Doc got things wrong! Now have to start again!!!

[simplyme]

Hi I'm brand new to this site, and what you could call returning brand new to CPAP.

About 5 years back I had my first sleep study, got all set up with CPAP... and started off on the joys of getting accustom to my mask. After several masks (all nasal & nasal pillow types) I still could not stand the mask on my face and felt extremely claustrophobic. I would wake up over and over until I just ripped the mask of in the night! I went back to the sleep Dr. to try to figure out what to do, and received the excellent advice to just keep using my CPAP, or lose some weight. - So I tried both. Well not only did I not find improvement from weight loss or 'just sticking it out', but then I gained back more than I lost and still was feeling like I just could not breath let alone get a good night sleep with my mask on! So I got discouraged, particularly after more visits to the sleep Dr. where the best advice they could give as to why I felt like I could not breath in the mask... was that they could not help me if I refused to use the mask all night every night! I wanted to use the mask! I wanted to breath! I just couldn't! So I pretty much gave up. I would use CPAP for a few nights to a couple weeks in a row, I felt worse than without it, so I would stop using it... this pattern continued until late last year when my NEW primary care Dr. ordered a new sleep study at a different sleep center.

Great news! The last place had screwed it all up! During the first office visit to the new sleep center the Dr. said she could not understand why the other place had set me at 7 on my cpap because just looking at the results from that first study she would have had me on a much higher setting. After the new sleep study they told me that even at 20 they could not resolve every apnea, and that the low setting of 7 was actually making things worse because it was not providing enough air to me (hence the claustrophobia, and feeling of a lack of air that I had been complaining of all along)!!!!

So now that I am feeling soooo confident with the medical community... I have decided that I need to edumacate myself.
I am now at a setting of, I think, 13 (OK I gotta work harder at the educating myself thing.) on a VPAP machine, since 20 on my old CPAP just about blew me away. So here we go again, new masks new machine new settings, oh boy so happy!?!?

At least I feel like I can breath with the mask on now, and I like the reduced pressure when I breath out. Still to be determined what the final pressure will be set at. But my poor little nose is so sore from the masks (full face now). I guess I have a high bridge but a small space from chin to top of nose, so I have to use small size masks, but when trying on masks even some of the small ones were up in my eyes and down past my chin. Didn't ever think I had a small face? But always knew my nose stuck out a little!

Well I hope I can get this all figured out, and sleep, and breath, and not have a big red nose.
If anyone out there has any suggestions, advice, condolences .... for a newish CPAP user, I'd appreciate them all.

Oh and does anyone have any info on why some Doctors choose to prescribe a nasal mask and others a full face, does it have to do with pressure? During the sleep study (using a nasal mask) they said I had trained myself to keep my mouth shut well. But when I started the CPAP at 20 I could not breath out, so they had me switch to full face (still couldn't breath out), but now my pressure is lower, so I am wondering if a nasal mask, or the pillows would work again? The full face mask just makes more places for air leaks it seems.

Thanks.

[Boyce]

My condolences for what you experienced with the sleep professionals. It is always better, whatever the health condition, to take full personal responsibility for your treatment and educate yourself to know more than the doctor. (Pardon for the preaching - it's meant for others reading this thread as I am sure you already learned this lesson.)

Oh and does anyone have any info on why some Doctors choose to prescribe a nasal mask and others a full face, does it have to do with pressure? During the sleep study (using a nasal mask) they said I had trained myself to keep my mouth shut well. But when I started the CPAP at 20 I could not breath out, so they had me switch to full face (still couldn't breath out), but now my pressure is lower, so I am wondering if a nasal mask, or the pillows would work again? The full face mask just makes more places for air leaks it seems

A nasal mask or nasal pillows works fine as long as you don't mouthbreathe during the night or leak air out the lips. If you do open the mouth while asleep you need a full face mask to maintain the pressure on the airway.

All the best to you going forward!

[simplyme]

Oh Boy have I ever learned that lesson! Thanks for the input and info, need all the know how I can get, so I can walk into my sleep management with eyes open now, pardon the pun.

[Madalot]

Welcome to the Forum!

I'm sorry for what you went through, but at least you seem to be on the right track now! Stick with the forum and read, read, read -- the more you know, the more you can take control of your therapy and be successful.

Glad you found us!!

[Loreena]

Welcome to the Forum! Glad you're on the right track now. I use a chinstrap and sometimes a cervical foam collar with the chinstrap to keep the mouth closed as I use a nasal pillow mask (Pilairo). I believe some of the best nasal pillow masks are the Swift Fx and the Pilairo. There is also a cloth nasal mask called the Sleepweaver that a lot of people like. I wish you the best on your sleep management!

[Mary Z]

Simplyme, I think we all learned a lesson from your story. It's so easy to blame failure on the cpap user as your old doctor did. If it's just impossible to wear the mask and the feeling of claustrophobia and lack of air continues, it's time for a second opinion and perhaps a new sleep study. Most of us have similar, if not as bad, stories about our doctors and sleep centers.
I'm glad you're back on the wagon and headed for success this time. You also made another good point. Diets don't work. I've heard that if you drink diet soda you will always end up weighing more than you did when you started. I wish you good luck and thank you for posting. Keep us up to date with your progress, please.

[BlackSpinner]

You may want to check out mask liners. also some people use moleskin to protect their nose.

[chunkyfrog]

The adhesive on the moleskin can be pretty sticky; does it stick to mask or nose?
I've used a Band-aid--sticks just enough to hold all night without removing nose hide.

[Madalot]

The adhesive on the moleskin can be pretty sticky; does it stick to mask or nose?
I've used a Band-aid--sticks just enough to hold all night without removing nose hide.

I used bandaid (plastic) on the bridge of my nose for a couple months. My nosebridge has "toughened" up now and I can go without anything and rarely have issues.

[bap40]

Wow! I can't believe how awful things were going for you. I also have to give you a lot of credit for keeping at it as long as you did. Education is the key as you now know. As far as masks go, I have made sure my script says "mask of choice" so it is easier to find what works best for you and your facial structure. Good luck and this time you will succeed!

[purple]

Losing weight would not help me to give up xPAP treatment. Insofar as losing weight though, Stress, like one gets when one does not sleep well, causes one to gain weight/keep weight on. For a lot of folks, it is much easier to lose weight after they get the xPAP working to get some real rest. Trying to lose weight while have Apnea is next to impossible. Have confidence that when you start getting real rest, your body might be more cooperative about losing weight with less diet/exercise effort than you made before.

When I first started treatment, it seemed like I was trying to breathe with a hurricane blowing on my face. After six months, seemed like the machine must be broken because it was barely blowing. Now the only time I feel the blow is when my mask is leaking.

If you think you want to change masks, perhaps just let your sleep doc, or a good mask person at the DME look at your face and make a suggestion. It is astonishing at what their experience allows them to recognize as a happy fit for a particular face.

I use a hose hanger, which I have discovered allows me to have less leaks, and insures I will not drag my machine off into the floor. Even if you do not get hose hanger (I hesitated for a long time because of the $$), you can tie the hose to someplace solid with a bit of string, and thereby not pull the machine off into the floor.

If you live in a really cold area of the country, and you do not have heated hose, then you might want to get a hose cover. One of our board members, Padacheek, AKA Karen, is well respected as an honest business person, and you might be able to get some interesting, helpful things from her. Karen is great to talk to about what might or might not be useful. She have a money back guarantee, and is not going to suggest something just to sell it. (and I am just a satisfied customer)

The numbers you might see on the report from the SD card of your machine are not so accurate if you have leaks. Focus on getting the leaks down at first, do not get discouraged by looking at the numbers and not seeing what might be wrong, except for the leaks. It is not as easy to take care of the leaks as one might think. While it might not seem possible, you can train your body to do, or not do certain things while asleep.

The forum sponser has a website, which does not sell to those who want to use insurance for a payment, cpap.com which still shows an extensive catalog of a lot of the things you might want to try. At least you get to see the pictures of almost every mask being sold in the US.

Some use buckwheat hull pillows, which are helpful in that they retain their shape more than a lot of pillows. I now use a firm foam pillow, even though I have one of the buckwheat hull pillows.

Personally, I went from a Fischer and Paykill Forma mask, which was eating the bridge of my nose, to a Fit Life Total Face Mask. The Fit Life is referred to as the mask of the last resort. I have become a big fan of it, although I wear it with the bottom of the mask below my chin, when it is designed to be just below my mouth.

For me, getting xPAP to working was like coming back to life again. It was worth some aggravation and frustration, because life is wonderful again. I used to wake up saying; "Oh, it can not be time to get up yet." Now I think: "I have so many interesting things I can do today.."

[simplyme]

I have tried bandaids on my nose, but besides causing more leaks, they seem to make my skin sorta damp and it peals (from the dampness not the adhesive) both cloth and plastic type bandaids do the same thing. grrr! it had seemed such a good and easy solution to me too...

I had heard of others using moleskin years back, but remembering how sticky it was and also not being sure if the stick should be on my face or on the mask... was not sure of how well that would work and never tried it. Should have just asked you all that one I guess, sooo, sticky up or down?

This all helped me come up with something that I am hoping will work, if my nose is healed enough tonight. I have these silicone scar strips that have an adhesive quality, but can be washed and reused... I think maybe the added padding of the thin layer of silicone and the fact that it should not leak under it like the bandaids did, could help. I hope? Plus I didn't ever have any damp skin issues with the scar strips when using them for there intended purpose. I am quickly learning that using things NOT as intended sometimes works better, only took me over 30 years to figure that out
If my scar strip idea does not work I will have to continue on the mask search, and look into the pads I have been reading about here.

I'll have to keep you all posted, and thanks for all the input...

[khauser]

The forum sponser has a website, which does not sell to those who want to use insurance for a payment, cpap.com which still shows an extensive catalog of a lot of the things you might want to try. At least you get to see the pictures of almost every mask being sold in the US.

Just a minor correction to that. CPAP.COM does not file with the insurance company, but they do provide the forms you need to be reimbursed. However, for most people they are an Out-Of-Network provider, and thus have a different deductible, co-pay, etc. You need to verify what you'll get.

Nonetheless in today's game of high deductible insurance CPAP.COM's insanely reasonable prices, when compared to most local DMEs, makes them a winner in many cases.

[Janknitz]

Simplyme, you may want to try a different mask. With a foam or gel mask, there's no escaping the pressure on the nose. An air cushion mask like the mirage Quattro on the other hand, can be adjusted so that there is very little pressure on the bridge of your nose (see "Taming the Mirage Quattro" in my signature below).

And nasal pillows should work just fine. There's a meme among DME's that nasal pillows won't work at higher pressures, but they are dead wrong. The increased pressure fully inflates the nasal pillows against the outside rim of your nostrils, holding them in place very well. So if you are good at keeping your mouth sealed so it doesn't fill up with air or open during sleep, you should be just fine with nasal pillows. And you will barely feel the airflow, provided there is adequate humidification.

[bjcyorkiemom]

I understand the sore nose thing, have had two nasal infections in the last two months. The inside of my nose swelled up almost blocking that nasal passage. Thank goodness it was only one side at a time. Anyway, I've been working with xpaps for almost 20 years, and didn't have a good appreciation for how difficult all this mask stuff is as a patient / user. I really lucked out on the first mask I tried. I use a SleepWeaver and love it. Because it is cloth, and the way the headgear is designed there is no pressure on the bridge of the nose at all. Try the SleepWeaver, that would be my recommendation.