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.

@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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@merrilyzi

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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You mentioned your ENT tried to reduce your turbanines. Do you have difficulty breathing through your nose?

The reason I ask is that I have a deviated septum and met with an ENT at Mayo who explained all of the options for treatment, one of which I think was what your ENT tried. After he explained the risks involved and that it could make it worse, I opted for the alternative to surgery and am happy I did. He prescribed a Mayo Clinic proprietary nasal spray. The 3 ingredients are Mometasone to reduce inflammation, Ipratropium to reduce nasal drainage and Diphenhydramine which is an antihistamine to help reduce nasal drainage. The product description on my prescription is MOMET 0.033% – IPRA 0.02% – DIPH 0.02%.

The nasal spray worked really well and I used it for about 3 months along with a twice daily nasal sinus rinse. I transitioned after that to using a twice daily nasal rinse and recently switched to a stronger rinse using Xylitol after doing a little research — Xylitol nasal irrigation in the management of chronic rhinosinusitis: a pilot study: https://pubmed.ncbi.nlm.nih.gov/21994147/.

I've also used a Hypertonic saline rinse which works well but was a little strong for my nose — Hypertonic Saline Versus Isotonic Saline Nasal Irrigation: Systematic Review and Meta-analysis: https://pubmed.ncbi.nlm.nih.gov/29774747/

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@merrilyzi

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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I'm not familiar with Complex sleep apnea but I saw in the information that one of the alternative treatments is a bi-level pap (bi-pap). I just recently started using one after having a c-pap for 3 years and it has been a game changer for me. The pressures can be set for both the inhales and exhales. It took me almost 3 years to understand and be able to articulate what was happening. I would wake up feeling like I was being suffocated with a lot of pressure and tightness in my chest. (Heart issues were eliminated) Within just a few minutes of use I could tell the difference and knew that we had found the answer. When I was able to explain that I couldn't push out a breath, was when the pulmonologist suggested I try the bi-pap. I have energy again and sleep comfortably all night. I hope you find an answer soon.

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@betzjo

I'm not familiar with Complex sleep apnea but I saw in the information that one of the alternative treatments is a bi-level pap (bi-pap). I just recently started using one after having a c-pap for 3 years and it has been a game changer for me. The pressures can be set for both the inhales and exhales. It took me almost 3 years to understand and be able to articulate what was happening. I would wake up feeling like I was being suffocated with a lot of pressure and tightness in my chest. (Heart issues were eliminated) Within just a few minutes of use I could tell the difference and knew that we had found the answer. When I was able to explain that I couldn't push out a breath, was when the pulmonologist suggested I try the bi-pap. I have energy again and sleep comfortably all night. I hope you find an answer soon.

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Thank you for your reply. I have heard of Bi-Pap and my sleep apnea Dr did talk about it if sleeping on my side doesn't work. I does work and I have fewer events of apnea a night but still am tired all the time and have a head ache every morning. I do see him in July and will discuss it then.

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I tried CPAP for some weeks and quit: too cumbersome and too hard to keep tight snug fit on my face. I could not sleep with it. I really tried.

I went to a custom mouthpiece that I sleep with every night. After adjusting to it, I sleep well with it. It pretty much corrects my sleep apnea.

Hope this helps.

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You r not alone re: inability to get used to a cpap machine. I am sure there r thousands and thousands of us. I also tried numerous appliances and would do meditative sessions and melatonin at bedtime. Falling asleep with headgear on just increased my anxiousness about the whole headgear- air blowing in my eyes, hair pulling from my scalp etc. after 3 months on two separate occasions I just said phooey I am DONE! I bought a foam wedge from Costco and virtually now sleep sitting up. I have not tried it on my side yet( recovering from TKR) but will see if sleeping in my side and wedge will work. So don’t feel guilty or have anyone put u down. There ARE people out there who cannot get used to a cpap! BTW , I had mouth piece ( very elaborate) made and used for a year until it began to shift my jaw and cause me pain and jaw clicking. Also tried for Inspire but drs said I don't fit sleep apnea criteria for that device and Medicare payment. So crazy because My sats go into the 80’s during REM sleep. So try a wedge, accept the sleep issues and don't beat yourself up. You are not alone!

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@tbaxter33

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

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Has anyone mentioned using a oral appliance to you for treating sleep apnea? When I was first diagnosed I chose to try the appliance. It took getting use to but I didn’t have the mask and machine to deal with. My dr had me do a sleep test with the appliance and it worked great only 2-3 apneas per hour. (I have severe sleep apnea).
Due to some dental problems sadly I’ve had to resort to the C-pap machine. I struggle with it all the time. If I can manage to use it I can tell a difference in my balance, my blood pressure how I think and other things. But even though I know I need to use it I still struggle.
Maybe the oral appliance would help you.

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@cooper07

Has anyone mentioned using a oral appliance to you for treating sleep apnea? When I was first diagnosed I chose to try the appliance. It took getting use to but I didn’t have the mask and machine to deal with. My dr had me do a sleep test with the appliance and it worked great only 2-3 apneas per hour. (I have severe sleep apnea).
Due to some dental problems sadly I’ve had to resort to the C-pap machine. I struggle with it all the time. If I can manage to use it I can tell a difference in my balance, my blood pressure how I think and other things. But even though I know I need to use it I still struggle.
Maybe the oral appliance would help you.

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Welcome @cooper07, Thanks for sharing your experience with the oral appliance for sleep apnea. I still struggle some with my CPAP also but keep at it because I know it is helping me and I feel much better in the morning when I wake up. My biggest struggle is due to the full face mask and what it does to my nose. I've tried several and the one I have now works fairly well but I'm still looking for a better one and have tried many. I would love to be able to use a nasal pillow mask but I would also have to have something to keep my mouth closed. I did try a chin strap but didn't like it much. I also tried some medical adhesive tape on the lips but found out it didn't come off as easy as they said it would.

What kind of CPAP mask do you use?

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Does anyone have the experience of the Cpap/Apap making it harder to breathe? I wake up at times with my breathing feeling constricted or obstructed. I know it’s not my imagination because I check the o2 and that is also low. It feels better when I take the mask off. I also have GERD which the Cpap aggravates and wonder if that is irritating my airways.

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