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Have you been diagnosed with a sleep disorder such as sleep apnea?
A few weeks ago I was given a sleep study for sleep apnea. I was experiencing headaches while waking up, a fast heart rate in the middle of the night, would wake up feeling as if I wasn’t taking in enough oxygen , and would get easily fatigued in the morning. My PH team suspected that I was retaining co2 and having episodes of paused breathing. Sure enough , I was given a diagnosis of central sleep apnea and will have to use a bipap machine at night.
Has anyone experienced these symptoms at night and have you been given a diagnosis of sleep apnea? If so, what advice would you give to those newly diagnosed and any helpful tips for getting used to a bipap/CPAP machine?
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10 Replies
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Hi, Brittany. I was diagnosed with sleep apnea over 15 years ago. They put me on a CPAP and left me to my own devices. I had a hard time finding a mask I liked – they all leaked and would wake me up with a “farting” sound so many times at night I wasn’t sleeping. I couldn’t get anyone to help with this problem so I stopped using the machine. Fast-forward to a couple of years ago – new sleep doctor. He worked very closely with me. I still had a hard time with the masks. I finally found one I liked, but it still leaked. So it was hit-or-miss as to whether I actually used the CPAP. Now to today. After my diagnosis of PH, my PH doctor said that it was because I didn’t use my CPAP machine. My lungs had been starved of oxygen at night which caused the whole PH thing. I hadn’t really felt like I had a good excuse to use the CPAP before – now I did. Once again, I’m trying to find a mask that worked. I found one I really liked, but once again still had the same problem with leakage. Finally, my dear husband was looking on the Internet one day and found this shield that goes between your face and the mask that stops the “farting” noises. It was a miracle and I was able to sleep through the night. This product is called Remzzzs. It is a face mask liner. (I am not compensated for this!!!!) Anyway, my advice is to find a way to use the CPAP as your doctor prescribes. I do not have headaches or feel disoriented upon waking anymore. I get a good night’s sleep. I wish I had taken it more seriously sooner so that I might not have gotten PH! Good luck! (Sorry – really long answer to your simple question!)
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Thank you for the response Beverly, it is much appreciated. The first night with the bipap machine mask I too had a really hard time. I haven’t received my home one yet, but just the one from the study made it so hard for me to sleep. I will keep this in mind if I have any “farting ” noises with it in the future. I am confident that it will help me and my doctors are even hoping that it will help increase my lung function a bit during the day. I am going to wear it with resting at first too in order to get used to it being on my face. Once I find relief from using it I feel as though it will seem worth it ! Thank you again for your response.
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Hi Brittany…yes. My pcp diagnosed PH via an echo and immediately sent me to a sleep study which showed I stopped breathing 48 times an hour. I haven’t slept a night since (that was 2012) without the cpap. As far as tolerating it, adjust, adjust adjust!! While you’re laying down, adjust the straps enough that there’s no leakage but not so tight you are uncomfortable. The result for me was I sleep fully, not exhausted during the day, and actually have found it comfortable and comforting! Eventually you’ll adapt to the sounds. The important thing is to USE it, just do it!
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Thank you for the response Russene. I’m glad your PCP made you go and get a study done. At least they were being proactive. I am hoping to have the same positive effects that you are having with using yours. Noticing good changes will definitely help me with wanting to wear it every night. I’m sure it will take some adjusting to. Hoping for it to go as smooth as possible. Thanks again for the advice !
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I was diagnosed with sleep apnea in 2011 and slept with my CPAP every night except one until January 2018 when I had my transplant. A repeat sleep study in April 2017 showed no apnea but I slept better with the CPAP and oxygen together. We are doing another sleep study but the feeling is that my apnea is resolved since it wasn’t used in the hospital and I had no problem with stopping breathing. I traveled everywhere with it for 7 years. I got used to it after a few days and was afraid NOT to use it. I felt so much better when using it, had more energy, and less fatigue/sleepiness during the day.
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Hi Kaye,
I’m glad that the CPAP helped you. I’m hoping it does the same for you. That must be a good thing to feel like you could get off of it but also scary at the same time to think about getting off of something that has helped you for so long. All the best to you! -
For just about all my life I’ve had insomnia. That is until about 2 years ago when my shrink decided to try a new medication for PTSD (which I have). I use to call thwm PTSD nightmares and now with this medication, my sleep has gotten so much better. I was only averaging 2 or 3 hours a night and now I get about 6 or 7 hours! Psyched! But while I was in the hospital they noticed everytime I fell asleep, my oxygen would dip a lot. So along with everything else, they want me to get a sleep study done to see if I have sleep apnea.
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Hi Rick,
Sorry for the late response, I just am seeing this message now. That is good that they were watching that while you were in the hospital and are taking the next right steps for you. The monitoring isn’t too bad. Are you starting off with doing a home sleep study test or are they setting it up so that you are doing it in the hospital? Wishing you the best! Please keep us all updated.
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I was initially diagnosed with sleep apnea in 1997. I currently sleep with a CPAP which has my oxygen line connected when I use it. It is another tool which takes stress off of the heart. With PH, continued stress on the heart is the main factor which leads to heart-failure, then death, so it is crucial for us to do everything we can to reduce stress on the heart. This is why it is important to use your CPAP.
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Hi Dori,
I couldn’t agree more. This is what I was told too. With the pauses in breathing and the added stress from the oxygen fluctuations that go along with that it is so important to use. I am on BIPAP and recently have been feeling like there is something caught in my throat and I have been feeling congested at night. It almost feels like a hairball or something. I think I will give my doctor a call today just to see if she needs to adjust any pressures or anything.
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