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Latest Activity

99 replied to Fred's discussion CPAP - cure worse than the disease
"Do not turn light on as this hinder you from falling asleep or choose red light instead which do not afect your sleep"
Oct 27
99 left a comment for Joan Williams Rice
"Hi Joan visiting pelham and I have osa"
Oct 27
99 left a comment for martha crabtree
"Hi maths visiting pelham "
Oct 27
99 left a comment for Rhonda Harrison
"Hi Rhondda I am visiting pelham and have osa "
Oct 27
99 posted a discussion

Leaky gut

Do you have a leaky gutHow would you knowA telltale sign for leaky gut is Athletes footI wish to ask do you have or suffer from itThe reason I ask is maybe this is a common denominatorJust text yes or text noAnd if you are the first to text also keep a tallyExample38 yes 0 noYour input would alter the tally39 yes 0 noSo now I will input first1 yes. 0 noSee More
Sep 26
richard graham posted a status
"For the first time in a while I got a whole night sleep with my machine but woke up beat and left side of my head feels weird, not sure if"
Sep 2
Brendan Duffy posted a status
"How did you sl"
Jul 9
Pat Kniel updated their profile
Jul 7
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…"
Jun 27
ZolliStar replied to ZolliStar's discussion New mouth device on the market
"You can try this website: 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…"
Jun 27
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…"
Jun 27
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
CPAP was a $2.3 billion business last year, is a household word for millions of Apneacs around the world, and deserves credit for saving the lives of countless souls.  But there Colin Sullivan was tonight, the inventor of CPAP scrounging around for an available seat and eating from the same walk-up buffet of fried chicken and jambalaya as the rest of us at a routine sub-committee meeting of the American Thoracic Society.  I wouldn't have noticed him otherwise, but my dinner companion pointed him out and I made my way over to introduce myself and thank him on behalf of myself and the entire CPAP patient community. "It's really an incredible device when you use it properly," I said.  

"Yes, it really is, isn't it?" Dr. Sullivan responded, graciously ducking out of taking credit for his invention, instead seeming to marvel with me over it as if it were something that had always had a life of its own.  Then I asked if it were alright to get a picture with him, which he happily agreed to.  I expected him to be okay with that.  What I did not expect was when he pulled out his own camera and asked if he could get a picture taken of the two of us with his camera.  It then occurred to me that as star-struck as I was with him, having introduced myself as the founder of a popular Sleep Apnea forum for patients, he had a little bit of the same regard for me.  For Dr. Sullivan, it is and always has been all about the patient.

In 1979, the only treatment for Sleep Apnea was a hole in the neck, which had quite a chilling effect on the number of people who self-identified as Sleep Apneacs. Dr. Sullivan tells the story of how since there were so few patients, he had to use himself, his lab partners and their wives as guinea pigs for his crazy new idea to use positive airway pressure to splint open the airway.  Once he had demonstrated that CPAP worked, more and more people stepped forward and advocated for themselves to get the machine.  It was the patients then, just as it is the patients now, he said, who were their own advocates for getting their doctors to prescribe CPAP, and for improvements to be made to CPAP to make it more comfortable to use.  He doesn't seem to give a hoot about medical protocol, procedure or propriety unless it is in the service of patients.  

I saw Dr. Sullivan's shoes.  They look more like something picked up off the rack at Sears than Ferragamos.  You would expect the man responsible for saving countless lives and bringing about a multi-billion dollar industry to be extravagantly wealthy.  He's not. The scuttlebutt at the dinner was that the folks who made millions commercializing Dr. Sullivan's invention didn't really share the wealth.  Dr. Sullivan isn't bitter, though.  Knowing that patients like me are living better lives than we otherwise would but for his existence seems to mean something to him.  And that might explain why he wanted that picture of himself with me at least as much as I did.

Colin Sullivan, inventor of CPAP and Mike Goldman, founder of Sleep Apnea Support Forum

Colin Sullivan gave a slide presentation at the dinner I mention above.  I took many pictures, many of them of never-before seen materials from the invention of CPAP

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Replies to This Discussion

Nice article. He seems like a very interesting man.
Awesome, Mike. I'm delighted that you could thank him on our behalf.
What a wonderful, humble man. I work with doctors, and they seldom are that humble. I, too, am a CPAP user. I was fortunate enough though to have an excellent physician that suspected the problem and ordered the test. I LOVE my CPAP, and don't even lie down for a nap without it being in use.
Thank you so much for sharing your humble insight into this wonderful man and his genuine concern for revealing not only the truth about an invisible death but creating the CPAP itself to overcome this unneccessary early death of so many. I have been on CPAP for 5 years and I am forever thankful and so blessed to have known this story. Dr Sullivan one of the truly good guys in this world.
Thanks, Mike. I only wish CPAP had provided for a comfortable retirement for the good doctor.
Wonderful man.I wish he could invent a mask that would fit my particular compromised anatomy. A custom made mask that would save a patient with a missing jaw bone from having a tracheostomy to breathe during sleep. I do well with cpap/bipap but not with the masks that are available.I have a closet full of unusable head gear and masks because I need a mask or headgear that does not depend on support from the lower jaw. It would save my life.
I have the same problem & I have found 2 masks that I can use. Puritan has one that goes over the head that fits very well. The other one is on this website . This is an Oral unit & I love it. Nothing touches your face except the nasal pillows against the nostrils.
I can not thank youenough for this post, Patricia, I will definately look into your reccomendations. At this point I am so desperate I will try anything.You may very well have saved my life.

Patricia Ann Shuff said:
I have the same problem & I have found 2 masks that I can use. Puritan has one that goes over the head that fits very well. The other one is on this website . This is an Oral unit & I love it. Nothing touches your face except the nasal pillows against the nostrils.
A picture of 2 heros in my book.
Absolutely fascinating, Mike!!! THANK YOU. And, jnk, THANKS for the link to that ASAA article too. Whatta guy that Dr Sullivan. AND, frankly, I'm hoping that Scott Reed DOES post his early information as well!!! It obviously took many from various walks of research and medicine before it all came together to the PAPs we have today. I'd be willing to bet that a meeting and conversation between Scott and Dr Sullivan would REALLY be fascinating discussing those early days!!!
Cool, thanks Mike and thanks to you Dr. Sullivan for giving us all hope and many help.

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