spouse on CPAP.. I ned some advice !

[brendanebz]

Hello, I have been following alot of threads lately, thanks to all of you.. My hubby has been diagnoses with mod sleep apnea,, AHI of 53% in REM, overall 34% and on titration this was reduced to 24% with cpap... less than 10% improval for such a hassle we have been thru is sad, to say the least. He has a fisher paykel sleepstyle 234..our DME only has this brand, and the FP accessories..We have tried every mask, nasal pillow, and oral mask they make, including buying a hybrid that didnt work.. humidity on 4.0, pressure on 10, his respirations still shallow, But our big problem is the amount of throat and mouth dryness..even tried biotene mouth wash, taping lips on nasal masks, multiple full face masks..He currently is using the FP full face with out the foam insert, but only tolerating 2 hours before he dries out too much.. The leaks in this mask aren't so bad... This has been going on for 4 weeks so far..I am thinking about turning down his pressure as when he started on 7 he could handle almost 4 hours befor he gave it up. Can too much pressure be causing or increasing this dryness? Although with his high AHI , I got the feeling he would need to go higher than 10 even.. During the titration anything over 10 caused central apneas, and the doc wanted to desensitize him... Secondly the DME commented he is on his way to a BiPAP, which I would prefer for comfort sake. I asked about a type with data so I could monitor his information, and I was told they wont go for that as they "dont want families interfering with settings,and trying to read them" thats exactly what I want. As a nurse I want to see improvement in the numbers.. If we can get the doc to script BiPAP..what should I ask for so that DME has to provide..Thank you so much. This truly has been grueling on us both..I dont want him to fight so hard to sleep, or risk his health any more...
and as a sidebar.. only the spouses /bedpartners can understand the sadness we have to deal with when our bed has become a medical suite, and how it feels to reach over in our sleep to cuddle our partners faces and necks to be met by a huge plastic mask and rubber hose....those are gone now.

[Pad A Cheek]

Hello Brenda,
I know that you want some information to help improve your husband's therapy on CPAP but your post confused me a bit.


The part where you said you thought his pressure should be higher because of the AHI really is a misunderstanding. The pressure and the # of AHI have no relationship really. The pressure that he needs is based on how easy or hard it is to overcome the sagging of the inside of his throat that is closing off. What I mean is that a person can have 10 AHI and need a presssure of 18 cm of H2O or they could have 100 AHI and have a pressure of 7 cm of H2O. The pressure is the minimal of what you need to splint the airway open while he is totally relaxed while asleep.
That being said, if he had a titration, I would not mess with changing the pressure for him until he gets the logistics of the mask and CPAP therapy figured out. This therapy does not fix the problems immediately but takes a great deal of patience and persistance on the part of the patient and the family.

You sound so very supportive of him and what he is trying to get to work. I wish you both success and there are many people here that will help you along the way.
Take care.
Karen

[bbeck4x4]

Help him to adjust as best as possible it will help him to get his life back, and the energy that he had 20 years ago, I myself fought with cpap for at least 3 months of night time he**, but during that time i had one or two nights that were perfect, then I knew what I had been missing, that is what has made it all worthwhile three years later. I have more energy, more memory, and yes I monitor my own (and my wifes now) settings, and we adjust our own pressures, based on the numbers, we can see what is working and what is not.

I am not the norm, my wife took only three weeks to adjust, so it is different for all of us. Hang in there it will be worth the trip.

Brian

[kteague]

Hello and welcome to the forum. Sounds like your husband (with your support) has been diligent to try everything possible to optimize this therapy. I was wondering about one part of your post.

Are you saying they know a pressure of 10 does not sufficiently treat his obstructive events, but are willing to accept that rather than cause central events? Is there a plan in place to determine if and when he does indeed become desensitized and no longer have pressure induced centrals so can tolerate a higher and effective pressure? Or are they just going to fly blind or keep repeating sleep studies? There are machines out there that can with a degree of accuracy recognize and report central events, and some will even treat them. Just getting a bilevel may still be just a partial resolution.

Sometimes medical personnel can be the "worst" at finding a balance between advocating for and interfering with a family member's treatment of any kind. I don't doubt that some doctors dread the input since it would take time to evaluate each instance for the value of that family member's expertise. But I probably would not receive it well if as a career I was responsible for the lives of doctors' patients, then suddenly was "dismissed" as incompetent to understand the issues because I was off the clock. You must be a patient woman!

About the dry mouth, does your hubby have any nasal or sinus issues that make him unable to consistently get air thru his nose? Some people on here report that too warm of air makes their sinuses swell, while others report the opposite. He might want to experiment with his humidity levels with different style masks. The humidity that's most comfortable for nasal breathing and mouth breathing may not be the same.

Hope things get straightened out for him soon. Do keep us posted as time permits.

Kathy

[ozij]

Can too much pressure be causing or increasing this dryness? Although with his high AHI , I got the feeling he would need to go higher than 10 even.. During the titration anything over 10 caused central apneas, and the doc wanted to desensitize him...

Hi Brenda, and welcome.
An AHI of 53 (that's 53 breathing interruptions per hour puts you husband firmly in the severe group.
And AHI of 24 achieved in titration keeps him in the "moderate" group - and is unacceptable in the long run

Desensitization does make sense - but there should be a definite time limit to it - and if the made you buy a fixed pressure machine just for the desensitization (paid for by the insurance?) I would be very wary of that doctor / DME setup.
And I would run away from anyone whose position was: :'they wont go for that as they "dont want families interfering with settings,and trying to read them" ' Would you trust anyone who had that attitude about data for diabetes?

There is a condition called "complex sleep apnea" in which central apneas appear once the right pressure to resolve obstructive apneas is achieved: http://www.sleepreviewmag.com/issues/ar ... -06_03.asp . It sounds as though your husbands titration was stopped when the central apneas appeared. Yes, some people think it's an adaptation issue - but others have found the right machine does wonders - and it's not only adaptation.

Complex sleep apnea is treated with special machines - and you have to be properly titrated on those. I would not fight for a simple bi-pap at this point -- I would start looking around for another doctor, and ask about complex sleep apnea and an SV titration.

Dryness:
F&P make the best stand alone humidifier in the industry: the F&P HC 150 https://www.cpap.com/productpage/fisher ... ifier.html. You can buy it online, you don't need an Rx for it. It supplies more humidity than integrated humidifiers.

When the room temperature is low, humidity can cause condensation and what we call "rainout". The solution to that is wrapping all hoses and tubes in covers, and a heated hose - http://www.sleepzone.com.au - it is worth every penny.

Good luck - the beginning is difficult, by you'll make it.
O.

[Marietjie]

humidity on 4.0,

........Humidifier set on 4 ? ? ?

That's very warm - what do you other members say about this.
In summer I've got mine on 0 - (warmish enough) and wintertime I set it between 0 and 1.

I think you must look into this. Regards-Marietjie

[ozij]

With the same humidifier at a pressure of 7.2 (average) I need the humidifier on 2, all year around.

It depends on personal preference, on where you live, on your pressure, and the type of breathing. Moutbreathing through a full face mask usually means you may need more humidity.

Having said that, I want to add that Marietjie's comment does remind me of the fact that for some people, too much humidity causes nasal congestion.

O.

[brucelegs]

*****
and as a sidebar.. only the spouses /bedpartners can understand the sadness we have to deal with when our bed has become a medical suite, and how it feels to reach over in our sleep to cuddle our partners faces and necks to be met by a huge plastic mask and rubber hose....those are gone now.
******

you need to get into a different frame of mind about the machine, mask and hose. This equipment is adding to the time you will have together. Cover that rubber hose with a fun hose cover, dress up the area where the equipment is kept. I went out and bought a new nightstand, lamp and rearranged the bedroom. Put a positive spin on it and your attitude might change

[momadams]

Re Brucelegs' reply:
Two years ago when I started all this "nonsense" and it felt like too much to deal with, my husband looked over at my gear and said "Hey, cool. It's Seven-of-Nine in the Regeneration Chamber".

[DoriC]

I'm the spouse too, and I know exactly what you're going through. We're 7 months in now and I'm just starting to get my own life back, thought I was doomed forever, not so, but you just have to put the time in. I'm really not qualified to make any suggestions about your situation but please let the experts here help you. Give them as much info as you can and ask daily questions if necessary and if it gets too confusing you can PM one of them and get some individual advice. These are very special people! My husband is an older senior and somewhat disabled and I've been in charge of most of his therapy but he's now washing his mask,adjusting his straps, filling the humidifier,nightly hygiene, no reminders, and reading the reports I print out each morning and understanding them. The gift to me is the vast improvement in our daily lives, energy, companionship and the utmost respect for my sweetie for staying the course. Dori