My husband has a CPAP which helps him breathe but he hates it ... like really HATES this machine. He says it is very difficult for him to sleep with the nose mask on (and especially when he has a cold, but who sleeps well with a cold after all). However when he tries to sleep without the CPAP, he wakes and snores so much and so loud, he doesn't really sleep at all (during his sleep test, they determined he woke between 75-90 times per night). This has been going on for over 2 years.
Recently he was starting to self-medicate with knock out medicines, ex. NyQuil or Simply Sleep (antihistamine), so he could get through the night. So I sent him to the doctor, who has given him Trazodone as a short term sleep aid, and he's decided to pursue surgery as an alternative to the CPAP.
I have heard that the surgery is only really a 'temporary' solution and that the apnea can come back later in life as the tissues in the throat / palate soften. Is that true? Is there any alternative for him to full blown surgery vs. using the CPAP?
He's a little frightened by the prospect of going through all that pain and recovery only to find that it did not / will not be permanent. One reason I think it might work for him is the hole in the back of his throat is literally only about the size of a nickel. So, removing those excess tissues might help him.
I am sorry he suffers from this. While he cannot and should not just stop taking prescribed medications, there are natural things he can take which might help him sleep more comfortable. This includes herbal teas, melentonin, and things to do before sleep. I read that the better the smell of a room, the more peaceful the sleep and also, taking a warm soak before bed could greatly enhance the sleeping experience. Another thing you two can look into is if there are "better" machines he can use that might not be so uncomfortable. If I find anything, I will post it, other people will post too. I hope the best for both of you, please post and let us know what is going on.
It sounds like he has never received the support from his sleep professionals that he should be getting. And/or he's never asked for help.
His pressure setting might not be correct. His mask may be far too uncomfortable. He may be having too high a leak rate from mask leaks or mouth leaks.
1] Resmed, Respironics and Fisher & Paykel all will replace FREE to the local DME provider most any of their masks that a patient has tried and been unsuccessful with IF the DME provider fills out a form and returns mask and form W/IN 30 DAYS. Thus there is ABSOLUTLEY NO EXCUSE for your husband's DME provider to not offer him a lenient mask exchange polilcy to find a comfortable, relatively leak free mask. Far too many local DME providers are NOT lenient w/regard to mask exchanges.
2] PROPER FITTING of the mask is IMPORTANT. The mask cushion needs to fill w/air to prevent leaks and tightening the straps too tight defeat this purpose. Facial tissue is subject to the law of gravity and most masks are better fitted whilst laying down w/the PAP turned on at the set pressure or 10 cms whichever is highest. The MASK is the KEY to successful CPAP therapy once the needed pressure has been determined.
At this point in time he should ask his doctor to script a one month loaner auto titratiing PAP such as a Resmed S8 or S9 AutoSet or a PR SystemOne or Respironcs M Series Auto PAP "with" heated humidifier. The pressure range should be set 1 to 2 cms below his current set pressure, NO LOWER and the upper pressure range can be set as high as 20 or just 2-3 cms above his current set pressure. The pressure range should NOT be set at 4 cms - 20 cms. That is a sign of a sleep professional who doesn't have a clue about using or scripting an APAP.
He is CORRECT in being worried about going thru the pain of surgery for little to no benefit. Stanford in CA is the leader in the field. They do NOT go in and do all the surgeries at once. The surgeries are done in stages. The least drastic first. If he has a deviated septum, deviated enough to consider surgery, that often allows for more successful CPAP therapy by allowing freer, more comfortable breathing thru the nose.
Perhaps, if as you say, his internal throat opening is drastically small it might be due to enlarged tonsils and just a tonsillectomy would solve most or all of his problems. I'm not sure about the turbinates, I think if they are enlarged they are done along w/the tonsils. Often just shaving or shortening the uvula is all that is needed. Removing the uvula entirely often causes more problems down the road w/swallowing. PERMANENT problems. UPP and jaw advancement are VERY DRASTIC surgeries and your husband should THOROUGHLY investigate just what and how it is done AND the actual success rate!
If he is determined to follow the surgical route he really needs to ask WHAT the surgeon considers SUCCESSFUL surgery. Is the surgeon's definition of successful the same as your husband's definition of successful? Is the surgeon's success rate proven by an in-lab sleep study a year after the surgery? What is the surgeon's success rate?
What brand and model CPAP is your husband currently using? I've found that using a fully data capable CPAP, one that allows ME to access my therapy data each morning encourages me to continue w/CPAP therapy even when I am having difficulties as the data helps to point out what the difficulties are - most often just too high a leak rate.
I've used and been happiest w/the Resmed S8 Elite, then the Resmed S8 AutoSet Vantage and then the Resmed S8 VPAP Auto when I needed to be switched to a bi-level PAP due to my COPD.
I've also used, and gotten good therapy with, the Respironics pre-M Series Auto, the Respironics pre-M Series Bi-PAP Auto and the PR SystemOne Bi-PAP Auto but the nightly data is not as easily accessed via the LCD screen and not as much data is available via the LCD screen as w/the Resmeds.
Altho I used both the Resmed ResScan software AND the Respironics EncorePro software for even more data than is available via the LCD screen again I found I preferred the Resmed ResScan software for ease of installation, ease of use and understanding of the nightly data. Each require their own proprietary software. The software is NOT interchangeable. Nor are the humidifiers.
I would venture to suggest that your husband would have more success w/his CPAP therapy if he began to take a more active role in his own therapy. No one has a more vested interest in his health and therapy problems than he does. Forget prickly male pride and ask for help from his sleep professionals and if that help isn't forthcoming, educate himself and take charge of his therapy himself.
I agree that there are likely things he can do to make his CPAP experience less bothersome. While the surgeries available must help some people, knowing if you (or your husband) will be one of the successes is an educated guess if he has a good doctor, a crap shoot if he doesn't. Some do go on to need CPAP anyhow. I've read numerous stories of those who ended up with more trouble than they had, but I've only known 3 people personally to have the UPPP surgery and had their uvula removed. Neither of the 3 were "cured" of OSA. One had trouble controlling liquids and would often strangle or they'd go up his nose. He still doesn't sleep well. Another went on to get a dental device as he was determined to not use CPAP. Says he sleeps fine, but every time I see him he's falling asleep. The 3rd was snoring again within a few months. My brother's coworker had the MMA and said it did help him a lot. Said it was barberic but worth it. Don't know if it got him off CPAP. For what it's worth, I had a lot of trouble with CPAP early on - even quit after a few months of misery. Came across some who were experienced who gave me some tips (much like above) and 5 years later using the CPAP is nearly 2nd nature.
Thank you all so much for the helpful advice. I am sorry that I took so long to reply, I was out of town this past week with no Internet access. I really appreciate the time you took to write the answers. I wish I could pick more than one best answer!!
So far we have not made any progress toward the surgery but he is still miserable. We are both very much on the fence about this. He is convinced that the mask is fitted properly and pressure settings are correct, but I must agree that I don't think he is getting the support he needs from the doctor he's seeing now (I am seeing the same doctor and have had some doubts about her treatment of some of my problems, which don't include apnea to boot). I have thought about possibly having him see a specialist --- or is this something that typically a family doctor should be able to assist with per normal course of business?
I appreciate all the detail on the machine types and settings. Right now he is using a ResMed "Escape II" with a heated humidifier. Unfortunately the settings that I know how to access on the LCD aren't that intuitive or helpful (looks like ramp, language, usage, etc.) but I know there are more "hidden" settings somewhere (would need a manual to find them). As for getting a loaner or another machine, we have had a REALLY BAD time between the doctor's office, the distributor and the warehouse last year with getting/returning the loaner when his old machine went belly up (went defective while under warranty - working with Carecentrix and Apria, if anyone's heard of them). Not only was the loaner a different brand (Fisher - it was actually a little better fit/nicer for him than the ResMed) and they made us purchase the $300 of masks/filters/reservoirs which we couldn't use in his ResMed, they tried to make us purchase the loaner after they "forgot" about the warranty repair that we ordered and tried to bill us for both machines.... and it just goes on ad nauseum. I think we FINALLY got everything squared away with them. In other words it is a GIANT pain and if anyone has any advice in this arena other than "keep fighting" for the right equipment, I'd be all ears. Perhaps a different doctor would help us navigate these waters as well.
I completely agree about getting him interested in his own therapy. This is a problem for him that not only interferes to a very very large extent in his health, but also in our marriage (hence my interest in this). It's not just a matter of 'snoring,' the lack of sleep introduces mood swings, irritation, lack of concentration, to the point of irrationality and tiredness akin to 'falling asleep at the wheel' (literally or figuratively) that is not only difficult to deal with but dangerous. I have tried to talk him into discussing this with the doctor further (who as I mentioned previously, may not be the right one to help with this), but he insists that if he can just knock himself out with Trazodone every night he sleeps "fine" without the CPAP (which I know not to be true simply based on observation). I don't believe the doctor discussed any of the surgery risks that you mentioned with him either, which disturbs me. Until I can get him to investigate this on his own, I will just keep working on him. These comments will really, really help.
Your story of your ordeal regarding equipment is not too unusual. First of all, that Escape can deliver effective treatment, but unfortunately does not give you any data to tell you if the prescribed pressure is effective. I don't want to be out of line, so I'll just say I agree with your concerns about the care he is receiving from this doctor. Early in my problematic treatment, after researching on a website all about cpap I bought a used machine with the data features for a fraction of the advertised cost and found my pressure needed increased by 2 points. He can ask the doctor to order him a two week trial on a data capable machine to see if they can pinpoint the problems.
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