MilwaukeeMommy wrote:Let me just say, I *WISH* I could get a CPAP. I would give anything. I had a sleep study done almost 2 years ago, & I slept about 10 minutes. Clearly they were not able to diagnose me. I know I have apnea ---I am soooo tired from the minute I wake up until I go to bed --lots of headaches --I don't know if I snore but I know I would be delighted to at least try the CPAP. I am getting cranky, I am so tired!! I envy you & everyone else who was actually able to sleep all hooked up!
Talk to your PCP as soon as you can. You need to try to get another sleep study done. You need a referral to a lab that is experienced in dealing with patients who have had trouble sleeping in past studies. Ask if they can prescribe something to help you fall asleep the night of the study. Ask if there is any way that you can be allowed to see the facilities and the equipment before the night of the study. They only need to get a bare minimum of 120 minutes of sleep out of the entire test. And if all else fails, ask if there is any way at all if you could be scheduled for a home sleep study---there are such things. They are not all that common, but they do exist.
I did a sleep study to at my husband's request on August 1. He'd been nagging me for a couple of years. It's not that I snored loudly. But he had sometimes noticed that I would quit snoring and stop breathing until he would jab me. I would never remember anything about it the next morning. No daytime symptoms to speak of.
I'm 5'1'' and weigh 105 lbs. And 52. And female. Not at all the sterotype of a OSA patient. We both expected me to be diagnosed with MILD apnea and maybe have an OPTION of something other than CPAP. We met with the sleep doctor in late August. Diagnosis: I'm smack in the middle of moderate. And the doctor insisted that CPAP was needed. And the titration study needed to be scheduled ASAP. So the titration study was scheduled that Sunday night, August 29. Not fun. Won't go into the details here. And the phone calls from the doctor's office started that week about where I wanted the prescription faxed to. [I had declined to sign up with the DME the sleep doctor tried to direct me to since it shared office space with his office and to this day I believe he has a financial stake in it and he did not immediately respond positively to my request for a full data machine at our meeting prior to the titration study.]
For a number of reasons, it took me a while to get started. I was determined to NOT be rushed into accepting a non-data capable machine. I'd already done enough reading here and on another cpap forum to know that much. So I had started doing serious shopping around to locate a cooperative DME. I figured I'd lived this long with apnea and that a few more weeks to make sure that I got the RIGHT equipment from the RIGHT DME was worth it because that would MAXIMIZE my chances of sticking with this therapy for the long run. It took me three weeks to be ready to accept the fact that I was ready to face starting CPAP and tofind a DME that I was comfortable with and that took my insurance. I called the sleep doctor's office and told them where to fax the prescription. Somewhere along the way, I also told the sleep doctor's office to send me a copy of my prescription and copies of the reports of my sleep studies. I picked up the S9 AutoSet on September 23.
It has not been an easy time since then. Even now I won't claim that I am now completely adjusted. But my case is an outlier: Due to uncommon problems adjustment, the PA in my sleep doctor's office made several efforts to adjust therapy and I still was having trouble. By the end of November, she and the sleep doctor recommended that I have a second titration study, and they changed me to a BiPAP in December, which has helped quite a bit. But still I'm fighting a nasty insomnia monster. Through it all, though, I have stuck with therapy. Why? Well, primarily it is because I do believe that if left untreated, sleep apnea is a silent killer: Like high blood pressure (which sleep apnea can induce), sleep apnea creates strain of all sorts on all your body's systems. While I felt healthy last summer, who's to say what kind of a toll the apnea would have taken on my body in the next 10-20 years if I chose not to treat it?
One of my coping devices in my long (and incomplete) adjustment period has been writing about it---warts and all. I have felt like a freak. I've yelled that I feel like a freak to my husband way too many times this fall. But as a couple, we will get through this. We've even started to find some humor at times. My BiPAP's name is Kaa---after the snake in the Jungle Book. In reference to how I wish that it would hypnotize me to sleep at night when the insomnia is acting up.
As you can tell (if you've read this far), back in August, I was a lot like you. If you'd like to know more about my long and on-going story, feel free to pm me and I'll let you know where I've done most of my posting. And I don't mean for this to be a gloomy, dark post: But I also remember that when I was in your shoes, I really didn't want to read post after post from the folks who took to CPAP like fish to water. They are out there though---bless their hearts. And knock on wood, you may be lucky enough to be one of them. But right now, you're still in the angry "why does this have to happen to me stage?" And you do need the time to work through that stage: Take the time to address your feelings and talk to your partner about them. Let him assure you that your are NOT a freak (and that even if you are, you are his freak).
And here are some things to keep in mind as you start learning about OSA and making decisions about where you will chose to go from here:
Some 40% of OSA patients are NORMAL weight (or even underweight).
OSA is NOT a lifestyle disease: It is most commonly caused by physical differences in the structures in the upper airway that allow it to collapse when the smooth muscles relax (or over relax) during sleep. These are muscles that we have no conscious control over and they are not ones that we can "exercise" in the same way we can our arms and legs.
Untreated OSA can lead to changes in the metabolism that make it very easy to put on excess weight and once excess weight is put on, untreated OSA can make it much more difficult to lose that excess weight even with appropriate dieting and exercise.
Untreated OSA can increase the risks (and complications) of high blood pressure, type two diabetes, heart disease and stroke.
Untreated OSA can complicate other chronic medical conditions in many insidious ways---most notably by denying you a decent night's sleep every single night.
Best of luck to you,
I am still feeling depressed about all this, and scared about the study. Especially that I will not be able to tolerate the mask.
I tried a friend's full-face mask and it totally freaked me out. I could not wear it, felt like I was suffocating and the sound was overwhelming.
I was able to handle the Swift FX of another friend's, but I do not believe they have this type at the study...
Any advice or thoughts?
Other issue: I have been experiencing morning-long headaches and a pronounced, almost continuous tinnitus which sounds like a loud, high pitched hissing.
I have never had tiinnitus or hearing problems. My doctor treated me with antibiotics for ear infection but the tinnitus has not improved. I am perhaps hyper-aware of things given my recent dx. Does anyone else recall these symptoms before they were treated for their SA?
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