Hiatus from CPAP and woes

[Rhrh]

I'm pretty resolved to using CPAP for the rest of my life, or until I lose 75 lbs. The latter isn't happening soon.

But I really feel I need to take a break, hopefully to return. Here are the reasons why, and you guys with more experience can let me know if I am bellyaching or up the wrong tree:
1) First few days, a nose bruise then an eye infection. Had to get oral antibiotics for the eye infection. It was right where the ResMed F20 Infinity Seal mask hit my nose bridge and corner of my eye, not actually on the eye lid but touching the tear duct.
2) Then I went to get refit, and got a ResMed F20 Ultrasoft Memory Foam. The way the tech put it, I was using the top of the line mask, and then went to the really top of the line mask. The mask felt better, and the bruise went away, but the eye problems continued.
3) Eye doctor again, this time blepharitis (eyelid infection) in the same eye. This time, the doctor gave me eyescrubs and a compress to heat and put on my eyes. Note I have *never* had an eye infection before this, other than many many years ago I had a pink eye sort of thing when I used to wear contacts.
4) Then a week ago, I started seeing huge white and black alternating arcs on either side of the other eye's field of vision. Then suddenly a floater like Silly String. Those symptoms both went away and I got hundreds of floaters, then I went to a retinal specialist who diagnosed vitreous detachment (there's another on that topic I just posted to).
5) Okay, so I'm beginning to worry. But then, after the eye exam and the floaters calming down a bit, I get a large black circle, much larger than any floater, about the size of the arcs, but it is right next to my nose. In the eye with the vitreous detachment. I'm reading up, and it's a bit odd, but a gas bubble in the eye seems to cause this kind of symptom. Of course, diagnosis by internet isn't a great thing, but I am freaked out. I have an appointment on Monday to get looked at again, but may go to a retinal emergency place.

So anyway, I've just about had it with this thing, at least for now until my eyes go back to normalish. Before anyone jumps on me, here is what else was happening in the six weeks that I've been on CPAP.
1) I still only sleep from 4 to 6 hours per night, and sometimes less. I am averaging 4 hours per night on CPAP. I would say I maybe am more alert at night, but not during the day, so I could be sleeping less than before.
2) I apparently "eat air" - I have a lot of gas I've never had before, and it is painful sometimes. I have dysphagia, I know that after having a swallowing study about 10 years ago, so I know my esophagus doesn't have good muscle tone.
3) I do not feel any better, I am still very tired (yes, I understand the insomnia part of this may be an issue). As I mentioned, the only slightly better thing is I am more awake at night, but that could be a worse thing for an insomniac.
4) In addition to the eye issues, I also had lingual tonsillitis, first time I've ever had that and first time I've been really sick in years. Three doctor visits to find out why my throat felt like it was closing up. Thankfully, oral antibiotics cleared it up.
5) FWIW, I have been cleaning the mask and the hoses pretty religiously, using mild soap and warm water, and even did a vinegar rinse on the hose when someone recommended that to me. I am using a plastic bag to not lay any equipment in the sink.

My machine is a ResMed AirSense 10 Autoset. I have a ResMed F20 Ultrasoft Memory Foam mask, covers my nose and mouth. I'm a mouth breather, and the sleep doctor says nose pillows would be a bad idea if I don't breathe through my nose. I've toyed with the idea of a complete face mask, that is around the forehead, cheeks, and chin, but if I'm getting air into my eyes, wouldn't that be at least as bad? Or maybe not, if the edge of the seal is now driving air into my eyes?

I would really like to take a break from CPAP for a while, but I would want something in the mean time. I bought a body pillow so I can avoid sleeping on my back. I am thinking about one of those anti-snore mouthpieces, but don't know where to begin. I talked to my dentist about such a thing and he didn't seem to know anything about it.

And if anyone has some more general sage advice, I'd appreciate it. I think the overall issue is both insomnia and sleep apnea.

(PS - don't get me started on the first sleep doctor I went to, he didn't even deign to call me when the home sleep study showed severe sleep apnea. Some nurse called me, couldn't answer any questions, and didn't give me any warnings or advice. I got a new sleep doctor quickly, and he is very good. But the only thing he recommended for the insomnia was CBT, which at best takes months, and of course sleep hygiene, which I've improved but can't seem to get all of it together due to spouse working 12 hour shifts (yes, I'm EST and I haven't had dinner yet)).

And thank you for this board!

[LSAT]

Your DME should have suggested this full face mask...It wouldn't affect your eyes.
https://www.cpap.com/productpage/respir ... -mask.html

[Julie]

And get your wife to teach you to cook... I mean really, she must be tired when she gets home too.

Don't want to add more re your other issues - others will know more about those I think, but relax re cleaning that hose... most of us don't bother for decades. Only filtered room air goes through it... one way... and I'm not sure vinegar's necessary at all. Maybe your immune system needs a boost - the kind that comes from letting your environment be 'real' a bit rather than trying to sterilize it out of existence. You won't do that anyway, but you could be leaving yourself open to trouble by trying too hard to do it. FWIW I'm not at all sure your detachment problem is necessarily due to the mask, timing or not, but you'd be a better judge I suppose.

[Cpapian]

You are having a rough time of it and that s--ks.

You have some eye issues and infections
You have insomnia
You are not getting enough sleep
You have a xpap
You are swallowing air
Not sure if you are happy with your mask

So here is the good news. You are doing a wonderful job of being proactive with your health.

I am a newbie myself, so I will just touch on stuff to investigate until one of our more experienced members kicks in.

First point - your medical issues- keep up with your doctors, they know best about that stuff.

Next - insomnia. This is the one you have to fix first. For many insomnia and sleep apnea go together. Probably because you haven't been breathing often enough so your body is afraid to fall asleep (my take on it). You need sleep and your body is screaming for sleep. (Who knows maybe that's why you're having medical issues). There is a member named Robysue. Robysue is an expert in helping people with insomnia issues. She hasn't been around lately, but look up her name and read her posts. She is truly gifted at this. I speak from experience. I came to this board three months ago with insomnia. Much better now, but it never stops taking work. After reading several of RobySue's posts, I started giving a lot of thought to what I was doing and made a few tweeks. So really, search out RobySue's posts. You will be amazed.

Now I am going to jump to arophagia (swallowing air). We can't see what settings you are using, so maybe post them for people to see. You are not alone on that issue. I join you also on that one. What I have observed is you gotta keep your mouth tight. Keep your cheeks in, make your tongue fill up your mouth, so there is no room for air in your mouth and focus on breathing through your nose. Practice when you are awake

Other things, chin straps, putting cement blocks under the head of the bed, so you sleep on an angle, taping your mouth closed, cervical collar. Try one at a time.

The other thing, and this is a biggie, download SleepyHead. Then take the SD card out of your machine and import the data to your computer. Post a screen shot of a typical night where you had bad arophagia. Maybe one of the gurus here will find something to change/improve. Look for instructions on SleepyHead and Imgur for posting.

You need at least 7 hours sleep every night on the xpap. More even. So you want to get to sleep and stay asleep. To do that you need to be comfortable.

I have trouble getting to sleep but usually once there nothing wakes me. Think about what's interfering with you getting your hours. Then ask for help for those specific problems.

And my final thought for you is look at your machine as your friend. It is helping you breath. Sure you look like an alien, but who cares, you're breathing and nourishing your body with fresh oxygen. It is no weirder than wearing glasses, or contact lenses.

Once you get SleepyHead you will see every breath you took on the machine. You will see where the machine comes in and assists you when you need it the most.

Ps spelling mistakes are the fault of my tablet.

[kteague]

Sounds like you've had a lot to deal with in a short time. About the mask, I agree with the person who suggested a mask that nas nothing across the bridge of the nose. Wonder why your provider didn't recognize that as an option. Another thing to consider, there are connecting ducts between the nose and the eye. Some have reported treatment air coming out into the eye - not as a mask leak. If there's any chance the air going in your nose is coming out the duct in your eye, since you say you are a mouth breather, maybe an oral mask would be a better option. I've known one person who used an oral mask and she loved it. I don't understand this well enough to know if air from an oral mask runs the same risk but it's worth asking. You'd have to be able to discern if you're having issues from mask fit or from the treatment itself. Since your apnea is severe, I hope you'll be able to both preserve your eye health and treat your sleep apnea. You haven't yet run out of options, but I certainly understand your frustration.

[LSAT]

there are full head masks that wont touch the eyes

They're known as "bags".

[chunkyfrog]

He probably means "total face" or fireman-style-- ignorant twit!

[AMK]

I had symptoms of, and was diagnosed with, vitreous detachment 15 months after starting cpap. I've never considered the two to be related. I'm "at that age" and also I wear glasses...the specialist I saw said that nearsighted people develop vitreous detachment at a younger age. My eye calmed down shortly after the appointment. He told me that if I ever see a shower of lights or floaters or spider webs that that would mean my vitreous has completely detached and I must rush in to make sure it didn't take a piece of my retina with it.

When I first started cpap I had a terrible time with my eyes. I used nose masks and I would wake up with swollen red eyes. I use a nasal pillow mask now and my eyes have been fine. I tape my mouth shut. I don't think that my eyes could tolerate a full face mask.

[WearyOne]

I, too, was diagnosed with vitreous detachment. I've been on xPAP for 10+ years, but did not have vitreous detachment until about two years ago. Eye doc says it's "age related." (Funny, or maybe not so funny, I keep on hear that about stuff.) The symptoms were very scary at first. Saw the eye doc to make sure that was what it was, although he felt sure it was by my description of the symptoms. The symptoms subsided, which is what he said would eventually happen.

[Rhrh]

Thank you all so much for reading my long story and such great feedback.
It is sad, but I have an update. The "large black circle" was found to be a retinal tear (of course the retinal specialist a week ago said that "a grey curtain dropping over my vision" was the only sign to be worried about, thanks buddy, I waited two days and then needed emergency surgery right after they found the tear...), so I am on bedrest until it heals, post some painfully nasty eye surgery (that "won't hurt a bit"). I can't even get into a car to get a new mask nor go answer the door, but the good news, if there is any, is that I have to sleep on my side which makes my # of events much less (I have 90% of my events in the supine position).

I was intrigued by the nose/mouth mask that doesn't go near the bridge of the nose, but with these horrible eye issues, I will be asking about the mouth-only mask, especially if they can ship it to me or drop it off when the spouse is around. I'm already getting nasty emails about not using CPAP

Yeah, a retinal tear after vitreous detachment happens less than 5% of the time, I'm told. I am under 50 years old, which I was also told is "young" for vitreous detachment.

But anyway, I want to thank you guys for me looking forward to getting my CPAP situation improved tomorrow. I don't know if the CPAP affected my eyes to such a great extent or it's one of those marvelous coincidences, but going to a mouth-only mask should be a good path to getting back on CPAP as much as possible. Even if there is less than 1% chance the mask was messing me up, I really don't want to lose sight in one eye.

About the other things - there is no SD card, but there is a spot for one. It uses mobile data so they have to download the details off of the Resmed website I guess. I'm not sure of the settings or how to find them, I feel like the low is 4 and the high is 10, from what I recall. Maybe if I pop in a SD card it will record on that in addition to having online data available?

I use the "MyAir" website, but the data is limited as many folks probably know.

[WearyOne]

Rhrh, so sorry the eye problem turned out the way it did. I hope healing goes quickly and with as little pain as possible. Ignore the nasty emails and ignore the people who sent them. CPAP use is important, of course, but there are times some of us can't use it. Period. It's not an excuse not to use it, but a valid reason.