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liz4cps commented on liz4cps's group Prince William Co, VA support group
"BluePoint Medical* holding their next Remedy event on June 4 with Terry Cralle, RN on "Sleep in the Mordern Family".  They will also be checking CPAP machines and providing breakfast. Click on link above for more…"
May 7
Dan Lyons posted a discussion

CPAP & Dry Mouth

In recent months, I have developed extreme dry mouth as a result of the CPAP.  I am a mouth breather when using CPAP.Recently, I saw an advertisement for the symptoms of dry mouth, but as usual, when I need the information to have a discussion with both my primary care  physician and my dentist I haven't seen the ad. Has anyone else seen the ad and can anyone remember the info in the ad?Thanks in advance,DanSee More
Mar 30
richard graham posted a status
"My deductible is double what a machine is online but I can't get the machine set up. Any ideas?"
Mar 10
BeeAsleep posted a status
"Hi all. I am just checking in and saying hi after being gone for a long time. I am doing GREAT! Just got a new machine and mask. Feel like I"
Jan 23
BeeAsleep updated their profile
Jan 23
99 replied to Fred's discussion CPAP - cure worse than the disease
"Do not turn light on as this hinder you from falling asleep or choose red light instead which do not afect your sleep"
Oct 27, 2015
99 left a comment for Joan Williams Rice
"Hi Joan visiting pelham and I have osa"
Oct 27, 2015
99 left a comment for martha crabtree
"Hi maths visiting pelham "
Oct 27, 2015
99 left a comment for Rhonda Harrison
"Hi Rhondda I am visiting pelham and have osa "
Oct 27, 2015
99 posted a discussion

Leaky gut

Do you have a leaky gutHow would you knowA telltale sign for leaky gut is Athletes footI wish to ask do you have or suffer from itThe reason I ask is maybe this is a common denominatorJust text yes or text noAnd if you are the first to text also keep a tallyExample38 yes 0 noYour input would alter the tally39 yes 0 noSo now I will input first1 yes. 0 noSee More
Sep 26, 2015
richard graham posted a status
"For the first time in a while I got a whole night sleep with my machine but woke up beat and left side of my head feels weird, not sure if"
Sep 2, 2015
Brendan Duffy posted a status
"How did you slhttp://blog.aastweb.org/winners-and-losers-food-for-thought-sleep-and-athletic-success?utm_campaign=subscribers&utm_source=hs_"
Jul 9, 2015
Pat Kniel updated their profile
Jul 7, 2015
ZolliStar replied to Fred's discussion CPAP - cure worse than the disease
"I'm wondering: what prompted you to consider whether you have sleep apnea in the first place? Also, waking throughout the night isn't uncommon especially as we (*sigh*) age.  I seem to every 90 minutes or so. This pattern probably…"
Jun 27, 2015
ZolliStar replied to ZolliStar's discussion New mouth device on the market
"You can try this website:  http://zyppah.com/ I have a MAD (mandibular advancement device). Dr. Steven Park evaluated my mouth and throat (not everyone can use a MAD, it turns out) and pronounced me a candidate for it. The truth?  I…"
Jun 27, 2015
Mary Z replied to ZolliStar's discussion New mouth device on the market
"The link didn't work so me so I couldn't see the product.  I do have experience with a supposedly reliable boil and bite device.  I should know by now I have a small mouth and nothing regular size fits.  I don't think…"
Jun 27, 2015
richard graham replied to ZolliStar's discussion New mouth device on the market
"If I thought something could work other than this lousy cpap that would be awesome"
May 22, 2015
richard graham posted a status
"I moved and have been sick a lot and can't use cpap because of cough and I'm depressed a lot"
Apr 26, 2015
Fred posted a discussion

CPAP - cure worse than the disease

It's ironic that before I was diagnosed with sleep apnea in 2000, I had no problem sleeping 8-9 hours a night. If I did wake up during the night, I had no problem falling right back to sleep, and I wasn't tired during the day.From the first night I brought home the CPAP I haven't had one decent night's sleep. Not one. I don't have any problem falling asleep, but I can't stay asleep. At first I was waking up after 4-5 hours and couldn't get back to sleep for a couple of hours. Now it's more like…See More
Apr 13, 2015
Fred updated their profile
Apr 13, 2015


Treatment of Last Resort



Folks  I was first diagnosed with Sleep Apnea in 2003.


Over the last 7 years I have had 7 sleep studies, seen 6 different sleep doctors, I used 6 different machines, including CPAP, BiPAP, BiFLEX and
AutoSV’s.



I also had the UPPP surgery early on in 2004, it  made things worse.


--Long sob story deleted --




In Oct 2009 I went in for Nasal Surgery, turbinate reduction and to fix a deviated septum. The ENT who did that surgery decided to keep me overnight in the Hospital even though this is
normally an outpatient procedure. He saved my life by doing this, the nurses
found that my heart rate was going down below 20. They held me over another
night to be sure the anesthesia was not doing it, same thing happened. Off to
the OR again for a pacemaker. The cardio guy said that the heart rate was a
direct result of uncontrolled sleep apnea.




The Nasal surgery was a Godsend, for the first time I could comfortably use the BiFLEX machine. This was one of Respirtonics “System One”
machines. I really thought I finally found an acceptable way to manage my Apnea,
but no,

like so many times before, we try something new, It works for awhile, but my AHI starts creeping up again right, now it is over 30.


Before the nasal surgery, I had the problem with mask leaks and comfort (compliance). But the pattern was still there, one
Sleep Study shows OSH only, the next study, shows mixed OSA, CSA, then back to OSH.



The last sleep study in May showed OSH, and “periodic breathing”. So he took away the System1 BiFLEX and gave me the new System1 AutoSV. Now he wants another sleep study.

He claims that this is necessary because Respironics will not say how the AHI is calculated (for another thread).


 My insurance company, United Health Care, has been so good to me and has covered a lot of
these expenses, but they will not approve another sleep study or a different
machine. But its not really a money thing, I can't keep doing the same things over and over and expect any different results.


So, the real reason for the thread – What is the treatment of last resort ?I asked if a tracheostomy would be the answer, he said no.


Thanks all .. I really could use some ideas ..


-Fred Stellabotte

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Replies to This Discussion

yes, tracheostomy is generally considered the treatment of last resort. it is 100% effective for OSA. in fact, it's often considered the only obstructive sleep apnea cure. some people also speak highly of MMA surgery, which restructures the facial anatomy/ jaw. but given a choice between the two, i'd personally go with the tracheostomy because it's more of a guarantee/ cure, less complicated surgery so less can go wrong, and is totally reversible in case something comes down the pike that gives us all a better treatment option than what exists now. keep in mind that neither MMA surgery nor tracheostomy will treat central sleep apnea.
What type of apnea do you have? OSA, CSA, or complex? A trach will cure OSA, but not CSA.
Rock Hinkle said:
What type of apnea do you have? OSA, CSA, or complex? A trach will cure OSA, but not CSA.
I have had 3 sleep studies in the 18 months .. the first 2 said I only had OSA .. The last study said that I had OSA and complex. This is not unusual for me .. of 10 year and almost as many sleep studies .. I diagnose flips back and forth.

I am thinking .. if I could get the OSA cured .. I would be a whole lot better .. But I can't get a doctor to consider it.
you should leave a comment for Mack Jones. He's a doctor who has had the tracheostemy himself and is a big advocate for it when all else fails. he's also in Florida, which is where i see you are. Although he himself wouldn't be the doctor to do it for you, i'm sure he'd be able to recommend someone near you who would.

Fred J. Stellabotte said:
I have had 3 sleep studies in the 18 months .. the first 2 said I only had OSA .. The last study said that I had OSA and complex. This is not unusual for me .. of 10 year and almost as many sleep studies .. I diagnose flips back and forth.

I am thinking .. if I could get the OSA cured .. I would be a whole lot better .. But I can't get a doctor to consider it.
I responded to your other thread and now see where you have some mixed and conflicting reports from previous sleep studies.

If Dr. Jones sees your post maybe he will give you some input that may help in your situtation.

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