Dr. says I'm not tolerating CPAP

[bobbi4272]

I've posted before regarding the problems I've been experiencing - congestion, sneezing, getting sick. My doctor finally decided I'm not tolerating CPAP. She recommended an oral appliance but at my last visit had said that was a last resort. She said something was better than nothing. I know my insurance won't cover an oral appliance and it would probably cost more than an APAP machine.

I told her I wanted to try APAP with heated tubing and she initially told me no. She said it would cause central apneas. At first she wanted to put me on the AutoIQ (?) for 30 days and then set me back up with CPAP. WHAT???? I was armed with information from this site so I explained why I thought the APAP would help. She called the doctor who was head of the office. She wanted him to tell me no, but he said if that's what I wanted to try, go for it. He said I could be on it for the rest of my life. It wasn't what she was expecting him to say, but who cares?

She did agree to document all the problems I've had, so hopefully my insurance will cover it. I hope it doesn't take forever to go through. I expect the request will be denied and I'll have to appeal it. I'll look through some of the posts regarding insurance and see what tips are there. I'm prepared to pay for it out-of-pocket but would like some idea how long to wait regarding the insurance. I don't want to wait too long because I want to feel better, but I also don't want to pay for it if there is a chance my insurance will cover it. After fighting with them, they finally agreed to cover the heated tubing but it took almost 4 months.

The RT at the office gave me the Bella Loops for the nasal pillows and nasal mask. She said to try them out and see if it helped with the leaks. I tried them when I took a nap Friday. I slept for 3 hours and woke up sneezing and severely congested. I felt awful but the loops did seem to help with leaking. They hurt my ears but I liked the fact there wasn't anything to pull my hair or leave massive marks on my cheeks. I am going to contact the DME again and get a different mask. I've been through 4 in less than a month. I've decided I either need headgear that is more substantial or to try and get used to the Bella Loops. I won't know until I start using a machine again but I want to have a couple of masks on hand.

She also gave me the Zzoma positional pillow to try. Until I get a new machine, I'm not going to use my CPAP machine. I've been using the pillow since Friday. My husband says he's only heard me snoring very quietly a couple of times. During my titration night, my AHI was only 3.3 on my side. The pillow is a little weird, but not uncomfortable. I have fibromyalgia and sleeping in one position seems to make it worse but I'm going to keep at it and see what happens. The congestion and sneezing are gone, so I'm happy about that.

I'll keep trying to figure this out. I would have quit if I hadn't stumbled onto this forum. Thanks. And thanks for listening!

[GayleM]

My husband and I both had no issues with insurance approval and got our machines right away. As far as the nasal pillows, if you are getting marks on your face you may have it adjusted too tight. If it is so tight on your nose that it smashes it, definitely too tight. I use the Swift FX nasal pillows and my headgear is not tight at all and I have no issues with leaks. I tried the Bella Loops but didn't like them, they hurt my ears. Hopefully the congestion, etc go away quickly so you can get adjusted and get some real rest.

Another thought about the congestion. A few months after I started on cpap, my husband & I went to visit his mom for a few days. I didn't want to have to bother with taking distilled water for the humidifier, so I used my machine with the standard hose instead of the heated hose. Big mistake. The house was pretty cool and I kept waking up because the air blowing in my nose was cold. Really made me congested. Maybe yours will go away when you start using the heated hose.

[Julie]

Have you tried turning the humidifier down (or even off)? It can cause congestion and cold-like symptoms in many people.

[SleepyBobR]

I'll second that. I don't use my humidifier for that reason. I plug up solid with it; no problems without it.

[LSAT]

I've posted before regarding the problems I've been experiencing - congestion, sneezing, getting sick. My doctor finally decided I'm not tolerating CPAP. She recommended an oral appliance but at my last visit had said that was a last resort. She said something was better than nothing. I know my insurance won't cover an oral appliance and it would probably cost more than an APAP machine.

I told her I wanted to try APAP with heated tubing and she initially told me no. She said it would cause central apneas. At first she wanted to put me on the AutoIQ (?) for 30 days and then set me back up with CPAP. WHAT???? I was armed with information from this site so I explained why I thought the APAP would help. She called the doctor who was head of the office. She wanted him to tell me no, but he said if that's what I wanted to try, go for it. He said I could be on it for the rest of my life. It wasn't what she was expecting him to say, but who cares?

She did agree to document all the problems I've had, so hopefully my insurance will cover it. I hope it doesn't take forever to go through. I expect the request will be denied and I'll have to appeal it. I'll look through some of the posts regarding insurance and see what tips are there. I'm prepared to pay for it out-of-pocket but would like some idea how long to wait regarding the insurance. I don't want to wait too long because I want to feel better, but I also don't want to pay for it if there is a chance my insurance will cover it. After fighting with them, they finally agreed to cover the heated tubing but it took almost 4 months.

The RT at the office gave me the Bella Loops for the nasal pillows and nasal mask. She said to try them out and see if it helped with the leaks. I tried them when I took a nap Friday. I slept for 3 hours and woke up sneezing and severely congested. I felt awful but the loops did seem to help with leaking. They hurt my ears but I liked the fact there wasn't anything to pull my hair or leave massive marks on my cheeks. I am going to contact the DME again and get a different mask. I've been through 4 in less than a month. I've decided I either need headgear that is more substantial or to try and get used to the Bella Loops. I won't know until I start using a machine again but I want to have a couple of masks on hand.

She also gave me the Zzoma positional pillow to try. Until I get a new machine, I'm not going to use my CPAP machine. I've been using the pillow since Friday. My husband says he's only heard me snoring very quietly a couple of times. During my titration night, my AHI was only 3.3 on my side. The pillow is a little weird, but not uncomfortable. I have fibromyalgia and sleeping in one position seems to make it worse but I'm going to keep at it and see what happens. The congestion and sneezing are gone, so I'm happy about that.

I'll keep trying to figure this out. I would have quit if I hadn't stumbled onto this forum. Thanks. And thanks for listening!

IMO....Changing to an APAP will not help your problems. Why don't you tell us what machine you are using and what the pressure setting is. APAP with a variable pressure will not make any difference with congestion. You should be using nasal rinse to clear your nose before bed, raising the head of your bed and trying a full face mask.

[Pugsy]

I don't think your sneezing or congestion is going to be resolved by changing to APAP. Those symptoms are typically related to the humidity being delivered to the mask. Either too much humidity or not enough. I get the same symptoms if I don't get enough moisture to my nasal mucosa. Others get the same symptom if they get too much moisture. There is no right or wrong..humidity needs are highly individualized.
I think I read in another thread you posted that you have tried all settings from low humidity settings to 4C or 5 C.
If you have tried both ends of the spectrum I don't know what to offer.
Which end of the spectrum is worse...low settings or the higher 5C settings?
Since you mentioned 5C...I assume PR System One in Classic Mode...can you confirm which model machine you have and are you referring to Classic Mode?

Take a look at the mask I use...does it interest you? No head gear at all. I love it. Click on the link to the Tap Pap that I have in my profile.

[SleepyBobR]

Don't just turn your humidifier down. Remove it completely from the system or empty it. If you haven't tried it that way, it can't hurt. I mention this again because my humidifier was the cause of my congestion problem and it just never occurred to my doctor or DME to suggest running without it. They were giving me steroid sprays and rinses and decongestant pills as though there was no such thing as CPAP without a humidifier. I accidentally discovered what was causing my problem when I forgot to fill the humidifier one night. Also highly recommend trying a full face mask.

[SleepyToo2]

I am using the humidifier in pass-through mode a bit just lately,although last night I turned it up a bit in the hope it would help my congestion/bloody nose. It didn't. I will go back to pass-through mode, but I will keep the tank in place even if it runs dry - it helps keep the machine quieter.

[bobbi4272]

My husband and I both had no issues with insurance approval and got our machines right away. As far as the nasal pillows, if you are getting marks on your face you may have it adjusted too tight. If it is so tight on your nose that it smashes it, definitely too tight. I use the Swift FX nasal pillows and my headgear is not tight at all and I have no issues with leaks. I tried the Bella Loops but didn't like them, they hurt my ears. Hopefully the congestion, etc go away quickly so you can get adjusted and get some real rest.

Another thought about the congestion. A few months after I started on cpap, my husband & I went to visit his mom for a few days. I didn't want to have to bother with taking distilled water for the humidifier, so I used my machine with the standard hose instead of the heated hose. Big mistake. The house was pretty cool and I kept waking up because the air blowing in my nose was cold. Really made me congested. Maybe yours will go away when you start using the heated hose.

Glad to hear your insurance went through right away. I'll keep my fingers crossed. I need to clarify about the marks on my face. The nasal pillows don't do that, neither did the Nano nasal mask. Other masks I've tried do. I get very congested and sneeze from the nasal pillows and nasal mask (although not as much from the nasal masks). The FF masks cause horrible marks, leak terribly and dry my eyes out. Someone on this forum suggested trying larger nasal pillows and adjusting them so they don't blow directly up my nose. I tried that one night and it seemed to help some. The headgear doesn't seem to work for me though. I had hoped the Bella Loops would solve that problem, but like you, they hurt my ears. I might try again when I get the APAP machine.

I do use distilled water with my humidifier and keep our bedroom very cool, thus the cold nose and condensation in the hose, plus congestion..... I'm hoping the heated tube will help.

[bobbi4272]

Have you tried turning the humidifier down (or even off)? It can cause congestion and cold-like symptoms in many people.

I have tried every setting from off to the highest. The higher setting of 4 or 5 in Classic Mode work the best but still aren't ideal.

[bobbi4272]

IMO....Changing to an APAP will not help your problems. Why don't you tell us what machine you are using and what the pressure setting is. APAP with a variable pressure will not make any difference with congestion. You should be using nasal rinse to clear your nose before bed, raising the head of your bed and trying a full face mask.

I have the PR RemStar Plus with C-Flex, model 250P (the brick). The pressure setting is 11cm/H20.

I do use a nasal rinse before bed, have tried sleeping on a wedge and full face masks. I tried using the FF mask again last week and it leaked so badly, the machine kept turning off. I haven't found a FF mask that works for me yet. I will keep searching.

As for wanting an APAP, I am hoping that the decreased pressures when I sleep on my side will help. Not having so much air blowing in my nose all night might help with the congestion and sneezing. I am hyper-sensitive to the air. Hopefully a heated tube and APAP will help solve most of the problems I've been having. After struggling with this for almost 3 years, believe me, I have tried all of your suggestions and still fee lousy all the time.

My AHI is 22, 28 on my back and 3.5 or so on my side. I would love to sleep on my side all the time and be done with it. Unfortunately I have a lot of shoulder pain and fibromyalgia, so I am still trying to come with something that will help and not cause me to feel worse when I use xPAP.

[bobbi4272]

I don't think your sneezing or congestion is going to be resolved by changing to APAP. Those symptoms are typically related to the humidity being delivered to the mask. Either too much humidity or not enough. I get the same symptoms if I don't get enough moisture to my nasal mucosa. Others get the same symptom if they get too much moisture. There is no right or wrong..humidity needs are highly individualized.
I think I read in another thread you posted that you have tried all settings from low humidity settings to 4C or 5 C.
If you have tried both ends of the spectrum I don't know what to offer.
Which end of the spectrum is worse...low settings or the higher 5C settings?
Since you mentioned 5C...I assume PR System One in Classic Mode...can you confirm which model machine you have and are you referring to Classic Mode?

Take a look at the mask I use...does it interest you? No head gear at all. I love it. Click on the link to the Tap Pap that I have in my profile.

Pugsy - thanks. I checked out the TapPap from your post. I wouldn't be able to use it. I have 2 dental implants. It sure sounds good though!

[Pugsy]

I was hoping that you had the 60 series machine with that heated hose because it would allow you to maybe get more humidity than the Classic Mode setting might give. Thinking maybe a little more humidity might do the trick since you say 4C of 5C is better but not quite good enough.
The model 250 is not compatible with the Respironics heated hose..you would need it to be 260 or some other X60 machine.
At best you can do with the 250 is a stand alone heated hose and while it might offer more general comfort in terms of warmth..I don't know if it will help with humidity itself...if you are happening to be needing more.
It's sure worth a try though.
Sorry you aren't a candidate for the Tap Pap. It's super nice to not have to deal with the head gear and all those "too tight or too loose" issues.

[jaybeem]

Did you clean your equipment before you used it the first time? Cleaned the hoses?

Do you have have allergies? If so, check my post about allergies at viewtopic/t93343/viewtopic.php?f=1&t=89 ... 25#p820125

Is your machine in a dust-free clean position (although the humidifier would help "clean" the air)?

I am not sure how one could be allergic to the filters, but a poster improved after removing the white Remstar filters. ???

If your nose runs when you use your cpap after putting one of those white filters in, you are allergic to it. I know I was.

from viewtopic/t76528/white-filters-for-rems ... eries.html

Hope you find a solution...CPAP is supposed to make things better, not worse!

[nobody]

I do use a nasal rinse before bed

I used to use the nasal rinse before bed and invariably would get plugged up from that. Now I might use it earlier in the evening if there was a lot of dust or pollen during the day but usually don't use it at all.