Joined: Feb 2012
Machine: PR System One REMstar Auto (DS560)
Mask Type: Nasal pillows
Mask Make & Model: ResMed Mirage Swift II
CPAP Pressure: 12.5 - 18.5 cmH20 (auto range)
CPAP Software: SleepyHead
Other Comments: Have diabetes Type II
Location: Illinois, USA
RE: Your Personal CPAP Success Story - Post Here [copied from old forum]
kairosgrammy Wrote:I just turned 60. Yikes, how scary is that?! I have one daughter and two grandchildren who I adore. I've been so tired lately that my time with them has been limited. Hopefully that is straightened out. I'm a school based speech pathologist and love it.
My journey with sleep apnea doesn't actually begin with me. My brother was diagnosed in the late 90s with sleep apnea, severe, severe sleep apnea. He could no longer drive because he would fall asleep, he was having multiple health problems and he pretty much had all of us scared silly. His lips were even constantly blue from lack of oxygen. Finally, we had a family intervention of sorts and he went to the ER, found out he was in congestive heart failure and that the doctor suspected sleep apnea was part of the cause. They started him on bipap before he was even officially diagnosed. He died two years ago but I'm convinced that had he been diagnosed and treated much earlier, he might still be alive. Years of no sleep and oxygen deprivation just did too much damage. But because he was diagnosed, I think he lived a lot longer. Honestly, I don't think he'd have lived more than a few more months, if that when we had the family intervention. Those extra years were definitely a gift from God.
A few years later, my sister was also diagnosed with severe sleep apnea. I don't think any of us ever suspected her. She snored but more of a light snorer, nothing huge like my brother. About that that time, I was starting to have some symptoms, tired even after sleeping a full night, groggy and muddle-headed etc. My family said, Lynn, go ahead and take care of this and I did after awhile. I'm nothing if not stubborn, wouldn't even really admit to snoring, LOL. Found out that indeed I did have sleep apnea although mild. The doctor said that I did fine the first part of the night but as the night progressed, I became more and more apnic. Unfortunately, that was about all he told me. I have to laugh though when I remember it. He began the discussion by saying, "Well, you are right. You do snore." At any rate, I was started on CPAP and felt a lot better. Strangely though, when I thought I might have sleep apnea, I wasn't horribly bothered but when I found out I really was, I was terrified. I'm pretty sure that not breathing for periods of time is not really good for your health.
Well as the years have gone by, while I've been more or less ignorant about sleep apnea other than I had sleep apnea, my weight problems have gotten a lot worse. Two and 1/2 years ago, I was hit by a tornado in the middle of the night. I've always had insomnia off and on but after that, sleeping became very difficult. I guess I was afraid to sleep. After my brother died, sleeping became even more difficult and so I finally talked to my doctor. He felt that I had some mild ptsd and depression and started me on zoloft and ambien.
Still, I've felt run down and groggy, I'd sleep 8 and 9 hours and still felt groggy, y'all know the drill. So when I went for a check up this past October, he asked me how the sleeping was going (he knows this is a big problem with me) and I told him I was feeling run down and tired. He then says, well, how long has it been since you had a sleep study (strange how people's views change, when I asked for the first study, he was like sure, it can't hurt. Don't know why they don't sell them over the counter) and I think it was in the early 2000s. That's how ignorant I was. I really made no mental note of when I even started cpap. My setting on the cpap was 7 so not very high.
He said, let's do another and he sent me locally for a sleep study while also doing some blood work to rule out other problems like problems with my thryroid. The results were horrifying to be honest. This doctor actually sat down and explained in much more detail than my first study. My oxygen levels were dropping down to 80% on current settings and even when they got me up to 10, my oxygen levels would drop down to 80% again when I was on my back. On 10, on my back, I had 36 AHI events. On 10!!! No telling how many I had on 7. Of course, there were those moments of not breathing. He said I woke up enough that if he walked in the room, he could strike up a conversation with me. Weird that you don't remember most of that!
Well, long story short, I was given a new cpap (Respironics One) since my old one didn't have the sd card. He said that he was prescribing a level of s12 but that the sleep study was incomplete because they could never titrate high enough to insure that AHIs and oxygen levels dropping on my back were also good. Since then, I do sleep better, feel much more alert. I have also realized how little I really knew about my own health as far as sleep apnea. When I had a hysterectomy, I researched the surgery extensively. I joked that I could probably do the surgery myself. That was in 1998 before you tube or at least before I knew about you tube. When I developed arthritis in my neck and 4 herniated discs and needed surgery, again I researched the surgery, being put to sleep, what would be done with the surgery etc. I understood exactly what would happen, start to finish. I can't believe I just accepted a diagnosis of sleep apnea without informing myself.
Now I use sleephead to track my sleep etc. I want to know that what I'm doing is working. If it no longer works, I want to know what to do to make it work again. I want to be more proactive in my own therapy rather than just assuming because I do feel better that everything is as it should be. The first person in charge of my health isn't the doctor, or my dme or anyone else. It is me. I am my health manager so to speak and I need to do a better job of it.