Hello I am new here and to Sleep Apnea. I had a horrid sleep study this week that was very traumatizing and am waiting to hear back from the doctor. My question though is do any of you have shortness of breath during the day from the sleep apnea? I went into my doctor 2 months ago for shortness of breath and after chest xrays, an EKG, and some pulmonary testing I was referred to a pulmonologist. I seen the pulmonologist a month ago and he wanted a CT scan, Echocardiogram, more pulmonary testing, and a sleep study. The sleep study was the last thing on my list and I completed it Monday night. It was supposed to be a split study, but it didn't go well. I was anxious and scared from the beginning and the employee running the sleep lab that night was less than friendly. I finally fell asleep around 11 and was abruptly woken up at 1 saying I had qualified for a CPAP and we needed to try it out. He put the full mask on me, the ResMed Mirage Quattro, and strapped me in. The moment he strapped me in I knew it wasn't going to be good. Instantly my heart was racing and I was having even more problems breathing. He then turned it on and it got even worse. I seemed to be suffocating even though the employee kept telling me that "I couldn't be suffocating because it was air coming into the machine". He kept asking me if I was okay and I kept telling him no. So then he said he needed to turn the pressure up that this would help. It didn't and I ended up pulling the mask off. He asked me if I wanted to try the nasal one and I said sure. He brought me in a Phillips DreamWear Nasal lab mask, but then proceeded to tell me that it wouldn't work because I was a mouth breather. He put it on anyway and that was even worse! I literally ended up ripping it off my face. The gentleman working just kept telling me that this is the Gold Standard to treat sleep apnea and this were the only two types of masks available and I jsut needed to try it. He didn't get it, I wasn't trying ot be difficult it was literally causing me to freak out. I ended up telling him no that I wouldn't be trying it that night. He said he would then continue the sleep study as a diagnostic study but that my doc would certainly be requiring me to come back when the CPAP was ordered. Then I was so upset that I really couldn't breath and I couldn't go back to sleep. I laid in bed watching TV, tossing and turning, and intermediately playing on my Kindle until 4 am when he appeared back in my room to ask if I was okay. At which time I told him no I wasn't okay and that I wanted to go home. He told me that he only had 2 hours of study time and could I just stay another hour to get that time. I told him that it wouldn't do me any good to stay the other hour because I wasn't going back to sleep and I wanted to go home. At which time he finally came in and unplugged me. I know have such anxiety over the sleep clinic there is no way I can ever even consider going back. I am concerned for what the pulmonologist is going to tell me about all my test results and am just not convinced that the sleep apnea is causing my daytime shortness of breath. Any advice or information you have to give would really be helpful. Thanks!
Mountainprincess--I am sorry you had such a bad experience with your sleep study. It reminded me of my first sleep study, in which I was so panicked about what was happening that I only slept 6 minutes--not enough time to gather any data. I do think patients need better preparation as to what will occur during a sleep study.
Regarding the shortness of breath during the day, I have not experienced this but I noticed you got a full battery of tests. The pulmonary tests should reveal more about why this is happening to you. I am wondering if you received a pulmonary function test, also called spirometry, to evaluate your breathing? The pulmonologist should be able to get to the bottom of this issue. It may be something else entirely. Good luck to you and keep us posted. Know that you are not alone.
Thanks for the caring words sophie. I have done spirometry twice now. The first time was a basic test and the second test was more in depth. I'm still waiting for the results on the second set of pulmonary function tests.
I also forgot to mention in my original post that the difficulty breathing during the day is really my only complaint. I have a little bit of an increased heart beat off and on but really that's it. I'm not overly fatigued. I'm not falling asleep during the day. I don't feel like i have to have a nap every day and really don't enjoy napping. I don't have problems sleeping and I rarely wake up during the night. My husband used to complain about my horrible snoring and said i could rock the house. He also said i used to gasp for breath in the middle of the night too. However he says i have quit snoring or gasping in at least the last 3 months.
Sorry to hear you had a bad experience. I did my sleep study at home, and it did not go well either. I was very anxious as I was worried the test was going to say I needed to go on a PAP machine, and I really, really, did not want to. A few times I thought about getting up and throwing the whole thing out the window, but then thought about the cost, and decided against it. In any case I got through it, and they said it was enough for a diagnosis, and now I use an APAP every night.
The good news about your experience is that if they offered you a PAP machine at 1:00 AM they must have enough data for a diagnosis. And it would appear you have apnea to the degree it requires treatment, which perhaps is not such good news. But, apnea is treatable, and much better to have something you can do something about. The other good news is that the second half of the night was likely going to be a titration test to determine how much pressure you need for a CPAP. The titration test is not really necessary, unless they detected something unusual. Instead they could give you an automatic machine, APAP, and let you do a home trial at your own leisure. Just make sure they set it up in the office for you so you feel you are comfortable and getting enough air.
You should ask for a written copy of your sleep report so you know in detail what they found.
I was also thinking that if they tried to give me the cpap that they must have enough information to make a diagnosis. I am glad to hear that I should be able to do a home trial. Yesterday I was adamant i was never using a cpap. Today i have decided that if it would help me breath and I could try it at home it might work out.
Just to be clear, what they do is going to depend a lot on the clinic and your insurance, your country and region... Technically I believe it is quite possible to go directly from a diagnosis to an APAP machine, if there are no complicating factors. Whether they will do it or not may require some negotiation. I would go at it from the angle that you do not want to do another in lab titration test. Also, ask for the report and discuss whether there is any indication that an APAP would not work for you.
Thanks I really appreciate the advice. I live in the US in Wyoming and do have insurance. My insurance does seem to be pretty good, I haven't had to preauth any of the services I have had. I also checked and they pay 80% of DME. At this point I guess it's just a wait and see the doc situation. Unfortunately I don't know how long that will take as he comes into town from Nevada and only comes in a couple weeks a month.
In general most insurance companies are supportive of going straight from diagnosis of obstructive sleep apnea to a trial APAP machine. That is because the machine is likely to cost less than the additional sleep study. If at all possible you want to do it as a trial, because you may or may not adapt well to using a PAP machine. The other option depending on your apnea severity may be the use of a dental appliance. They tend to be 2-3 times the cost, but also may be covered under your health care insurance rather than your dental insurance. Here is a link to an article that may be helpful in making a decision on what way to go. I think it is fair and well written based on my experience with PAP treatment. I have not tried the dental appliance (MAD) option.
How simple would it be for someone to have given you a brouchure about what to expect during your sleep study and then talk about it or answer questions before actually taking the test? This is like telling someone who has never driven a car that they are going to test your knowledge of how a car works and make you take a driving test and if you don't pass you can never drive again. The LAST thing you need is to go into a study like this stressed because you don't understand what will happen, what MIGHT happen and what to expect. We have a LONG way to go in this battle. I am so very sorry you went through this.
