CPAP Intolerance

I don't know if the term "sleep apnea" was used 20 years ago but I know that recent studies show that sleep apnea can lead to serious problems....heart issues...stroke....dementia, etc. I had an episode of Transient Global Amnesia in November 2016..it was horrible. I saw a neurologist at Mayo who suggested a sleep study because I was having some memory issues. I have mild sleep apnea and was given a CPAP machine in May 2017. I hated it....I struggled with the mask....it felt like someone was trying to smother me. I had to figure out a way to deal with my anxiety whenever I put the mask on. I started to wear it a few minutes at a time during the day....just walking around the house. After 6 months, I can wear the mask at night and do sleep better with it. I still struggle at times. I worry though about untreated sleep apnea. @tbaxter33, do you have health issues that could get worse with the apnea? I am so sorry using a CPAP has been impossible for you.

Wishing you the best,

Bernese53

@baxter33, I certainly can understand your frustration. I have used a CPAP/BiPAP for about 15 years and I will not even take a short nap in the afternoon w/out wearing mine. My mother needs one, but simply can not tolerate the mask or anything on her face when trying to sleep. I have recently had my pulmonologist wanted me to have higher pressures and I began swallowing air. When I turned my pressure back down, i had my hand slapped, but it was either be a little more tired, based on their calculations, or wake up with a stomach full of air and in tremendous pain. I understand the tired for one reason or the other and it is not acceptable that you be shamed by your other providers. When I was in business, we would explain to our attorneys that they were there to explain the law, but we had to run a business and if we got ourselves in a bit of a spot, they were there to minimize the damage. I feel the same way about my Docs. I understand what you would prefer I do, but it is not going to happen and I am paying you to keep me as healthy as possible without me walking or running 3 miles a day. Would it be fair to assume that you initially had a sleep study because of loud snoring? If that was the reason, have you tried some of the other methods that help some people who have that problem? There is a surgery that can be done to help with the apneas, but I think it is only recommended for a small percentage of people. Hope you can find some type of alternative.

Thanks much for the reply Gary. Yes, initially it was because of loud snoring. The first sleep study itself was not nearly as bad as the second one it seemed, so I think they did get some usable data from it. Again, the term was "severe" to describe the degree of the condition. That first one though was the one that tainted me due to the follow up visits. I tried so hard to tell the female provider that I simply could not sleep with any type of mask about my face or nose. You are right - I did get the feeling of smothering as well with the mask on. After a few weeks for trying it, I was a literal mess. The lack of sleep and associated anxiety (fed on each other, I think) was taking me down. Yet, the provider was harshly telling me that nobody else has this problem and I just had to do some things I didn't like. I tried to tell her that it was not that I didn't like it, I could not use it. She did not buy that one moment. I think on the second study, I was so uptight knowing what had happened before that it was a total failure. When I could not tolerate the machine again, I gave up after about two follow up visits with the different doc on this one. He said either use the machine or lose weight. So, knowing that I would fail at both of those, I gave up. That was about 4 years ago. Today, because I have been so tired, I begain to look at machines online, which sent me into a terrible anxious state complete with sweaty hands, trembling, and fast breathing. I had to stop that quickly. No, nobody has offered any alternative to the CPAP at all. I enquired about other things several times, and the doc would not discuss them. He simply said the CPAP is the gold standard and that I what I needed. So, I remain deeply shamed over not being able to do it as I must be a failure at it due to the provider's harsh lack of trying to understand (mostly that first one).

I was told that my bipap was set on 4 but I'm not sure if it is. I feel like too much air is being forced in me after the ramp period is over. I have the Res med 10. Also I have bloating and have gained a lot of weight. I was actually hoping for the opposite result. Could the machine being set on too high of a pressure cause this. I am great during my ramp time but when it switches to the overnight pressure it seems like it is too strong.
Also I have the heated tubing which I keep turned off and I keep the humidification turned off as well because it is very humid in NC most of the time. I still seem to retain water terribly since I started using this machine. My ankles swell and of course the docs all say it doesn't cause that but people I have talked to say that it does. I have been using this for 3 years now. Does anyone else have these problems??

I see most of these post are from 2018! I have been diagnosed with Obstructive sleep apnea since 2014. I have had the same problems that have been mentioned above. I need a full face mask and tried many before I found what worked or at least was better than others. I had a second sleep study which confirmed the OSA with a change in pressures as events had risen. I then had a third sleep study and was diagnosed with Complex sleep apnea which means I still have OSA and now central sleep apnea. I absolutely have to sleep on my side and NEVER on my back. My events go up considerably if I end on my back somehow. I could go on and on with the problem but what I want most is to be able to chat with someone else who has Complex Sleep Apnea to see how he/she has overcome some of the problems I have.