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ZolliStar replied to Fred's discussion CPAP - cure worse than the disease
"I'm wondering: what prompted you to consider whether you have sleep apnea in the first place? Also, waking throughout the night isn't uncommon especially as we (*sigh*) age.  I seem to every 90 minutes or so. This pattern probably…"
Saturday
ZolliStar replied to ZolliStar's discussion New mouth device on the market
"You can try this website:  http://zyppah.com/ I have a MAD (mandibular advancement device). Dr. Steven Park evaluated my mouth and throat (not everyone can use a MAD, it turns out) and pronounced me a candidate for it. The truth?  I…"
Saturday
Mary Z replied to ZolliStar's discussion New mouth device on the market
"The link didn't work so me so I couldn't see the product.  I do have experience with a supposedly reliable boil and bite device.  I should know by now I have a small mouth and nothing regular size fits.  I don't think…"
Saturday
richard graham replied to ZolliStar's discussion New mouth device on the market
"If I thought something could work other than this lousy cpap that would be awesome"
May 22
richard graham posted a status
"I moved and have been sick a lot and can't use cpap because of cough and I'm depressed a lot"
Apr 26
Fred posted a discussion

CPAP - cure worse than the disease

It's ironic that before I was diagnosed with sleep apnea in 2000, I had no problem sleeping 8-9 hours a night. If I did wake up during the night, I had no problem falling right back to sleep, and I wasn't tired during the day.From the first night I brought home the CPAP I haven't had one decent night's sleep. Not one. I don't have any problem falling asleep, but I can't stay asleep. At first I was waking up after 4-5 hours and couldn't get back to sleep for a couple of hours. Now it's more like…See More
Apr 13
Fred updated their profile
Apr 13
ZolliStar posted a discussion

New mouth device on the market

I've been hearing advertising for this product over the past few days.  It's sold as something to help snoring, but as I look at the information it seems to me that it would work just as well as my mandibular advancement device (MAD).In other words, this could help some of us with sleep apnea.Read about it here.Anybody have any thoughts about this?  See More
Mar 31
99 replied to Mary Z's discussion AHI finally under five.
"Hi Richard I mainly use an empty humidifier as it reduces noise"
Feb 16
richard graham left a comment for richard graham
"When I can afford it I'd like to get New machine with heated tube"
Feb 10
richard graham replied to Mary Z's discussion AHI finally under five.
"I would like to see this forum active again as well. I will be more aware of what's going on"
Feb 10
ZolliStar posted a discussion

If you have trouble falling asleep....

I thought that when I got my sleep apnea diagnosis, that -- at last! -- all my sleep problems had come to an end.Ha!I have trouble falling asleep. Indeed, I rarely feel sleepy at night although I do feel tired. I even cut back on computer at night, etc., etc. (and installed f.lux on my computer) but I still had trouble. Now I'm doing something different: wearing special glasses (Uvex S1933X Skyper Safety Eyewear glasses). They block out the blue -- and they're making a difference! First I tried…See More
Feb 1
99 replied to 99's discussion colloidal silver
"i have purchased some silver the make my own colloidal silver"
Dec 21, 2014
99 replied to 99's discussion colloidal silver
"just add to the distilled water it is antimicrobial eg cleans your machine and is beneficial for keeping you healthy  from bugs germs viruses you get the picture and when you need to clean the humidifier out, put water on your plants the silver…"
Dec 21, 2014
Mary Z left a comment for richard graham
"If the heated tube works with your machine I would try that.  They also make covers for your tubing which may help some.  I think the heated tube may be your answer.  Keep us posted."
Dec 21, 2014
Mary Z left a comment for richard graham
"Richard, some folks just use the humidifier in a Passover mode.  They just don't turn it on, but let the air pick up moisture without heat."
Dec 21, 2014
Mary Z replied to 99's discussion colloidal silver
"99, where have you been?  Do you add the colloidal silver to your humidifier?"
Dec 21, 2014
Mary Z replied to Andy's discussion Resmed S8 AutoSet II - No Longer Collecting Data??
"I Andy, I realize I'm months behind your post.  I have no idea why your S8 would stoop collecting data.  I'm glad to hear  you're having such improvement with your apnea.  I have made great strides since I changed…"
Dec 21, 2014
Mary Z replied to Andy's discussion Resmed S10 AirSense - Anyone have one? Any feedback?
"Andy, just found your post.  I don't know anything about this new machine.  How are you liking your new ResMed?"
Dec 21, 2014
Mary Z left a comment for Kay Day
"Kay, I haven't been around myself and miss the old, active forum."
Dec 21, 2014

I'll preface all this by saying SleepGuide.com is probably the only place on the internet where you can have an intelligent discussion about anything that might cast CPAP in a negative light, given the financial interests of the other venues out there for education and support (read: people who want to sell you CPAP).  But I went to my doctor the other day and we got into a debate about whether if my next sleep study shows that my weight loss has reduced my AHI to acceptable levels, whether I should get off CPAP.   I argued against it, since my perception is that everyone has obstructed breathing at some point when they sleep and that positive airway pressure can only help keep the body oxygenated and healthy, even if the level of obstruction does not rise to the clinically approved definition of an apnea or hypopnea event.  The doctor disagreed, saying that reliance on CPAP reduces muscle tone in the tongue and that it can actually make you worse off.  He likened it to wearing a cast on your foot that keeps the foot immobilized -- sure that is needed at times, but when you don't use those muscles, you lose them.  

What do you all think?

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I agree with you. I can't even imagine not using my CPAP at night. I can't sleep soundly at all if I for some reason don't use it, which is not too often. I go into panic mode at just thinking that I may stop breathing; my snoring even before I started using CPAP (around 13 years now) was to the point that my wife could not sleep in the same room, so I know that it has been a life saver.

I don't believe it has weakened my tongue or muscle tone in that area. Yes, I am overweight, but am working on losing, but even before I gained this weight, I relied on the CPAP to breathe, and yes, maybe, peace of mind!

I don't think I will ever discontinue my CPAP, and I don't have a problem with that at all.

Well, here's my non-medical perspective...

I wasn't diagnosed with restless leg syndrome during my study, so I figure my feet, limbs, etc. are mostly immobile when I sleep. So what if my tongue is too?

During the day when I'm awake, I'm exercising my muscles, including my tongue muscles. That should be helping the tone.

I'm not saying there isn't any impact on tongue muscle tone, but it seems to me you also have to balance that against the negatives of the remaining apneas.

Most medical treatments have at least some risk of side effects. However, people generally accept them when/while the benefits exceed the risks.

Mike, Is your doc just flapping his tongue or does he actually have some evidence to back up this statement? Sounds like it is something he made up.

Anecdotally I can say CPAP made my tongue stronger. CPAP gave me renewed vigor and energy to stay awake longer and interact more socially which meant more exercising of my tongue. haha

If I didn't know any better, Id thought that I was listening to General Ripper from the movie Dr. Strangelove. With that said, I've been using cpap for 16 years and my tongue is as strong as it was then. Don't ask me to prove it :-)

uh oh.  need clarification of the reference to Dr. Strangelove.  Not to date you, but I'm 38 years old, and that's a little before my time.

Jeffrey Donaldson said:

If I didn't know any better, Id thought that I was listening to General Ripper from the movie Dr. Strangelove. With that said, I've been using cpap for 16 years and my tongue is as strong as it was then. Don't ask me to prove it :-)



Banyon said:

Mike, Is your doc just flapping his tongue or does he actually have some evidence to back up this statement? Sounds like it is something he made up.

Anecdotally I can say CPAP made my tongue stronger. CPAP gave me renewed vigor and energy to stay awake longer and interact more socially which meant more exercising of my tongue. haha

Flap, flap.  Thanks for the laugh.  After almost 6 years of using a CPAP,  I think my tongue is as strong as ever.  My guess is that when I'm running my mouth, some people would be happier if it was weaker. 



Rette Tyrrel said:

Flap, flap.  Thanks for the laugh.  After almost 6 years of using a CPAP,  I think my tongue is as strong as ever.  My guess is that when I'm running my mouth, some people would be happier if it was weaker. 

Banyon said:

Mike, Is your doc just flapping his tongue or does he actually have some evidence to back up this statement? Sounds like it is something he made up.

Anecdotally I can say CPAP made my tongue stronger. CPAP gave me renewed vigor and energy to stay awake longer and interact more socially which meant more exercising of my tongue. haha

Flap, flap.  Thanks for the laugh.  After almost 6 years of using a CPAP,  I think my tongue is as strong as ever.  My guess is that when I'm running my mouth, some people would be happier if it was weaker. 

A cast is on 24 hr/7 days a week, CPAP is not. Without some evidence, the similarity seems silly.

Well, this article seems to agree with the doc - well, sort of. The news is excellent, BTW!

FWIW, I'm seeing a speech therapist on Monday for the exact mouth, tongue, and throat issues. Can't wait to see what happens then!

I'm afraid to sleep without my CPAP. I've learned of three sleep apnea deaths since my June, 2011 diagnosis.Put me on Mike's side of the line on this.

BUT I would love to learn what your doctor says, Marcia. The article was intriguing. I'm going to start doing the exercises: I'd like to be able to take short naps without "suiting" up and might consider doing so if these exercises were truly effective. Or even just effective.

Marcia Herman said:

Well, this article seems to agree with the doc - well, sort of. The news is excellent, BTW!

FWIW, I'm seeing a speech therapist on Monday for the exact mouth, tongue, and throat issues. Can't wait to see what happens then!

I will attempt to remember to post what happens at the visit! I don't want to sleep w/o my machine either; I hate waking up with 02 levels in the low to mid 80s. Ugh.

And interrmittant hypoxia weakens your cardiovascular system, metabolic system, heart and brain.  Personally, I'd rather risk weakening my tongue than my heart and brain.  Plus a single apnea will kill you if it lasts long enough. 

I'll keep my APAP machine, thanks.  I consider it my best friend and saviour and wouldn't dream of leaving home without it.

Sarah Gorman

P.S. Was that your PCP or sleep doc? ( Scary either way.)

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