What has been your biggest mistake in dealing with apnea?

big_dave · Post by **big_dave** » Sat Mar 16, 2013 9:30 pm

Like many others, my biggest mistake was waiting years and years too long.

My biggest mistake since actually starting CPAP was waiting too long to buy a full face mask for when I'm congested. The mask (Mirage Quattro) is a bear to get used to, especially since I only use it for one or two partial nights a month. It doesn't give me the best night's sleep, but it's a vast improvement over what I was going through. If I woke up congested and feeling like I wasn't getting enough air, I sometimes would take off my mask and wait for the congestion to go away. Inevitably, I fell asleep without the mask, and I woke up feeling like hell. Other times, I would get out of bed and either irrigate my sinuses or wait for the congestion to go away, and I ended up wide awake and unable to get to sleep. Whether I got up or went back to sleep without the mask, my sleep was badly disrupted and it took a week to get back to normal.

I even tried increasing my minimum pressure to break through the congestion. This allowed me to sleep, but the last time I did it, I had to turn the minimum pressure all the way up to 15. I woke up with a little bit of an earache. Although the earache wasn't that bad, I ordered the full face mask the next day since I didn't want another earache. I can't stand the thing, but it's a necessary evil.

kaiasgram · Post by **kaiasgram** » Sat Mar 16, 2013 10:19 pm

mollete wrote:It has been my observation that people with poor sleep efficiencies (<75%) and moderate OSA (AHI ~15-25) often have great difficulty acclimatizing to xPAP because they don't immediately "feel better" (compared to the "night and day" improvement that a huge AHI person would get), and the discomfort of wearing apparatus may further adversely affect sleep efficiency (for instance, by sleeping for 2-4 hours then awakening and being unable to fall back to sleep) thus offsetting any gains seen in a moderate AHI reduction.

This group needs a great deal of encouragement and support (at the least).

Thanks for this post. For a lot of reasons.

Catalytic · Post by **Catalytic** » Sat Mar 16, 2013 11:32 pm

jencat824 wrote:
herefishy wrote:Jencat, I don't understand how your teeth move - have you figured this out?
Well, my front teeth moved. The upper front teeth moved outward, forming an overbite & pushing the teeth further apart, creating large spaces between my front teeth (spaces between front 6 teeth). All this created some bone loss. If I had known a retainer would have prevented this, I would have seen an orthodontist back in 2000 when I started CPAP & got one made & wore it. I was on a very high pressure, 17cm at first, then increased to 19cm after the first few months. I've been on the APAP about a month & my pressure seems to be running around 13cm, proof that I didn't need that high a pressure, at least don't need it now.

The teeth issue is one I discussed with the dentist I was seeing at that time, he said he didn't think they were moving. It became very obvious after about a year that they were indeed moving. I switched dentist a couple of times, & both said there was nothing they could do, unless I wanted braces & they said that jokingly. Well, it turns out if I had been encouraged to actually see an orthodontist & get a retainer made the movement could have been prevented.

Basically, the orthodontist I'm seeing now is getting me ready for adult braces that are similar to Invisialign, something called Clear Correct. These are expensive, but cheaper than actual braces, that part shocked me. I'm being prepared for this with several medications due to medical conditions & the fact that I have artifical knees. I will have to be pre-post medicated each orthodontist visit with antibiotics, but before they can do that, orthodontist has to defer to my oncologist so that she can get several of my blood numbers in line to be able to take the antibiotics. The process is harder for me, since I have Lymphoma & other medical conditions, but most of my drs are being supportive.

My endocrinologist is kind of being shi**y but I think he has dentures & wanted me to go the easy route - just pull all my front teeth & get a bridge. I'm NOT doing that.

In order to prevent problems with your teeth, watch carefully for movement, there is pressure going into your nose and mouth (even with a nasal mask - I've worn all nasal masks, never FF) and that pressure can cause things to move around. It did in my case, possibly due to such a high pressure?

There have been several posts since I've found the forum (I stumbled across this wealth of knowledge in Oct 2012) and you might want to search 'teeth' & see if you can find some of them & read up on other peoples problems. It was on one of those posts someone suggest I needed a retainer. When I got in to see the orthodontist I found out in my case I was WAY past retainer, but instead had reached a very advanced stage of problems.

I wish I had known problems like this can occur and that I needed a retainer, but I kind of blame the dentist's I went to, they should have known & send me to an orthodontist instead of just saying 'oh well'.

My overall 'word to the wise' - if your teeth are sore, see an orthodontist to see if you need to get a retainer made. It could help you avoid what I'm going thru now.
Jen

In the Swift FX for Her's manual, under Warnings, it says "Using a mask may cause tooth, gum, or jaw soreness or aggravate an existing dental condition. If symptoms occur, consult your physician or dentist." I've no idea how long they have had that in there, but certainly folks should be paying attention, as you have said. Good luck to you, I hope your treatment goes well and is pain-free!

Papit · Post by **Papit** » Sun Mar 17, 2013 12:47 am

Drowsy Dancer wrote:. . . Even after my airways were propped open appropriately there were other things interfering with my sleep (up to and including a lack of self-discipline about staying up too late at night playing video games).

DD, I suspect you have hit the nail squarely on its head. Self-discipline enough to make it a habit of going to sleep and, especially, getting up at the same time every day may just be the single most important step each of us needs to take. Sooner or later. Including me.

Awhile back I spent the better part of an hour in a consultation visit with a sleep doc. After all the discussion and a few suggestions, she ended the session with the above advice of getting up at the same time every morning as the single MOST important step to take.

zoocrewphoto · Post by **zoocrewphoto** » Sun Mar 17, 2013 1:40 am

Drowsy Dancer wrote:
mollete wrote:<snip> It has been my observation that people with poor sleep efficiencies (<75%) and moderate OSA (AHI ~15-25) often have great difficulty acclimatizing to xPAP because they don't immediately "feel better" (compared to the "night and day" improvement that a huge AHI person would get)<snip>
Ah! That explains why I, with my 96% sleep efficiency and 71 AHI on my PSG, had a very easy initial adjustment to xPAP. Even a first-week average (per SleepyHead) AHI of 7.96 was a massive improvement.

Same here. I did a split night study, so in my first 2 1/2 hours, I had an ahi of 79. Since I never made it to REM sleep and didn't have a full night with lots more supine sleeping, it could have been worse for a whole night. I then did almost 6 hours for the titration. There were still some desats during the first 2 hours of that part and then pretty much nothing. That was such a huge difference that I could feel the improvement in that one night.

I do have ups and downs as I have good nights and bad nights. This past week, I have been having trouble again with cheek pain (caused by something else) that is hurting where my headgear goes. And drooling causing mask leaks.

But even a partial night on cpap is typically better than a "good" night previously. But for me, it was a huge change. I can see how it would much harder to feel improvements if they desats weren't that bad before, or the pressure changes are causing sleep issues.

mollete · Post by **mollete** » Sun Mar 17, 2013 4:29 am

mollete wrote:Thinking that xPAP will fix inherently bad sleep (not only does it not, but it usually makes sleep exponentially worse).

The second BM (HAHAHAHAHA) is, after correcting moderately to very severe SDB with normal Sleep Efficiency, is to expect that Day 2 (and every subsequent day) after initiation of therapy will feel like Day 1.

Drowsy Dancer · Post by **Drowsy Dancer** » Sun Mar 17, 2013 12:14 pm

mollete wrote:
mollete wrote:Thinking that xPAP will fix inherently bad sleep (not only does it not, but it usually makes sleep exponentially worse).
The second BM (HAHAHAHAHA) is, after correcting moderately to very severe SDB with normal Sleep Efficiency, is to expect that Day 2 (and every subsequent day) after initiation of therapy will feel like Day 1.

Been there, done that, got the t-shirt.

DaveL · Post by **DaveL** » Sun Mar 17, 2013 12:46 pm

Thanks for your response! Very helpful.
DaveL
Toronto

purple wrote:Doctors have a different standard than I do. That is, for a doc, good compliance, AHI less than five, not a lot of leaks. The doc is good with my treatment. I want quality of life. To have successful sleep, I needed an AHI of more like .2 or .3.

That led me to think I was smarter than docs.

I did not listen to the doc, or DME rep who suggested which mask I should try. Someone with experience can glance at an individuals face, listen to what the patient has to say, (I can not stand to have air coming out my nose from the machine pressure, so I needed a FFM) I now have a Total Face Mask, nearly the same for air coming out my nose, the same mask a doc suggested I try.

The Aerophagia being driven by a machine on auto, which I set up to get a lower AHI, which caused me a lot of pain. My first sleep doc was adamant that my machine should be set to straight pressure.

Like always, I had outsmarted myself.

Now I concerned with how this effects all my choices in what I ask from doctors. And I could do a lot better with my sleep treatment if I had enough money to pay for the latest machine, better food, more expensive hobbies.

BleepingBeauty · Post by **BleepingBeauty** » Sun Mar 17, 2013 4:38 pm

My biggest mistake was trusting the medical professionals (sleep doctor and DME) to have my best interests at heart. (We had very different prioritie$. )

My next biggest mistake was giving the sleep doctor so much time to get it right (about 18 months or so). Frustrated with him, I eventually found this forum and finally got my therapy in order, about two years after being diagnosed. (That's about the only thing I can thank him for...)

SleepingUgly · Post by **SleepingUgly** » Sun Mar 17, 2013 4:57 pm

Beeping Beauty, your biggest mistake is being gone from here so long! We've missed you!

simplyme · Post by **simplyme** » Sun Mar 17, 2013 6:06 pm

Waiting way to long to take ownership of my treatment. I wasted 5 years on ineffective cpap settings and just thought the doctors knew best...
Surprise, the doctors don't always know everything! Now I have new doctors new vpap, with data, and a new understanding of my OSA and the treatment. I'm doing waaaay better with my treatment itself, mainly because I am on a higher pressure, went from 7cpap to 8-12vpap. Now I know why I felt like I could not get enough air, and why I was taking the mask off in the night... it wasn't all my fault for not trying enough (as implied several times by my old sleep doctor). The treatment really wasn't working for me!
Now I have my brain plugged in, not just my xpap machine! I'm learning all I can about my treatment and what options are out there... it is going so much better now, and with a little mask surgery I am actually pretty comfortable at night, sometimes I wake up and wonder if my mask is still on..that is how used to it I am getting! Sadly it took me 5 irritation filled years to get here. But I'm glad I am here!

What has been your biggest mistake in dealing with apnea?

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