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Feeling defeated...
#1
Sad 
Feeling defeated...
Hi, folks -

I have been using my CPAP for almost a month, and have had dismal results (usually 30-40 AHI). The company I was using for equipment rental and phone coaching was of no help (for example, they told me the mask was leaking when, in fact, it wasn't). I have since switched to a new CPAP provider and have seen my sleep doctor, who asked me if I was sleeping flat on my back. I said that I was (I have to sleep on my back due to major spinal fusion), and he said that he meant "flat" as in "not at a slant." I said that yes, I was sleeping flat, and he said that the CPAP doesn't work unless you are sleeping at an angle. Why did no one from the CPAP provider tell me this???? So I've tried sleeping at different angles in my medical recliner, but there has been no change in my AHI. The sleep doc increased my pressure to 9-18, but that has done nothing (yet).

A factor in my case is that I had a palatectomy in 2009, so my mouth and sinus cavity are all one space when I'm not wearing my prosthetic palate (I take it out at night, per doctor's orders). I'm pretty sure my soft palate was also affected by the surgery, though I personally can't tell (my sleep doc says he's sure it did). This means I breathe simultaneously through both mouth and nose, and that's why I have a full-face mask. I've got it so it's fitting well -- good seal and all that -- but I still get terrible dry-mouth and, as I said above, my AHI numbers are really bad. 

Does anyone here have a structural issue like mine? Have you been told to sleep at an angle, and if so, what works for you? Last night I tried 45 degrees (since 30 degrees the previous night didn't help my AHI), but couldn't sleep AT ALL -- lay half-awake for 2 full hours. I lowered myself back down to 30 degrees and got 2 hours of actual sleep. My AHI report this morning said 39.4 events/hour. 

I do not want to give up!! My morning headaches are terrible, and I'm really scared about my oxygen deprivation to both heart and brain. I cannot download Sleepyhead, so I'm afraid I have no graphs for you. If anyone has any advice about their own structural issues or sleep position, or if anyone has ANY helpful hints for me, I would truly appreciate hearing from you. 

Thanks in advance.
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#2
RE: Feeling defeated...
It doesn't sound like your getting very good care. I recommend you download sleepyhead software from the link below and post a chart here. There are many people here who can check your chart and give you advice on getting your AHI numbers down to where they should be. The nice thing about it is it's free. Just a bunch of people trying to help each other.

If you don't have one already you'll need to buy a SD card so you can transfer data from your machine to your computer. They don't cost very much and you can get them at Walmart or online.

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#3
RE: Feeling defeated...
Good day, MorningGirl, and welcome to the Apnea Board.

First, in my humble opinion, the sleep doctor that told you that you must sleep on an angle is likely giving you a cookie cutter response that he/she has developed. As the patient, you sleep however you can to best suit personal comfort. While it is known that sleeping position can, and does, affect how many sleep apneas one has overnight, you need to consider your other health issues as well. In other words, sleep in whatever position you have to.

Second, the dry mouth issue may be linked back to your humidifier, and if you have one, a heated hose.

As these apply to what you have available:

1. Turn your humidifier from Auto to Manual, adjust the humidifier setting to a mid-range number, (thinking I saw you're on a ResMed) humidifier settings in Manual are OFF, 1-8, I'd try 4-5 and adjust up or down depending on if that is too much or too little humidity to conqueror your dry mouth.

2. Heated hose: (if available) if you do not have one, try to get one if possible, settings are OFF, 60-86 Degrees F. I'd try here a mid-range number as well, maybe high 70's, adjust to suit to prevent tube and mask condensation and also it does affect the air temp you breathe through the mask.

3. For now, we can use any data you can get us. Record the machine info for a night's sleep and post that here. Keep things going onto this thread, so we can keep things in one tidy area.

No doubt others will chime in soon enough. They will mention things I probably missed, and will certainly have new and/or better ideas. Good day and keep working at this therapy. There are many others that have had to struggle a lot at the beginning too. Just don't quit.

Coffee

PS: view the link in my signature on the Newbie wiki. There's a lot of useful info about devices, masks, handling the doctor, etc.
Dave

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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#4
RE: Feeling defeated...
(03-02-2018, 07:57 AM)MorningGirl Wrote: and he said that the CPAP doesn't work unless you are sleeping at an angle. Why did no one from the CPAP provider tell me this????
Because it is not true.
ONE of the causes of apnea is the collapse of throat tissues, which is worse when we are on our back vs side, but it is not the only cause, and CPAP pressure still provides support in that position.

You may be suffering from Central apnea, where your brain simply is not initiating breathing.  This will show as an apnea event, but is caused by a very different mechanism, and may require a different type of machine.   If an increase in pressure actually worsened the AHI, this may be what is going on.

Unfortunately, dry-mouth is a side effect of mouth-breathing, whether using an FFM or not.  If you can somehow train yourself to keep your lips closed, that will help.
-- Rich
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INFORMATION ON FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.

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#5
RE: Feeling defeated...
I've had a UPPP surgery where they removed the uvula, and other tissue back there, and it's quite open. When I breathe in through my nose, the air also fills my mouth before going down to my lungs. During the day I typically am a dual nose and mouth-breather. I can't tolerate an FFM though, so I tape my mouth shut with medical tape at night, and use a Resmed Airfit P10 mask. It works pretty good for me that way. I did have to learn to do the tongue trick where you keep it at the top front of your mouth, even while sleeping. It took awhile, but now it does it with no issues. That keeps the air coming in from the nasal pillow mask from drying out my mouth, and the air goes right down to the lungs as it should

I highly suggest you also tape your mouth shut, and use a nasal pillow mask. I think it'll make all the difference to you.

The tape I use is: Nexcare Sensitive Skin Tape, 1 inch. I even discovered that in the morning when I peel it off, if I re-stick it back on the roll, it'll stay sticky enough that I can use it a second night! That helps save some money. Before I tape my mouth shut, I make a tab on the end by folding it over on itself to make it easier to peel off if there's an emergency. It took a few weeks to get used to it, but now there's no problem, and my leaks are normal as my mouth can't open in my sleep.
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#6
RE: Feeling defeated...
Morninggirl, we need to figure out what kind of apnea events you are having.  This is important!  Your machine produces a sleep report that should show your AHI and also if the machine is set to Essentials Plus, it will show the OAI (obstructive apnea index), HAI (hypopnea), and CAI (clear airway).  I agree with the earlier comment you may be having central apnea, and if so, you will need a different therapy and probably a more competent doctor.  We can help you to identify the problem.

Do you have a computer you can install the free SleepyHead software?

If not, we can show you how to access the Essentials Plus setting on your machine:
  • Press control knob and Home button at the same time
  • Select Clinical Settings
  • Scroll down to Essential
  • Change setting from ON to PLUS
  • Exit Clinical Menu
How to access Clinical Settings
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#7
RE: Feeling defeated...
Thank you all SO MUCH for your thoughtful replies and support! I was able to get in to see my sleep doc today and talk about some of the things you mentioned and discuss next steps. He said that my apnea is about 90% obstructive and only 10% (at most) central. He looked at my detailed data (he gets all of the numbers, including oxygen levels) and said that in his opinion neither a CPAP or BiPAP will work for me, with my floppy soft palate/throat tissue (the result of my palatectomy/maxillectomy). HOWEVER, I pushed a bit and said I wanted to try the CPAP again, this time keeping my obturator (prosthetic palate) IN while sleeping and taping my mouth shut so that I am only breathing through my nose. I'm going to give it a whirl tonight. I'm also going to find a maxillofacial surgeon (mine retired) who can tell me more about the tissue back there and who might have out-of-the-box ideas for people like me who lack a palate and also suffer from sleep apnea.

I'm so glad I joined the Forum! I am going to investigate downloading Sleepyhead again (I gave up when my computer rejected it, but I could certainly get help with that). Thanks to all for your great advice. Smile
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#8
RE: Feeling defeated...
(03-02-2018, 05:58 PM)MorningGirl Wrote: Thank you all SO MUCH for your thoughtful replies and support! I was able to get in to see my sleep doc today and talk about some of the things you mentioned and discuss next steps. He said that my apnea is about 90% obstructive and only 10% (at most) central. He looked at my detailed data (he gets all of the numbers, including oxygen levels) and said that in his opinion neither a CPAP or BiPAP will work for me, with my floppy soft palate/throat tissue (the result of my palatectomy/maxillectomy). HOWEVER, I pushed a bit and said I wanted to try the CPAP again, this time keeping my obturator (prosthetic palate) IN while sleeping and taping my mouth shut so that I am only breathing through my nose. I'm going to give it a whirl tonight. I'm also going to find a maxillofacial surgeon (mine retired) who can tell me more about the tissue back there and who might have out-of-the-box ideas for people like me who lack a palate and also suffer from sleep apnea.

I'm so glad I joined the Forum! I am going to investigate downloading Sleepyhead again (I gave up when my computer rejected it, but I could certainly get help with that). Thanks to all for your great advice. Smile

Please also try sleeping on your side. Prop yourself up with pillows front and back if you must.
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#9
RE: Feeling defeated...
(03-02-2018, 05:58 PM)MorningGirl Wrote: I'm so glad I joined the Forum! I am going to investigate downloading Sleepyhead again (I gave up when my computer rejected it, but I could certainly get help with that). Thanks to all for your great advice. Smile

To open sleepyhead on a mac after down loading right click and select open from the menu rather than just double clicking that will allow you to bypass Apple security for that application
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#10
RE: Feeling defeated...
Hi MorningGirl,
It's great that you want to stick with your CPAP therapy. I'm sorry you are having such a rough time right now and I hope you find a solution to make it work for you.
Hang in there for more responses to your post.
trish6hundred
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