I've done (4) sleep studies in the a lab. The tests can be frustrating as heck. I hate the lab tests because I don't sleep.
- My first two test ~6 years ago. First night barely slept.. maybe an hour at most.. but was enough to have enough events for them to wake me up and bring me back the next night. Second night was the titration test. I Managed to kinda sorta sleep a hour or two enough for them to set the levels. I ended up with CPAP at some outrageous level.. I remember it was about the highest pressure the Respironics machine went. Starting wearing it for a few months and what do you know I 'still' stop breathing even with the things going crazy blowing air. It resulted in me waking up with my stomach full of air. The solution was for them to put me on BiPAP. I did a little better but 'still' stopped breathing. If anyone uses BiPAP and has this happen you know it's very easy to tell (for your significant other). The machine flatlines... you're not breathing so it's not anticipating your breaths. I still got a stomach full of air.
I go back to the doctors and they all roll their eyes pretty much. I'm skinny, I'm young, I must be fine. This brings us to the 3rd test. Another sleepless night. But guess what. "You don't have apnea. Horray!". "Well... maybe you do... some kinda sorta central apena but that's kind of a new field and there's no real diagnosis or treatment anyways." Say what? Ok so they tell me to stop using BiPAP and I do for about 2 years. Of course my wife is still waking me up at night because I'm not breathing, and I have numb arms and feet and tired all day with chest pains. But I'm relatively young, not overweight, and look good so I must be great! Apparently none of this means anything to any doctors. I'm being sarcastic if you can't tell.
- 4th test. A couple years later I'm still complaining of the same symptoms and my wife demands to go into doctor with me and demands another sleep test as she sleeps next to me every night. So I do test #4. I don't sleep at all. Literally I don't sleep. Complete wrong time for my sleep schedule, uncomfortable, too much noise (can hear everyone talking the whole 5 hours), etc. I was literally 'never' unconscious although their data says I did enter some beginning sleep for little spurts for a total of an hour or less (regardless that's BS I could have told them what they were talking about the entire night and the stuff around the room I was staring at the whole time). Actually I was still wide awake from the night before so didn't have to "awaken" .. I literally put my cloths back on and went back to work with that crap in my hair and all and finally went to sleep for real about 3 hours later around midday that next day.. They said congrats nothing to see here, you're all good... I question the resulsts and said I didn't sleep at all and the esteemed pulmonologist said I may have some sort of CSA but we didn't get any REM sleep and there's no treatment for CSA that happens during REM sleep anyways. But don't worry you're all good. Pat on the back. Goodbye.
Fast forward two more years (again). I'm worse than ever. Tired. Chest pains. Bad circulation to arms and legs. But I'm still sorta young, not overweight, look 'healthy', so my doctors will not acknowledge anything. EKG's & stress tests are always ok. I've had a couple different primary doctors and still have to use the 2nd pulmonologist from the last test. I don't want to change doctors because of insurance. They may think I'm a hypocondriac or something (not sure how they could as I've never even been to the dr. outside of normal physical which I even miss some years.). They basically tell me not to worry about it all. How the heck can I 'not worry about' it when I don't sleep correctly, I'm tired, have chest pains,and get numb arms and feet?
I'm a lot wiser now than when this whole thing started (I actually realize now I've had it my whole life since I was a tired kid with chest pains). I have enough 'data' on myself the past 30 years and I know beyond a shadow of a doubt I have a sleep disorder that is dangerous and effects my health. I'm trying to research on my own. I want to do an in-home sleep study but the doctor isn't interested and I don't think I can with the same insurance because I had one couple years go w/ a negative result. Can I pay for my own home sleep study? How would I do this? Has anyone gone outside their insurance and paid out of pocket to have one done by different dr's and sleep centers? Now that I have a son I've promised my wife I'd get a real diagnosis.