Trying to reset cpap back to autopap...may need instructions

[MJKelleher]

What is his pressure set to? If he's starting at too low a pressure, I can see that feeling like he can't breathe.

Looking at the report, his machine is currently set to 4.0 as the minimum pressure and 12,0 as max,

I'm not the expert that many others are, but that 4.0 seems very low. When I started, the ramp setting started at 6, and I felt like I couldn't breathe. Having it set that low would've been an absolute disincentive to keep the mask on!

For what it's worth, for years I had semi-chronic congestion, sinuses blocked nearly every night. (Non-allergic rhinitis - all the fun of allergies without the allergens!) In the 13 months since I started on the CPAP, that congestion has nearly disappeared. I'm able to use nasal pillows, and think the air pressure helps keep the mucus from settling in and blocking the sinus cavities. Your mileage may vary, normal disclosures apply......

[Debijo]

There is an alternative to shots now. That is what I use, it is sublingual drops, 3 drops a day, supposedly 3-5 years and allergies are supposed to be over. Much more convenient than shots! About $30-40 per month.

[PreemieNrsTiffy]

I swear by my nose spray, the steroid kind. I have used most of them as my insurance plan changes their mind on which one is "preferred", Nasonex, Flonase, Vanceril, they all work fine for me. I understand the husband that is non-compliant with a medicine regimen. I put my husband's meds in a weekly pill container and hand them to him nightly including his steroid nasal spray. This works for us as neither one of us can endure another drug holiday. He either has to take his anti-depressants or I will need something very strong to knock me out, maybe something like heroin.

I understand your husband's complete frustration with nasal congestion. I rarely suffer with it but it just about does me in when I can't get my nose open at night and it hasn't yet happened since I went on the CPAP so that should be an adventure. But I cannot overemphasize how helpful nasal steroids can be. I tried to get my brother to try them for years, giving him a spare bottle here and there, explaining how they had to be used consistently for a couple of weeks to work. Of course he doesn't listen to his sister the nurse, but to his mother, the church musician, several years later.

You stated you worked in the medical field and if you work with many medical doctors and surgeons you will learn an important lesson. Surgeons cut, it's what they do and it's the only way they know how to treat problems. They truly believe that when there are multiple solutions for a physical ailment, and surgery it one of them, then it's the best solution. I'm sure there are exceptions but when you as a client to go see a surgeon of any kind (including ENTs), their solution will almost always include surgery. When your husband considers this new surgery (with the palate & tongue), and the surgeon tells you it's been highly successful, I would want his/her definition of success. I would venture to say that your husband's previous nasal surgeon considered his surgery a success as he was doing fine a month later at his follow-up appointment

[Seekinganswers]

I found this forum and am in hopes that someone somewhere can help me find answers or at least hoping to find others who are experiencing the same kind of problems as my husband.
I will make this as short but informative as possible. My husband who is in his early 40's has had many issues over the past 10 years with tendon and muscle injuries that wouldn't heal for months and even years. He also found out he had very low T a few years ago and got HRT at a well known place that inserts pellets every 6 weeks until it is up to par. They got his up to over 1000 and he was still exhausted all the time. As time went along, I became aware of his obstructive sleep apnea because it became severe enough that it woke me up. 3 sleep studies later, he was given a cpap machine. He found that he couldn't use it due to his deviated septum and stuffy nose. He would feel like he was smothering after a couple of hours if he could even start out with it on. So he had surgery on his nose last year, rhinoplasty with turbinate reduction. After the initial swelling went down and his nose healed, he was given a bipap machine. He used that pretty successfully for 2 months. Then his nose became so stuffy again that he could not use it at all and it is now collecting dust. As the weeks went by, he became more and more exausted and having to pull off the road to take a nap before he could drive home from 5 miles away from the house (scary) and he became more agitated/irritable. 2 months ago, his libido became non existant. We have been married for many years and have always enjoyed a very good sex life. Now it's gone and all he can say to me is he just has no desire to do anything, isn't looking forward to anything and just more or less gets through the work day as best as he can and comes home every chance he gets and takes a 15 min nap. He says he still loves me but just has no feelings when he holds me or looks at me. He had been having problem in that department for about a year, problems maintaining an erection but we would work through that to a good end, but now it's just nonexistant. This has been very hurtful for me but I'm trying to understand. Has anyone else had this experience? We have been to so many doctors in the past 5 years with this that we are losing faith in the healthcare field. The latest and greatest news is, I found a sleep apnea specialist who speaks all over the country who has examined him and told him he needs his tonsils, adnoids, uvula and part of his tongue removed which is going to be very very painful with a week stay in the hospital...but no guarantee of success..possibly 60%. HELP!

Hi Seekinganswers!

First please read and share with your doctors[1,2]!!!

Second I think I would look into traditional Chinese medicine. Many claim to be cured of OSA by these and I am finding what I have instituted so far useful. As well they have more cures and methodologies for sexual things than anyone I think. I did not expect to find that but it is certainly there.

May you find the best health!

Todzo

[1]: Gilmartin G, McGeehan B, Vigneault K, Daly RW, Manento M, Weiss JW, Thomas RJ.
Treatment of positive airway pressure treatment-associated respiratory instability with enhanced expiratory rebreathing space (EERS).
Source: J Clin Sleep Med. 2010 Dec 15;6(6):529-38. Division of Pulmonary, Critical Care and Sleep Medicine, Beth Israel Deaconess Medical Center, Boston, MA, USA.
Link: http://www.ncbi.nlm.nih.gov/pubmed/21206741

[2]: Dynamic CO2 therapy in periodic breathing: a modeling study to determine optimal timing and dosage regimes
Yoseph Mebrate, Keith Willson, Charlotte H. Manisty, Resham Baruah, Jamil Mayet, Alun D. Hughes, Kim H. Parker and Darrel P. Francis
J Appl Physiol 107:696-706, 2009. First published 23 July 2009; doi: 10.1152/japplphysiol.90308.2008
Link: http://www.ncbi.nlm.nih.gov/pubmed/19628721

I have read through both of those articles. Very interesting indeed. I would be very interested in what you have used in the Chinese medicine line that has benefited you.

[DavidCarolina]

Same situation here to some degree---

FULL FACE MASK

KEEP THE BEDROOM COLD AND USE HUMIDIFICATION

SLEEP ON HIS STOMACH OR SIDE

PUT A BOOK OR TWO UNDER THE BED FRONT TO RAISE UP PREVENTING GERD

KEEP A REGULAR SLEEPING PATTERN

EXCERCISE DAILY BY RUNNING< BIKING< WALKING

USE TESTOSTERONE SUPPLEMENTATION BY PILL FORM

CONSIDER SEPTUM SURGERY ONCE STABLIZED

GET TO THE CORRECT WEIGHT

[Drowsy Dancer]

Looking at the report, his machine is currently set to 4.0 as the minimum pressure and 12,0 as max,

What is his prescribed pressure? That is, in the titration, what pressure alleviated his events? I am betting the reason he feels he can't breathe is because 4.0 is too low. Lots of people feel like they are suffocating on 4 cm. You have a data capable machine? I have to go back and read which machine he has. There is almost no reason whatsoever for anyone to be running a minimum pressure of 4cm. It's not therapeutic and unless the person's titrated pressure is 6 or something crazy low like that, it's too low to be able to rapidly climb to the right pressure when needed. Leave aside the feeling of suffocation that many people experience.

I totally agree with SU. I think 4.0 is absurdly low as a starting point for pressure.

It sounds like he has an APAP (automatic, pressure can vary within a certain range) and not BiPAP (bi-level, inhalation and exhalation set to two different fixed pressures).

Seekinganswers, your poor husband sounds totally demoralized and depressed. He has to work on compliance things like the nose spray, though, and trying to breathe through his mouth in the interim.

[Julie]

I'm not su re a cold room and added humidity are necessarily the best thing for someone already congested.

[Pugsy]

Sorry I am late to the party here. I had some fires to put out yesterday.

Lots going on...let's start with the basics.
What machine is being used? What settings on the machine for sure?
Is this a Phillips Respironics machine? If so look on the bottom of the blower unit for a 3 digit model number. Tell us what it is and we can figure out which machine.
It helps us if we know what is for sure being used.
Ramp....at 4 cm that's a recipe for disaster.

I totally understand the not being able to breathe through the nose thing. When it happens to me it doesn't matter if I can breathe through my mouth or not...my body says "hey, you can't breathe through your nose...you are going to be MISERABLE till you fix the nose" Just because we can breathe through the mouth and use a full mask mask to get the cpap pressure therapy...doesn't mean the brain or body will cooperate.

There's a little experiment I ask that you have your husband do...ask him to take his fingers and press on the sides of the bridge of the nose up by where the turbinates are...sort of where the mask rests. Ask him to apply pressure that approximates the pressure from the mask. Ask him if the pressure causes any difficulty with air movement...congestion, etc.
Ask him to give it about 10 minutes if he can stand the boredom.
Main thing...does the pressure cause congestion or difficulty breathing through the nose?

So 2 things right now for me...Let's figure out which machine is being used and the nasal pressure with fingers test.
That's all I need for right now.
Oh..make that 3 things...what is the humidity level set at now on the machine?

[Kenwood]

Here's my cliff note story:
About 10 years ago, my nose got so bad I just could not use it - total mouth breather. Started using Afrin - but then the moment that stuff wore off - my nose would close off so tight it hurt. So went to ENT doctor. Doctor told me the bad stories of using Afrin - and I swore off the stuff forever. Did the nasal spray steroids. Did all the allergies tests and needle pricks - nada. Had a super deviated septum. Had surgery for septum /turbines - then went through the worse 3 weeks of hell recovery. Then six months later...surgery #2 for same thing. Doctor squeezed that surgery in on Dec 31st (since I had met my deductible). Swore I'd never do that surgery again. Jump forward to present day - doing more and more mouth breathing - snoring like a chainsaw - wifey sleeping downstairs. Total miserable thinking I might need another nasal surgery. Do the sleep study thing - AHI 131. Can't use my nose - a Full Face Mask gets strapped to my face.

Then the most amazing thing happened after less than a week of using CPAP - my nose is opening up. I can breath during the day and at night. With only occasional stuffiness that doesn't last long. I start to notice I'm using my nose to breath all night long. Guess it was the help of the humidifier (cold air not heated air). Pugsy takes me under her wings and mentors me. I'm having massive problems with FFM leaks over 100 L/min. Pugsy talks me into an experiment and she sends me nasal pillows to try. Sure enough - my best sleep nights ever. No leaks, no mouth breathing. I never would have thought that CPAP would actually help my nose to open up and breath through it. Total happiness now.

[NotLazyJustTired]

My story is not as extreme as yours, but I too, have noticed some relief with nasal congestion with xPAP. That is saying a lot too, because we are now entering high pollen season and yet I am as open as I have ever been. Combination of daily saline rinse and nasal pillows are working for me. I can't discount the ClimateLine/humidifier either as that seems to be helping as well.

[PST]

My story is not as extreme as yours, but I too, have noticed some relief with nasal congestion with xPAP. That is saying a lot too, because we are now entering high pollen season and yet I am as open as I have ever been. Combination of daily saline rinse and nasal pillows are working for me. I can't discount the ClimateLine/humidifier either as that seems to be helping as well.

One more plus for the observations about CPAP and congestion. I use a full face mask in part because I get congested often enough that my nose is unreliable. But CPAP seems to help. Often I go to sleep breathing mostly through my mouth, but wake up with my mouth closed breathing peacefully through two clear nostrils. Maybe that's just some of us, not all, but I think it's pretty common.

I also agree with every one who noted that a low pressure of 4 makes you feel like you are suffocating. That's been mentioned here over they years so many times it stuns me that any doctor or tech can fail to know.

[Seekinganswers]

Hubby slept with his machine 4.5 hours last night! woo hoo! I'm encouraged!! I have decided that his biggest problem is the machine and feeling smothered because of congestion in his nose and nasal valve collapse. I'm getting him an appt for another sleep study with his own machine. I think his settings need tweaked and I'm going to demand that he have as many sleep studies as needed to get him comfortable. I'm also going to change the mattress on our bed and we have a massage table that I'm going to get a face component for where he can lay on his tummy face down comfortably for naps and such so he can maybe get enough quality sleep built up to get stronger and clear his foggy brain! But I just wanted to let everyone know that the posts I read to him last night that said "yes you can breathe through your mouth with your full face mask on" and it being from people with the same issues as he has, helped him to know that he is not alone and he can do this! Thanks to everyone. Keep suggestions coming. You all have been a wonderful encouragement to me!!

[n0hardmask]

seekinganswers,

If you'll answer Pugsy's questions (above), particularly about the machine and settings, someone here can tell you how to adjust the minimum settings. NO need to wait until you and he get in to see doctor.
Attitude is a huge factor, and your sharing our suggestions with hubby can give him optimism to hang in there. He's lucky to have you backing him up.
Many of us have sinus and nose problems; one technique is to add 'flavoriing' to the air by putting some aromatherapy near the air intake. See cpaptalk.com/viewtopic.php?t=43607 I use VaporRub myself, and there's many other DIY choices as well as PurSleep products.
Keep on plugging, Y'all. earl

[Sir NoddinOff]

Interesting thread. I too had surgery for a deviated septum which involved reducing the size of the turbinates . I always had trouble breathing throuh my nose and I was pretty much a mouth breather. The ENT Dr said that the surgery would be like "opening a window" but he was wrong as the surgery failed and today I am exactly the same as before.

Been there, done that and have the bloody T-shirt to prove it. This was fifteen years ago and I had my turnbinates reduced and my perforated and deviated septum repaired (the latter is generally a good thing, I hear). These two procedures worked for a little while and my wife says my snoring wasn't as loud after the surgery, but still I was snoring. In retrospect I think my problems were in my airway, that is, my OSA was the core problem, not so much my in my nose Anyway, years later I decided to go on CPAP to address the real problem of my collapsing airway. I don't know if a tongue reduction or airway surgery would fix the problems (sometimes I've heard it has to be re-done a few years later). In conclusion, I would definitely get a second opinion. That's a bunch of expensive and painful procedures for possibly very little or no gain, like the case I just put forward.

[Todzo]

I found this forum and am in hopes that someone somewhere can help me find answers or at least hoping to find others who are experiencing the same kind of problems as my husband.
I will make this as short but informative as possible. My husband who is in his early 40's has had many issues over the past 10 years with tendon and muscle injuries that wouldn't heal for months and even years. He also found out he had very low T a few years ago and got HRT at a well known place that inserts pellets every 6 weeks until it is up to par. They got his up to over 1000 and he was still exhausted all the time. As time went along, I became aware of his obstructive sleep apnea because it became severe enough that it woke me up. 3 sleep studies later, he was given a cpap machine. He found that he couldn't use it due to his deviated septum and stuffy nose. He would feel like he was smothering after a couple of hours if he could even start out with it on. So he had surgery on his nose last year, rhinoplasty with turbinate reduction. After the initial swelling went down and his nose healed, he was given a bipap machine. He used that pretty successfully for 2 months. Then his nose became so stuffy again that he could not use it at all and it is now collecting dust. As the weeks went by, he became more and more exausted and having to pull off the road to take a nap before he could drive home from 5 miles away from the house (scary) and he became more agitated/irritable. 2 months ago, his libido became non existant. We have been married for many years and have always enjoyed a very good sex life. Now it's gone and all he can say to me is he just has no desire to do anything, isn't looking forward to anything and just more or less gets through the work day as best as he can and comes home every chance he gets and takes a 15 min nap. He says he still loves me but just has no feelings when he holds me or looks at me. He had been having problem in that department for about a year, problems maintaining an erection but we would work through that to a good end, but now it's just nonexistant. This has been very hurtful for me but I'm trying to understand. Has anyone else had this experience? We have been to so many doctors in the past 5 years with this that we are losing faith in the healthcare field. The latest and greatest news is, I found a sleep apnea specialist who speaks all over the country who has examined him and told him he needs his tonsils, adnoids, uvula and part of his tongue removed which is going to be very very painful with a week stay in the hospital...but no guarantee of success..possibly 60%. HELP!

Hi Seekinganswers!

First please read and share with your doctors[1,2]!!!

Second I think I would look into traditional Chinese medicine. Many claim to be cured of OSA by these and I am finding what I have instituted so far useful. As well they have more cures and methodologies for sexual things than anyone I think. I did not expect to find that but it is certainly there.

May you find the best health!

Todzo

[1]: Gilmartin G, McGeehan B, Vigneault K, Daly RW, Manento M, Weiss JW, Thomas RJ.
Treatment of positive airway pressure treatment-associated respiratory instability with enhanced expiratory rebreathing space (EERS).
Source: J Clin Sleep Med. 2010 Dec 15;6(6):529-38. Division of Pulmonary, Critical Care and Sleep Medicine, Beth Israel Deaconess Medical Center, Boston, MA, USA.
Link: http://www.ncbi.nlm.nih.gov/pubmed/21206741

[2]: Dynamic CO2 therapy in periodic breathing: a modeling study to determine optimal timing and dosage regimes
Yoseph Mebrate, Keith Willson, Charlotte H. Manisty, Resham Baruah, Jamil Mayet, Alun D. Hughes, Kim H. Parker and Darrel P. Francis
J Appl Physiol 107:696-706, 2009. First published 23 July 2009; doi: 10.1152/japplphysiol.90308.2008
Link: http://www.ncbi.nlm.nih.gov/pubmed/19628721

I have read through both of those articles. Very interesting indeed. I would be very interested in what you have used in the Chinese medicine line that has benefited you.

Hi Seekinganswers!

When I lived near Seattle I was able to find good honest high quality reflexology and acupressure. Since then I have only done those on myself using skills gained from “Acupressure and Reflexology For Dummies” by: Bobbi Dempsey and Synthia Andrews. The book is a good start.

Right now I have begun a study of Qigong (main current book series: "The Root of Chinese Qigong: Secrets of Health, Longevity, & Enlightenment" by Yang Jwing-Ming – just purchased "Qigong, The Secret of Youth: Da Mo's Muscle/Tendon Changing and Marrow/Brain Washing Classics" by Dr. Yang Jwing-Ming). Qigong is a much larger body of studies than I ever imagined. I moved toward it because of the “slow breathing” techniques which I found while doing a much larger study of breathing in other healing, personal development, and martial arts disciplines. The exercises are very low impact.

I have loved science since boyhood. In the last 50 years we have begun to understand that what we see is so very little of what is actually there. Indeed, apparently dark energy and matter make up much more of what is there than what we can detect currently. So believing in Qi is now a much smaller “stretch” for me. A system which has understood this energy and how to move it for some ten times longer than the time of so called “modern medicine” I do respect.

I am looking forward to my studies.

Have a great week!

Todzo