can't find CPAP troubleshoot expert

[daisyb]

I am trying to find a CPAP equipment expert to troubleshoot sinusitus problems my husband has which we we believe are related to his CPAP.

He has been using CPAP for 7 years, started on Respironics REMstar M Series, supplied by DME. Upgraded to ResMed S-9 Autoset about two years ago under our own steam (DME only wanted to provide certain units). Improvement of treatment was remarkable with upgrade to ResMed. My husband loves the ResMed S-9 Autoset! Sinusitus commenced about 1 year ago. Clogged nasal passages sometimes commences at night; upon AM waking, debilitating nasal congestion and sneezing. Nasal problems somewhat intermittent but more frequent lately.

The sleep center diagnosing medical practice has not been helpful, nor has an ENT practice we consulted. Both of them send us to see the other one.

We think, through tons of deductive reasoning & research on the sinus problems my husband is having, that there may be issues with the humidity of his CPAP machine (currently on Autoset) or the fit of the face mask. But we are not experts.

We think this is not a distinct "sleep medicine" problem, nor a distinct allergy (ENT) problem. Does anyone have a suggestion for finding a troubleshooter for CPAP problems that may require "cross-discipline" thinking? Doesn't have to be an MD -just someone who understands and knows CPAP technology well. Indeed, both the sleep med and ENT MDs, reputed to be some of best in our area, have not been much help. Have done tons of research to find an expert to help sort this out but haven't found anyone yet.

We are in Fairfax County, Northern VA.

CPAP is ResMed S-9 auto set used with Climate Line heated hose. Mask is Respironics ComfortGel Blue nasal. Uses SoClean 2 several times a week; symptoms do not appear to link to use of So Clean2.

Thanks to any/all who respond.

[Pugsy]

The S9 when using the ClimateLine on Automatic will try to deliver 80% humidity at your desired hose air temp.
Have you tried less humidity? You would need to switch from Auto humidity to manual humidity (setting is in the clinical menu setup area).
The manual here explains how to do that and the humidity options.
http://www.apneuvereniging.nl/forum/pdf ... manual.pdf

I don't know of any sort of specialist for this type of issue. Most docs do well to understand that the machine puts out humidity much less how to fine tune it.

Humidity needs vary widely and some people need more humidity and some people need less.
Since he is already using a fairly high humidity perhaps he is one of those people who needs less.
If you have already tried less or even off...I don't know what to offer.
It's possible the symptoms aren't related to cpap use at all but what you are describing is fairly common with cpap use and the humidity selection.
I get the same symptoms if I don't have enough humidity but others get the same symptoms with too much humidity. It's just the way the nasal mucosa do when they get unhappy with the humidity either way it's the same symptoms.

There is a way to get probably more than 80% humidity (manual mode set to highest humidity level) but I think if it were me I would probably try lower setting (manual mode) if I hadn't already tried it.

[fj62]

Are you using allergy filters with your machine? Are you regularly changing these filters. It could be allergy problems.

[daisyb]

Thanks so much for the speedy reply! We kept thinking that an "Autoset" machine knows what it is doing . . . dumb, eh? Will try your suggestion set to manual and reduce humidity. Any ideas for ramping degrees to drop the humidity back? Like since the default on auto is 80%, try 1st redux to 70%?

Forgot to mention that using information on this board, emailed AWAKE contacts in my state (but not close to us) with query similar to my OP.

I will report back with updates. Thanks again for your generosity to me, and to so many others in the history of these CPAP talk forums! I hope in the future, we can pay it forward.

[WindCpap]

The first line of defense for sinusitis is a sinus rinse. It should be done in the morning so that the sinuses are fully drained before using CPAP. It is extremely important to follow the instructions on water sterilization, but it is very safe and effective. I know a few people who gotten 100% relief this way.

[Pugsy]

The settings in manual mode are numerical 1 through 6 and not in % of humidity so it's kinda hit or miss with the choosing to reduce. They never tell us what % those numbers are...the only tell us that "auto" is for 80% Part of it will depend on your own ambient humidity.
I don't know what number equals 80% but I am assuming somewhere around 4 to 5...so if it were me I would probably try humidity setting of 3 at the temperature of my choice and go from there if I wanted to reduce the humidity
Or I suppose you could try a setting of 1 and work up...it's a crap shoot.
1 is the lowest humidity..6 is the highest.

If the symptoms are related to humidity...one night may not work an immediate miracle but hopefully will give you an idea of which way to go. The one time I tried lower it took me 3 days for the nasal symptoms to go away and it was a miserable 3 days.

As always...make sure the filter is clean, etc.

Again...I don't know that his issues are for sure related to humidity setting but it wouldn't be impossible and that's why I recommend at least trying changing the humidity setting. It's something to try that might work and it's free.

[daisyb]

The ResMed S-9 Autoset has an air filter which we are careful to regularly replace. Are there other filters (add-ones) that would help?

[daisyb]

Husband has done some sustained sinus rinsing, but who knows when it appears to not be helping, that it is okay to stop trying? The sinus problems always come back.

[daisyb]

We know that the supposition that the humidity level is the problem may not be a fix, but we feel like we need to keep trying something to figure it out, clean filters, sinus rinsing, humidity adjust, bring it on. At times, it feels like shooting fish in a barrel, but at least we are trying something.

The CPAP is a life-saver for him, so we feel like we can't give up. But the chronic sinus stuff is wearing him out.

[Pugsy]

Experimenting with the humidity setting is worth trying.
I do understand how frustrating the sinus/nasal issues are.
The nasal mucosa are funny little dudes...if they get unhappy for any reason be it allergens in the air, viruses in the nose, too much or too little humidity...they respond in the same manner with the histamine release that causes all those ugly symptoms from typical allergy like responses (itchiness, congestion, drainage, sneezing, sinus pressure) no matter what the original cause was.
When I had my issues with not enough humidity I found the pressure in the maxillary sinus area was so bad my teeth hurt. Felt just like it hurts with a real sinus infection but it wasn't an infection (which usually has colored drainage as opposed to clear and doesn't usually clear up in 3 days with nothing but Simply Saline) and I have had those same symptoms return when I forgot to fill the water chamber and it went dry during the night...so I know it's humidity related. For me my nasal mucosa want lots of moisture but other people get the same symptoms from too much moisture.
There is no right or wrong to humidity needs...there's just what works for each person as an individual.
So if one way isn't working so great..try the other way and maybe get lucky.

[daisyb]

Yeah, had read your post re humidity issues on the Pugsy's pointers sticky. Was a helpful affirmation that humidity level is an adjustment worth looking at. Every experienced CPAP user here who posts has helped us understand that getting it right is a process, not a moment.

[WindCpap]

The sinus rinsing (much like CPAP) is a treatment, and not a cure. It won't make the chronic sinusitis go away but it will often provide relief.