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.

Interested in more discussions like this? Go to the Sleep Health group.

My husband has been using a CPAP for years. His first sleep study was done in a sleep lab on the night of Sept. 10, 2001. He cannot sleep without the machine.

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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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Hello @gman007 Gary…
Are you referring to my post?
Darlia

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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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Thank you for the condolences. I hope you find a happy solution to this.. it's no fun to suffer. I do too . . I'm hoping that to post about the positive side of the Dr care vs the negative side will be encouraging. I would suggest looking for help from going to the Mayo Clinic or a new Neurologist in your area. Does anyone have a recommendation for a sleep Neurologist? Where do you live Bax?
We all have Drs who don't listen to us or make us frustrated at times and I'm no exceptions .. so posting the positive view is encouraging while the negative brings us down more! Who agrees with this?
Darlia

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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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I think I was referring to tbaxter's post as mine was made 3 days ago.

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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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Yes, I am positive, because I had not read your post until just now. Sorry for any confusion.

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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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Hi,I'm feeling the same way like @bernese53 a2nd it started to hurt on the right lower side of mt nose and then I got two nose bleeds and that was like two weeks ago amd now the left lower part of nose is hurting again but I havent had any nose bleeds recently but the left side hurts a lot more then the right side did
What can I search up to heal it??

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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.

REPLY
@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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