New user with questions and frustrations
I'm glad you are all out there to help. I have been on therapy for 12 nights. I have many questions and some frustrations. I should probably break this up into more than one post and I'll probably be putting in too much information, but I'm not sure what to exclude.
I did not have a sleep study at a sleep center because my insurance wouldn't pay for it since I had a low Epworth score. I'm not particularly tired during the day, however I have ADD and take a pretty high dosage of Concerta, so daytime sleepiness is more than likely masked. I also have never slept well, even as a child and I'm used to it, which may also keep me from feeling tired during the day. Anyway, I had an at-home study with no titration follow-up. I did not get the specific results but only a diagnosis that was positive for moderate sleep apnea. The sleep study people read the machine and sent the diagnosis to my family practitioner, so I am not working with a sleep specialist doctor.
(with the ADD in mind, is there any way to turn off the moving/animated smilies at the left of the page. they are distracting the h&*% out of me.)
After the sleep study it took about 2 months for the insurance company and the medical equipment company to get on the same page and get me a machine. The medical equipment company is just about as difficult to deal with as Time Warner Cable, if you have experience with them, you know what I mean.
They first fitted me with a full face mask and it was too large, plus, I don't think I need a full face mask. Then I got nasal pillows but the DME guy called me back that night and said he checked my levels and their company didn't recommend the nasal pillows for pressure above 14 and mine was sometimes 14.8 so they wanted me to go back to the full face mask. I told him I chose not to do that. Also, I might consider a nasal mask instead of the nasal pillows, but I already changed once.
Does anyone have a mask they can use reading glasses with?
My prescription is for 2 weeks of auto pressure between 4 and 20 and then it is to be set at a constant rate at the 95th percentile. The DME guy said that would be 15 and according to the prescription they would set it for that on this coming Tuesday, the end of my 2 weeks. I have written my physician and asked to change the prescription. I feel suffocated at the level 4 and whenever the machine gets anywhere close to 15, I wake up and stare at the clock until my 4 hours are up, for compliance reasons, then take the darned thing off. I can't sleep at that high pressure. Most of the time, it doesn't need to be that high, so I asked the doctor to change the prescription to start the ramp at 6 then go to an automatic variable between 9 and 16. I have not heard back from her, yet, but it is the weekend. I would also like to have some exhalation relief, but the technician said that the doctor would have to prescribe that, too.
I have not yet downloaded the ResScan software. I just found out about it last night.
I see from this forum that I can easily get to the clinician's menu and change my own levels if the doctor doesn't change the prescription. I have no qualms about doing this, but wonder if since my insurance company is paying for most of the machine and it won't be officially mine for 10 months, will the compliance people at the DME who report to the insurance company allow me to do that or will they consider it noncompliance? I would consider just paying for the equipment myself if this is the case, but I have no idea how much that would cost.
Now, onto the next issue. I did say that I am used to getting less sleep than most people, however with this blessed machine, I'm getting even less than I usually do and it is making me crazy. I didn't go to sleep last for more than 3.5 hours. The only 3 nights I have slept well are nights I have taken a sleeping pill, but I don't like to do that every night. I'd like to turn on some meditation music or sleep visualization talk thing but then I'd have to put on earphones and I feel if I have another wire and appliance it would only add to the discomfort. I have been 100% compliant for 2 weeks (at least up to the 4 hour mark) How much longer will this feel like torture, serious torture? I used to think sleeping with a special sock to pull my toes back for plantars fasciaitis and a brace on my arm for carpal tunnel and night sweats due to menopause was bad. This makes those things seem like a walk in the park. (I guess that was just a whiny rant, but the real question is how long will it take me to get used to this and at least get back to my usual fall asleep time of 45 to 90 minutes?)
One more thing. Are there studies to prove this therapy increases life span or decreases stroke or heart failure. I understand that people with OSA have a higher rate of stroke and death but that does not exactly translate to CPAP therapy decreasing morbidity. I don't want to do this to feel better during the day. I already felt fine. If it weren't for my partner's instance, I would never have begun this therapy. I want to see efficacy data from well done studies. It's a quality of life issue. I dread going to bed and don't find this the least bit restful. I'm more tired during the day thank I ever remember being. (oops, another rant)
Suggestions? Information? (I like information)
Suzanne in NC (where it is already very humid, so do I need the humidifier? It makes my nose feel wet.)