Any others with Sleep Apnea?

[nerdgineer]

Icebreak, sorry for the delay replying to your question - busy holidays and all...

After reading Lightchucker's comments above about not finding any reasonable CPAP machines on ebay, I took a look and - son of a gun - he's right, there aren't any on ebay. I don't know why. All I know is that when I looked about last May I think, ebay was lousy with them (mostly Environics Remstar Plus'), maybe 6 or 7 available at any time over the month or so I was looking, selling from low $100's for a somewhat used machine (few hundred hours) through maybe $400 for a new in the wrapper machine. Don't know why they've dried up - maybe it's seasonal - but hopefully they'll show up again. Lots of accessories for cheap as well, back then.

The CPAP has definitely helped me. I don't sleep as well as when I was younger (and skinnier) but much better than I do without it. Most everyone seems to find their own way to tweak the machine for their own preferences.

For me (YMMV), I decided that the residual air in the mask itself needs to be flushed out better than was done by the exhaust port of the mask, so I drilled a few small holes (thick pencil lead sized) at the edge of the face mask pillow to vent the air in the mask itself. That helped. If you want to maintain the back pressure to the machine, you can cover up an area of the factory exhaust port in the mask with tape equivalent to the area of the holes you drilled (very little - maybe 1/8" x 1/8" total equivalent area).

I notice that later model masks include holes in the face mask itself to perform this same function.

For me, another adaptation is to use the humidifying tank (the little water tank) and fill it with MORE water than indicated by by the fill line (almost up to the curvature at the top of the tank). This makes the air moister which I find better.

I put a hook on the headboard so the hose from the machine goes up for a while before it comes down. This makes it easier to move around and makes sure any water which does get into the hose (because I filled it so full) drains back into the machine instead of pooling in the hose.

Those are my adaptations, I'm sure you'll find your own. The best adaptation - as several CPF'ers have stated - is to lose about 30 or 40 lbs and get one's inner throat to shrink in response to the weight loss; but we're all trying to do that, right? /ubbthreads/images/graemlins/smile.gif

Hope this helps you. It's not perfect, but it's better than not having it...

 

[MaxaBaker]

My Doc thinks I do; but I'm asleep and its not bad enough for me to wake up or anything. I dunno.

 

[Icebreak]

Chris -

Thanks for your post. I'm a little confused. Did the sleep doctor recommend CPAP? They are sometimes referred to as XPAPs because there are CPAPs, Bi-PAPs (two pressures) and APAPs (autoPAPS). They should have tried one either in the first study or in a second study. It does sound like your PCP and your sleep doctor know what they are talking about; hence, my wondering if XPAP was recommended.

I don't use a humidifier but I'm in the minority. In your environment, I would think an onboard humidifier and more specifically a heated humidifier would be the way to go. You can tell your Doc you know you'll need that.

I'm glad to hear you are going to try again. Good luck.

nerdengineer -

Maybe a DME group was going out of business and chose Ebay over a typical auction house. Interesting. I'll keep an eye on it.

Funny when you do a modification then find it as a design element in another product model. I like the hook idea. I've been meaning to do just that, if only to keep the hose away from me. Good info on good tweaks. Thanks!

BakerOnFire90 -

Most people are shocked when they are told they are waking up hundreds of times a night. If your PCP thinks you have it then I would say he is above average in knowing about OSD and diagnosing it as a possibility. Please consider a sleep study.

Chuck -

Haven't seen you in a couple of days. I hope you don't mind me pinch hitting in your thread.

- Jeff

 

[LightChucker]

Chris, that is great news. Please keep us posted on how things work out for you.

Chuck

 

[LightChucker]

[ QUOTE ]
Icebreak said:
Chuck -

Haven't seen you in a couple of days. I hope you don't mind me pinch hitting in your thread.

- Jeff

[/ QUOTE ]

Of course I don't mind. I just started the thread - that doesn't make me an expert. I have already learned things from you and others who have posted.

CPAP is one of those blessings that must be adjusted to each person. What works for one may/may not work for another. It makes me happy to think that this little thread may save someone's life, or at least maybe improve their life.

Chuck

 

[Icebreak]

/ubbthreads/images/graemlins/wink2.gif Chuck.
[ QUOTE ]
LightChucker said:
It makes me happy to think that this little thread may save someone's life, or at least maybe improve their life.


[/ QUOTE ] /ubbthreads/images/graemlins/thumbsup.gif

 

[LightChucker]

nerdgineer,

I think eBay has decided to not allow selling of CPAP machines. I have been watching and bidding on some as they come up, but every time, eBay has cancelled the auction.

I suspect that the manufacturers are behind this. They don't want people buying second-hand machines instead of their expensive new ones. /ubbthreads/images/graemlins/mad.gif

Chuck

 

[Icebreak]

I was looking on Ebay for some software and card reader so I could get timely information on my compliance. The seller had a note to Ebay staff stating that this hardware/software did not require a prescription. I suspect that must be the issue with selling the machines.

I opened a thread on TalkAboutSleep regarding VPAP vs Bi-PAP. It relates heavily to the sophisticated algorithms within the software. Software and readers for VPAPs can be had. They allow users to do their own mini-sleep studies at home. Some members feel that this capability is of great importance. This notion would seem to be easily accepted by a gadget minded person's way of thinking. They've given me most excellent advice.

Here is the thread on VPAP VS Bi-PAP questions

 

[LightChucker]

Icebreak,

Thanks for the link to that thread about VPAP. Very interesting.

Chuck

 

[83Venture]

I was talking to someone at work on Apnea. He said that if you indicate that you are sleepy while driving the Doctor/Study people are required by law to notify the DMV and have your Drivers License restricted. Anyone heard this before?

 

[LightChucker]

[ QUOTE ]
83Venture said:
I was talking to someone at work on Apnea. He said that if you indicate that you are sleepy while driving the Doctor/Study people are required by law to notify the DMV and have your Drivers License restricted. Anyone heard this before?

[/ QUOTE ]

I have never heard that for Missouri or Kansas, but anything is possible. /ubbthreads/images/graemlins/confused.gif

What state do you live in?

How is the restriction worded?

Chuck

 

[83Venture]

I live in Maryland, simular political climate as CA and MA. The three major metro counties control the state and the other 20+ are pretty much powerless unless one of the big 3 splits off.

Person I talked to did not say how it was worded, just that someone he knew had it happen to him. He is one of the retired FBI agents here and usually dependable.

 

[WillnTex]

In Texas even the police can have your license revoked for apnea. If you made the statement that you fell asleep due to sleep apnea and had an accident the officer could submit a form to the state and they will review your license and can have it pulled. It happens most often with seizure patients since apnea is not that well understood by most people so it is not reported as often.

 

[Icebreak]

83Venture -

I'm glad you brought this up. It was only recently that I heard about this so I know little but I am learning more.

This is what I suspect but not know. It seems to have to do with liability and the perception of liability.

Each state's laws should consider federal law on this issue. In some states if a medical professional knows a patient may experience "loss of consciousness or voluntary control" for whatever condition, the doctor may feel compelled to document it or report it. I have read that, in fact, in some states a driver's license can be revoked for a period of time due a doctor having to report a patient's untreated, treated or non-compliantly treated sleep apnea. In other states a doctor may just document it.

Then there is Hippa. How that plays into the mix of law and liability may be a variable dependent on location, malady and judgement.

Social responsibility is an obvious consideration. Happily for me, I don't fall asleep while working or driving. I would no more jump in a vehicle and drive knowing that I might become sleepy than I would drink and drive.

New Jersey's Maggie's Law addresses this.

Here is a link to a short and informative discussion about this specific topic: TAS discussion "I'm so mad."

TTS –

Thanks for chiming in with your facts, which I consider to be expert in this case.

In general –

I think we see here that being informed about the law as it applies to sleep apnea patients is important. So, I'll be on the lookout for information. I would suggest that allowing the issue of law to become much of an obstacle in one's quest for treatment would be wrong. Still, it's got to be a concern. I simply can't operate without my wheels. As in most matters, I believe careful and possibly guarded dialog is a key to realizing the solution.

 

[MikeF]

I have been trying to get used to a cpap machine for a couple of months now. When I am just about asleep with the mask on, I have what I call a "stutter" breath that abruptly wakes me up, and then I have to remove the mask. This happens after I have had it on for 15-30 minutes. How long has it taken you to get used to the equipment and be able to sleep all night?

 

[MikeF]

/ubbthreads/images/graemlins/bumpit.gif

 

[LightChucker]

[ QUOTE ]
MikeF said:
...I have what I call a "stutter" breath that abruptly wakes me up, and then I have to remove the mask.

[/ QUOTE ]

Hmmm, I have never heard that description before. I wonder if it could be caused by the start of a mouth leak. Most of us have had to deal with leaking through the mouth. It could be that at some point in your sleep you are starting to leak, but then you try to stop the leak, and it sort of bounces back-and-forth for a while.

I have been using mine since about 2001, and I have had to work through many different problems. Some people get along very well from the beginning, but others (like me) have to keep making adjustments from time-to-time.

Do you have leaks?

If so, what kind are they, and what have you done to fix them?

My best solution for leaks where the air comes out of my mouth has been to sew a couple of forehead sweat bands together. I stretch the bands over my head and under my chin. Then I stuff some tissues between the band and my cheeks. That puts just a little pressure on my cheeks and against my back teeth, which stops the leak.

Chuck

 

[Icebreak]

I'll take a couple of stabs at it.

At first I thought maybe you were reacting to ramp up. That's were the machine is set at a lower pressure when you turn it on, then slowly increases pressure usually over a period of 15 to 30 minutes. I thought maybe when your machine reached optimum pressure it was too much. A natural reaction to this would be to rip the mask off.

After reading Chuck's post, I think his deduction is probably closer to the mark. Do you know if you are naturally a mouth breather? If you are having mouth leaks, sometimes a chinstrap (available from your DME company) might do the trick. I've heard of folks making their own strap from a stretchy cotton knee brace and like those better.

It almost sounds like you are having a mouth leak then, as you relax into sleep, you have an apnea. You then gasp for air; the machine's positive pressure seeks a nasal path and startles you awake. I've had this happen before and it caused me to rip the mask off wanting nothing to do with it.

Another solution to mouth leaks is a full-face mask. If your regular mask isn't working for you I would ask the DME for another. If you need to try a full face (FF) ask the DME for one and make sure your insurance will pay for it. Knowing what your insurance will pay for is important. I was shocked to find out that I can have a new mask shipped to my office every 3 months by an approved, fully covered schedule.

Finally, I want to encourage you to post your question on TalkAboutSleep. It is a newbie heavy forum but the forum is friendly and very supportive. One reason it is newbie heavy is that folks become exasperated trying to get the treatment to work for them. They know it's important so they begin researching on line. They find TAS and post their question. I would like to know what the experienced hands there have to say. You don't have to register but I did.

 

[MikeF]

I have a ResMed Mirage Full Face Mask Series II mask because I found the nasal only mask bothered me a lot more at the sleep study. I also have a beard and mustache, and the FF mask seems to be more comfortable. I found TAS as a result of this thread a while back, and I spent a couple of hours there today. Thanks

 

[Icebreak]

Chuck -

A fellow told me about a mod the other day. I tried it and it worked. He was having a problem with his hose binding because he tussles in his sleep. He went to his DME and told the R therapist. The therapist gave him a short humidifier hose and a spare rotating connector. He used these pieces on his main hose at the mask end and it didn't bind as much. He got a couple more rotating connectors and short hoses and modded the main hose. He now has six rotating connctors and no binding.

I had thought a ball and joint connector would be a great idea. Two weeks ago I saw a mask with a ball and joint connector. Dang. I coulda been a millionaire. I coulda been a contender. Anyway. Sweet trick with the rotating connectors. I thought you might find it to be interesting.