1. < Sleep Health

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 Support Group.

Bax | @tbaxter33 | Feb 21, 2018
In reply to @tbaxter33 "Thanks much for the reply Gary. Yes, initially it was because of loud snoring. The first..." + (show)
@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).

Jump to this post

I am so sorry about your late husband. I have obviously not been successful in describing my issue. CPAP is not an option - Period. I have spent much sleepless time trying. I disagree with your assessment of the docs. I was made to feel much shame and that there was something wrong with me for not trying it. Thank you all for meaning well -- perhaps there is just something wrong with me. I had hoped for alternative suggestions. Trying to find a way to withdraw from the group. Apologies for bringing my issue here

REPLY
1 reply
Moderator
Lisa Lucier, Moderator | @lisalucier | Feb 21, 2018

Hi @tbaxter33 -- I hope you won't withdraw from the group, because I think your topic of CPAP intolerance is an important one.

I have not had a sleep study, but I can completely imagine trying to sleep in a clinical setting could provoke some challenges and anxiety. I also have not had sleep apnea nor used a machine for it, but I did have a nose packed and taped after a deviated septum surgery, and I can remember barely being able to sleep at all, feeling like I was going to suffocate with having all this "stuff" in my mouth and nose area.

As you can see, you are not alone in having challenges with sleep studies and with wearing a CPAP machine. This discussion you started has so far provided practical tips trying to overcome issues with using the machine. But what about ideas for people like you for whom the machine is simply NOT an option and for whom the hospital sleep studies have been unsuccessful?

@tbaxter33, have you tried a home sleep study? Here's more info from an Mayo expert Q&A https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-diagnosing-sleep-apnea/

REPLY
6 replies
rosie111 | @rosie111 | Feb 21, 2018
In reply to @lisalucier "Hi @tbaxter33 -- I hope you won't withdraw from the group, because I think your topic..." + (show)
@lisalucier

Hi @tbaxter33 -- I hope you won't withdraw from the group, because I think your topic of CPAP intolerance is an important one.

I have not had a sleep study, but I can completely imagine trying to sleep in a clinical setting could provoke some challenges and anxiety. I also have not had sleep apnea nor used a machine for it, but I did have a nose packed and taped after a deviated septum surgery, and I can remember barely being able to sleep at all, feeling like I was going to suffocate with having all this "stuff" in my mouth and nose area.

As you can see, you are not alone in having challenges with sleep studies and with wearing a CPAP machine. This discussion you started has so far provided practical tips trying to overcome issues with using the machine. But what about ideas for people like you for whom the machine is simply NOT an option and for whom the hospital sleep studies have been unsuccessful?

@tbaxter33, have you tried a home sleep study? Here's more info from an Mayo expert Q&A https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-diagnosing-sleep-apnea/

Jump to this post

I agree. I am in a similar situation, panicked when I did the portion of the sleep study with the mask. I want to use one, but not sure if I can. It will be helpful to hear from others who may find solutions, or not, to this problem

REPLY
Gary, Alumni Mentor | @gman007 | Feb 21, 2018
In reply to @lisalucier "Hi @tbaxter33 -- I hope you won't withdraw from the group, because I think your topic..." + (show)
@lisalucier

Hi @tbaxter33 -- I hope you won't withdraw from the group, because I think your topic of CPAP intolerance is an important one.

I have not had a sleep study, but I can completely imagine trying to sleep in a clinical setting could provoke some challenges and anxiety. I also have not had sleep apnea nor used a machine for it, but I did have a nose packed and taped after a deviated septum surgery, and I can remember barely being able to sleep at all, feeling like I was going to suffocate with having all this "stuff" in my mouth and nose area.

As you can see, you are not alone in having challenges with sleep studies and with wearing a CPAP machine. This discussion you started has so far provided practical tips trying to overcome issues with using the machine. But what about ideas for people like you for whom the machine is simply NOT an option and for whom the hospital sleep studies have been unsuccessful?

@tbaxter33, have you tried a home sleep study? Here's more info from an Mayo expert Q&A https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-diagnosing-sleep-apnea/

Jump to this post

I know many have said they have tried every mask and they probably have, but my insurance gives me a fair amount of latitude, so if something is not working, they will usually approve what my "air" company suggests. There is a new full face mask that does not rest on your forehead so you can have your glasses on if watching TV or reading and falling asleep - only way I ever get there. It has a breathable memory foam everywhere it touches your face and is the only comfortable full face mask I have ever worn. Just FYI.

REPLY
Gary, Alumni Mentor | @gman007 | Feb 21, 2018
In reply to @tbaxter33 "Thanks much for the reply Gary. Yes, initially it was because of loud snoring. The first..." + (show)
@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).

Jump to this post

@bax, I assure you that what she told you about no one having the problem, she is terribly wrong. I know many people who struggle with a CPAP and may get used to it, or may simply put it in the closet. I know the importance for me, but I am a sound sleeper once I get there and it removes my anxiety of not resuming breathing when I stop. You know what you have to do for your body.

REPLY
Mentor
Jim, Volunteer Mentor | @jimhd | Feb 21, 2018
In reply to @lisalucier "Hi @tbaxter33 -- I hope you won't withdraw from the group, because I think your topic..." + (show)
@lisalucier

Hi @tbaxter33 -- I hope you won't withdraw from the group, because I think your topic of CPAP intolerance is an important one.

I have not had a sleep study, but I can completely imagine trying to sleep in a clinical setting could provoke some challenges and anxiety. I also have not had sleep apnea nor used a machine for it, but I did have a nose packed and taped after a deviated septum surgery, and I can remember barely being able to sleep at all, feeling like I was going to suffocate with having all this "stuff" in my mouth and nose area.

As you can see, you are not alone in having challenges with sleep studies and with wearing a CPAP machine. This discussion you started has so far provided practical tips trying to overcome issues with using the machine. But what about ideas for people like you for whom the machine is simply NOT an option and for whom the hospital sleep studies have been unsuccessful?

@tbaxter33, have you tried a home sleep study? Here's more info from an Mayo expert Q&A https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-diagnosing-sleep-apnea/

Jump to this post

I've heard about the home study. I think I'll ask my doctor if I can do that next time he wants a study.

Jim

REPLY
Gary, Alumni Mentor | @gman007 | Feb 21, 2018
In reply to @lisalucier "Hi @tbaxter33 -- I hope you won't withdraw from the group, because I think your topic..." + (show)
@lisalucier

Hi @tbaxter33 -- I hope you won't withdraw from the group, because I think your topic of CPAP intolerance is an important one.

I have not had a sleep study, but I can completely imagine trying to sleep in a clinical setting could provoke some challenges and anxiety. I also have not had sleep apnea nor used a machine for it, but I did have a nose packed and taped after a deviated septum surgery, and I can remember barely being able to sleep at all, feeling like I was going to suffocate with having all this "stuff" in my mouth and nose area.

As you can see, you are not alone in having challenges with sleep studies and with wearing a CPAP machine. This discussion you started has so far provided practical tips trying to overcome issues with using the machine. But what about ideas for people like you for whom the machine is simply NOT an option and for whom the hospital sleep studies have been unsuccessful?

@tbaxter33, have you tried a home sleep study? Here's more info from an Mayo expert Q&A https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-diagnosing-sleep-apnea/

Jump to this post

@jimhd, I wonder if there is a difference in fee and if insurance will cover an in home study? They have so much equipment to be able to test different variables, I am surprised they can do the study in your home, but it would definitely be better for some.

REPLY
bernese53 | @bernese53 | Feb 21, 2018

My insurance would not pay for a sleep lab study. They would pay for a home study. I was at the Mayo Clinic-Rochester for other appointments. I had to go to the Clinic and was wired up for the study by a tech then sent back to my hotel room. Gtreat fun wandering around downtown Rochester wired up for a sleep study!

REPLY
Mentor
Jim, Volunteer Mentor | @jimhd | Feb 22, 2018
In reply to @lisalucier "Hi @tbaxter33 -- I hope you won't withdraw from the group, because I think your topic..." + (show)
@lisalucier

Hi @tbaxter33 -- I hope you won't withdraw from the group, because I think your topic of CPAP intolerance is an important one.

I have not had a sleep study, but I can completely imagine trying to sleep in a clinical setting could provoke some challenges and anxiety. I also have not had sleep apnea nor used a machine for it, but I did have a nose packed and taped after a deviated septum surgery, and I can remember barely being able to sleep at all, feeling like I was going to suffocate with having all this "stuff" in my mouth and nose area.

As you can see, you are not alone in having challenges with sleep studies and with wearing a CPAP machine. This discussion you started has so far provided practical tips trying to overcome issues with using the machine. But what about ideas for people like you for whom the machine is simply NOT an option and for whom the hospital sleep studies have been unsuccessful?

@tbaxter33, have you tried a home sleep study? Here's more info from an Mayo expert Q&A https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-diagnosing-sleep-apnea/

Jump to this post

I don't know the details, but I would think that a home study wouldn't be as definitive as at a lab.

Jim

REPLY
bernese53 | @bernese53 | Feb 22, 2018
In reply to @lisalucier "Hi @tbaxter33 -- I hope you won't withdraw from the group, because I think your topic..." + (show)
@lisalucier

Hi @tbaxter33 -- I hope you won't withdraw from the group, because I think your topic of CPAP intolerance is an important one.

I have not had a sleep study, but I can completely imagine trying to sleep in a clinical setting could provoke some challenges and anxiety. I also have not had sleep apnea nor used a machine for it, but I did have a nose packed and taped after a deviated septum surgery, and I can remember barely being able to sleep at all, feeling like I was going to suffocate with having all this "stuff" in my mouth and nose area.

As you can see, you are not alone in having challenges with sleep studies and with wearing a CPAP machine. This discussion you started has so far provided practical tips trying to overcome issues with using the machine. But what about ideas for people like you for whom the machine is simply NOT an option and for whom the hospital sleep studies have been unsuccessful?

@tbaxter33, have you tried a home sleep study? Here's more info from an Mayo expert Q&A https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-diagnosing-sleep-apnea/

Jump to this post

That was my initial impression but the doctor I saw at Mayo told me that the home studies are close to the lab studies in terms of accuracy.

REPLY
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