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GRAMMACATHY's Photo GRAMMACATHY Posts: 19,217
7/28/13 12:41 P

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We have a great team here. Thanks for the input and for me the Head's Up about the Sleepweaver.

Dan, I lost 50 pounds and was able to lower my pressure from 14 which I considered a wind storm to 10. Much easier to tolerate. I have another 50 pounds to go. I will probably always have the cpap because I also have central apnea. After my first night of good sleep, I realized I did not sleep right even as a 105 pound teen. I love the cpap. You will get there too. Think I will see if I can't find one of our guys around here to give you some male input too. Just keep trying. Ellen is another one who is fighting the good fight for better health.



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METAMORPH2010's Photo METAMORPH2010 Posts: 123
7/18/13 3:45 P

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Dan and Ellen and others,

When I first started with the CPAP, I found that my dislike of it was tremendous motivation to lose weight. Unfortunately for me, the difficulties of losing weight were greater than my hatred of the CPAP. If you can lose the weight, that is ideal, as it will help you in other aspects of your life as well (such as diabetes). However, at best weight loss takes time, and at worst, even if you do succeed, it's possible that the weight loss won't resolve the apnea. In addition, there are studies that suggest that apnea actually causes weight gain, and I don't think anybody would argue that it's much easier to lose weight when you've had some decent sleep.

Dan, I urge you to experiment with other masks and machines; these will make it EASIER to tolerate using the CPAP and greatly increase your likelihood of success. What you're describing is like trying to wear size 6 shoes when you need size 9 and figuring that once you get used to the size 6s, you will invest in the 9s. Doesn't work that way!

There are several minimalist masks out there -- check the cpap.com site for masks that they've categorized as being good for those who are claustrophobic. My Aloha mask is one of them, a very popular mask. As for your machine, the better your machine is (and with an effective A-flex, C-flex, or EPR setting, which relieves the pressure when you breathe out), the easier it is to tolerate. I bought a cheap older machine on Craigslist to leave at an apartment I travel to regularly but gave up on it -- I just couldn't tolerate the noisier, less comfortable machine. I'd rather pack up my regular machine and lug it with me.

Ellen, the data-friendly machines have an SD card in it with the data. Once you've downloaded the program from the internet (or from a disc if you decide to purchase the commercial program) onto your computer, you only need to insert the SD card into your computer. On the Respironics machine (and it's probably the same idea on the ResMeds), the card is in the back of the machine -- you just push on it, and it pops out. This can be inserted directly into newer computers, or you can buy a card reader at your local electronics shop, insert the SD card into the reader, and connect the reader to the computer.

This sounds way more complicated than it really is! It's actually very simple to to use, and it gives you the chance to see how the pressure, apnea events, and leakage all relate. Then, if you get the information that's out there on the internet about changing your settings, you can experiment yourself and find what works best or at least go in to your doc and ask to experiment with higher or lower settings. The doctors and the suppliers simply aren't willing (or perhaps able) to spend the time analyzing the data. With me, once my AHI was under 5, everything was supposedly okay and the supplier figured he had done his job, but I find that it's not a good night's sleep unless my AHI is under 1.5, which I achieve regularly now. I mean, 4.8 was better than the 29 I started from, but it wasn't optimal, and I was able to do better than that once I got a mask I could tolerate and pressure levels that work for me (min 10; max 12).

And somebody on this thread mentioned a max pressure of 25??? That's insane! I don't think my machine even goes that high! It's better to have a lower pressure, keep the mask on your face, and perhaps have a few apnea events over the course of the night. The idea isn't to eliminate each and every apnea event but to reduce them to a tolerable number.

As long as you have apnea, you're not going to have a perfect night's sleep. My issue at this point is that the discomfort of the mask (especially if I've got condensation or major leakage) wakes me and sometimes I can't go back to sleep. (This is less of an issue with my Aloha mask than it was with the other masks I've tried.) But I find that even just 4 hours with the CPAP is better than 9 hours without, and if you can reduce your AHI from something like 30 even just to something around 10 (which is still very high in my books), you'll have better sleep and a better life.

Keep trying. It's worth it.

Here we go again... April 2014. Never give up!

SW: 300 lbs. (BMI 51.6 = "obese")
GW: 173 lbs. (BMI 29.9 = "overweight")
Then reassess: Do I want to be "healthy"?
(144 lbs., BMI 24.9)

Yup, my goal is to be overweight! (For now)


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ELLEN1159's Photo ELLEN1159 Posts: 317
7/18/13 11:08 A

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Dan, I'm also one of those struggling "hose-heads" who is determined to lose weight with the ultimate goal of not needing this $^#&$^& machine, or at the very least, lowering my pressure needs to something better tolerated. About half of all apnea patients abandon CPAP treatment after diagnosis, which tells you something about how difficult this can be for a lot of us.

I've been researching weight loss as a cure for apnea and although some patients will always need to use the machine (until they come up with some other effective treatment), there is some truth in what your wife observed. Apparently, it's not a great deal of weight gain to push you from just snoring to sleep apnea, and by reverse, it may not take a tremendous loss to lower the apnea events, either. I'm sure I have had this condition for the past ten years, perhaps longer, but I didn't when I was in my thirties, and I was overweight then, just not morbidly obese. And I need to lose substantial weight to avoid going on diabetes meds (I'm one point away, or I was before I started losing weight).

A study done of Swedish men who were obese to morbidly obese and diagnosed with sleep apnea showed that once the men lost 40 lbs (they did it on a 9 week hospital-supervised liquid diet that averaged 500 cals/day, , didn't include exercise) showed marked improvement in their apnea and most were able to have their machine pressures lowered, about 10 of them went off the machine. The ones who had the worst apnea numbers showed the most improvement.

I am going to see an ENT tomorrow to get some help with the nose and throat dryness. I cut back my allergies meds to half of what I was taking and early this morning I managed to wear the mask for an hour while lying on the couch. The pressures didn't bother me as much with the full face mask. I was able to turn the humidifier up to five with a fan blowing on me and wasn't bothered by stuffiness. It was the uncomfortableness of the couch and pillows (I always hurt when I nap on the couch, especially my neck) that kept me from falling asleep, but I was able to tolerate the pressures longer than with the nasal mask.

I consider it a small victory.

I haven't downloaded the software yet for my machine. I figured if I make it through the night and want to check my report I can take the SD card to my sleep doc's office and they'll run it for me. I have the Philips Respironics System One BiPap and I think it records everything. I just have to learn how to get the software installed and figure out how you get the data from my card into my laptop. I'm a little behind the times with computers.





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MY_OWN_EVEREST's Photo MY_OWN_EVEREST Posts: 859
7/18/13 10:49 A

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Thanks for the reply!
Unfortunately (from the Sleepy Head web site): Basic models like 250P and similar do not record anything more than usage data. Most of these unsupported models have names that end in Plus.
Yep, mine is one of those Plus models, only records usage.
But the way I look at it is that until I can wear the mask for long periods of use/sleep, it is still useful for me. 2 nights ago I managed 1 hour use with 15 minutes of sleep, and last night I had issues with my nose and only wore it for 15 minutes. When I can master it, maybe I will think about trying to get upgraded.
IN the meantime, I REALLY feel like I want weight loss to be the missing key to alleviating this apnea. My wife says that when I was down around 200 pounds it was not a problem. And even at 230 or so it was less severe than it is now. I am 245 right now.
I may try a chin strap, but I am not even sure I would like that. I am not sure if it is claustrophobia related but I have an fear/intense dislike of, well, its hard to explain. Let me put it this way: Not being able to pull a shirt off because the collar is too small, or not being able to get my wedding ring off because I am too fat could/can cause me to go into panic attacks. I guess normal things that suddenly are beyond my control? I can just imagine rebelling against something forcing my mouth closed.
Oh well, will be trying the mask again tonight around 1am after work, hoping for better results.

Edited by: MY_OWN_EVEREST at: 7/18/2013 (11:06)
Dan
(formerly Lonestarmadillo)
Marshall, Texas

In front of me, today, is My Own Everest.

Today is a gift.
That's why we call it the present

Texas is a state of mind. Texas is an obsession. Above all, Texas is a nation in every sense of the word - Author John Steinbeck


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METAMORPH2010's Photo METAMORPH2010 Posts: 123
7/18/13 1:27 A

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I'm not a mouth breather, so I'm not sure I can be a lot of help in that regard, but I definitely get the impression that a chin strap is a much better solution than a full-face mask. Me, I can barely tolerate anything on my face and use a nasal pillow -- the Aloha mask, which I like quite well.

It's a zoo out there in CPAP land -- it's a real racket, and the patient is the one who loses out. I don't trust the suppliers (or the doctors) at all. They can't be bothered to get things right and then blame the patient for being noncompliant. I highly recommend cpaptalk.com for some excellent advice for taking control of your own treatment. There is software available that allows you to see ALL the data on a Respironics machine (also the Resmed machines, but I'm not familiar with that). I use SleepyHead, which was developed by a geeky sleep apnea sufferer and is available online for free (though I would encourage making a payment to the developer). You can also get information on cpaptalk.com about adjusting the settings yourself. Just remember to note the settings on your machine before you change anything and don't let on to your doc or equipment supplier that you are monkeying around with things. But it's your life, and you have a much greater investment in things working out for the best.

You can also buy masks at cpap.com for a fraction of the price of those sold by the suppliers. I can't even get my Aloha mask from the supplier here -- I mean, try getting anything but a Resmed or Philips Respironics mask from the suppliers...

BTW (and this is mainly directed to GrammaCathy), I have tried the Circadience cloth masks (which I purchased from cpap.com), and they frustrate me no end. One night I'll have the most awesome night's sleep, and the next night I can't stop the damned thing from leaking at all, and I have a horrible night. There is no rhyme or reason. I like using the Sleepweaver once in a while when I'm fed up with having silicone things up my nose but not for more than a night. And I've had no success at all with the Elan.

Okay, I"ll shut up now.

Here we go again... April 2014. Never give up!

SW: 300 lbs. (BMI 51.6 = "obese")
GW: 173 lbs. (BMI 29.9 = "overweight")
Then reassess: Do I want to be "healthy"?
(144 lbs., BMI 24.9)

Yup, my goal is to be overweight! (For now)


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ELLEN1159's Photo ELLEN1159 Posts: 317
7/16/13 10:03 A

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@Lonestararmadillo: I've had my machine since May 6 and I've yet to be able to fall asleep at night with it on. Why? Two things: claustrophobia and the high pressure settings (min. 15, max 25) my severe apnea requires.

Most of the time the sleep techs slap a full face mask on you during the titration phase of your study, and they usually either send you home with it or prescribe whatever one you used, assuming you had some success with it. The problem is, for many if not most people, the full face mask aggravates the feeling of claustrophobia, so it dooms a lot of people who just can't bear the mask and give up. I tried two different full face masks that were pretty comfortable, the Mirage Quattro and the Amara (Amara had a nasty, petrochemical smell), but they leaked so much that I had to use them with mask liners, fabric covers for the rim of the mask, and the excess fabric that stayed inside the mask made it stuffier and worsened the claustrophobic feeling. I'm now using a Wisp nasal mask that leaks less but air gets into my mouth and wants to exit, so I need to use a chin strap with it. Another thing to get used to. My aversion to the machine has grown, not diminished, over time, but my apnea is not getting better on its own.

One thing that helped a little was my machine has a "C-flex" feature that allows the tech to adjust the pressure I exhale against, really important with my high pressure settings. I have a heated humidifier that I have set to 4 to combat the upper palate and throat dryness that come along with the high pressure settings.

I've been using the machine during waking hours, while watching TV, to get used to the pressures and noise and other side effects. Next step is to use it while taking a nap in my recliner, then eventually to wear it to bed for the first phase of sleep (I usually sleep two hours or so, wake up gasping for air, then need to watch tv or read for a little while until I'm ready to fall back asleep again, usually in less than an hour, then sleep for another three to five hours).

I woke up with a headache this morning despite 7 hours of "sleep" (once I added it all up). At some point,the pain of dealing with the apnea will be greater than my distaste/anxiety/fear of this machine and I will get over my aversion...I am quickly approaching that day. My quality of life stinks right now because I'm ruled by fear.

Keep at it, don't give up. There are lots of people online to help us through this. Google "CPAP adjustment: and you'll find videos and blogs giving advice on desensitizing yourself to the mask and overcoming the claustrophobia.

I'm told it's the attitude that makes or breaks this, and I am working on mine. I've been keeping a journal and writing down allthe things I want to accomplish when I'm compliant with my CPAP therapy and I have more energy. It helps me to unload the negative emotions.

Don't give up.



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GRAMMACATHY's Photo GRAMMACATHY Posts: 19,217
7/15/13 7:06 P

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You have done a lot of pre-planning so that indicates to me that you will keep trying and adapting until you love the machine as much as several of us here. When you wake up and the mask is off, just slap it back on. Some leakage is okay, so try loosening the mask to stop the red mark over the nose.

Does the forehead piece flex? You might adjust that so there is less pressure over the bridge of the nose. www.youtube.com/watch?v=L_rq1smPDKo If this is the mask, I am not impressed. It is a dinosaur.

I want to try these cloth masks 1800cpap.com/circadiance-sleepweaver
-c
loth-nasal-cpap-mask.aspx


Complain like crazy with that full face mask. They should be able to trade out masks up to five times or every three months. Check your insurance. One last thought, try putting a piece of lambs wool over the bridge of your nose to protect it too.

Best of luck. Just be a strong advocate. I will see if I can get some more input from our other members here.



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MY_OWN_EVEREST's Photo MY_OWN_EVEREST Posts: 859
7/14/13 3:30 P

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Yes, I DID in fact have my sleep study on June 3rd. It was quite the experience. After a few hours of sleep, I was fitted with several masks, but being a mouth breather I ended up with a full face mask. The rest of the night varied between bouts of claustrophobia, and feeling like a the "end" of a wind tunnel.
Apparently I got enough sleep for them to diagnose me. Unfortunately, when I went to get fitted for my machine and mask a few weeks later, the doctor had not released a copy of the report to the sleep equipment shop, who are the same people who did the sleep study, just next door. I would love to see the numbers, and will as soon as possible, but was told I have severe sleep apnea.
As expected, I got relatively lower end stuff, and I can kinda understand that for a new user:
My machine: Phillips Resperonics System One REMstar Plus CPAP Machine with C-Flex and Humidifier. My main disappointment with this is that the SD card only tracks usage!! I want to be more involved and able to track my sleep improvements, leakage, etc. But I am not gonna fight it now, and you will see why in a moment. They have it set at 11 with a 30 min. ramp up feature from 4 available. The C-flex feature looks interesting, and probably needed by me,but I will have to turn on the machine tonight to see if they "activated" it for me.
My mask: Also Phillips: ComfortFull 2 Full Face CPAP Mask with Headgear. Only wore it for a few minutes and noticed a nice red mark on the bridge of my nose. Does not seem to be too highly recommended from what I have seen online.
So where am I at today? I have had the equipment for 2 weeks, and have not worn it yet. I have read the manuals, played with the mask a bit, and bought a hose lift so that I can sleep on my sides at night without dislodging the mask too much.
Why the delay? My claustrophobia. Went to get fitted after working all night and with no sleep and even wearing it with a 4 setting had me asking them to take it off after a minute. I have used the time since to read and gather as much info and advice as possible to help me face this with a more positive attitude instead of "caving" right away. I fully intend to keep wearing it every night, (or day, as I am a shift worker whose shifts vary on a DAILY basis) and remember that it is there to help me, not hurt me.
Interestingly, my family practice physician saw the results last week and said she would like me to set up another sleep study, as she interpreted the charts as showing that I was starting to rouse (wake up?) with the setting at 11. I am open to do that, but only after I am at least somewhat used to wearing it a bit at night.
So, it all starts tonight. Can't put it off any longer. Life Awaits!! Wish me at least a somewhat positive experience, and the patience to keep going if it isn't.


Dan
(formerly Lonestarmadillo)
Marshall, Texas

In front of me, today, is My Own Everest.

Today is a gift.
That's why we call it the present

Texas is a state of mind. Texas is an obsession. Above all, Texas is a nation in every sense of the word - Author John Steinbeck


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GRAMMACATHY's Photo GRAMMACATHY Posts: 19,217
5/28/13 1:01 P

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Wow it has been a year. I am so glad you are getting this done. www.freecpapadvice.com/ This tech has some great videos on what to expect during the testing and how to jump over the hurdles such as bad fitting masks, etc.

My second sleep study was much easier. Instead of being anxious, I chose to treat it as a night in a luxury hotel with a butler standing guard at my beck and call in the other room. I of course did not demand anything, just had fun with the whole idea and slept like a baby with no animals, or responsibilities. The first time I tried to force myself to sleep. That does not work really well.



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MY_OWN_EVEREST's Photo MY_OWN_EVEREST Posts: 859
5/26/13 1:00 P

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I FINALLY got my Sleep Study scheduled. June 3rd. I am looking forward to seeing the results and finding help with this sleep killer!

Dan
(formerly Lonestarmadillo)
Marshall, Texas

In front of me, today, is My Own Everest.

Today is a gift.
That's why we call it the present

Texas is a state of mind. Texas is an obsession. Above all, Texas is a nation in every sense of the word - Author John Steinbeck


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GRAMMACATHY's Photo GRAMMACATHY Posts: 19,217
6/11/12 1:57 A

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freecpapadvice.com/ Here is Lanky's web site and many of his videos. You can access them on you tube too. He is my favorite go to tech.

Sleep apnea is life threatening and can kill. I spent four days in the hospital from an apnea event and then about two months recovering after that. It is pretty hard on the heart even when it does not cause a heart attack.

I threw my mask off for six months. I even tied it on with a scarf and got a chin strap to help keep my mouth shut and keep it on. Despite my war with an ill fitting mask for so long, I would wake up and slap it back on because I felt so much better the next morning. It is still not the easiest thing to live with, but I sure sleep better and that makes it all worth while.

Please get that study scheduled ASAP. We want you healthy. You will also find it easier to exercise with a good nights sleep.

Yes, I am the research queen, so if you are having trouble finding an answer to a question let us know. One of us will find a good link for you or at least give you our opinions. Best of luck.



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BRAVEONE92's Photo BRAVEONE92 SparkPoints: (113,021)
Fitness Minutes: (140,550)
Posts: 22,351
6/10/12 8:37 P

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emoticon to a great team! There are lots of good information that Cathy
has put on this site. I hope that you read them and that they will help you. If
you have specific questions, don't hesitate to ask. One of us, including
Cathy~Leader, will answer your questions.

You're doing what I did before I got on cpap, now a bipap. I would fall asleep
anywhere, anytime. Hubby had a hard time waking me up at times. I have had
sleep apnea for years like you, but I thought mine was allergies, because I
was taking allergy shots. I would wake up, felt like I was smothering. What
I was doing, I quit breathing. That is a very dangerous thing to let go without
treatment. It can cause a heart attack and death.

I hope that you ask your primary doctor to refer you to have a sleep study
ASAP!

I wouldn't think of sleeping one night without my machine and mask. It
takes time to adjust to masks, but you will have to try a few, until you
find one that will work for you. Most supply stores will allow you to try
a mask for a week or so, and if you don't like it, you can return it and
try another.

I suggest that you try LeftyLanky, he demostrates masks and he wears
uses one as well. Cathy will provide a link. I don't have it. He is on you tube.

Best Wishes, Please keep us posted on how you're doing.



"I lift up my eyes to the hills-where does my help come from?
My help comes from the Lord, the Maker of Heaven and Earth."
Psalm 121: 1-2 (NIV)


 
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MY_OWN_EVEREST's Photo MY_OWN_EVEREST Posts: 859
6/10/12 12:48 P

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Hi, Dan here.
According to my wife, and I believe her, I have had sleep apnea for the last 10-15years, started while I was still in the Air Force, and has continued since. Of course, my weight gain has accelerated since "Uncle Sam quit breathing down my neck", and that has seemed to make the apnea worse this past year or so. Unfortunately, I continue with working shift work, the shift changes every few days with 1-2 days off in between if I am lucky. I have noticed recently a tendency to fall asleep especially on mid shifts, but other shifts too, practically at the drop of a hat. For example, If I quit typing now , and just relax and stare at the screen, I could be asleep in minutes. Even if I am (or at least felt) well rested earlier.
I am going to call my health care provider and get tested as soon as possible. A little bit nervous about the device I might have to use later, as I am clastrophobic, but I intend to take a positive, dont quit attitude, and reap the benefits instead of the fear.


Dan
(formerly Lonestarmadillo)
Marshall, Texas

In front of me, today, is My Own Everest.

Today is a gift.
That's why we call it the present

Texas is a state of mind. Texas is an obsession. Above all, Texas is a nation in every sense of the word - Author John Steinbeck


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