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

[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

Thank you so much. I will look into this. I lean to the side of holistic medicine anyway....as a matter of fact, I've used every essential oil known to man and every herbal remedy I could find so he is pretty much worn out with me "trying to fix him" as he says!!

[Seekinganswers]

Can someone tell me how to post directly to someone's post or answer them? If that isn't a possibility, then I will address each person in my reply. My husband does have the full face mask..covers nose and mouth. Used successfully for 2 months after nasal surgery, now says he smothers if he tries to use it. We are going to start Flonase spray to try to reduce the stuffy nose..i think that takes about 2 weeks to begin working. He did the nasal rinses morning and night until nose was healed pretty well. I am unsure what is causing the "stopped up nose" unless it is from the heat. I bought a humidifier but that hasn't changed a thing. We do plan to get second and third opinions. The only problem with that, is all surgeons are going to say "sure you need surgery!" I just don't trust any of them anymore! signing off until I get home this evening. Can't wait to get back here! Real people giving real informed advise. I am so encouraged. I'm not giving up on helping my sweet husband.

[SleepingUgly]

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.

What is the humidity on his humidifier set to?

BTW, Breathe Right Strips work for nasal valve collapse, so he doesn't have to use the cones.

Did you mean that he had septoplasty, or rhinoplasty (I think you said the latter)? The former makes sense, the latter could make things worse.

Does he have allergies? An allergist may be able to help. I think you said he's on some nasal spray, but not compliant with it.

I don't see how any surgery on his tonsils, tongue, uvula, etc (or anything other than his nose) is going to help his nasal breathing, which is at least what he THINKS the problem is. As per kteague, I'm not entirely sure why a full face mask wouldn't resolve the nasal breathing issue, which makes me think there are things that could be done to help with that (see above comments re: nasal sprays, humidity, pressure settings, etc.). Also the fact that he succeeded for a time makes me think there's hope for CPAP.

What was his AHI on his sleep study? Are his tonsils large? Unless his tonsils were extremely large, I wouldn't rush to do those surgeries (and even then, if it were me, I'd only do the tonsils and wouldn't touch the tongue, uvula, etc). The odds these surgeries will completely get him off CPAP aren't great unless he has very mild apnea and large tonsils, and they won't make a lick of difference to his nasal breathing. They might reduce his CPAP pressure needs, but again that's not going to help his nose.

Let's start with the assumption that his nasal breathing is the big issue, since that's what he's complaining about (at least for using CPAP).

He's lucky to have such an involved spouse!

[SleepingUgly]

Can someone tell me how to post directly to someone's post or answer them?

Click "quote" on a particular person's post and it will take you to a screen where their entire post is quoted and you can respond to what they said. If you want to delete some of what they said, you can, just make sure that the /quote in brackets is at the end of the quotation.

[Debijo]

I have had surgery for deviated septum and turbinectomy. It is only temporary. If it were me....I would see an allergist.

If these people at cpaptalk can't fix it, it can't be fixed! I Hope that somebody can come up with the solution for your husband, there is amazing amount of knowledge here, and it is not swayed by the almighty dollar!

Debi

[John from Brookston]

With everything your hubby and you are going through has he considered seeing somebody for some talk therapy? Sometimes a professional can ask questions or make suggestions that while they may not directly help his problems, they might help with the frustration and possible despair he must be feeling.
I don't understand his lack of desire, though. I'm on HRT, and while the past 2 weeks have been bad for PAP (head cold, claustrophobia issues) I've got the desire of a 19-y-o, just too tired to do much about it...

That's some really radical surgery being proposed, and I would get other opinions before proceeding. If he truly has big tonsils, I could see removing those, but the rest of the modifications sound rather drastic.

Keep us up to date, please, and welcome.

[Seekinganswers]

With everything your hubby and you are going through has he considered seeing somebody for some talk therapy? Sometimes a professional can ask questions or make suggestions that while they may not directly help his problems, they might help with the frustration and possible despair he must be feeling.
I don't understand his lack of desire, though. I'm on HRT, and while the past 2 weeks have been bad for PAP (head cold, claustrophobia issues) I've got the desire of a 19-y-o, just too tired to do much about it...

That's some really radical surgery being proposed, and I would get other opinions before proceeding. If he truly has big tonsils, I could see removing those, but the rest of the modifications sound rather drastic.

Keep us up to date, please, and welcome.

With everything your hubby and you are going through has he considered seeing somebody for some talk therapy? Sometimes a professional can ask questions or make suggestions that while they may not directly help his problems, they might help with the frustration and possible despair he must be feeling.
I don't understand his lack of desire, though. I'm on HRT, and while the past 2 weeks have been bad for PAP (head cold, claustrophobia issues) I've got the desire of a 19-y-o, just too tired to do much about it...

That's some really radical surgery being proposed, and I would get other opinions before proceeding. If he truly has big tonsils, I could see removing those, but the rest of the modifications sound rather drastic.

Keep us up to date, please, and welcome.

We have just in the past couple days talked about counseling because of the lack of desire and how it is hurting me. But that being said, I can deal with that now because if we ever get him sleeping, he will likely get back to his normal self.

[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

Thank you so much. I will look into this. I lean to the side of holistic medicine anyway....as a matter of fact, I've used every essential oil known to man and every herbal remedy I could find so he is pretty much worn out with me "trying to fix him" as he says!!

You might look into reflexology and acupressure. Learning how to move the energy to the right spot could be a kick!

[archangle]

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.

That's 99.9% quackery. Yes, some people report success. Lots of people think Jim Bakker or their favorite witch doctor cured them, too.

[archangle]

You might look into reflexology and acupressure. Learning how to move the energy to the right spot could be a kick!

More quackery. If these things worked, they'd be part of real medicine and you'd be being overcharged for them by the real doctors.

Just go see a witch doctor. They may convince you that you're feeling better, too.

[Todzo]

You might look into reflexology and acupressure. Learning how to move the energy to the right spot could be a kick!

More quackery. If these things worked, they'd be part of real medicine and you'd be being overcharged for them by the real doctors.

Just go see a witch doctor. They may convince you that you're feeling better, too.

If you actually looked into the research on Traditional Chinese Medicine you would find things more positive than CPAP treatment I do believe. But why would I bother such as one who speaks words without knowledge.

[archangle]

It sounds like figuring out how to breathe through his mouth when necessary may be the solution.

When he feels like he's suffocating, is it that he can't inhale, or that he can't exhale? Does it feel like there's something in his throat or what?

If at all possible, when he gets the suffocating feeling, don't rip the mask off. Try to breathe in and out and figure out exactly what's wrong. Can he inhale, can he exhale? Try to feel the airflow. Put your and in the airstream flowing out of the vent and see if air is flowing right.

BTW, this is getting too complicated wording this. I'm going to write as if I'm talking directly to him, not you.

If possible, look at the display on the machine and read off the pressure before you turn it off and before you touch any of the buttons or take off the mask. Try to keep the mask on until you see the inhale and exhale pressure. If it's a PR machine, you will need a light on or a flashlight.

Please look at the face of his CPAP machine and see how it's labeled. Something like "Philips Respironics BiPAP Auto" near the display.

The machine probably has some data collection that you can use to see what's happening when he has the suffocation attacks.

Unfortunately, the doctors and other professionals are often not that helpful in the process. It's not necessarily that they don't try, but they haven't been through it themselves. Often, one of the many other CPAPers here has been through your particular problem and figured out a work around.

If you can get him to try again, post your results here and see if someone has a hint. There are so many things you can try that there may be someone out there who has the magic cure for you.

On the surgery, be very careful. Some generic advice:

The tonsil and adenoid stuff is fairly safe, especially if he needs it anyway. The odds of it being "THE" cure are fairly small, but it IS the cure for some people.

The uvula stuff is VERY iffy. Lots of chop happy surgeons have done this on a lot of people and had poor success rates and a lot of lifelong complications. Google UPPP problems and you'll get justifiably scared. The surgeon's also have a very low standard of success like a 50% reduction in apnea index.

The turbinate reduction has some nasty side effects if overdone. Google "Empty nose syndrome." Sometimes it's needed.

Deviated septum surgery seems to have fewer bad side effects after you heal.

Mandibular advancement surgery is a BIG deal, but for SOME people, it's a godsend. It's a BIG deal with a difficult recovery.

I think the removal of part of the tongue sounds like it has some real potential, but it's fairly new to me, and I think they're still figuring out how to do it the best way, and how well it works long term.

[Todzo]

It costs about $2500 for the first year of xPAP therapy – sleep test – doctor visits – xPAP machine and all. So what if we took that an put it into Traditional Chinese Medicine. Better yet a study comparing results.

I would love to see that.

[archangle]

You might look into reflexology and acupressure. Learning how to move the energy to the right spot could be a kick!

More quackery. If these things worked, they'd be part of real medicine and you'd be being overcharged for them by the real doctors.

Just go see a witch doctor. They may convince you that you're feeling better, too.

If you actually looked into the research on Traditional Chinese Medicine you would find things more positive than CPAP treatment I do believe. But why would I bother such as one who speaks words without knowledge.

Hogwash. A few items of TCM show some slight benefits of questionable statistical relevance. Someone does a study of hooha root and finds it actually works statistically very slightly better than placebo and writes a study. While that's interesting from a scientific standpoint, it's not useful medicine.

In the few cases where XYZ root extract does work, GreedCo Pharma will develop a synthetic version, patent it, and have the real thing banned for sale in the US.

I do NOT like the way the medical mafia works. The problem is that most of the alternative medicine is just true believer self deluded witch doctors or deliberate scam artists. Just because there are some downsides to medicine based on synthetic chemicals doesn't mean that the chemical found is some plant is going to be good for you. The plant didn't synthesize that chemical to do good things for animals.

Even when a pure form of a medical chemical is prepared, and used carefully, many of them have long term side effects. Why in the world would you expect a witches brew of unknown chemicals of poorly controlled concentration would be safe just because it was synthesized by a plant rather than being produced by humans in a lab?

[Seekinganswers]

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.

What is the humidity on his humidifier set to?

BTW, Breathe Right Strips work for nasal valve collapse, so he doesn't have to use the cones.

Did you mean that he had septoplasty, or rhinoplasty (I think you said the latter)? The former makes sense, the latter could make things worse.

Does he have allergies? An allergist may be able to help. I think you said he's on some nasal spray, but not compliant with it.

I don't see how any surgery on his tonsils, tongue, uvula, etc (or anything other than his nose) is going to help his nasal breathing, which is at least what he THINKS the problem is. As per kteague, I'm not entirely sure why a full face mask wouldn't resolve the nasal breathing issue, which makes me think there are things that could be done to help with that (see above comments re: nasal sprays, humidity, pressure settings, etc.). Also the fact that he succeeded for a time makes me think there's hope for CPAP.

What was his AHI on his sleep study? Are his tonsils large? Unless his tonsils were extremely large, I wouldn't rush to do those surgeries (and even then, if it were me, I'd only do the tonsils and wouldn't touch the tongue, uvula, etc). The odds these surgeries will completely get him off CPAP aren't great unless he has very mild apnea and large tonsils, and they won't make a lick of difference to his nasal breathing. They might reduce his CPAP pressure needs, but again that's not going to help his nose.

Let's start with the assumption that his nasal breathing is the big issue, since that's what he's complaining about (at least for using CPAP).

He's lucky to have such an involved spouse!

Yes, he has only dust mite allergies...we've been that route when he had a sudden onset of coughing and coughed for a couple months before we finally went to the right kind of doctor who did allergy testing and found that his only allergy was dust. He did the allergy shots for about a year, then got busy working and kept missing the 2 week mark and when he would get the shot at 3+ weeks, it would throw him into a coughing fit that would literally go on for weeks..almost cough up a lung. He ended up stopping them and hasn't had a problem unless that is where the stuffy nose is coming from.
He has tried the breathe rite strips...they aren't quite strong enough to hold his nose open.

Looking at the report, his machine is currently set to 4.0 as the minimum pressure and 12,0 as max,
His AHI looks like 14.3/hr (copy is a faxed copy that is nearly illegible
supine AHI looks like 56.3
tonsils are very large doc says never shrank like most adults do.
surgery was septoplasty w/ turbinate reduction

Basically he is not looking for a surgical intervention to get him off the bi-pap or cpap, he wants to use it but can't because his nose is so stopped up he can't breathe using it. I have gotten home tonight and told him what several have said on here that he should still be able to use the full face mask and mouth breathe and he said and I quote "I CAN NOT USE THE MACHINE WHEN MY NOSE IS STOPPED UP"
He will hate me by the time he gets better but I'm not letting up!