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Is there anyone with an actual success story?

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KindRubyCattle5117 +0 points · over 6 years ago

I am very surprised and saddened to see so many people having so many serious issues with their therapy. I almost feel guilty I've had such immediate success with it. I have had obstructive sleep apnea for over a decade, I am now convinced, and I have both Atrial Fibrillation and Type 2 Diabetes which I suspect were largely due to this. Unfortunately I did not know the connection until after I had those conditions or I may have addressed it sooner--I thought it was just about snoring and nothing else.

Anyway, I had a sleep study done and was diagnosed with severe OSA. Very severe. Before my second study, the CPAP Titration Study, I talked with a couple friends on CPAP therapy to ask about their experience with it, and how long it took them to get used to it. Both of them said they took to it immediately, right at the sleep lab. I was used to getting up 3-4 times per night and sleeping very fitfully. My second night in the sleep lab, the Titration Study with the CPAP machine, even wired with all that stuff, I slept like a rock! I was using a ResMed AirFit P10 nasal pillow mask (don't know what machine they use), and woke up once at 3:30 to use the bathroom. At that point I switched to the ResMed AirFit N20 nasal mask just because I wanted to try both masks they had. They had to work to wake me up at 6:30! Best night's sleep I had had in years.

I was frustrated to have to wait a few weeks to get my own machine, a ResMed AirSense 10 Autoset with AirFit P10 mask, I have used it every night since getting it, all night, and can honestly say every one of the 21 consecutive nights I have used it, all night, I have gotten a better night's sleep than I was used to getting. I never get up more than once, and on at least a couple of occasions I have slept a full 8 hours non-stop. My worst iPhone MyAir score was my very first night, at 87. The next couple nights were 95-96, and from night #4 on my score has been 97-100 every night. My mask never comes off, I don't have dry mouth, and I only woke myself up once because my mouth was open and the air flow woke me. I took to this like a duck takes to water.

I can't for the life of me understand why it was so easy for me and so tough for some of you, but clearly there are success stories. My two friends I asked about it had similar experiences to mine. I do know because of talking to them I went to the CPAP Titration Test expecting to have a great night. That certainly would not affect mask fit, dry mouth, etcetera, but my only regret is I didn't do this a decade ago.

I thought my sleep lab was terrific, and my sleep doctor, a pulmonologist in suburban Chicago, is absolutely fantastic, and they have a full-time equipment coach who gets everyone set up, I could not be happier with my health care professionals. I wish you all who are having trouble the best of luck. Keep at it!

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wiredgeorge +0 points · over 6 years ago Sleep Enthusiast

It is an encouragement to hear of another success regarding OSA. My experience pretty much is the same as yours and find it hard to give advice or tips to folks who don't adjust well because I also had zero issues other than finding the right mask (my pressure is likely a lot higher than most at 21/25 on a bipap).

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Wildflower +0 points · over 6 years ago

A few months ago I went to my primary care and demanded a dementia screen after some pretty bad episodes of memory loss. He said I was too young. Passed the test and Doc referred me for sleep study. BEST thing that ever happened!! Never thought my since childhood brain fog, perceived laziness, driftiness and anxiety was anything but my personality. I also thought I was going crazy. Its been 3 months with my Resmed airsense 10 full mask. Down to 2-5 events an hour. Tremendous difference in my life. All of above GONE. I had the home OSA study then went to the sleep lab for a titration. My doc wanted me to just get equipment and try on my own. With the sleep lab's help I have been successfully using my machine all night. The titration i believe made the difference in my success plus the local medical supply people I have worked with. Initially used Apria which were horrible!!

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DeterminedMaroonGerbil2528 +0 points · over 6 years ago

I can't seem to keep my reply open for very long so I will just say 2000 until now I have had so much success with it. Please open your mind. Prepare for success! Let it work for you. No negative thoughts allowed.

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Newoptions +0 points · over 6 years ago

If you don't succeed with the C-Pap machine there are alternatives. Most providers will not tell you about them because they don't provide them. One of the alternatives is an oral appliance that you can get from a dentist that specializes in sleep medicine. Another alternative is a laser procedure called Nightlase. According to sleep physicians the CPap is the "gold standard" but there are so many people who can't use it that it is important to know that there are alternatives and where to go to get them. Let me know if you have any questions about either of these procedures. I have had both and have had excellent documented success with both.

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wiredgeorge +0 points · over 6 years ago Sleep Enthusiast

I looked at the Nightlase alternative using a google search. The Fontana website wasn't clear on clinical evidence of its theraputic value for OSA. I saw some dentists websites quoting about $600 for each of 3 treatment sessions (3 are a complete course of treatment I guess?). In any case, is there documentation on the effectiveness of Nightlase in OSA treatment? If you had this procedure done, what level of sleep apnea were you prior to this procedure and what was the reduction in sleep apnea events?

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snuffie3456 +0 points · over 6 years ago

Oral appliances work by thrusting the jaw forward-messing with your TMJ and teeth alignment. Most Orthodontists and Physical Therapists agree that oral appliances, while effective, are NOT worth the risk.

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ImaginativeBabyBlueRam1398 +0 points · over 6 years ago

Athena, I'm with you on your assessment of CPAP. I'm happy for those who have had immediate success, but I'm not one of them.

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wiredgeorge +0 points · over 6 years ago Sleep Enthusiast

Athena posted her negative experiences over 6 months ago and has not come back onto the site since then. If you have issues, why not try and look for a positive resolution by self-education and asking questions? MANY of the posters here on this site have had issues and problems and the ones who have been persistent and looked for answers seem to have a higher likelihood of effective therapy than most. Good luck in your search for better sleep!

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barbz +0 points · over 6 years ago

Plus, dealing with sleep apnea is an ongoing journey with bends in the road etc.. I have to say that while my journey has not been as dramatic in its positive results as I would have liked, I did greatly improve. Been using CPAP since 2007. I have a narrow face which limited me. Then I found the Hans Rudolph full face. Things were super for many years until my face started to itch, so goodby to my beloved HR mask.

Then, I had a silent stroke in my brainstem, and this caused me to develop centrals while sleeping. Centrals require a specific type of machine, the ASV which stands for Adaptive Servo Ventilation. What a difference in my sleep. I wish I could say my sleep is perfect now, but it isn't. It is better in many ways, especially if I look at the health options out there for me if I don't use my machine. For me, that could easily be a major stroke!

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CompassionateSalmonEagle3453 +0 points · over 6 years ago

I have a success story had. Cpap. And. It bugged me super bad. Was dead tired but one day i got 2 1/2 feet fan and Slept with it next to my bed right by my face and wow it works great i been of my cpap for 3 to 4 years now hope this works for you like it worked for me. You can contact me for my email if you have any questions

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EnthusiasticTaupeGoshawk5279 +2 points · over 6 years ago

I would say my story is a success. I am currently 170 lbs, 5' 11", 49 yrs old, married, healthy, and on no pharmaceuticals. I do still have a few amalgam fillings. Starting around 2010-11, I began with mild apnea. I was approx 190lbs. This went on for 1yr then it got very bad, very quickly. My wife reported approx 10-20 episodes every night. I would simply stop breathing until i made a loud gasping, creaking noise which woke her up. Re a "diagnosis" and sleep studies, i didnt need a sleep study to tell me what my wife and i already painfully knew. I had CSA. My symptoms were typical. I felt horrible all day. Fatigue, frightening angina pain, headaches. I took at least 8-10 ibuprophen a week. I put up with it for almost 2 yrs, believe it or not. I knew guys who suffered with the CPAP and i swore i wasnt gonna do it. I then began a weeks long research binge, knowing my body is desperately trying to tell me something- either a nutritional deficiency or a toxic load exists. I read about a guy who got decent results with Lugols Iodine supplementation. But he was the only such story i'd come across, so I didnt have much hope, but being desperate, I bought a bottle of JCrows 2% Lugols Iodine. Upon receiving the bottle, I put ONE drop (approx 2.5mg) in my iced tea. The next morning, i felt fantastic and so did my wife - because I HAD ZERO EPISODES THE ENTIRE NIGHT. I continued doing a drop a night with great results then went up to 4 drops for a few months and back down to 2 drops. My sleep, mood, appearance, sex drive, mental clarity all improved. i lost 20 lbs as well. And because i sleep so well now, i only need 6 hrs, not 8-10hrs. I did have a few episodes in the first months after starting iodine but very few and far between. Fast forward 3 yrs. I havent had an episode in at least 2 yrs, still feel great. Sorry if this is the wrong place for my story. Just thought it would be helpful. Feel free to call me a nutjob.

72 posts
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NiceSilverBison1316 +0 points · over 6 years ago

Sounds great and I am glad that it worked for you, but since I am allergic to iodine, I don't think it would help me. Guess I will have to keep grinding along with my CPAP and oral appliance and hope for better success.

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cdowis +0 points · over 6 years ago

I am just starting to use my CPAP machine. I was having a serious problem throwing off my mask, so I started to investigate. I set it to ramp up, and discovered that I was frequently clearing my throat and coughing. As the pressure gradually increased, at some point, of course it made it impossible to clear the mucus and I was literally drowning.

So, off came the mask.

I realized that the problem was that the humidity setting was too high and causing the mucus to buildup. I lowered the setting and was able to sleep and kept my mask on.

What a relief that it was finally working!

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snuffie3456 +0 points · over 6 years ago

Nice problem solving cdowis! I had a similar experience in my first couple of days. I found that as soon as I put on the mask I would feel like I was suffocating. Something someone said on this site about pressure settings made me decide to try shutting off the ramp mode. This meant that my machine went straight up to 8mm H2O when I turned it on. Voila! Problem solved!

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OptimisticLimeFlamingo6906 +0 points · over 6 years ago

Lol. I did the same thing! I don’t like the ramping up. I couldn’t breath! Turned off the ramp and have never looked back!

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CommunicativeSilverCaribou8303 +0 points · over 6 years ago

I just completed my first week with my CPAP after being diagnosed with moderate sleep apnea. My episodes have gone from 17/hr to 10 to 6 and last night to 2! I am so modest and embarrassed that I haven't let my family see me with the contraption on but I am completely committed as I feel fantastic already. I am hoping to lower my resistant high blood pressure whic my doctor says will definitely happen if I still with this every night. I am shocked at how quickly I am already feeling great!!!! I should have gotten my CPAP 10 years ago!

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snuffie3456 +1 point · over 6 years ago

AWESOME! I wish I could boast the same results. Baby steps, I guess...

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sleeptech +0 points · over 6 years ago Sleep Enthusiast

Thanks for your success story. It's human nature to ignore success and highlight problems (there's a name for it in psychology but I forget what). It's nice to be reminded that for the majority of users CPAP is a successful and useful therapy. Of course, those people rarely come online looking for advice coz they don't need it. Just last night we had 3 patients happily treated with CPAP. They are all fans.

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Felicity63 +1 point · over 6 years ago

I received my diagnosis of OSA this morning. I am also a Type I diabetic on an insulin pump. I suspect, like the old Henry Ford quote, "Whether you think you can, or you think you can't--you're right.” Changing my eating habits was an adjustment, learning to give myself shots was an adjustment, learning to live 24/7 with a small medical device attached to me was an adjustment. But none of it was impossible or hopelessly uncomfortable. The benefits have far outweighed any inconvenience or initial discomfort.

When I have felt lost or without support, I have been persistent in communicating with my endocrinology team. The same, I suspect, with how I will approach this new diagnosis. And if an Auto CPAP device will provide me with relief from my overwhelming fatigue, then I will work until it works.

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snuffie3456 +0 points · over 6 years ago

I LOVE that quote! Thanks for sharing your fabulous attitude.

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Felicity63 +0 points · over 6 years ago

I finally received my AirSense 10 Autoset for Her. I start tonight! I am hopeful to feel better in the morning although I realize it may not be brilliant the first few nights. Lots of instruction manual reading will probably make me very sleepy tonight, lol!

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Fstapleford9 +0 points · over 6 years ago

This is a success story I promise.

I have severe obstructive sleep apnea (mixed in with the occasional central apneas, no kidding). I had the UP3 (look it up, impossible to pronounce) over 16 years ago. They say the benefit only lasts for ten years max, but I was lucky I guess. Mine lasted about 15. For the last year the severity of the apnea was increasing steadily. Last November I had a deviated septum undeviated and a pillar procedure at the same time. That lasted for about six months. From then until THIS WEEK, getting a quality nights sleep was a total crap shoot. Even with a full face CPAP, a chin strap and a nightly sinus clearing ritual, my AHI could be 10, 20 or over even 30. The irony behind all this that I had been out of work for six months so it didn't matter that I couldn't get out of bed until 10AM. So finding work was truly a two-edged sword, how was I going to wake up? Two weeks ago I found work and had to start getting up at 7AM, so I started going to bed at 8PM so I could attempt to get enough sleep. Trouble is when you have a night when your AHI is over 20, it takes 2 good nights sleep for me to recover. I didn't get one good night's sleep in a row so I was ___ out of luck as my stupor snowballed into an ever denser fog. A sleep walking zombie does not make a good impression his first days on the job. I was literally considering eating a bullet when my wife found that some people found success by taping their mouths shut while wearing the mask. I had trouble picturing which of those two options was worse so in the interest of life, I decided to try the tape. Monday night AHI: 1.98 Tuesday night AHI: 2.09 Wednesday night AHI: 0.73. !!!!!!! Thursday night AHI: 1.37 These are numbers I haven't seen, ever! I cannot remember the last time I got so many sleeps in a row! I feel about ten years younger and am actually excited to be working again. Doctors call this remedy 'irresponsible'. Maybe because a roll of hypo-alergenic tape costs .000001% of what ever the next magical treatment is. I'm not saying this will work for everyone but IT WORKS for me. I have a life again.

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wiredgeorge +0 points · over 6 years ago Sleep Enthusiast

I have zero AHI a couple nights per 2 week period. Last 14 day, had zero AHI four times and highest was .6 AHI. I strongly suspect that the software's ability to sense AHI events in not perfect and that if you have an AHI of .73, this means it recorded only one thing it interpreted as an event during the night and this may have been a cough or sneeze of something of the sort I think. A med professional would better speak to this but if you have less than a couple of events registering, I am guessing there may not actually have been any events. Maybe one of our doctors on this board can comment.

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sleeptech +1 point · over 6 years ago Sleep Enthusiast

An AHI of less than 1 simply means less than one event per hour. If your machine only registers 3 events over 8 hours of use this will be an AHI of 0.38. The machines do tend to overestimate AHI, which is one reason a result of 5 or less is good. An AHI of less than is excellent and you should all feel proud if you are getting that kind of result.

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Dopey696 +0 points · over 6 years ago

Hello Athena. I hope your treatment is going good and that you're still seeking out your own success story. As wiredgeorge said, I think success stories aren't as easy to find because when people find success they tend to stop speaking out. The squeaky wheel gets the grease and stops making noise....lol. Anyways, I feel like I'm a success story. Seeing a video of myself sleeping was horrifying. I spent 2/3 of each night not breathing. Each episode would last about 20 seconds, and I had more than 2 episodes per minute. It starts with about six breaths each one more shallow than the last and then I stop breathing for about 20 seconds, then I would start flailing my arms as if I'm fighting someone off of me, and I would gasp for breath, then it would be about time for the next episode. Sometimes I would even wake myself up feeling like I was being smothered. I looked forward to every sleep study I had, that first one in a lab was still the best nights sleep I've ever had, and I'm so greatful to finally have a machine. For me it is a miracle device. I was given the Aircurve 10 ASV machine and use the Resmed Airtouch F20 mask, which was great until I had a blowout and the memory foam tore in half from the high pressure I have been prescribed. It was a super comfortable mask though. My case is unique so I was given on going care. Supposedly my sleep results are analyzed daily by my doctor. But for the most part it really is unfortunate that doctors leave us high and dry after handing us the machines and there isnt much after care, we're given the default mask and no options and finding a mask that works reminds me of the claw vending machine game, such a waste of money. But that just means we need to be that much better at advocating for ourselves and share as much information as we can. I hope you find as much success as I have, good luck.

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snuffie3456 +0 points · over 6 years ago

Wow! I can't believe I am writing this, but I am doing much better recently. I am like Pavlov's dog when I put the mask on. Straight to sleep within a few minutes. I used to have terrible insomnia in the middle of the night, but no more. Now I wake at 3am to pee, put the machine back on, and I am off to dreamland. I wish I could say it doesn't work. I have a real love/hate with my machine (whom I call Sven-much sexier that way). But the truth is that it does work for me. Hauling it on vacations and camping is going to stink, but totally worth it for the good night's sleep.

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ReliableCarmineQuetzal8749 +0 points · about 6 years ago

Just talked to my brother in law who recently started CPAP and it changed his life. I have used mine for three years and won't go a night without it although it didn't solve all my issues but I believe it helps. Never had daytime falling asleep etc

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