Call For Feedback: Puresleep.com Dental Device

Hi, I am a guest as you can see. I think I have sleep apnea and I know I need to get to my doc and have it checked out. I am being silly, I know, in avoiding this inevitable appointment, but I can't stand the thought of wearing a mask on my face for hours. I know it will drive me crazy, I am so claustrophobic. I found this website when I was looking for information on that puresleep product. I guess that was a fantasy, but what about any other devices besides cpap. Does anyone have any suggestions at all? I am lost with this and feeling like my health is seriously at risk yet I am unable to deal with the idea of cpap. I know it sounds childish....

DeeDeeLee wrote:Hi, I am a guest as you can see. I think I have sleep apnea and I know I need to get to my doc and have it checked out. I am being silly, I know, in avoiding this inevitable appointment, but I can't stand the thought of wearing a mask on my face for hours. I know it will drive me crazy, I am so claustrophobic. I found this website when I was looking for information on that puresleep product. I guess that was a fantasy, but what about any other devices besides cpap. Does anyone have any suggestions at all? I am lost with this and feeling like my health is seriously at risk yet I am unable to deal with the idea of cpap. I know it sounds childish....

DeeDeeLee,

A little over four months ago, I walked out of a doctor's office crying my eyes out. I was holding a prescription for a titration appointment because I'd been told that yes, I did have sleep apnea. I had no idea how I could cope. I'm claustrophobic, too, and the idea of sleeping in a mask, tied to a glorified hairdrier for the rest of my life was beyond horrifying.

Luckily for me, I had been referred to this site for information for my brother-in-law, who's a CPAPer, and who was not coping well in the powerless aftermath of Hurricane Ike. (He lives in Ohio, for ghu's sake... who in Ohio expects to cope with hurricanes?)

So, I posted, and got answers.

First, get thee to a doctor and find out for sure instead of stressing yourself to pieces about it. Then, if you do have sleep apnea, come back here and post your sleep study. People here can help you figure out what all that medicalese MEANS.

If/when you are scheduled for a titration (that's where they figure out what pressure(s) will be optimum for you), call the sleep center at once and set up an appointment with their mask specialist. The one at my center spent around 3 hours with me, trying on masks under light pressures until I found one which worked for me.

After your titration (if you have one), request of your physician that you get a fully data capable machine, not one that just records compliance. Then come back to CPAP.COM and get the correct software and card reader for your machine.

People here can help you with comments on their favorite masks and machines. They can help you find ways to cope if need be.

BUT: we can't help you if you won't help yourself by initiating the process with your doctor. Who knows? You might not even have sleep apnea, and all your fears and stress will have been for nothing!

Hi DeeDeeLee,

I got here (to this forum) just last week looking for ANYTHING besides my CPAP machine. I think we've all been where you are. I knew I had sleep apnea as soon as I read about it. I do know that you don't want to put off finding out for sure. This group has really helped me find out more about what CPAP is and isn't. It's made me want to give it another shot, as I was not adjusting well. But I didn't really know what to do about it at the time.

So far the only thing I have found that has made me not need my CPAP was hiking (not climbing) in Yosemite all day and sleeping at an elevation of 5000+ feet. I was told I didn't snore and I felt fine. No actual medical input there.

If you read their add it says NOT TO TREAT SLEEP APNEA.
I'm afraid people might think it was a substitution for their machines.
Its not its an attempt to keep the airway open to prevent snoring not apnea.
I say avoid it.

ginagarydoyle@comcast.net wrote:Puresleep works!!!!!!! We were on the verge of seperate bedrooms at opposite ends of the house due to snoring but, purchased pure sleep mouthpiece and no more snoring!!! The very first night it began to work and continues to work on a nightly basis. This is the first product we have ever purchased and had no regrets what so ever. The price is right and in fact, could easily be worth much more than what is charged it works so well. We don't endorse many products but, we highly reccomend and endorse this one. Buy it, you won't regret it..... :

We had the same experience. The problem now though is my tongue and mouth are so irritated and I don't know why... has this happened to you?

Chatnpostgirl@aol.com

johnnygoodman wrote:* Is it misleading to newbies to introduce this as a viable alternative/supplement to CPAP therapy?
* Is it beneficial to CPAP users with moderate Sleep Apnea looking for a better way?
Johnny

I think their site answers it best:

"PureSleep is not intended to treat sleep apnea or any other disease. PureSleep should not be used by anyone under 18 years of age; anyone who has been diagnosed with central sleep apnea or a severe respiratory disorder; or anyone with loose teeth, oral abscesses, severe gingivitis, full dentures, or temporomandibular disorder."

If even they put the disclaimer on it.....

Most of their marketing is geared more toward snoring than OSA. Take a stroll through the medicine/pharmacy area at your local Walmart and you'll find that Puresleep isn't the only one; just the one making the most noise right now. To me, the trouble with marketing towards snoring is that the vast majority of folks don't understand that snoring is usually just a symptom of OSA which we know is a far more serious issue than an obnoxious noise. I know I didn't understand before a nurse told me to get checked for OSA. I tried 2 or 3 snoring "remedies" with little success; mostly so my snoring wouldn't disturb my wife so much. Its really an education issue. Fortunately, I think there is progress being made there. 6 years ago when I was told I have OSA I had never heard of it. Now I often see articles detailing is dangers. I just feel bad for the folks that think their only problem is noisy snoring.

I looked this over and after using CPAP and knowing what I know now I doubt that this device would have any affect on Sleep Apnea but it does say that doesn't it? It really is sold as a device for snoring, right?
I kind of agree with Goose that people should have the opportunity to try most anything they want to help their problem as long as it isn't going to hurt them. So if it won't do damage and they can buy from someone they can trust with their credit card and the inventor is willing to stand behind the product it might be worth putting on your site with a big disclaimer about SA.
A big plus would be if the company would let you test it out. Maybe even a test group from this forum with known snorers.
That would be a good test for the product. If it turned out well you could carry it with a good conscience.

You are absolutely right, S-Dubya. You raised the same concern I have about anything marketed to "stop snoring."

S-Dubya wrote:To me, the trouble with marketing towards snoring is that the vast majority of folks don't understand that snoring is usually just a symptom of OSA which we know is a far more serious issue than an obnoxious noise.
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Its really an education issue.
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I just feel bad for the folks that think their only problem is noisy snoring.

I've occasionally had this thought... if a husband were sitting in the den watching TV with eyes open, and was making the continous choking sounds of "snoring" while wide awake, his wife would NOT just poke him with her elbow and say, "Be QUIET!" Nor would she leave the room so she wouldn't have to listen to it. She'd be calling 911.

Snoring is dangerously misunderstood.

It's not something that's simply annoying or comical.

In far too many people, it's a symptom of at least some degree of not getting enough air while trying to breathe during sleep.

Very often, snoring is a big red flag that the person has Obstructive Sleep Apnea, as you pointed out, S-Dubya.

Snoring can be a warning sign that a person is suffocating repeatedly every night -- just as surely as if an intruder were standing beside the person's bed, leaning down, putting his hands around the sleeping person's throat, and choking him. Choking him slowly and carefully in a way that doesn't wake him. Letting up just enough to allow the person to suck in a few breaths to stay alive, then slowly squeezing the throat closed again. Over and over and over, all night long.

The bed partner says, "Turn OVER...you're snoring again!" A few clear breaths, then the suffocation resumes.

Yep. Education about Obstructive Sleep Apnea is very much needed. For doctors as well as the general public.

dieselgal wrote:I doubt that this device would have any affect on Sleep Apnea but it does say that doesn't it? It really is sold as a device for snoring, right?

No matter how many disclaimers or warnings a product has about "sleep apnea", if the major emphasis in marketing the device is to "stop snoring", that isn't a good, imho.

dieselgal wrote:I kind of agree with Goose that people should have the opportunity to try most anything they want to help their problem as long as it isn't going to hurt them. So if it won't do damage and they can buy from someone they can trust with their credit card and the inventor is willing to stand behind the product it might be worth putting on your site with a big disclaimer about SA.

I understand that view, and I'm a big believer in people choosing what they want to do, as long as they are not harming someone else. Drowsy driving injures and kills many people every day... not only the OSA sufferer, but many innocent others.

A study in Australia:
http://ajrccm.atsjournals.org/cgi/conte ... 170/9/1014
An excerpt:
Motor vehicle accidents remain a common cause of injury and premature death (1). Between 20 and 30% of accidents involving commercial vehicle drivers are sleep-related (2, 3).


And two excerpts from an analysis publised in Journal Sleep in 2004:
drivers with OSAS have a higher rate of collisions than do control subjects. 10-19
Studies comparing alcohol-impaired subjects to subjects with untreated OSAS show that subjects with untreated OSAS perform as poorly on simulated steering and psychomotor reaction time tests as legally intoxicated control subjects.


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CONCLUSION
OSAS contributes to many collisions annually. The consequences are great, both in terms of monetary costs and lives disrupted. Based on our analysis, the minimum estimates of annual OSAS-related collision costs, collisions, and fatalities are $15.9 billion, 810,000 collisions, and 1,400 fatalities.

My concern about promoting any device to "stop snoring" (even if the promotion carries a HUGE "sleep apnea" warning) is that the kind of heavy snoring that would cause a person to even be considering such a product probably means they do have undiagnosed Obstructive Sleep Apnea.

There's an unacceptably big chance, imho, that quietening such an obvious symptom of Obstructive Sleep Apnea is not going to address the real problem of base of tongue and back of throat being silently sucked together and airflow ceasing. It gets very quiet then.

Simply lessening the symptom of snoring might be somewhat like putting a bandaid over a possible malignant melanoma.

Out of hearing -- out of sight -- out of mind.

So, the undiagnosed OSA sufferer, whose bed partner is happy because he/she doesn't snore so loudly any more, gets behind the wheel and hits the highway. Pehaps literally.

I'm amazed at how many people can bad-mouth a product and call it snake oil when they haven't even tried it. I have purchased two dental appliances in the past (silent night, tap II) at about $500 a piece to solve my snoring problem (and mild sleep apnea diagnosed during a sleep study). They both worked but when I was faced with replacing the last one I broke, I figured why not try the puresleep? Actually, the negative reviews on multiple sites almost scared me off but I gave it a try. In fact, I bought two because the second one was only $39.95. They arrived in a few days, I read the simple instructions, heated the device in boiling water for 5 minutes, let cool for 10 seconds, and bit down on it. The instructions recommended insuring a pronounced underbite to insure the correct amount of jaw movement forward. The first night I tried it I had to take it out because I put in too much of an underbite. According to the directions, you can re-heat and reset up to 3 times. I did that the next day and did a normal bite. Now it works great, and is more comfortable than either my tap II or silent night. The ultimate test is my wife hasn't heard me snore, so it must be working. I have to caveat this with the fact that I'm used to sleeping with a device in my mouth, so probably not as much a problem for me. I have not TMJ problems. Just wanted to give a true user perspective to counter all the negative reviews base on hearsay.

I used a Pure Sleep appliance for 6 months before getting an Auto CPAP. It is not a replacement for treating silent apnea, but it does work very well. Shifting the jaw a little forward opens the throat enough to allow air flow. It eliminated my snoring in all sleeping positions except when on my back. Again, it is not a direct substitute for a CPAP, and it clearly says this on their web site, but it has its place as a helpful device and is not a sham. Also not recommended for people with TMJ.

Don't knock it until you try it ....

stj1954 wrote: ......... The ultimate test is my wife hasn't heard me snore, so it must be working. ..........

That's the problem. Uninformed people think if they don't snore then they don't have sleep apnea.

No, what you refer to as "the ultimate test" is not.

People who snore heavily need to be tested for sleep apnea. If they have no sleep apnea, then they can try the device.

Unfortunately PureSleep may be misleading tens of thousands of people into continuing to let sleep apnea silently destroy their health.

How's your conscience?

Ok, my wife just bought one, and here's why:

I was diagnosed with sleep apnea but the CPAP "titration" (spelling?) I underwent was a miserable joke. I was told I had to have a "full mask" CPAP appliance, so I went in for the overnight phase 2. The attendant hooked me up to this mask so tightly that the bridge of my nose was bruised and tender for three days afterward. That night, I FINALLY dozed off around 4:30 am, at which point I apparently started to snore. The attendant turned up the air so high I couldn't exhale. I woke up, ripped the mask off, and said I was DONE. I went to my doc a few days later and he said he couldn't issue a perscription for a CPAP unless he had a "setting" from the titration session. At the same time, he tells me "Oh well, only about 15% of the people who get those CPAP machines can use them successfully.

So, PLEASE, someone tell me how THIS is supposed to help me get better quality sleep?!?!?!? I bought one of these Pure-Sleep things out of despiration. If it helps at all, then it's worth the $60 to try.

FYI - I'm "Just Bought One". I am now a bona-fide, registered poster.