Snoopchic wrote:Thank you all so much! You are very right, if it was my daughter I would do anything I could to make it work for her. When it comes to me I rarely do what I need to. I never remember my meds or anything else I need to be doing.
I say this as a middle aged woman who has raised two kids: We women often "forget" to take care of ourselves when there are other people to take care of: We often think it's "selfish" to put our needs first, but it's a mistake to always put our needs last. Sometimes the best thing we can do for the people we love is to actually take care of ourselves and do what we need to do for ourselves. Taking care of our health needs is one of those things: When we don't take care of our own health, in the end we make it harder to take care of those whom we love.
It's mostly anything near my nose and mouth that bothers me. I feel like I can't breath if anything is there. My eyes and top of my head have never been a panic factor for me just mouth and nose.
I still wonder whether the stress your body endures during each apnea/hypopnea when you are asleep is contributing to the anxiety you get when anything comes close to your mouth or nose. In other words, I wonder if you have some kind of an unconscious (or maybe conscious) fear of suffocation that is grounded in the fact that you are indeed experiencing small, but real mini-suffocation episodes every night in your sleep. If that is the case, then starting CPAP may actually decrease your anxiety in the long term: Once your body realizes that it can go to sleep and get into REM at night without experiencing repeated mini-suffocation episodes, your anxiety of not being able to breathe if there's something around your mouth or nose might start to decrease.
I guess I just can't understand why it came back saying I needed it, when it just doesn't appear that way from research, as in not fitting in the standards.
I spent the first couple of years moaning and bitching to my husband about how unfair it was that I, a physically active, skinny small female had this disease that is so often associated with sedentary old fat men. I was lucky that my hubby was very understanding and patient with me. (Then again, the only reason I had a sleep test done was because he was tired of waking up to the sound of me snoring, or even worse, the sound of me NOT breathing for a long enough time to be alarming.)
But stereotypes are usually not true and even though OSA is statistically correlated with being overweight, there are a lot of OSA sufferers who are not overweight--I think it's usually cited as about 30% of OSA sufferers are of normal weight. And there's some real evidence that many overweight OSA sufferers may have gained the weight due to metabolic changes caused by their untreated OSA rather than the other way round. (Most OSA sufferers suffer from OSA for years before they're diagnosed as having OSA and receive a CPAP.) Men do out number women, but not by as much as most people think.
I tend to be a control freak, and really want to see my results, I think that would make me feel more in control.
Given that you are a bit of a control freak, you're going to need to insist on a full efficacy data machine. If you have a full efficacy data CPAP, then you will be in a position to take control of your therapy. You will be able to see whether the machine is doing its job when you use it. And if the data doesn't look good, you'll be able to post it here, get suggestions on what to do to fix the problems, and figure out how to make this crazy therapy work for you. With a full efficacy machine, you'll be able to approach CPAP as something that you can use to gain control over the OSA---you'll be able to be a full partner in your therapy. But if you get stuck with a machine that does not record full efficacy data, it's just going to add to the feeling that CPAP is something that is being done to you and that you have no control over what's happening to your own body with respect to the OSA.
When you meet with the doc you do need to insist on seeing the whole sleep study report. And request (insist) on getting a copy of the report for your own records. If you don't understand anything in the report and the doc didn't explain it clearly enough for you to understand, post your questions here and we'll help you get the knowledge you need about this condition so that you can feel like you're in control of taking care of yourself.
I had no problem sleeping this afternoon (I never do during the day, just can't sleep at night, I lay there for hours and I wake constantly) but, I do great all day!!
The "I just can't sleep at night" may be another OSA symptom that you've been attributing to "just insomnia" or "maybe narcolepsy" or "whatever the heck it is that's wrong with me". People with untreated OSA often have real problems getting to sleep at night---some of them have developed an unconscious fear of going to sleep because of the physical stress the repeated apneas and hyponeas cause the body.
Since you have a long term pattern of sleeping in the daytime and not at night, it's going to be important for you to remember that you'll need to use the CPAP for those daytime naps when you are consciously deciding to take a nap.
Again, thank you all! I'll update after I see if they will fax me the info on Monday before the study!
One word of advice: You've mentioned taking Valium earlier in this thread. You should let the doc who is ordering the sleep study know that you are very, very anxious about it. He should be able to arrange for you to be able to take your normal anti-anxiety medication as needed the night of the study. Sleep tests are hard enough to do in the first place. When you don't sleep much (or well) at night AND you're anxious about the idea of having a mask put on your face, it's even harder to try to get some sleep.
Some things that may help you on Monday night's study:
First: Let the tech know as soon as you check in that you have real anxiety problems with things around your nose. See if the tech will let you have several masks of different styles to play with and try on well before bedtime. Spend some time holding the masks in your hands and just trying to get used to the way they feel. Put each one up close to your nose and see if any of them are easier for you to tolerate near your nose. Even though the nasal pillows masks have more minimal headgear, they may be tougher for you since they actually touch your nostrils. But they don't cover your nose, and that may make them easier for you to bear. It's a very personal thing. Hubby (who is also a PAPer) can't stand nasal pillows because they're touching his nostrils, but he has no trouble with either a nasal mask or a full face mask because they don't touch his nostrils even though they do go over his nose. I can't stand to have the tip of my nose covered by the mask, but the nasal pillows touching my nostrils has never been much of an issue. If I can scratch my nose, I'm ok.
Next: Read everything they ask you to sign. Do NOT sign any paper that gives the sleep clinic or the doctor's office the authorization to fax a copy of your CPAP script to an equipment provider (DME) that you've never heard of or talked to. A lot of DMEs set newbies up with bottom of the barrel CPAP machines that record no efficacy data; these CPAPs are referred to as "bricks" around here. With your need to for a sense of control, you will NOT be happy with a brick.
You will want to shop around for a DME. Call your insurance company and try to get a list of approved, in-network DMEs who supply CPAP equipment. It's also useful to know how the insurance payments for the machine will work: It's often very different from the way prescription drugs are covered. Insist on either getting a script in your hands or tell the doc that you want to select the DME and that you will tell the doctor's office/sleep clinic where to send the script once you have found a DME that you want to work with.