Problems with CPAP Titration Study -- Need Advice!
[Copied over from our old forum]
Help, I'm new to this board, and I need your help and advise! I just FLUNKED my CPAP titration study.
I went about a month ago for the initial sleep study because I am trying to arrange surgery, and the surgeon required a sleep consultation for apnea prior to surgery because I am very overweight. The initial study said that I had apnea, that I stopped breathing about 500 times during the night, and that my oxygen level fell into the 70's.
So, I went back for the second night, to try the CPAP machine -- a "Titration Study." Anyway, the technician wired me up, and then set me up with the large mask wich covered my mouth and nose (I breath through my mouth mostly when I sleep -- I get a lot of stuffy noses). I didn't like the sensation of air blowing on my mouth and nose, but I was able to tolerate it enough to fall asleep after probably an hour to an hour and a half. But, I woke up very suddenly about 4 hours into the study with very intense "wind" blowing into my face, and I "freaked out" and bolted up in the bed and tore off the mask, because I literally felt like I could not breath -- I couldn't inhale against the pressure of the "wind" on my face.
Of course, the sleep technician came running in, and I guess she wasn't too happy with me, because I couldn't get the mask back on with the high volume of air flow coming out of it. Every time I tried, I felt like I couldn't breath. I tried it for a couple of minutes, and then I asked her what the options were, whether she had enough information to complete the study, and she said that I could either "sign a waiver" and leave at that point, which probably meant "against medical advise" and that I would have to pay out of pocket for this test (my insurance was billed over $3000 for the first night of testing, but the hospital accepted $1000 and I had to pay NOTHING out of pocket, thank God!) OR she could turn down the pressure and we could try again.
Not wanting to get stuck with a big bill NOR wanting to have to go back and do this all over again, I told her to continue with it. So, she turned the pressure/air flow way down to a point I could tolerate it. Then, I tried to go back to sleep, but I basically couldn't sleep for about three hours. I was disturbed multiple times by a loud sound within the walls (I think water rushing through a drain when someone flushed a toilet on the floors above), and several times by the technician to check and repair loose electrodes. I did finally fall back to sleep pretty soundly, and shortly thereafter, the Sleep Technician woke me up, more or less told me she couldn't complete the test because I didn't sleep enough, and sent me home.
So, before I left, I asked her where things stand. She said that I probably wouldn't qualify for CPAP use because I didn't tolerate the machine, but the doctor "might" prescribe one, start me out at a very low pressure, and then have me come back in a month for a retest.
Two other factors I feel are relevant:
1) I'm not very surprised that I couldn't tolerate the mask, because I'm very sensitive about things around my face -- I gag very easily, and I absolutly cannot wear scarves or hats or high collars around my face or neck, because I feel like I am going to choke -- I've always felt this way. Also, I cannot tolerate anything in or going up my nose -- no nasal sprays, and I absolutely do NOT swim or go in the water, because I cannot stand water in my nose at all -- once again, I feel like I am going to choke.
2) I let the doctor and sleep lab both know that I DO NOT and HAVE NOT for at least five years slept in a bed. I sleep in a recliner chair. I initially started this because it helped with gastric reflux and back problems, but I do now find I cannot breath after I have been laying flat for a while, whether awake or asleep. This may be related to sleep apnea, but really isn't exactly the same. It's not a choking feeling or a stopping of breathing feeling, but a chest and lung compressing feeling related to weight pressing on the chest cavity and diagphram. I looked this condition up online lately, and it has it's own name and diagnosis, but i cannot remember it at this time. HOWEVER, they INSISTED that I sleep flat in a bed, and would not let me sleep in a chair. I tried to tell them that I would NOT be able to sleep comfortably in a bed, and I know this contributed to my discomfort with the mask.
Here's where I need to advise or opinions of others who have been through this:
Isn't this mask and CPAP something which takes practice and experience with to get used to? The S.T. made it seem so black and white -- either you can take it, or you can't -- like it's all over, I'll just have to go crawl in a corner and die quietly now because I couldn't tolerate the mask with the strong air flow. It seems to me that most people would have problems with this at first, and that my experience probably isn't all that atypical. I read another post on this board where the author said it was like trying to breath with your head out the car window going down the freeway -- that was exactly how I felt.
So, what should I say to the sleep doctor, assuming I even get to talk to him -- an office person called me with the first test results? I am willing to try to use the machine, but I think it takes practice and time to get used to this. Although she was nice, the sleep technician made me feel like I was wasting their time.
What I'm most afraid of is that I'm going to be stuck in this catch-22 where the surgeon won't do the surgery I desperately need because the sleep doctor won't treat me for apnea. I jumped through all of the hoops the surgeon wanted, including a whole bunch of other tests, without any problems.
What should I do? Should I try to get a second opinion from a different sleep doctor? Would a different sleep clinic be more understanding or accomodating of special needs or requests? I feel that, if I sleep upright in a chair at home, I should be able to do so at a sleep clinic, because it is "normal" for me.
I've rambled enough. Any advise appreciated?
Hi YDM, welcome to Apnea Board!
I would consult with your sleep doctor and tell them everything you posted here on this forum. Be honest and complete in your explaination of why you believe the sleep test went poorly. Ask your doctor to prescribe the sleep test using a reclining chair, which is your usual sleeping arrangements - if that is not possible, I've heard that some sleep centers will come out to your house and do some sort of a limited test right in your home. Ask to try several different types of masks - maybe the full face mask you were given was not right for you. If your O2 level goes down to 70 percent, you NEED to be on CPAP, bottom line. This is not something where the sleep center says, "oh well, we tried, but they could not tolerate CPAP..." That's bogus... ask to be accommodated properly - try to approximate your normal sleeping arrangements as much as possible, try different masks - heck even try a different sleep center if necessary. But don't give up.
As an alternative, if all else fails, ask the doctor to prescribe a CPAP machine with Cflex or Aflex technology, and experiment with it yourself, using a variety of masks.
Wow! That's certainly a bad sleep study experience! SuperSleeper's advice is good.
I'd add that in addition to asking your doctor to prescribe a CPAP machine with Cflex or Aflex, ask that he prescribe an "Auto PAP" or self-titrating CPAP machine that automatically adjusts to your needs. While it's still a good idea to have a sleep study to understand your sleep situation and needs, with Auto PAP, you no longer need a study just to get a pressure setting. Cflex and Aflex are both "comfort" technologies that make breathing feel more natural by adjusting the pressure as you breathe in and out. For me, Cflex is so "natural" that I sometimes have to check to see that the machine is on. Many machines can also record considerable information about your breathing as you sleep for analysis later.
Everyone seems to imply that a sleep study is simple for the patient. Indeed for some (maybe most) it's not much different than a night at home. On the other hand, the different environment, all the wires and hookups, and stress can make it very difficult to sleep. The sleep center should be set up to be very easy-going, relaxing and as much like a real bedroom as they can make it. I even think patients should visit the sleep center in advance to get acquainted with the setup.
In my first sleep study, I laid there all night and didn't sleep a wink! We tried again another night and I finally slept for an hour and a half or so. Several years later I went to nicer sleep center and my doctor prescribed a sleeping pill so I could sleep. I'm sure it's preferable not to be drugged, but there was no other way.
You could also seek a "home sleep study". (Google it without the quotes.) While this may not give the best or most complete results, it is the only option that works for some patients. Hopefully, you can find a provider in your area that offers a home study.
Keep at it. Don't give up just because of one bad sleep study experience. They're the ones at fault, not you.
As was previously recommended, I would consult with your sleep doctor. If you dont get results or dont feel you are being heard, see if there is another specialist in your area. If there isnt one, work with your primary physician and/or insurance company.
I too felt a little uncomfortable during the sleep tritation - they actually had to give me sleeping medicine. I go to sleep with the TV on and trying to sleep in a quiet room with strange wires/mask on me made it difficult. The medicine I was given didnt interfere with the test. I am also sensitive about things on my face but have discovered it relates to my inability to sleep and breathe through the night. After the test my doctor was able to prescribe a machine for me. I had been up until 2 weeks ago been sleeping in a recliner. I now have had my CPAP for a week and love it.I worked with the respiratory therapist to find a nasal mask that works for me. If I find in a couple months I need to go to a mouth and nasal mask, my insurance will let me switch. Also the machine I have has a ramp up feature. This is where the flow of air is less than the full amount until you are well asleep. Once you start getting a decent night sleep it makes all the difference.
If the test results were inconclusive (which I believe they were as the test was interrupted), another can be done and you can work with the center and your insurance about the cost.
Your sleep study sounds a bit like mine. I had problems sleeping since my normal times were not what the center insisted I try to sleep. The cpap and other noises at the hospital kept me awake and I was told I slept one hour. I also felt, and sometimes still feel a panic upon waking after a couple hours sleep. I have an auto cpap, which really helps. I have been using it for several months now, and I am slowly adjusting to it. I think you went to sleep during the ramping or settling time period then woke when the pressure was at the higher point. I hope you find something that works for you, best of luck and don't give up.