Looking for advice

Guest · Post by **Guest** » Wed Mar 30, 2005 2:59 pm

Hi all.

I need some advice on how to proceed.

Without making it a book, here's a little background. 38 years old, smoker, medium height & wieght, could use to lose 10 lbs or so, but not overweight. Diagnosed w/OSA about a year ago, no idea what my "score" was, never saw the sleep lab report, but I was told that I woke up on average of 9 times per hour. Is that moderate, bad or severe, I have no idea. However, although they put me on CPAP, I was told at the time that I was a prime surgical candidate and that they didn't think CPAP would be enough for me.

Was prescribed the infernal machine, picked it up last May, the one and only time I have ever seen a RT. I have a RemStar Pro C-Flex w/ heated humidifier, set at "10" , and the mask that came with it, ComfortGel, medium.

From day one of using the mask, I hated it. Extremely uncomfortable, after 2-3 nights left a huge blister on the bridge of my nose, and started to get blisters on cheeks, etc. When I called my DME to try and figure out what to do, after a week of leaving messages, I got a voice mail back that told me to wear a bandaid on my nose. So much for getting any help from them.

So I put the thing aside and said screw it. I knew I was going in for surgury, figured I'd just wait for that. Well, got the surgury in November, the "roto-rooter", tubinates, septum, uvula, tonsils, the whole works. And it didn't help me one bit. I feel no different today than I did a year ago.

In a follow up appointment with the doctor, after telling him my expirience with CPAP, he refered me to this forum. We discussed then the use of some dental devices, something to hold my tongue up and out of my throat, and he was going to research it some and give me some options at my next appointment. Unfortunetly, he died unexpectedly a few days later. Damn rude of him, wasn't it?

And now on top of it all, I've been diagnosed as clinically depressed. My new doctor, the shrink, thinks that it is caused by my continued chronic sleep depravation, and I'm inclined to agree with him. So now I'm going back to the infernal machine.

Since my surgury, I've tried the CPAP a few times with the same mask, same results, pain & discomfort, big red marks on my face. Since my DME is obviously not going to be a help, and the medical doctor I really liked is now dead, I'm turning to you guys for advice.

I sleep on my side, usually breath through my mouth, and I have a beard. I've looked at both the Resmed ultra mirage FF mask and the Aura nasal interface on CPAP.com, trying to decide which one is the best to go with. Or is there another option I should look at? I can't afford to buy 3-4 masks and try them all, I need to take a chance and get 1, but which one?

Should I try going back to the sleep lab and getting another sleep study since I've had the surgury? Will that change anything? Anybody got any expirience with the dental devices my doctor was talking about?

Any other idea's?

hockeydad · Post by **hockeydad** » Wed Mar 30, 2005 3:00 pm

sorry, guess it took me so long to write that that I got logged off. That message was from me, hockeydad.

limpy · Post by **limpy** » Wed Mar 30, 2005 3:18 pm

Looking for a mask that works for you is the right way to go. As a rule, Resmed and AEIOmed make the best masks - so you're looking in the right direction there as well.

However, you say you get one shot at this. I'd say - JUST OPINION (not a doctor, or even that intelligent) - that the Resmed Activa is your best shot. Why? Nasal masks are the oldest, tried and true type of mask. Resmeds aim with the Activa seems to have been comfort and fit at the expense of size and weight. The net result is that the thing will most likely fit you and not give you blisters, but it's as sleek as other masks, nor is it nasal pillow based.

The Aura is a hit or miss - it seems to hit more than miss but if you taking your one shot - then do not go with this one. If you are taking two, get this mask next.

The Ultra Mirage Full Face. This could also be your best shot - it depends on why you hated your previous mask. Was it sealing well? If its a leak you want to stop, the full face represents a different way to seal and is as good a call as the activa. If it's red marks, the activa seems like a better choice.

Board vets, please come behind me and critique this. I am by no means the authority!

hockeydad - hang in there and best of luck. This stuff will work for you if you get the right combo of things and your machine is pretty good already, so you are close!

Grant I · Post by **Grant I** » Wed Mar 30, 2005 3:51 pm

Hockeydad,
Sorry to hear of your ongoing difficulties. You're in the right place to get help and ideas. Here's what I have to offer:

1. If you are a mouth breather (as am I) don't try to change that NOW--get a full face mask. My mask recommendation is the ResMed UltraMirage Full Face (The ResMed Mirage Series II full face is an older model, still available, that many report doesn't seal as well as the Ultra). Once you have treatment underway with a full face, consider retraining yourself to not mouth-breathe. It is more important to get treatment successfully initiated!!

2. Although I am not a fan of follow-up sleep studies, in your case, I think another study is necessary. Who knows what the surgeries did to your airway and pressure requirements. If the insurance will pay for it--get it. Make sure the sleep tech gives you a full face mask to use during the study (they should have several to try).

3. If possible, trade in your machine for the RemStar AUTO with CFLEX--this is the Cadillac of xPAP machines, and will make your therapy easier.

(These are my NON-PROFESSIONAL OPINIONS)

Good luck and keep us posted!
Grant

chrisp · Post by **chrisp** » Wed Mar 30, 2005 4:05 pm

Hi Hockeydad,
I agree, Get the Remstar auto c-flex. Also get a resmed mask. Try to learn to breathe through your nose. Use a heated humidifier and heated hose. Most of all keep at it. Never give up. Read about good sleep hygine and follow thru. If you can't breathe thru your nose find out why. Is it alergies to the environment ? Food? Laundry soap? After shave or perfumes? You would be surprised what causes problems. Cafeine is a big one on the list.

Quit Smoking !

Never give up !

Cheers,

Chris

hockeydad · Post by **hockeydad** » Wed Mar 30, 2005 4:18 pm

Thanks Chrisp.

I've been working on the sleep hygeine thing, don't think there is anything that is making the situation worse. I don't drink much caffeine, 1-2 cup in the morning, never any after noon, very rarely drink caffeinated soda/drinks, more of a water drinker.

I think the mask just doesn't fit my face right, and no matter how many times I've tried to adjust it, still just hurts to wear it. Leaks have been an annoyance, but not a big problem, pretty much adjusted them away. I do have a big nose, just think this mask doesn't fit me well, and that's the source of the pain.

noahmckinnon · Post by **noahmckinnon** » Wed Mar 30, 2005 4:20 pm

I agree with trading in the Pro for an auto. Might as well give yourself the best shot possible. And though you've probably heard it a thousand times, give up the cigs. Exercising will help too.

But enough of the unsolicited advice

As to the mask, my inexperienced opinion would be to try a nasal pillow device first. Depending on the breadth of your beard, it may interfere with the ff mask seal. It seems also that nasal pillows masks like the Aura or Breeze would also be a better choice for side sleepers. Also: Aura $109, Ultra Mirage FF $139

good luck, sir. May the Force Be With You (at whatever pressure works best)

chrisp · Post by **chrisp** » Wed Mar 30, 2005 4:50 pm

Hockeydad, One thing to remember about a FF mask. The larger the Mask, the larger the seal area, The more chances it has to leak. A nasal or pillow device is your best bet IMHO. Also an auto may give you a lower average pressure. Less leaks , more comfort. Stick with it.

Cheers,

Chris

noahmckinnon · Post by **noahmckinnon** » Wed Mar 30, 2005 5:09 pm

apparently the aura is guaranteed:

http://cpaptalk.com/viewtopic.php?t=2120

if it doesn't work for you, you can return it for a full refund minus shipping, according to th. see link.

rock and roll · Post by **rock and roll** » Wed Mar 30, 2005 5:43 pm

I go with Limpy. if we have one shot, the odds are the Activa would be your best shot. While it would be nice to go to anj auto, you Activa.

hockeydad · Post by **hockeydad** » Thu Mar 31, 2005 1:56 pm

Thanks all for your feedback, think I'm headed in the right direction.

I appreciate the thoughts on upgrading to the Auto Cflex, but at this point, the machine isn't the problem, the mask is. Let me get that one taken care of first, one thing at a time. Maybe once I start getting some sleep, real sleep for a change, then I can worry about the machine or other things in my life.

You guys are all great, can't imagine what I'd do without this forum.

littlebaddow · Post by **littlebaddow** » Thu Mar 31, 2005 2:38 pm

hockeydad wrote:Thanks all for your feedback, think I'm headed in the right direction.

I appreciate the thoughts on upgrading to the Auto Cflex, but at this point, the machine isn't the problem, the mask is. Let me get that one taken care of first, one thing at a time. Maybe once I start getting some sleep, real sleep for a change, then I can worry about the machine or other things in my life.

You guys are all great, can't imagine what I'd do without this forum.

I would say it's about finding the combination that works best together, hockeydad, so don't discount the effect of the machine.
As other posters have said, an auto will typically run at lower pressure for much of the night, so reducing the liklihood of leakage.
Most important point though is to persevere and be heartened by your willingness to take control of your treatment.

nodding off · Post by **nodding off** » Thu Mar 31, 2005 9:07 pm

Hi Hockeydad,
I'm sorry your surgery didn't work out for you. Mine didn't either. I agree with Limpy. If I could only buy 1 mask it would definately be the ResMed Activa. In my 9 years on the hose I have never encountered a more comfortable and leak resisting mask. I'm a restless side sleeper. The one good thing the surgery did for me is open my nose up so I could better tolerate CPAP, otherwise I'sd need a ffm all year round. If you can, stick to a nasal mask, as it is more comfortable. I've read good reviews of the Breeze, but haven't tried one yet. That is most likely my next mask. Rested Gal likes hers, and from her posts I've read, her opinion is to be respected. Remember though, that everyone's face is different and what works well for me may not be comfortable at all for you. The only mask I would definately NOT recommend based on my experience with it is the F&P ffm.
Good Luck!!

BigHeart · Post by **BigHeart** » Thu Mar 31, 2005 10:33 pm

Good luck Hockeydad. I've tried a number of masks and nasal pillow interfaces, and the only one that has really worked well for me is the Breeze with nasal pillows. For me, ALL masks caused blisters, annoying leaks, and an itchy nose, even the Activa. So I've finally given up completely on masks, and only use nasal inserts or "pillows". But you say you're a mouth-breather, so unless you can fix that with a chinstrap, tape, or training, you may indeed need a full face mask. Unfortunately, there are many factors affecting what interface will work best for a particular individual: mouth-breathing, shape of face, shape of nose, restlessness, side or back sleeper, clausterphobia, etc. Let us know what you choose and how it works for you. We're all in this together, learning from each other.

rested gal · Post by **rested gal** » Thu Mar 31, 2005 11:45 pm

If I had to have a full face mask because of mouth breathing, it would be the ResMed Ultra Mirage FF.

If I wanted a nasal mask (covers just the nose) it would be ResMed's Activa.

I have both of those and like them. But what I use almost all the time are nasal pillows interfaces, because they are generally more comfortable than other types of masks. I do have to tape my lips shut with adhesive tape to be able to prevent the nighttime mouth breathing habit that years of untreated OSA brought me to. If I didn't tape my mouth, I'd have to use a full face mask all the time.

My favorites in the nasal pillows line, in this order are:

Aeiomed's Aura - but if I were a guy, I'd wait until they come out with Extra Large pillows for this one.

Puritan Bennett's Breeze - using the side straps down very low to keep it steady and using nasal pillows that most people fitting you would say are "oh, those would be too big for you." In nasal pillows, bigger is better, imho.

ResMed's Swift - too noisy for me, but a very good interface. Comes with all three sizes of "pillows", which was a smart move on ResMed's part.

Looking for advice

Looking for advice

Additional thoughts

Aura guarantee

mask comfort

Machine	Mask