CPAP Not For Me

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
rockncountry101
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CPAP Not For Me

Post by rockncountry101 » Wed Aug 26, 2015 9:51 am

So my journey so far has been an arduous one. Back in July I started off on CPAP. I used a nasal mask. It tore up the bridge of my nose. It leaked. It left marks. After three nasal masks I tried the nasal pillows. Since the two days that I have tried the nasal pillows I have had a horrible sore throat and a very irritated nose. The pressure build up on my ears is unbearable. Here is the thing. When I had my sleep study my AHI was only 4.7 and my RDI only 9.5. It was so low that it wasn't even considered sleep apnea. In fact the insurance said 'no way' to coverage because I was considered to be normal. I have been tapering off my medication (from 20 mg of Lexapro and 2.0 mg of Xanax per day). The sleep doctor said that sedatives could lead to sleep problems. He also stated that weight could be a factor. I'm about 15 or so pounds overweight. Was this a misdiagnosis? I may need a second opinion. It sucks that I invested about $1,600 in the equipment and sleep study. Live and learn. I think doctors are just prescription happy these days.

nanwilson
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Re: CPAP Not For Me

Post by nanwilson » Wed Aug 26, 2015 9:55 am

rockncountry101 wrote:So my journey so far has been an arduous one. Back in July I started off on CPAP. I used a nasal mask. It tore up the bridge of my nose. It leaked. It left marks. After three nasal masks I tried the nasal pillows. Since the two days that I have tried the nasal pillows I have had a horrible sore throat and a very irritated nose. The pressure build up on my ears is unbearable. Here is the thing. When I had my sleep study my AHI was only 4.7 and my RDI only 9.5. It was so low that it wasn't even considered sleep apnea. In fact the insurance said 'no way' to coverage because I was considered to be normal. I have been tapering off my medication (from 20 mg of Lexapro and 2.0 mg of Xanax per day). The sleep doctor said that sedatives could lead to sleep problems. He also stated that weight could be a factor. I'm about 15 or so pounds overweight. Was this a misdiagnosis? I may need a second opinion. It sucks that I invested about $1,600 in the equipment and sleep study. Live and learn. I think doctors are just prescription happy these days.
I'm lost... why did you get a cpap machine in the first place if you"re apneas are so low you are considered "normal"??????? And by the way... weight is not a big factor..... there are many patients here that are skinny... just ask Pugsy.
Started cpap in 2010.. still at it with great results.

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49er
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Re: CPAP Not For Me

Post by 49er » Wed Aug 26, 2015 10:08 am

rockncountry101 wrote:So my journey so far has been an arduous one. Back in July I started off on CPAP. I used a nasal mask. It tore up the bridge of my nose. It leaked. It left marks. After three nasal masks I tried the nasal pillows. Since the two days that I have tried the nasal pillows I have had a horrible sore throat and a very irritated nose. The pressure build up on my ears is unbearable. Here is the thing. When I had my sleep study my AHI was only 4.7 and my RDI only 9.5. It was so low that it wasn't even considered sleep apnea. In fact the insurance said 'no way' to coverage because I was considered to be normal. I have been tapering off my medication (from 20 mg of Lexapro and 2.0 mg of Xanax per day). The sleep doctor said that sedatives could lead to sleep problems. He also stated that weight could be a factor. I'm about 15 or so pounds overweight. Was this a misdiagnosis? I may need a second opinion. It sucks that I invested about $1,600 in the equipment and sleep study. Live and learn. I think doctors are just prescription happy these days.
RC,

I don't have scientific proof to offer you but there have been people on the AD withdrawal boards who have had apnea like symptoms only to see them disappear when they finally get off the meds. Having said that,I would still not be too quick to give up on treatment.

First of all, even though your AHI is 4.7, having an RDI of 9.5 is nothing to sneeze at even though you are in the mild category. The RDI, which consists of RERAs, apneas, and hypopneas causes sleep fragmentation that could be impacting everything. In fact, whenever the RDI is higher than the AHI, that needs to be the first consideration.

So to answer your question, no, it might not have been a misdiagnosis as even if you don't have sleep apnea, you still seem to have a sleep breathing problem with the RDI of 9.5. I would definitely get a 2nd opinion.

Have you seen an ENT for your ear issues? Might be helpful to make sure nothing is contributing to your problems with cpap.

Wouldn't hurt to lose the weight but as Nan rightfully said in her post, there are thin people with sleep apnea.

Best of luck to you.

49er

PoolQ
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Re: CPAP Not For Me

Post by PoolQ » Wed Aug 26, 2015 10:43 am

Just a thought, but as I approach my 2nd sleep study, I am concerned that I may have a "good" night during the study. There are bad nights that my ahi is below 2 and good nights where AHI is almost 10. What is going to happen if I have a good not during the study?

You are 0.3 to 0.4 away from moderate, could you have had a good night?

You have a machine, how was your AHI doing? I wonder if your machine can be set to a non-therapy mode for several nights to see what your AHI is on more than just a snapshot one nighter?
Sleeping MUCH better now

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Goofproof
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Re: CPAP Not For Me

Post by Goofproof » Wed Aug 26, 2015 11:04 am

I think you have the title of your post reversed. To use XPAP sucessfully, requires effort, good atitude, the ability to put up with the bad and make it better. Qualities you haven't shown, yet!

All of us wouldn't do XPAP if it wasn't useful to keep us going. However, we are aware that we have Sleep Apnea, and it needs to be correctly treated for us to be all we can be. It's not something others can do for you, it requires effort, only you can put in the effort. It's your decision-making that makes the rest of your life. Jim
Use data to optimize your xPAP treatment!

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Wulfman...
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Re: CPAP Not For Me

Post by Wulfman... » Wed Aug 26, 2015 12:36 pm

I'd suggest (AT LEAST) keeping the equipment. You just never know........you may need it in the future. They may have diagnosed you just as your OSA was beginning. It could get worse at some future date. This stuff doesn't go from "nothing" to "severe" overnight.

One month of mediocre attempts to try this therapy isn't nearly long enough. For many of us, it took much longer.
Not all masks are created equal and don't work for everyone. If it/they were poorly sized or adjusted, that could account for the mask difficulties you initially experienced. I've NEVER had a properly fitted and adjusted mask inflict any uncomfortable feelings on my face. I did have one mask I only wore for three nights......and then gave up on it.......and went back to my original UMFF.
Good luck in whatever you decide to do.


Den

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rockncountry101
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Re: CPAP Not For Me

Post by rockncountry101 » Wed Aug 26, 2015 2:27 pm

Wulfman... wrote:I'd suggest (AT LEAST) keeping the equipment. You just never know........you may need it in the future. They may have diagnosed you just as your OSA was beginning. It could get worse at some future date. This stuff doesn't go from "nothing" to "severe" overnight.

One month of mediocre attempts to try this therapy isn't nearly long enough. For many of us, it took much longer.
Not all masks are created equal and don't work for everyone. If it/they were poorly sized or adjusted, that could account for the mask difficulties you initially experienced. I've NEVER had a properly fitted and adjusted mask inflict any uncomfortable feelings on my face. I did have one mask I only wore for three nights......and then gave up on it.......and went back to my original UMFF.
Good luck in whatever you decide to do.


Den

.
Believe me...I have no intentions of getting rid of my equipment. Not at all. It has no resell value and I'm not giving it away. My problem is that I have been experiencing extreme exhaustion for many years. After 2 months of compliance I do not feel any better. I don't know if the sore throat and scratchy nose are just a coincidence. I know the nasal pillow is much more comfortable that the nasal mask was. My sleepiness is during the day. At night I start to wake up. I can still go to sleep without any help and sleep through the night but wake up tired. Who knows.

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BlackSpinner
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Re: CPAP Not For Me

Post by BlackSpinner » Wed Aug 26, 2015 2:33 pm

rockncountry101 wrote: After 2 months of compliance I do not feel any better. I don't know if the sore throat and scratchy nose are just a coincidence. I know the nasal pillow is much more comfortable that the nasal mask was. My sleepiness is during the day. At night I start to wake up. I can still go to sleep without any help and sleep through the night but wake up tired. Who knows.
Two months is not enough time to know and not enough time to heal.
A sore throat could indicate mouth breathing.

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Wulfman...
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Re: CPAP Not For Me

Post by Wulfman... » Wed Aug 26, 2015 2:40 pm

rockncountry101 wrote:Believe me...I have no intentions of getting rid of my equipment. Not at all. It has no resell value and I'm not giving it away. My problem is that I have been experiencing extreme exhaustion for many years. After 2 months of compliance I do not feel any better. I don't know if the sore throat and scratchy nose are just a coincidence. I know the nasal pillow is much more comfortable that the nasal mask was. My sleepiness is during the day. At night I start to wake up. I can still go to sleep without any help and sleep through the night but wake up tired. Who knows.
Maybe you need to investigate a full face mask. I love the one I've used since I started therapy. Totally comfortable.
Maybe the sore throat is from mouth leaking/breathing.

Maybe you've got some kind of sleep-phase irregularity. Ever work different shifts?
I actually experience(d) the same things and have for decades. I used to work shift work (loved "midnights") and in many cases worked round the clock with very little sleep. At about 10 - 11 PM I start to get my "second wind", so it's best if I get to sleep before then.

And, maybe your pressure(s) aren't optimized. I don't recall what your settings are, but maybe you need to revisit that aspect.


Den

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Goofproof
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Re: CPAP Not For Me

Post by Goofproof » Wed Aug 26, 2015 4:05 pm

As Den says about a FF mask. Another thing to think about, the two months mean nothing until you get your treatment correct, then sleeping all night not 4 hours, then things get better, not until. Jim
Last edited by Goofproof on Wed Aug 26, 2015 7:32 pm, edited 1 time in total.
Use data to optimize your xPAP treatment!

"The art of medicine consists in amusing the patient while nature cures the disease." Voltaire

rockncountry101
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Re: CPAP Not For Me

Post by rockncountry101 » Wed Aug 26, 2015 7:30 pm

If I'm mouth breathing, wouldn't my leak rate go up? Also, my pressure is 10. I was titrated at 9 only because I was told the sleep director told the techs that 9 was the limit for titration. I have since moved to 10 because I saw that when I would allow my machine to go higher than 9 it would. I'm just feeling all around bad this evening so perhaps it is the effect of something else like allergies. As far as a FF mask. There is no way. Just absolutely no way. I tried one. It was the same thing. Very sore nose bridge and I could not stop the leaking. Since I've been using the Aloha mask I have not had one instance where I had to readjust it at night. It seals wonderfully and stays there when I move. I do wonder about my sleep architecture affecting the numbers at the sleep study. The doctor wrote on the report that I had awful sleep architecture that could have resulted in a under / over estimation. The sleep tech said I had what she thought was a "false negative." I know that if my problem IS sleep apnea, then I've had it for over 10 years. I wish our machines could measure our apneas without any pressure being applied. That way I would have a better idea. As it stands with my previous mask over the last month my AHI was approximately 3 at a pressure of 9.

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Wulfman...
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Re: CPAP Not For Me

Post by Wulfman... » Wed Aug 26, 2015 7:41 pm

rockncountry101 wrote:If I'm mouth breathing, wouldn't my leak rate go up? Also, my pressure is 10. I was titrated at 9 only because I was told the sleep director told the techs that 9 was the limit for titration. I have since moved to 10 because I saw that when I would allow my machine to go higher than 9 it would. I'm just feeling all around bad this evening so perhaps it is the effect of something else like allergies. As far as a FF mask. There is no way. Just absolutely no way. I tried one. It was the same thing. Very sore nose bridge and I could not stop the leaking. Since I've been using the Aloha mask I have not had one instance where I had to readjust it at night. It seals wonderfully and stays there when I move. I do wonder about my sleep architecture affecting the numbers at the sleep study. The doctor wrote on the report that I had awful sleep architecture that could have resulted in a under / over estimation. The sleep tech said I had what she thought was a "false negative." I know that if my problem IS sleep apnea, then I've had it for over 10 years. I wish our machines could measure our apneas without any pressure being applied. That way I would have a better idea. As it stands with my previous mask over the last month my AHI was approximately 3 at a pressure of 9.
Have you posted any reports lately?
It may depend on how much the mouth-leak may be. But, if you've come up with a way of sealing your mouth, that should answer that question.

It MAY be some other factors......I'm just trying to offer suggestions to include or exclude things that may be therapy related.


Den

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library lady
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Re: CPAP Not For Me

Post by library lady » Wed Aug 26, 2015 8:12 pm

Rockncountry, the other posters are right, but they've neglected to mention some things that might help. Do you know about mask liners? I could not control my leaks with my FF mask, but when I learned about those from the kind people here, I ordered some, and by golly, they were a game changer for me! Headgear adjustments can also help with leaks, because if it's too loose or too tight, you will have leaks. If the straps bother you or leave marks on your face, strap covers will make a difference in comfort too. You may need a different mask, FF vs. Nasal vs. Pillows... or a different style of what you are currently using... I forget which you said you were using. Some people have to try many masks before they find the right one...

It takes perseverance to master this thing called CPAP, and it's partly because when you first start using it, it is an alien on your face... takes time for your brain to recognize it, but it's only going to work when you've worked out the kinks; the first thing you need to do is figure out what the kinks are and how to fix them.

PadACheek has excellent mask liners and strap covers; go to http://www.padacheek.com. Another good mask liner is RemZzzs, available from many DMEs or from the sponsors of our forum, at https://www.cpap.com. I've tried both of these with success, but I'm more comfortable with RemZzzs; the fabric is different, and so is the style but the style isn't as important to me as the fabric.

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rockncountry101
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Re: CPAP Not For Me

Post by rockncountry101 » Thu Aug 27, 2015 8:10 am

PoolQ wrote:Just a thought, but as I approach my 2nd sleep study, I am concerned that I may have a "good" night during the study. There are bad nights that my ahi is below 2 and good nights where AHI is almost 10. What is going to happen if I have a good not during the study?

You are 0.3 to 0.4 away from moderate, could you have had a good night?

You have a machine, how was your AHI doing? I wonder if your machine can be set to a non-therapy mode for several nights to see what your AHI is on more than just a snapshot one nighter?
I've often wondered that as well. How awesome would it be if the machine could take a snap shot of my AHI while no therapy was being applied. Then I could really see. I don't have $500 to throw around for another sleep study. Also, I have never been as comfortable with sleep therapy as I have been with my new Aloha nasal pillow mask. However, it seems to have given me some sort of viral infection. A sore throat and very irritated nose. I have learned that when I have ear pressure I can just pull the mask away and it goes away. I don't even have to adjust this mask. It works that great. It feels like it was specifically fitted for me. I didn't even have to adjust the straps out of the box. I'm fighting this fight hard!

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curems
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Re: CPAP Not For Me

Post by curems » Fri Aug 28, 2015 3:44 pm

library lady wrote:Rockncountry, the other posters are right, but they've neglected to mention some things that might help. Do you know about mask liners? I could not control my leaks with my FF mask, but when I learned about those from the kind people here, I ordered some, and by golly, they were a game changer for me! Headgear adjustments can also help with leaks, because if it's too loose or too tight, you will have leaks. If the straps bother you or leave marks on your face, strap covers will make a difference in comfort too. You may need a different mask, FF vs. Nasal vs. Pillows... or a different style of what you are currently using... I forget which you said you were using. Some people have to try many masks before they find the right one...

It takes perseverance to master this thing called CPAP, and it's partly because when you first start using it, it is an alien on your face... takes time for your brain to recognize it, but it's only going to work when you've worked out the kinks; the first thing you need to do is figure out what the kinks are and how to fix them.

PadACheek has excellent mask liners and strap covers; go to http://www.padacheek.com. Another good mask liner is RemZzzs, available from many DMEs or from the sponsors of our forum, at https://www.cpap.com. I've tried both of these with success, but I'm more comfortable with RemZzzs; the fabric is different, and so is the style but the style isn't as important to me as the fabric.
library lady - do you know how the RemZzzs compare to the Boomerang Gel Pads? I had thought the gel would give the best protection but still got sores when using it with my Wisp mask.

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