Winding down

cherylann · Post by **cherylann** » Wed Mar 11, 2015 11:09 pm

I have been at this CPAP thing for nearly four years now and it just doesn't work for me. I just don't know what to do next. I have seen three different sleep doctors, two cardiologists,two ear-nose-and throat doctors and four pulmonologists. They have done test after test after test. I have gone back and forth between a BIPAP and CPAP. I've tried just about every full face mask out there (I'm a mouth breather because I have narrow nasal passages). I have read post after post on here and tried many of your suggestions.

The best I can manage staying on my machine is four hours - and that is very rare. It is usually just under two. Everybody says "you just have to keep trying". Well, I do. But, I take the mask off and have absolutely no recollection of doing it.

The episodes of gasping for breath, chest pains and fast heart rate are getting more frequent. Night before last it happened WHILE I was sleeping and still had the mask on. And that day, I had an episode mid-day.

There have been times when I didn't use the machine (traveling) and I have felt just as good.....or just as bad.....as when I do. But, I'm afraid not to use so I keep plugging away, but I am just getting sicker and weaker every day.

Oh, well. I'll stop complaining now and just say thanks to everyone here who has tried to help me.

cherylann · Post by **cherylann** » Wed Mar 11, 2015 11:12 pm

Oh, damn. After reading my post, I realized there was no point to it and I mean to delete it and hit the submit button instead.

Please ignore.

Administrator, can you delete for me?

kaiasgram · Post by **kaiasgram** » Wed Mar 11, 2015 11:31 pm

cherylann, I'm glad you submitted rather than deleted. Do you think there's anything we could help you with at this point?

Gasper62 · Post by **Gasper62** » Wed Mar 11, 2015 11:47 pm

I have decided that if I can't adjust to using a nasal or full face mask, I'm gonna' try using an oral "mask". (almost like being intubated in the hospital) Have you given any of those a try ? Just a thought. I wish you luck and success.

https://www.cpap.com/cpap-masks/oral-cpap-mask.php

Player · Post by **Player** » Wed Mar 11, 2015 11:50 pm

Hey don't give up.

Do another sleep study. There has to be a solution.

It is not going to get better on it's own.

49er · Post by **49er** » Thu Mar 12, 2015 3:48 am

cherylann wrote:I have been at this CPAP thing for nearly four years now and it just doesn't work for me. I just don't know what to do next. I have seen three different sleep doctors, two cardiologists,two ear-nose-and throat doctors and four pulmonologists. They have done test after test after test. I have gone back and forth between a BIPAP and CPAP. I've tried just about every full face mask out there (I'm a mouth breather because I have narrow nasal passages). I have read post after post on here and tried many of your suggestions.

The best I can manage staying on my machine is four hours - and that is very rare. It is usually just under two. Everybody says "you just have to keep trying". Well, I do. But, I take the mask off and have absolutely no recollection of doing it.

The episodes of gasping for breath, chest pains and fast heart rate are getting more frequent. Night before last it happened WHILE I was sleeping and still had the mask on. And that day, I had an episode mid-day.

There have been times when I didn't use the machine (traveling) and I have felt just as good.....or just as bad.....as when I do. But, I'm afraid not to use so I keep plugging away, but I am just getting sicker and weaker every day.

Oh, well. I'll stop complaining now and just say thanks to everyone here who has tried to help me.

Cherylann,

You and I are soul sisters regarding our struggles with pap therapy. I can count on my hand the number of times I slept 4 hours during my three years on pap therapy.

And by the way, I also constantly took full face masks off until I switched to the Elan cloth mask. Still not the best option but better than nothing.

Anyway, that is why I decided to finally have a septplasty/turbinate reduction/nasal valve repair in spite of my extreme fears of surgery. But I found a great ENT who also listens and I felt that if I can start truly breathing out of my nose, my chances of sleep increase.

I think you may have previously mentioned this but have you considered having your nose operated on to increase your nasal airway? What else have you considered surgery or dental appliance wise?

4 years is a long time to try and you deserve a medal for that. As I keep stating, contrary to popular belief on this board, there is a subset of people for whom pap therapy doesn't work no matter what they try.

HUGS!

49er

cherylann · Post by **cherylann** » Thu Mar 12, 2015 6:11 am

Thank you all for your responses. I'm glad now that I posted it. Support and understanding from you all is all I get. Even with three family members with apnea.... they are not supportive. They are nose breathers and can use those easy masks so have no problems and just don't understand.

49er, I'll look into the cloth mask. Thanks. I just don't want to have surgery. I have been so frustrated with doctors and their assembly line medical treatment. I had a heart stent in December after cardiologist found an 80% blockage. I thought that was going to be the answer, but it wasn't. Haven't seen him since. My follow up visits are relegated to his assistant who just takes notes and DOESN'T LISTEN TO ME WHEN I SAY NOTHING HAS IMPROVED. But, maybe I should try another ENT and consider that. Where do you live? Maybe I will come to see yours.

Gaspar 62, that oral mask looks promising. I think I'll try it. I've always gotten my supplies through a DME. Can I order directly online and bypass doctor and insurance?

Player, I don't think another sleep study will help. I've had two. And new sleep doctor I saw in January adjusted my settings and said "keep trying" and then, as with the heart doctor, relegated me to an assistant for follow ups. I don't see any point in going back.

Kaisgram, thank you for you kind comment. I guess I just want someone to listen to me who really understands and doesn't think I'm just not trying to make this work.

The first sleep doctor I saw did tell me that CPAP simply doesn't work for 20% of the people who have it.

Thanks again, everybody.

49er · Post by **49er** » Thu Mar 12, 2015 6:22 am

49er, I'll look into the cloth mask. Thanks. I just don't want to have surgery. I have been so frustrated with doctors and their assembly line medical treatment. I had a heart stent in December after cardiologist found an 80% blockage. I thought that was going to be the answer, but it wasn't. Haven't seen him since. My follow up visits are relegated to his assistant who just takes notes and DOESN'T LISTEN TO ME WHEN I SAY NOTHING HAS IMPROVED. But, maybe I should try another ENT and consider that. Where do you live? Maybe I will come to see yours.

Oh, I definitely hear you about frustration with doctors. I chickened out of surgery last year after going through 3 ENTs. And the one this year who is doing it was the third one I saw.

I will PM you his name as he is wonderful and does listen. Definitely not an assembly line practice type of doc.

I can also give you the name of my regular cardiologist who is wonderful.

I am so sorry you have had such a bad experience.

robysue · Post by **robysue** » Thu Mar 12, 2015 8:09 am

cherylann,

My heart goes out to you. Four years is indeed a long time to continuously put forth your best effort and see no positive results.

This caught my eye:

cherylann wrote:I have been so frustrated with doctors and their assembly line medical treatment. I had a heart stent in December after cardiologist found an 80% blockage. I thought that was going to be the answer, but it wasn't. Haven't seen him since. My follow up visits are relegated to his assistant who just takes notes and DOESN'T LISTEN TO ME WHEN I SAY NOTHING HAS IMPROVED.

When I was getting more and more frustrated by this happening to me in regards to both my (then) PCP and (then) sleep specialist/headache doctor, my psychiatrist reminded me that the docs work for me. And that I had the right to politely, but persistently insist that I be seen by the doctor, particularly if the assistant is providing you with inadequate service. And that I should just go ahead and fire the doctor if he was not not willing to accommodate my reasonable requests to be seen by him instead of an assistant.

You might want to reschedule the next follow up with the cardiologist himself. Call the office to reschedule the appointment and tell the person on the phone that you really want to be seen by the cardiologist and not the assistant. The person on the phone will push back (of course), but politely be persistent. If it means accepting an appointment that's a bit further in the future, say that's fine. If it means telling the person on the phone that you will find another cardiologist if you don't see the doctor, that's fine. If you do fire this cardiologist and hire a new one, be up front at the first meeting about followups with the doc---say that you have changed cardiologists specifically because you were frustrated with the fact that all of your follow-up treatment was delegated to an assistant who never listened when you said nothing was improving.

Gaspar 62, that oral mask looks promising. I think I'll try it. I've always gotten my supplies through a DME. Can I order directly online and bypass doctor and insurance?

If you have a script you can buy directly on-line and bypass the doctor and the insurance. If you don't have a physical copy of your script, many on-line DMEs (including our host) are willing to contact the doctor and verify the script. If you choose to buy from cpap.com, paying for the "return mask insurance" is a good idea.

Player, I don't think another sleep study will help. I've had two. And new sleep doctor I saw in January adjusted my settings and said "keep trying" and then, as with the heart doctor, relegated me to an assistant for follow ups. I don't see any point in going back.

It is frustrating to repeatedly be told to "keep trying" when there are no useful new ideas presented for you to consider. After all, you've been trying for four long years with no relief.

As for being relegated to the assistant for follow-ups: Sometimes the assistants are better than the docs and sometimes (as in the case of your cardiologist's assistant) they are not. And you don't know whether you'll get a gem or a dud in the assistant until you see him/her. So it may be worth doing the first follow-up with the assistant as a "test" visit. But if you've already seen the sleep doc's assistant and he/she was of no use, then you've got to decide whether this doc will be of help or not.

And one idea I'll toss out for you to consider: It sounds like the sleep docs you've seen have all developed "CPAP/OSA blindness"----i.e. the fact that you've been diagnosed with OSA, but have not been able to acclimate fully to CPAP leads them to assume that all of your sleep problems must be caused by the OSA and lack of effective CPAP therapy (hence the advice to "keep trying"), and that they're not even thinking that there may be multiple causes of your sleep problems and that your inability to use the CPAP might have its roots in something that could be addressed in some fashion beyond telling you to "keep trying."

If you do go back to the sleep doc's office and see the assistant, you might want to be proactive in moving the conversation beyond the stage where all he/she says to you is to "keep trying." I'd suggest doing the following things to help focus the conversation where you want it to be focused:

1) Keep a sleep log for a couple of weeks. Be sure the log contains everything sleep related and not just the CPAP/OSA stuff. In particular, keep track of the obvious things: bedtime; wakeup time; how long it took to get to sleep; how many wakes you remember; when you took the mask off and whether you remember doing that; how you feel in the morning when you first get up; and how well/poorly you feel during the day. But also keep track of some less obvious things as well: When the episodes of gasping for breath, chest pains and fast heart rate happen, how long they last, and if they occur at night, whether they woke you up in a panic and whether you still had the mask on when you woke up in one of these episodes; any cardiologist--approved exercise you got during the day and when you did it; caffeine and alcohol consumption (if any); when you take your prescribed drugs, what those drugs are, and the dosage; and anything else you think might be relevant in uncovering additional sleep problems you might be dealing with.

2) Make a written list of the things that you've tried through the years. If you can remember roughly how long you tried a particular suggestion, add that to the list. If a particular idea/suggestion clearly made things worse make a note of that as well. Try to list as many specific masks as you can remember trying. If a particular idea/suggestion seemed to make things a bit better for a while, but then the whole CPAP thing deteriorated again, make a note of that. Don't forget to mention whether you've tried different humidity settings and whether the humidity setting seems to make even a marginal difference. If you've tried a heated hose, indicate whether that helped or not.

3) Make a list of your specific problems with CPAP. Tops on that list, of course, is "I keep removing the mask in my sleep." But add to it any other discomforts and/frustrations you experience when using CPAP.

4) Be sure to drop the log and the two lists off at the sleep doc's office a couple of days before the follow-up appointment and tell the receptionist that the log needs to be seen by {Person's Name} before your appointment with {Person's Name} on {Specific Date}. If the doc's office has some kind of patient portal system where you can email the person who will see you, send them a message saying that you've dropped off a sleep log and some additional lists of issues and that you would like them to read that material before your appointment on {Specific Date}.

5) When you go in for the follow-up, ask the person seeing you if they've had a chance to look over your lists and sleep log. And tell them that you'd rather spend your 10-15 appointment talking about any new ideas the person might have when it comes to fixing your entire set of sleep problems. If they simply say "keep trying", pin them down: Point to the list and say that you've been trying----exceptionally hard in fact---for four years and that you are out of ideas on what to do in order to "keep trying." If your OSA is in the moderate range, you probably should bring up the idea of an oral appliance. Heck, at this point even if you have severe OSA, you might want to bring up the idea of an oral appliance. Partially treated OSA all night long with better sleep continuity may be more healthy for you in the long run than 2-3 hours of PAPing followed by 5-6 hours of sleeping with untreated OSA.

Note that you can also use a similar strategy when dealing with the unresponsive assistant in the cardiologist's office: Get relevant written information about your on-going problems and symptoms to him/her before the follow-up so that you don't have to spend precious time trying to explain in person how nothing is improving. That will allow you to steer the conversation towards what needs to be done NEXT in order for you to start getting better.

Best of luck in sorting out all your health problems so that you can start feeling more like you are "alive and living" instead of "existing and getting worse" every day.

AMK · Post by **AMK** » Thu Mar 12, 2015 9:11 am

I have to wonder if that statistic that "CPAP simply doesn't work for 20% of the people who have it" could better be written, "20% of people need help with their treatment and don't get it and quit." I have had to fight to get help with my settings and mask and if I didn't have these boards to help me learn what I need I think I would have been in that 20%.

robysue · Post by **robysue** » Thu Mar 12, 2015 9:43 am

AMK wrote:I have to wonder if that statistic that "CPAP simply doesn't work for 20% of the people who have it" could better be written, "20% of people need help with their treatment and don't get it and quit." I have had to fight to get help with my settings and mask and if I didn't have these boards to help me learn what I need I think I would have been in that 20%.

Conventional wisdom is that roughly 50% of people who try CPAP quit it within the first year or two of PAPing.

That 50% would include people who give up in frustration because they've been provided too little help in getting their treatment optimized. But it would also include folks who try really hard with a lot of support (from a forum like this OR a really good sleep doc or DME) and still fail to feel any better after trying for many, many months and then eventually give up because the nightly CPAP battle is just too costly.

49er and cherylann have both tried really hard for several years to make PAP work: They've asked for, gotten, and tried numerous ideas in an effort to make PAP work, but the suggestions have NOT worked for them. And yet, they are still PAPing or trying to PAP every night. But they just don't feel any different than they felt before starting PAP, and on many days they may feel worse than before they started PAP. 49er's contention (which I also believe) is that some people really don't start feeling any better no matter how long they continue to PAP and no matter how hard they try to become a successful PAPer and no matter how good their therapy looks on paper. In other words, CPAP really doesn't do much for this subset of OSA patients. Whether this group of patients makes up 20% of the total OSA population or not is another question. I don't think it's that large of a group. But this group of patients does exist and at a certain point just being told to "keep trying" becomes counterproductive to someone in this group of OSA patients.

Gasper62 · Post by **Gasper62** » Thu Mar 12, 2015 11:52 am

These videos gave me a pretty good idea about how this oral mask works. I used to SCUBA and snorkel a lot so, I'd probably be comfortable with it. Maybe it will be a viable alternative for you, too. Good luck !

https://youtu.be/rQmARrw-OXM
https://youtu.be/Q44N5owNCkY
https://youtu.be/Q44N5owNCkY
^^click on links^^

BlackSpinner · Post by **BlackSpinner** » Thu Mar 12, 2015 12:57 pm

{{{{Hugs}}}}

That is about all I can offer today.

Wulfman... · Post by **Wulfman...** » Thu Mar 12, 2015 1:45 pm

cherylann wrote:I have been at this CPAP thing for nearly four years now and it just doesn't work for me. I just don't know what to do next. I have seen three different sleep doctors, two cardiologists,two ear-nose-and throat doctors and four pulmonologists. They have done test after test after test. I have gone back and forth between a BIPAP and CPAP. I've tried just about every full face mask out there (I'm a mouth breather because I have narrow nasal passages). I have read post after post on here and tried many of your suggestions.

The best I can manage staying on my machine is four hours - and that is very rare. It is usually just under two. Everybody says "you just have to keep trying". Well, I do. But, I take the mask off and have absolutely no recollection of doing it.

The episodes of gasping for breath, chest pains and fast heart rate are getting more frequent. Night before last it happened WHILE I was sleeping and still had the mask on. And that day, I had an episode mid-day.

There have been times when I didn't use the machine (traveling) and I have felt just as good.....or just as bad.....as when I do. But, I'm afraid not to use so I keep plugging away, but I am just getting sicker and weaker every day.

Oh, well. I'll stop complaining now and just say thanks to everyone here who has tried to help me.

I haven't read back through your posts, but could you please list what ALL of your settings are and the specific machine you're using?
Also, if you could post a report from a "typical" night, it might help to see what's going on.

Den

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