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Latest Activity

ZolliStar posted a discussion

Beating Sleep Maintenance Insomnia

I read Dr. Krakow's SOUND SLEEP, SOUND MIND and grasped the concept about slowing brainwave activity for better sleep. I found myself not able to sleep through the night, so Dr. Krakow's book was quite enlightening. Terry Vella, a poster on this site, chimed it to point out that sleep apnea is actually a breathing disorder, not a sleepdisorder. Great clarification!  This explains why I'm not sleeping through the night (I have sleep maintenance insomnia) BUT at least am sleeping when I'm…See More
17 hours ago
Mary Z replied to Ginny Edmundson's discussion New "Rant" about DME/Wisp
"Ginny, they are probably not doing anything against the law- though it may seem like fraud to us it may be an accepted practice.  I would rather change DME's.  Have you talked to the manager.  They don't want to lose your…"
yesterday
Ginny Edmundson replied to Ginny Edmundson's discussion New "Rant" about DME/Wisp
"It really burns me up that they are doing things like this.   Monday I am going to lok up th eMedicare complaint number and give them an ear full.   "
Friday
RockRpsgt replied to Ginny Edmundson's discussion New "Rant" about DME/Wisp
"Companies like this will have to pay in the end. Medicare is taking no prisoners in their effort to reform medicare fraud."
Friday
RockRpsgt replied to Mary Z's discussion Symptoms
"I had zero symptoms. I was testing equipment one night and fell asleep hooked up. When I woke up my doc said I had an AHI of 10 with 30 second events. I have been on PAP ever since."
Friday
Ginny Edmundson replied to Ginny Edmundson's discussion New "Rant" about DME/Wisp
"I just use a large rubber band and safety pin to attach i tho the sheet.  It doesn't exactly kink, but rather seems to have almost bends that don't quite ever go away.  I have one that doesn't but all the others seem to.…"
Friday
Mary Z replied to Ginny Edmundson's discussion New "Rant" about DME/Wisp
"My light weight tubing does not have a tendency to kink.  It just hangs down from the stand and comes back up to the bed.  I tried a hose hanger, but bought the cheaper travel model and it just wasn't up to the task."
Friday
Ginny Edmundson replied to Ginny Edmundson's discussion New "Rant" about DME/Wisp
"I was really surprised when the congestion improved without the humidification. Yes, I use the lighter weight tubing too.   Do you have trouble getting the bends and kinks out of them????  I have one favorite that is broken in and I hate…"
Thursday
Mary Z replied to Ginny Edmundson's discussion New "Rant" about DME/Wisp
"The reasoning behind changing the tubing is that it may develop small holes or tears which causing leakage.  I am careful with my tubing and don't have any animals or children playing with the tubing.  I don't feel like they have…"
Thursday
Ginny Edmundson replied to Ginny Edmundson's discussion New "Rant" about DME/Wisp
"I have ben using one of my cushions for 3 months now.  I think I will just see how long I can actually use it without leaks before I replace it.  I wonder if it is OK that I do not replace the tubing but about every 6 months????   I…"
Thursday
Mary Z replied to Ginny Edmundson's discussion New "Rant" about DME/Wisp
"I agree Ginny, it does come out of all our pockets.  I too have Medicare with a Humana supplement and insurance with my partners work.  This is the only year I will have anything but Medicare and supplement.  My last two Medicare…"
Thursday
Terry Vella replied to Mary Z's discussion Symptoms
"Good post Mary, I was like you when I was younger but the the sleep deprivation really started kicking in a few years ago my symptoms change, actually didn't change but got much, much worse. I was diagnosed with depression and on meds for 2…"
Thursday
Mary Z posted a discussion

Symptoms

Just trying to drum up a few posts-What symptoms did you have that got you to the sleep apnea diagnosis?I was excessively tired during the day- falling asleep eating breakfast and standing on my feet.  I couldn't drive or stay awake during appointments.  I thought this was the beginning of my apnea.  Then I remembered the mandatory 4-5 hour naps in the afternoon when I was  dead to the world.  That must have been the real beginning.  I went to my family practice doctor hoping for a prescription…See More
Wednesday
Ginny Edmundson replied to Ginny Edmundson's discussion New "Rant" about DME/Wisp
"My insurance is Medicare plus supplement.  SO I pay nothing out of my pocket.  BUT it is coming out of ALL out pockets...........My DME is a nationally known company.  I am really thinking of calling the medicare hotline.   "
Wednesday
Mary Z replied to Ginny Edmundson's discussion New "Rant" about DME/Wisp
"I think this kind of behavior may be the norm with DMEs.  I happen to have one of the good ones so I'm lucky.  It would be great if you called your insurance company.  You can steal millions if you steal $40 from a bunch of…"
Wednesday
Ginny Edmundson commented on Mary Z's status
"I was thinking the same thing, Mary.  I did make a new post today regarding the Wisp and  my DME."
Tuesday
Ginny Edmundson posted a discussion

New "Rant" about DME/Wisp

Well, it had been three months since I received my original Wisp.  And while it is still working well I wanted a "spare" on hand...just in case!   So I called my DME to ask if they had the one with the fabric frame in stock.   They did.  The next day I drove there and picked up the new mask and one extra cushion. All to be billed to my Insurance.  When I got home I realized they had the clear frame and not the fabric.  I called and told them I would take it back today and exchange for the…See More
Tuesday
Jackie Chan left a comment for Mike
"Mike when is the next Manhattan Awake meeting? I would like to attend"
May 12
Mary Z replied to ZolliStar's discussion Beware: It's possible to have sleep apnea AND insomnia
"Yeah, Dr.  Krakow on a YouTube video addresses insomnia while on CPAP.  Some people just do not for many reasons adapt to CPAP and may have numerous arousals during the night.  These people don't feel rested in the morning or…"
May 11
Mary Z replied to Louise's discussion An Article that was shared on the radio this morning
"Good the see you Rock. Do you mean CPAP as opposed to BPAP, AUTO, and ASV?  Barry Krakow has several videos on YouTube talking about this subject.  Many people just don't tolerate CPAP.  Dr. Krakow said the central apneas that…"
May 11

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?

Tags: cpap-weakens-tongue

Views: 1306

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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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