appears an unusual situation

[woozle]

I haven't seen much of this problem and don't want to bore others but if someone out there has this problem, that I have not yet read about, then I hope this helps -
I am off to the sleep doctor tomorrow - the one I haven't seen since I was first in his office prior to the sleep study when he said my neck circumfrence (sp) wasn't 17, was 15, and I am not overweight and I don't have enlarged tonsils, adenoids, etc. He was 'very doubtful' that I had sleep apnea - then after ahi of 76, severe, ugh - then after being on cpap for 1 month, I saw a different guy who told me if I lost 20 lbs, the apnea would go away, then I asked him to look at my chart and would it really go away with just that as I have it severely and have known I have always had it at any weight? uh, no, it is combo of factors - duh -
anyway - saga was swift was wonderous, until sinuses inflamed, had ct scan, can't use ANY nasal interface as will inflame/hurt badly - so switched to umff which I HATE but use anyway and I got the hybrid and upon RG's great idea she had mentioned, I removed the nasal things and taped over the 2 holes on top and got a mouth guard as my mouth won't naturally stay open - and I cut the dumb chin thing off too, and then, wow, it worked well for awhile, but even with my humidifier on as high as it will go, my throat is SO dry every 2 hours that I get up, take apparatus off, get something to drink (usually water, laterly I am thinking vodka..... hmmmmmmm peach schnapps!) and then go back to sleep - so still having either nasal pain or throat pain during the day
so anyway - I have researched how and why sleep apnea may occur re; the physical aspects, and my ENT who did the CT Scan said from looking at my anatomy of the throat, palate, and all that, it doesn't 'look' like I would have it, BUT he mentioned my tongue in the back is awfully thick! and he thought that may be it - so did more research and that could be it - and I was trying to figure out how to fashion a retainer with a looped wire on the back to keep pressure on the back of my tongue to see if it would work, when after HOURS of research for any type of oral whatever might work for me, I found there is a type of oral -dental- tongue retaining device that I am going to ask the dr about!
So I see the doc tomorrow and I think he may be a little.....takne aback? when I throw all this at him - I am REALLY hoping he can help me and that he knows more than I do about all this - but was not impressed the first time I saw him so will see
I then see my DME on friday to possibly get the oracle - may see if they have a tiny squirt bottle that attaches to it to squirt the throat every 10 inhales or so -ok, now entering la la land - but it has not been a good 2 months for me -
I am so compliant but it has been painful - I feel that it HAS to get better at some point - I did see that those w/ severe/life threatening osa could underog a tracheotomy if no other treatment worked - I am not that desparate yet! - so been on cpap for 3 months and will have 4 masks -
I hope that one of them is a winner or a dental appliance that doesn't choke me will work

so I am not really sure what the point of this is, but to relay my saga and I guess see if anyone has any advice on anything - and take care all - I appreciate all the info I have obtained thus far on this quest to breathe AND sleep

[woozle]

forgot to add that I have also tried taping my nose when using the hybrid - and I don't recommend it - it was way creepier than taping your mouth

AND the weird thing is that I don't even need it!! Weird part is that when pressure/breathing thru my mouth, something in the back of my throat, soft pallate? appears to shut off the nasal passages and just does the oral passages
anyway, that's it

[C-Man]

Woozle - I read your post and can relate. My DME suggested that I have a very thick tongue. There is another member on this forum who is currently using the TAP system, so I am waiting to hear back on his results. By the way, why do you hate the UMFF. I have the same mask and I have been having difficulties with leaks lately. I have been using CPAP for approx 7 months now and I just got a new cushion and a new S8 auto vantage machine and the leaks have been horrible. I am talking to my DME to resize me for the mask and see if that helps. I just want a mask that comes out of the box ready to work without leaks. Does anybod out there think that because of me switching to the S8 Auto Vantage from the Auto Set Spirit that for some reason the pressure would come on stronger faster? Not sure, maybe I am just grasping at straws, but it seemed that with the Auto Set Spirit I could log 6-8 hours now with new UMFF cushion and new S8 Auto Vantage I can barely do an hour before the leaks frustrate me to the point that I almost want to throw the mask across the room. Very frustrating. Any advice would be appreciated.

Craig

[woozle]

Thanks for the info, will be glad to hear any info on the Tap

also, the umff - it leaks into my eyes which I truly hate - and if I have my mouth open to breath - which I need to do, and during night I close it and breathe out of my nose and it moves/unseals when my jaw opens/closes

so leaks - leaks - leaks - I loved the swift as I said, so I think going from that not feeling anything to this has been hard

I am sorry I can't help you though, I don't know why that would change
I do know when I switched machines my pressure changed a little bit

[Snoredog]

woozle wrote:

...and my ENT who did the CT Scan said from looking at my anatomy of the throat, palate, and all that, it doesn't 'look' like I would have it, BUT he mentioned my tongue in the back is awfully thick! and he thought that may be it - so did more research and that could be it - and I was trying to figure out how to fashion a retainer with a looped wire on the back to keep pressure on the back of my tongue to see if it would work, when after HOURS of research for any type of oral whatever might work for me, I found there is a type of oral -dental- tongue retaining device that I am going to ask the dr about!

Most OSA IS caused by the tongue falling into the back of the throat. Your anatomy can look like the grand canyon as far as the throat exam goes, but a big ole tongue is going to fall into the back of the throat as soon as you hit REM sleep, as you cannot control those muscle(s).

If your tongue is falling into the back of your throat as the primary cause of your OSA, nasal mask air delivery will be your best bet for pushing it up and out of the airway. If the Swift causes you discomfort to the nares the Hybrid will do the same. If at all possible you need to use a nasal or full face mask that goes on the outside, consider one the UltraMirageII or the Activa.

Schnapps is great frozen up in the snow skiing but it is about the worst thing you can do for OSA, it makes your OSA much worse. For your dry mouth consider a special non alcohol based mouth wash called BIOTENE, sold in grocery stores in the mouth wash section. It has a flip up squirter, you just squirt some in your mouth swish it around and spit out the rest (it tastes pretty good too). Your mouth is drying out do to the air delivery via the mouth, this can even make the tongue appear larger.

The tongue is attached to the bone on the back side of the chin at the front, when it relaxes it extends back down into the back of the throat and blocks off the airway, easier to do if you sleep in the supine position on your back. Try sleeping on your side or stomach.

Dental devices work by moving your mandible down and forward, this pulls the tongue forward and away from the back of the throat at the same time.

[woozle]

Saw the doctor and I am impressed!!! I reviewed everything in detail with him and he was very knowledgable about the masks, treatment, everything - MUCH better than the other doctor I saw -
anway, he said that re: my intense pain with nasal interfaces, that I need to get a cool mist humidifier, and turn it on and have the mist going towards the filter of the cpap machine, and then turn my humidifier on high and I should be able to use the nasal interface, which is the only time I had success cpap/apnea wise, but with pain - he said the pain and inflammation is due to not enough moisture for the nasal passages - he also advised if that doesn't work, to get a 2nd cpap humidifier - passover so use the one in the machine and have a second one - hallelluja! I tell you, I was so relieved I almost started crying - also, we discussed how I am pretty sure it is my tongue that is the problem - he agreed and it was weird, he checked my name and everything when he first came in to ensure that I was the rigth patient - he said I had no characterstics of someone w/ such severe osa - anyway - he also referred me to a dental appliance guy in seattle - he said IF the osa is all due to the tongue, and I obtain an appliance for that, it may be very effective with the apnea - he noted a lot of times people have a combo of reasons why they have osa - but mine appears to be just one - so that would be great too!
So having not one, but two options that might work is great - I was ready to go off the deap end there pretty soon, dreading going to sleep, thinking about it all day, dealing with it all night - I am sure some can relate to that cycle - anyway - I am not going to get the oracle tomorrow - but am going to try the hybrid tonight as it is supposed to be used!!! I will keep posted if it helps someone on if the 2nd or 3rd humidifier works and/or if the dental appliance works - and wanted to relay a good dr story - I guess my apnea's were 55 seconds to 65 seconds w/ ahi of 76 so not that that is good, but I understand why I am still feeling so bad - and can rectify it

[woozle]

again forgot to note - that memory thing!!! snoredog, I wanted to note I'm not a drinker and was totally joking about the schnapps!!! and your advice and info was great and much appreciated ~