I GAVE UP

littlebaddow · Post by **littlebaddow** » Sun Jun 05, 2005 11:56 pm

SleepyGuy wrote:Guest,

Solving this could save you money in the long run. It could save you from very costly health problems.

Let's get to the point. Solving this could save your LIFE

Please do not give up. Put up with the minor inconvenience. How much more important to you and your loved ones is being alive

ahujudybear · Post by **ahujudybear** » Mon Jun 06, 2005 2:42 am

Know what?

This failure rate is not any of your faults. I strongly fault the medical system you are using for not following through on your treatment. That is so outrageous that they would just tell you to order something to see if it works.

The Respiratory Therapist here has brought out two different styles of masks and three different BiPAPs for me to try, taking the time to calibrate each one to my rhythms and style of breathing. She has spent well over 8 hours with me so far.

Isn't there some way you folks can go back to your doctors and tell them that what they ordered is not working and ask to "try" some different alternatives? I mean, these things can be sanitized so that more than one person can use them. It's not like they have to be thrown away if they don't work for you.

- JB

Janelle · Post by **Janelle** » Mon Jun 06, 2005 5:04 pm

I agree, folks, take that leaky mask or unsuitable mask back to where you got it and COMPLAIN. These people are supposed to be professionals and experts in their field, not us, so why is it so difficult for them to properly fit and assess what type of mask a person needs for their sleep style, personality and needs? You and your insurance are paying for their expertise and the TIME (yeah, right) they spend with each patient to assure they comply. How can you even start to comply if you are forced to pay for the first mask they throw at you.

If the DME, Dr. or whatever you purchased your mask from cannot or will not come up with an alternative, call their DME headquarters if they are a company, call your insurance, call your Sleep Dr. and complain that you cannot comply because they will not take the time to properly fit you. Drs want to know which DMEs are not working with the patients. Those who don't do not get referrals. Companies who get complaints about their offices or individual RTs, will do something about it (this is the route I had to take on another issue)

We are the patients who require treatment and without this treatment we could die. What could be more simple? Why can't they understand that what they give/sell us is vastly important?

Guest · Post by **Guest** » Mon Jun 06, 2005 10:42 pm

I already have a FF mask. Thats the one that leaks. I ant sleep on my back for more than 2-3 hours at a time. Sometimes not at all. When I go to the side leaks, leaks, I wake up with dry eyes and tear off the mask. Sleeping on my stomach (which I prefer) is out of the question.

Don't the number of incidents decrease when you sleep on your stomach?

Waltmon

IWannaSleep · Post by **IWannaSleep** » Mon Jun 06, 2005 10:58 pm

I don't sleep on my stomach, and can't imagine how anyone could find this comfortable. However I understand that for you and others it's your preferred sleep position.

In your sleep study didn't they give you data that showed your AHI vs sleep position? In the data from my study I have data showing AHI for left side, right side, and back. My AHI on either side was much much lower than when I slept on my back. My problem is I apparently spend most the night on my back. With a slightly disjointed jaw, it probably falls back along with my tongue as I relax and fall asleep causing my AHI to shoot up. Sleeping on ones stomach would alter these mechanisms, but I don't know if there are others that would be more likely in that sleep position.

Sorry, no answers just a lot of rampling... I better try to get some sleep

Ron

Guest · Post by **Guest** » Mon Jun 06, 2005 11:08 pm

My insurance company works with one provider. Dealing with either is almost impossible. At the sleep study and at the doctors office I asked if I could have a ff mask and a nasal mask so I could figure out which worked better.

The doctor said ask the RT but he doubted it. The RT told me the insurance give a new mask every six months. I could get it then.

So I will wait 5 months and try again. You may think its a minor inconveience. When I move in bed the mask leaks. EVERY NIGHT. ITS NOT WORKING

Sorry, I'm very frustrated.

Waltmon

Janelle · Post by **Janelle** » Tue Jun 07, 2005 4:55 am

What brand/model of FF are you using? Between all the folks on this forum, someone has probably used the same one and might have a work around to reduce or fix the leaks. Sometimes people wear the straps too tight when a looser strap might do the trick. Sometimes there are simple things you can add to reduce the leaks.

Oddly enough, I have a higher AHI on my side than my back. Go figure. Mechanically you would think your obstructions would be less sleeping on your stomach, but most of us turn our head to one side which would be the same obstructions as side sleeping. Also the soft palate would still fall down even if you were face down.

ahujudybear · Post by **ahujudybear** » Tue Jun 07, 2005 6:06 am

Sleeping on your stomach??? WOW. with my scoliosis and breathing weaknesses there is no way I could ever do that. Seems like it would take a lot more effort to raise your whole body with each breath than to just raise your ribs & belly? (I get out of breath trying to lie out in the sun! )

But about the leaks, the first place to look is the bathroom sink. I have learned that the parts of the mask that touch your face, and your face, need to be washed each morning and your face each evening just before bedtime with some kind of soap that will remove the oils and leave no residue (plain baby shampoo, Neutragena Facial Wash, etc.) this allows the mask seal to sort of stick to your skin.

And your pillow should be of a type that will support your head and neck AND your mask without dislodging it. (See the thread about pillows)

(just a thought... If you're sleeping on your stomach, your neck is twisted more than the harness designers may have expected. Maybe you need a different style of harness or some modifications to allow for this difference?)

But of course, you have probably tried all of that stuff already.

- JB

Liam1965 · Post by **Liam1965** » Tue Jun 07, 2005 6:15 am

ZombieGirl,

You aren't alone.

Liam, ex-cpaper and generally ex-cpaptalk denizen.

SleepyGuy · Post by **SleepyGuy** » Tue Jun 07, 2005 1:53 pm

Anonymous wrote:I already have a FF mask. Thats the one that leaks. I ant sleep on my back for more than 2-3 hours at a time. Sometimes not at all. When I go to the side leaks, leaks, I wake up with dry eyes and tear off the mask. Sleeping on my stomach (which I prefer) is out of the question.

Don't the number of incidents decrease when you sleep on your stomach?

Waltmon

Incidents do usually decrease on your stomach. On your back, your tongue will have a tendency to fall back into your throat.

Is the mask leaking because it is touching the pillow and the pillow is pushing it off your face? I use a firm foam rubber pillow that has very little "fluffiness" left in it anymore. If fold it in half to make it thicker and then I sleep with my head at the edge so the mask is off the edge of the pillow and the pillow doesn't push on it.

My mask sometimes leaks around my nose. When it does I push it up or down so it is over a place on my nose that is the right thickness and doesn't leak.

I hope this is helpful.

SleepyGuy · Post by **SleepyGuy** » Tue Jun 07, 2005 1:55 pm

Liam1965 wrote:ZombieGirl,

You aren't alone.

Liam, ex-cpaper and generally ex-cpaptalk denizen.

Sorry to hear you have given up Liam. Did you try a full face mask? Did it help at all?

Liam1965 · Post by **Liam1965** » Tue Jun 07, 2005 2:21 pm

SleepyGuy wrote:Sorry to hear you have given up Liam. Did you try a full face mask? Did it help at all?

I tried the Ultra Mirage full face, I tried the Activa, I tried the Swift, I tried the Aura, I tried several ones that, in a supreme twist of cosmic irony, had "Comfort" in the name.

I tried both straight CPAP and Auto. I tried CFLEX on (varying levels) and off. Humidification on (varying levels) and off.

Ultimately, my sleep is disturbed far more by the machine that by not having it. I find if I sleep on my couch, it sort of forces me to lie on my side, and I sleep pretty well (except for waking up about once a week with a bad back). If I sleep in bed, I spend most of my time on my back and awake either tired (from repeated apnea arousals) or tired and bruised (from being elbowed by my lovely wife every time I start snoring).

I'm trying to tell myself to wait until my two week vacation and try it then, when there's nothing else in my life to add stress and make sleep worse, and so that's why I haven't sold the whole rig yet, gonna give it that one more college try.

But... the sad fact is that so far, no matter what I try, I can get about 75% of the sleep I need normally, or about 15% of it with the machine on.

I'm starting to think that perhaps CPAP just doesn't work for some people.

Liam, who is also now officially as heavy as he's ever been.

glassgal · Post by **glassgal** » Tue Jun 07, 2005 8:43 pm

Oh Liam,

We miss you! Keep on trying -- it really can make a difference in your life if you can figure out a way to make it work!

I seem to have gained weight on this too -- I thought that it was supposed to go the other direction!

Good luck to you, whatever happens and come visit us sometimes!

rested gal · Post by **rested gal** » Wed Jun 08, 2005 12:12 am

Liam, so sorry to hear that it's still not working for you.

Have you looked into the TAP/Pillar posts thoroughly? That might be what could work for you:

Pillar Procedure and TAP Dental Device: Topics containing PaulY and Sleepy Stoboy's excellent posts about the Pillar Procedure (3 small inserts placed in the soft palate) and the TAP dental device ("Thornton Adjustable Positioner", a removable device worn in mouth while sleeping to hold lower jaw forward and open the airway more.)

Direct link to Dental Sleep Medicine message board on TAS

Direct link to PaulY's PSG studies before and after the Pillar Implants and TAP device (posted on osaforum/com under the nickname pyounan)

Topics about Pillar and/or TAP in the "snoring/apnea" section of TAS:

Jun 03 2005 subject: Pillars - Insurance Denied Claim

Jun 03 2005 subject: just had the pillar

May 30 2005 subject: Somnoplasty vs Pillar vs UUUP?

May 24 2005 subject: pillar procedure scheduled questions

May 23 2005 subject: LAUP vs Pillar?

May 18 2005 subject: similar to "Cost of my Pillar procedure $1500"

May 07 2005 subject: Pillar Success Stories

May 11 2005 subject: Pillar and Tap

May 04 2005 subject: pillar procedure

Sat, Feb 27 2005 subject: Open Letter to Restore Medical

Sat, Feb 26 2005 subject: Drumroll Please - Here is your Pillar Implant Pre and Post S

Feb 22 2005 subject: Pillar surgery

Jan 31 2005 subject: Pillar and GA(tongue advancement)

Nov 29 2004 subject: Snoring Questions

Sleepless on LI · Post by **Sleepless on LI** » Wed Jun 08, 2005 5:17 am

Have you tried the Oracle? Goes in the mouth like a snorkel, is small and you don't even need the one strap for your neck. I just tried it for my first night on CPAP and actually fell asleep with it. Please don't give up if you haven't tried it all yet. I'm sure there are people who love you who want you to stay around. Maybe this could be your answer? It's small and, as a friend of mine who urged me to order it put it, it's the "Cadillac" of masks. Please consider it before throwing in the towel. It could be your answer.

_________________

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