CPAP Intolerance

Posted by Bax @tbaxter33, Feb 20, 2018

Over the years, I have had two separate sleep studies. Both were absolutely horrible experiences. I have insomnia anyway -- since childhood -- so that equipment simply made it horrible. I was freaking out. I think about 4:30 AM on the last one, they broght me some ambien, so I may have dosed a little bit between 5:00 and 5:30 AM, at which time they annoucned the study was over. Both studies said "severe sleep apnea". Of course, I don't know how they could diagnose that on about 30 minutes of sleep. Anyway, on both occasions I tried hard to use a CPAP for weeks. Those were about the worse 4 months or so of my life. Conclusion: If you want me to sleep any, I do not use the machine. If you want me to use the machine, I will get far, far less sleep than using it. I just cannot imagine how anyone can tolerate them? I have tried various masks including the little nose pillows. I find a comfortable spot and I feel air blowing in my eyes, which causes me so much anxiety. I was shamed -- terribly shamed -- by providers when I would tell them that I just cannot do it. Every single proivder now asks me about it and feel like they need to read me the riot act about what may happen if I don't use it. Nobody understands the situation -- nor do they try. Yes, I am extremely tired many days, but less tired than trying the machine and getting so worked up about it every night. And, they wanted me to take it when I travel ?!?! Nope, not going to happen. Ever. My memories of wearing the mask -- "I cannot wait to get this thing off so I can get a little bit of sleep". Frustrated as can be here.

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@bernese53

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

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I have been using Vicks vpor Rub in my nostrils...helps a lot!

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@gman007

@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.

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Hello, I use a CPAP machine and have been trying to get use to a mask when I broke out and ended up with a staph infection on my face. I understand the whole law thing and I am told I cannot be qualified for a new mask refit of any kind until april 10th which at that time my doc already sent a script for a nasal pillow do you know of any way to receive it earlier besides a lengthy insurance type appeal?

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I had two sleep studies and I also tried two different cpap masks at home. I had some of the same experience. I slept less and was more stressed with the mask. It would blow air in my eyes and at times would wake me up with a big gust of air making my cheeks blow out like a chip monk with nuts in its cheeks. It also squealed and woke me up as I rolled over on the hose. I also have to go to the bathroom frequently and every time that I got up, I had to undo the hose and then refasten it again. When the mask with the parts that went to the nostrils would slide over, it would stop my air supply. I have had extensive nose surgery since then for 3 things that could have affected my breathing and should have been looked at prior to sleep apnea tests. Those things were a 90% deviated septum, a swollen turbinate that blocked air, and collapsing nostrils from deteriorated cartilage with aging which required plastic surgery to have the nostrils stay open. I didn't realize I had those conditions and they tell me my nose is still healing so that's all I know for now. I do think I am breathing better than I was.

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@tbaxter33

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).

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Go to different doctors until someone listens.

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@tbaxter33 -- thinking of you and the CPAP that just did not work for you at all.

I recall you mentioned you felt the doctor shamed you over this, which would sure feel terrible. Did your doctor ever present any alternatives? Have you found any in your research?

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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??

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@andreadawn

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??

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Hello @andreadawn, Welcome to Connect. I have had the too much pressure problems in the past and was able to adjust the pressure after talking with my sleep medicine doctor and care team. I also don't use the heated tubing or humidifier tank because it seem to make my congestion worse.

Here's a YouTube video that explains how to check and change the pressure.
-- How to Adjust Pressure and Settings on ResMed AirSense 10 Autoset CPAP: https://www.youtube.com/watch?v=fcPp1i0XuYU

I wouldn't think the water retention and ankle swelling would be related to using you CPAP.
Have you discussed your ankle swelling and symptoms with your doctor?

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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.

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@merrilyzi

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.

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Welcome @merrilyzi, Here are a couple fairly recent posts from member discussing complex sleep apnea in other discussions:

@kb1942 shared their experience here - https://connect.mayoclinic.org/comment/333412/.
@tacitsentinel shared their experience here - https://connect.mayoclinic.org/discussion/how-do-i-keep-blood-pressure-in-check-with-dysautonomia/
Here is the search results with links for members who have posted about complex sleep apnea: https://connect.mayoclinic.org/search/?search=Complex+Sleep+Apnea&pg=2

Since you also mentioned having central sleep apnea you may also find the following discussion helpful -- Can a CPAP machine treat central apneas?: https://connect.mayoclinic.org/discussion/can-a-cpap-machine-treat-central-apneas/

I also have to sleep on my side and wear a full face mask for my OSA. My events will go up if I sleep on my back. Have you discussed your symptoms/problems with your sleep medicine doctor or care team?

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I'm trying to find out as much info as I can on my own as My Primary MD knows little about Complex sleep apnea. My ENT tried 2x to reduce my Turbanines unsuccessfully and recommended I see a Neurologist who specializes in sleep apnea. Appointments are few and far between. My sleep Doctor covers a large area and is difficult to get ahold of. I have never been told I could control my own pressures. If I call about an increase in events I have to take my machine into a supplier. Raising the pressures never seems to help much. I am always tired. I was hoping to chat with someone who conquered Central Sleep Apnea with use of the machine and good fitting mask and sleep positioning. My problems would be solved!

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