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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That is a hilarious mind picture Bernese! If you had come staggering out of a bar, I would imagine folks may have thought ET had landed. Did the study work out with the tester getting good, usable results? Do you wear a CPAP?

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@gman007

That is a hilarious mind picture Bernese! If you had come staggering out of a bar, I would imagine folks may have thought ET had landed. Did the study work out with the tester getting good, usable results? Do you wear a CPAP?

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Probably didn't help that I was wearing a tee with the following: Life is like a bicycle. If you want to keep your balance, you must keep moving forward". At least, it was Rochester, MN. The sleep study produced usable results. I do wear a CPAP that has improved my sleep a lot. It did take months to get used to it.

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@maureercria

I understand. I have had two sleep studies and they called mine mild sleep apnea. I found that when using the masks, it prevented me from breathing as well as without it. I since found out I had multiple things in my nose blocking breathing, but even with those things fixed, I don't sleep well or long. I have a long list of discomforts that also wake me up including being a light sleeper. It seems like this is probably my life now. It certainly gets old being tired most of the time.

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Boy! That sounds just like my situation.

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A great story! I hope that one is written down for the grandkids or other family member to break out from time to time. I am glad you have gotten used to the CPAP; I am a huge advocate as I know lots of stories about people who did not restart breathing during the night. One was a friend of a friend while I was awaiting my machine. Sure seemed like a sign to me!

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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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