heated Tube|
|Additional Comments: Sleepyhead software|