We use cookies and other tools to enhance your experience on our website and to analyze our web traffic.
For more information about these cookies and the data collected, please refer to our Privacy Policy.

Is there anyone with an actual success story?

13 posts
Was this reply useful? Learn more...
   
[-]
Athena1965 +2 points · about 7 years ago Original Poster

I was told by my sleep doctor to seek out success stories.

So far the success stories pretty much go like this: after three months of doing this that and the other thing in order to adjust to my CPAP I'm finally getting 2 to 3 hours asleep at night with the mask on. I still have lots of fatigue and I'm hoping it'll go away eventually.

At every turn I've pushed really hard to figure out what the problem is and after year I finally have been adjusted to my CPAP machine, success

After using a 400 different masks getting 35 different kinds of humidifiers 92 ways of dealing with the hoses 450,000 pressure adjustments I finally made it work after two years, hooray.

Sorry I don't find any of the success stories. It seems to me this is a racket. DME companies are making a lot of money to sleep centers are making a lot of money. And the patients are left on their own. And if you can't adjust its your fault.

I don't even have my machine yet and I'm ready to give up. Is there any hope?

944 posts
Was this reply useful? Learn more...
   
[-]
wiredgeorge +1 point · about 7 years ago Sleep Enthusiast

I wish more folks showed up just to brag about their success but like me and you, I guess, we came looking for answers. Success generally takes a bit of work, In my case, I am now a 100 percent success due to therapy. I ride a motorcycle and would sometimes nod off for short periods. I use power tools all day long and would sometimes nod off while using power tools and worst, I fell asleep all the time while sitting in front of my pastor while he was preaching and my wife made my ribs sore with her elbow. My blood oxygen level was dropping to low 70s during apnea evens.

I started therapy with ZERO medical support; handed a machine and mask and told to go make it work. I demanded to see my test result and prescription and started looking into how to make things work. It took me longer than it should have but I figured it out and today I get into deep sleep quickly and have very few apnea results. I feel 100 percent more awake during the day. If I don't get the help I pay for, I complain and if that doesn't work, I figure it out myself and this board is a great resource; some other boards have a lot of dangerous amateur medical gurus...

There is one success story and there are lurkers out there who could chime in; many of them.

13 posts
Was this reply useful? Learn more...
   
[-]
Athena1965 -1 point · about 7 years ago Original Poster

Thanks again wired George!

You make my point. Individuals can have a success despite the lack of support in the medical community.

I just chatted with a friend of a friend who actually likes his machine. I asked how long it took him to get used to it. He said he is still not used to it. I asked how long he has had it. A year, he happily told me.

If it is a year and I am not used to, it is a failure. It would only be a succcesss for the DME at that point.

55 posts
Was this reply useful? Learn more...
   
[-]
snuffie3456 +0 points · over 6 years ago

Thanks for your words Wired George! You give me hope. This site has already been so helpful after only 4 nights on CPAP.

1 post
Was this reply useful? Learn more...
   
[-]
PersistentCobaltBlueNewt1334 +1 point · about 7 years ago

I got my APAP machine 7 days ago. I thought I would be going through he** for months trying to get used to the thing.

I wore my nasal mask for a few hours before I went to be the first night just to get used to the feel. I went to sleep that night and never woke up until the alarm went off at 5am the next morning. For the last 7 nights I put my mask, my machine comes on, I go to sleep and then it ramps up, I guess. I never wake up. The pressure never bothers me during the night. I never wake up and find my mask across the room. I don't have any air leaks around my mask and I had .6 events per hour last night, which is high for me.

I feel awake and good during the day. I don't have to take naps in my car during lunch time. I don't feel like I'm not going to make it through the day at 8 o'clock in the morning. I don't come home from work and go right to sleep any more.

10 posts
Was this reply useful? Learn more...
   
[-]
WarmheartedLazyHummingBird +0 points · over 6 years ago

Oh, I want to be just like you when I get my machine! I have been tires,my whole life, did the exercise/healthy diets. So many other tests, treatments and meds that I've tried...but have NEVER not been tired.

I've been a nurse for 35 years, most of it on nights ..because, welll..y'know...that SLEEP thing. Got to where I couldn't even remember how I meant to finish a simple sentence. I can stay in be for 12 hours and sleep 9 or 10 hours (I think) but still wake up exhausted.

But I've cared for patient after patient who religiously use their CPAP. They claim it changed their lives. And then I also care for patients who I can count their respirations from the other end of the hall from their snoring. And now I'm starting to connect the dots and see why those without the machines are more chronically ill. Many had CPAP orders...but 'it's too much trouble.' What's trouble is all the health problems without a CPAP.

29 posts
Was this reply useful? Learn more...
   
[-]
BrightSpringbudSandpiper5105 +0 points · about 7 years ago

There are good news stories. Give it a real go.

I feel that APAP has been successful more or less from day 1 for me. I have probably used the machine nearly every day for 10 years, may have missed less than 7 days in total in all that time. Only time machine doesn't work is if I get a cold, have a severe hangover (which blocks up my nose) and hayfever. I can tell it does work.

I have been using CPAP/APAP for 10 years from early 40's. I never felt tired up until when I had my sleep test, I only went in for testing because my wife said I was stopping breathing at night and my snoring was driving her nuts. One of my brothers had been diagnosed with apnea and it was said it tends to be a genetic thing. The test showed I was at the low end of the severe end of the apnea scale (not moderate). Surprised the hell out of me. I therefore suspect apnea sometimes comes on gradually in a way that you don't realise a decrease in brain function or other symptoms. My brother had been dozing and falling asleep, it was obvious and quite serious. I never fell asleep during the day and I slept well at night (so I thought).

I had noted I slept longer and woke up a bit more tired unless I got some extra hours sleep but I wasn't falling asleep or anything. I put the needing a sleep in on the weekdend down to getting older. I used machine and within 1 to 2 weeks I noticed my brain switched on as soon as I woke up just like it had when I was younger. I used to bounce out of bed an early bird in my teens and twenties. So for me the real symptom was reduced brain function especially in the early morning and the need to go to bed earlier at night.

Other than I am getting older my brain is fully alert when I wake up each day since I used APAP. I can really tell the difference if the machine hadn't worked over night (mask pushed off face, nose totally blocked up etc). It definitely solved the snoring.

Have no idea if it helps prevent other health issues but I continue to sleep well, not snore, and consider it a successful strategy. Latest machine is also an improvement in quietness and comfort compared to the one of 10 years ago.

I am a fan, it is worth persisting with.

4 posts
Was this reply useful? Learn more...
   
[-]
reddeb -1 point · about 7 years ago

Hi Athena1965, I have actually gotten great results so far and I have almost 3 months under my belt. I didn't start noticing my daily energy until about 2 months in. I use to take naps every day and still nod off in the recliner throughout the day. I now don't sleep during the day at all. When I was diagnosed the doctor said I had severe apnea with 63 events per hour. For an example here are my readings just last night... 0.1 events per hour, and I have been averaging 8 to 9 hours sleep each night!!!!!!!

14 posts
Was this reply useful? Learn more...
   
[-]
ImpartialVioletRhinoceros2234 +0 points · about 7 years ago

I think it is largely a racket. My company told me that 65% of the people who have machines don't use them. I use mine periodically, but have never had much success and find the whole thing very frustrated. I'm very tired a lot of the time and wake up feeling completely unrefreshed. And doctor's don't seem to have any idea what to do. Good luck.

3 posts
Was this reply useful? Learn more...
   
[-]
StraightforwardSilverGuineaFowl6145 +1 point · about 7 years ago

I'm new to this site and am wondering WHO gives us our Reply names???? Anyway to impartial violet Rhino, who thinks Apnea machines are a racket-you have to use your CPAP machine every night and all night to get the benefits!!! You're tired because you aren't breathing and not getting oxygen to your brain. What I get fed up with are horrible medical equipment companies ( which I also have) who don't take the time and effort to fit people with masks that FIT and are comfortable!! I finally got (by mistake) a mask that fit, but it's a small and this stupid company sent a size medium insert!!! The small mask decreased my apnea events from 40 an hour to at most 8-25/hour. You have to get a mask that fits and YOU have to USE your machine every night. It is YOUR responsibility to get used to it or else you will keep on killing your brain cells! Doctors do know what to do if they sent you to get a Sleep Study and prescribed a machine. Now it's your turn to USE it or if not, stop complaining!

944 posts
Was this reply useful? Learn more...
   
[-]
wiredgeorge +0 points · about 7 years ago Sleep Enthusiast

The usernames are miserable, aren't they? Anyway, go to the icon to the left of the search icon at the top of the page and you can then figure out how to sete your own username.

As far as sucess stories, I imagine that 95 percent of the people who are really satisfied with the results of their therapy won't bother seek forums such as this ones; mainly only folks who are new to therapy and looking for answers or support or people with real problems. I have also found that a lot of folks in our society want someone else to take charge of their problems. The DME and professional support surrounding sleep apnea therapy can be a problem for some folks so it is always the best course of action to take control of your own therapy through self education and using the good reason put into each of us to figure out the best course for your own therapy.

2 posts
Was this reply useful? Learn more...
   
[-]
ReliableCeriseSheep1815 +0 points · almost 7 years ago

I had the same situation as SSGF6145 and achieved just enough success with my first full face mask to think I was "cured", or at least achieving optimal results. After dealing with anemia severe enough to require transfusions, and sticking with an ENT who was not a sleep medicine specialist, I had a sleep study 6 years after the first one. A new machine with more readings detected leaks in my new mask but I was so impaired that daily functioning, not to mention following up, was extremely difficult. It took switching to a pulmonologist specializing in sleep medicine and forceful dialogue with my DME to get a refit session for the correct size mask. I really don't know how I managed to function as well as I did and am still recovering. The best advice I can give is to assemble the best team you can and do your best to monitor the situation. I honestly felt like a zombie and my life and relationships suffered. Never want to go back to the way it was before!

4 posts
Was this reply useful? Learn more...
   
[-]
FalconsFan +1 point · about 7 years ago

My success was immediate. Sadly most doctors want money and not really to help you... I went to a pulmonilogst in a Jacksonville Florida who came highly recommended by some friends.

From the very beginning I was just like you, not sleeping much, fatigue, blah blah blah. I found out I was a nose breather so I was able to switch to a much smaller mask. Immediately with the new mask, I've slept all night.

I would suggest trying different masks, look for comfort, be patient, trust your machine.

I never sleep without mine and haven't since I got it. I average 8 hours per night.

1 post
Was this reply useful? Learn more...
   
[-]
PersistentPlumGorilla6891 +0 points · almost 7 years ago

I'm waiting to see what its like to sleep for 8 hours in one night! LOL One thing I know is I use my machine not only every night but during naps. I really cannot go without it. For years I had mild Obstructive SA with a pressure set at 7. A recent updated sleep study revealed the SA had worsened and I now have a new machine and a pressure of 14-20. I had to go through a little tension with my doctor's office and the equipment company to get my order in a timely manner but I'm grateful. I had my old machine calibrated and use it next to my recliner where I often fall asleep watching television after a long day. This way I have no excuse not to use it anytime I am sleeping. I lost one of the loves of my life at age 45 from a massive heart attack at 4am because he refused to comply with his SA.

1 post
Was this reply useful? Learn more...
   
[-]
GoodTurquoiseGaur4005 +1 point · about 7 years ago
1 post
Was this reply useful? Learn more...
   
[-]
AmiableIvoryCheetah9374 +0 points · about 7 years ago

My success was very quick (within 2 weeks).

I was caught sleeping on the job and nearly lost my job. I had never slept on the job until my 28th year of employment. I started sleeping on the job about 6-7 months prior to having my second sleep study (May 2017).

I knew I had Apnea (I was diagnosed after my first sleep study back in 2010), but I'm very claustrophobic and could not find a mask that would work. So, I had refused any treatment for my Apnea for nearly 7 years.

I seemed fine until 2016, when I noticed that I was extremely tired all the time. It was difficult staying awake simply driving home from work. I knew I was bad, but I did not know how bad until I had been on the Bipap treatment for a few weeks. After a few weeks of treatment, I realized that I had been in a zombie like state. Before my treatment, math puzzles that I used to be able to complete in minutes were now very challenging. Some of the math puzzles I could not even complete. I was falling asleep while talking to family members, while watching movies, while reading books, while working on the computer - I had never had these issues one day in my life.

A few weeks after treatment, it was the difference between night and day. I was instantly energized. I felt like I had 20 years earlier. It was an instant game changer for me.

I was lucky that the DreamWear mask existed. I was able to get past my claustrophobia.

Every night is not perfect, but I wear my mask at least 7 hours every night. I now find it nearly impossible to go to sleep without my mask.

149 posts
Was this reply useful? Learn more...
   
[-]
Sherry +0 points · over 6 years ago Sleep Commentator

DreamWear Mask is a game changer! I love it!

1 post
Was this reply useful? Learn more...
   
[-]
DecisiveSpringbudMantis1902 +0 points · about 7 years ago

I would like nothing more than to share my success story. Truth is, my story will likely end in tragedy. In the end we are nothing more than a mere statistic.

We may have crossed paths over the years.

Nonetheless I used to be there for you, your loved ones, friends and neighbors. Through countless nights, weekends, holidays, rainy days and horrific days, I absorbed a part of your darkness moments. Provided compassionate care and treated you with dignity and respect. If there was a tool in my bag of tricks to alleviate your suffering, it was used with skill and precision in the endeavor to effect a positive outcome. I chose this profession for the purpose of serving others. Its was never about the shitty pay, marginal benefits, insane hours or arduous working conditions. It was just the right thing to do.

One day I woke up exhausted, my spirit broken and in need of repair. Despite my best intentions, the exhaustion became worse and worse. The sum of twelve hours of sleep or 2 hours of sleep was equal in its affect on my overall well being, not enough.

Determined to eat chicken soup until my soul was fixed, I continued to compensate for the exhaustion with changes in my diet, praying to Jesus, giving up caffeine and alcohol, working more, working harder, energy drinks and micro naps. My world continued to unravel. I lost my job, health insurance, experienced homelessness, found a leaking boat to live in, failed at all attempts to self medicate, became sober, realized that was a good start but not the answer, struggled to live from day to day ever since. I returned to college part time and quickly realized something was wrong with my brain. I would spend 2 hours studying a topic, only to forget important details the following day. So I studied more. And kept forgetting vital information. So I studied more, and more, and more. Despite this, I still continued to experience some sort of cognitive defect which was atypical as I have always achieved high marks in school. Then I experienced a first ever seizure. Today I forgot my PIN number that I have used for years.

Eventually I learned about obstructive sleep apnea and its correlation with other maladies. This was quite alarming as my symptoms were multifaceted and severe. I began to seek medical attention, however without insurance the hospital referrals were useless pieces of paper and only used to absolve the guilt and legal responsibility of the Emergency Room. The very same hospital that claimed my symptoms and undiagnosed sleep apnea were detrimental to my health, life altering and potentially life threatening. I was told that I am at risk of having a stroke or heart attack in my sleep. The doctor told me they would treat me for a heart attack or a stroke after it happens, but unfortunately cannot provide ANY treatment to prevent this from happening. Supposedly my life has value. The ugly truth is that our value is only defined by the quality of our insurance plan or ability to pay out of pocket.

I have lost my purpose and ability to help my community. Lost my faith in our healthcare system. Lost the faith in the community I once served. I have lost hope.

I have been denied and denied again medical coverage.

Our healthcare system is broken and it’s going to require more than I am capable of giving to fix it. What I am experiencing should not be endured by any of our countrymen or women. We take care of our military veterans, we take care of people thousands of miles away, we take care of people who are in our country illegally, we take care of our enemies, however we do little more than offer lip service to our first responders and public safety professionals.

26 posts
Was this reply useful? Learn more...
   
[-]
OptimisticLimeFlamingo6906 +0 points · over 6 years ago

Wow, I hope you’re doing ok. I think if you look hard, you maybe able to find a used machine from someone. Why they’re so strict stating you need a prescription for a machine and masks, etc. is beyond me. I ran into an issue when my machine stopped working when I was in CA a year ago. My Dr, in MN, was on vacation and I can’t sleep without a machine. I found a new machine online for $500 (really cheap but new machine was coming out so this machine was discounted). After spending 2 days on the phone and running around CA trying to get help, I finally was able to get a new machine but I paid for it. Anyways, I just got a new machine and gave my old machine to my brother, who also does not have insurance but snored terribly (enough to wake up,the whole neighborhood!). Also, CPAP supply stores will sell their machines at a discount for ones that were used and returned (totally sterilized). Watch Craig’s list or places like that. Just a suggestion. Of course, you’ll need a prescription to even buy the masks, etc but the prescription is good for years. Good luck!

4 posts
Was this reply useful? Learn more...
   
[-]
ModestSpringGreenWallaby5677 +0 points · over 6 years ago

A tip for everyone of us who uses CPAP. Get your Dr. to write you a prescription for a machine (know your setting), and a mask. Keep it in your car, along with the registration. Carry it with you when you travel. (The prescription shouldn't "stale-date." That way, if you are traveling and need a machine or a mask (masks break at the worst possible time), you can get one.

Also, if your mask breaks, go to a sporting goods store and buy a sweat-band. The elastic band will hold your mask in place. It's not as good as new mask, but MUCH better than nothing. Just be careful, and make sure you don't cover up the exhaust port on the mask.

6 posts
Was this reply useful? Learn more...
   
[-]
N4NW +0 points · about 7 years ago

Not really, the CPAP seems to work fine, I cannot find a mask that prevent DRY MOUTH, which awakens me every couple of hours and results in unsatisfactory sleep. I have been fighting this problem for six months since I got the Resmed Airsense 10. Had five different masks with varying results NONE of which has helped with the DRY MOUTH problem.

If DRY MOUTH could be solved then CPAP usage would be perfect. Any solutions?

4 posts
Was this reply useful? Learn more...
   
[-]
GoodNightsSleepLOL +0 points · almost 7 years ago

Have you tried the humidifier with the air sense 10?

2 posts
Was this reply useful? Learn more...
   
[-]
Chasdye +0 points · over 6 years ago

My dental hygienist gave me the solution to dry mouth. I now use Xylimelts tablets which are available over the counter. I place two tablets on each side of my mouth between my cheek and gum just before I start my CPAP. After placing them there I'm not aware of them, and during the night they melt, very slowly. When I awake in the morning they are dissolved and I haven't experienced dry mouth. I hope this helps.

1 post
Was this reply useful? Learn more...
   
[-]
KindKaren0905 +1 point · almost 7 years ago

Hi Athena1965

I have been using my CPAP since March so I am still a new-comer. I have noticed such an improvement and it was immediate. I was diagnosed with severe sleep apnea - about 65 apnea episodes a minute and my oxygen intake was extremely low. I can now drive again (I was falling asleep at the wheel!) and I no longer fall asleep during meetings, etc. I was also waking up almost hourly every night - I now sleep right through almost every night (occasionally my bladder still wakes me if I have had a lot of water to drink too close to bedtime). My blood pressure is back to normal and I am now able to resume donating blood. My fatigue has gone and my memory has sharpened again. I am evidently no longer snoring and I can watch TV without falling asleep. I honestly feel like the machine has changed my life. In fact, I feel like I've got my life back and I am so grateful for this second chance.

I live in Cape Town and have received excellent support, help and service from my provider - Sleepnet. There ARE wonderful providers out there - I don't know where you live. There ARE comfort issues to get accustomed to. However, I believe that through the right service provider it is possible to get the machine and mask that suits one best. I also believe that investing the time needed to grow accustomed to sleeping with a mask is well worth the health benefits.

I wish you loads of luck, Karen

18 posts
Was this reply useful? Learn more...
   
[-]
I8chillywilly +0 points · almost 7 years ago

I agree it's a racket. Thousands of dollars on text, clinics and equipment for a thing that i sleep worse with.

Good luck.

263 posts
bio
Was this reply useful? Learn more...
   
[-]
Ruby +0 points · almost 7 years ago Sleep Commentator

Reading through these posts just breaks my heart. There are too many people that have no support whether from doctors, clinicians or family and friends. In most of the stories it seems like the person is told they have sleep apnea, given a machine and then they are sent on their way to figure out the rest on their own. That is not right. No wonder we feel like it's all a racket!

The fact is that a properly done sleep study does not lie. When oxygen levels drop because of snoring, slowed breathing or stopped breathing, it affects your brain, your heart and many other vital organs. This is not made up--it is serious business that can cause so many health issues far beyond being sleepy or tired all the time. Think of it this way: why do we hear so much more about cancer today than 50 years ago? Because we have better tests and diagnostic tools. People used to die of "wasting diseases" that were probably some form of cancer. And honestly, for most of us don't we feel like we should be tired all the time? Think about our lifestyles and how busy we are. Because of better medical knowledge, we now understand that there could be other causes for our fatigue and sleep apnea is one huge reason.

The big problem here is that there is no after-diagnostic support. Insurance companies won't pay for us to try different masks or machines. We don't know to ask questions because it's all new to us. Masks are not comfortable, don't fit quite right, are ugly to look at and don't seem to work. It takes most of us quite a long time to get used to wearing them. But there are success stories out there. We don't hear about them because those people aren't looking for answers like we are.

If you have been diagnosed with sleep apnea (or any health issue), start educating yourself about your condition. Learn from a reputable source so that you can ask questions and start taking control of your health issues. Build a working relationship with your doctor. Join a good discussion group to ask questions and lend support to others. I am a success story. I have been using my machine faithfully for several years. Has it been easy? NO! Do I like having to use the CPAP machine? NO! But I need it. My body needs it to help stay healthy. Diabetics don't like having to use insulin for shots but they do it because they need it. Same here. Hope all of you who are having a hard time find someone/some way to make it better. Hang in there. Lots of us understand.

944 posts
Was this reply useful? Learn more...
   
[-]
wiredgeorge +0 points · almost 7 years ago Sleep Enthusiast

2nd machine? I wanted to get a 2nd machine for travel and leave it in my travel trailer. Guy was selling a ResMed S9 with BiPap mode on Craigslist and claimed it was his mother's and worked perfectly. Got it home and set it up identically to my base machine (ResMed Aircurve 10) and after about an hour, the S9 starts making a loud noise based on the inhale and exhale setting and is truly annoying. Did some research and learned how to disassemble the little bugger and cleaned it up (supposed to fix the noise issue) based on comments made on other apnea forums from erstwhile gurus. Didn't help and suspect the blower motor is in need of replacement. Was given a $175 estimate for this service by one of the online CPAP repair companies. Why the S9? It cost me $200 and works in BiPap mode at my required pressures (21/25) where the less expensive AirSense 10 only does 20 tops. You can't buy replacement blower motors as a machine owner, near as I can tell. I liked the S9 because of its very small size especially minus the water reservoir since I don't much care about humidity.

3 posts
Was this reply useful? Learn more...
   
[-]
WarmheartedAmberLapwing2837 +1 point · almost 7 years ago

I have been using a cpap for 8 years and would hate to spend a night without it. I get very relaxed when I put it on. It goes every where I go. In fact I have more than one cpap and encourage everyone who might potentially have apena to get tested. I love cpap.

22 posts
Was this reply useful? Learn more...
   
[-]
madjack +0 points · almost 7 years ago

I knew I had apnea 20 yrs ago and just slept in an elevated position...this was finally not working any longer so, I started doing my due diligence and decided I wanted a Resmed AirSense10AutoSet and that was all I was going to settle for. When I went into the sleep clinic, I told them this from the first words I had with them...I also insisted on a home study for both the first and second study...they tried to pass off a cheaper machine...I told them "hello, have you been listening to me...gimme what I want or I will buy online and get what I wanted"...they gave me what I wanted BUT, they tried to set it up as a basic cpap...I told them it didn't matter what settings they used, I knew how to get into the clinicians setup and what settings I would set..I ignored the tech and set it up as I wanted...after 10 days, I am sleeping 8+hours, and my apneas are down fro over 50 to around 3 per hour and am very happy...the bottom line is do your research on what you want in a machine and mask (mine is a resmed p10)...your insurance is probably going to pay a flat price (mine did) and if they can dump a cheaper machine on you, they will and pocket another 2-3hundred bux........... madjack

72 posts
bio
Was this reply useful? Learn more...
   
[-]
NiceSilverBison1316 +0 points · almost 7 years ago

Athena, my CPAP therapy was successful, if you only count good results. My AHI was consistently in the 0 to 2 range with several different masks for over a year. However, I never got the comfortable "high" that people talk about with their CPAP masks. I found it very cumbersome. I finally switched to an oral appliance and have never looked back. I guess it depends on your definition of a success story.

1 post
Was this reply useful? Learn more...
   
[-]
UnderstandingOcherPorcupine7893 +0 points · almost 7 years ago

I've been using CPAP for about 15 years successfully. The first night I used my CPAP, I was so quiet that my wife checked on me several times to make sure I was OK. The first few months were rocky, but once I got the right mask (nasal prongs works for me) and a chin strap, I slept well. I've used my CPAP every night since I got it except once, when I was camping, and a couple of all nighters when I didn't sleep at all. I am so happy I didn't give up in the early going. My life is so much better now than it was before. My memory is better, I'm not grouchy, I don't nap as often, and interestingly, I spend less time in bed. I used to sleep fitfully for 9 hours and get up groggy and tired, and now I average about 7 1/2 hours and wake up without an alarm clock.

Early on I found nasal prong masks worked best for me. Initially I dealt with mouth leaks using a succession of chin straps. More recently (~5 years ago) I shaved off my mustache and have been taping my mouth shut each night with 3M Medipore tape. (I fold over the ends so it is quick to take off before I sneeze, etc.) That has worked better than the chin straps ever did.

My advice to new CPAP users is to get a good APAP machine from the beginning (if you can) and try lots of masks and spend time fiddling with them. I have problems with mouth leak, I think it's a much more common problem than recognized. I broke my nose as a very young child so all the full face masks didn't work for me and the hybrid masks didn't fit well. Eventually I saw a mention of taping your mouth on a forum. It's unorthodox, but it worked for me.

The masks available now are MUCH better than 15 years ago. In the time I've been using CPAP, I've changed pressure from 5 cm of water to averaging 9 on my APAP. It proved so challenging to get my pressure prescription adjusted that I gave up on CPAP and asked for an APAP. The lack of trust my doctors have had for my own experience is disturbing. I've had to learn a lot on my own but it was worth the perseverance!

I know a lot of early users have trouble with having a mask on. I did a lot of snorkeling and scuba diving so this wasn't a problem for me.

I eventually learned from the web how to change my pressures myself and I have my old CPAP adjusted to use as a backup. I've had 3 machines, 2 APAP machines and the original CPAP. Each one has been better than the prior.

For me the big downsides with CPAP is that I have to pack it when I travel, which decreases spontaneity and I used to back pack a lot and multi-day trips are now completely unavailable to me.

27 posts
Was this reply useful? Learn more...
   
[-]
pattyloof +0 points · almost 7 years ago

My sleep dr. told me they have camping machines that are battery powered. Haven't looked it up yet but that might be worth looking into.

14 posts
Was this reply useful? Learn more...
   
[-]
BrightLilacDove4332 +1 point · almost 7 years ago

I think my CPAP story is a good one. I was diagnosed with Sleep Apnea in 2005 after noticing how tired and inept I was the fall of 2004. I was working as the Library/Media guy in a large middle school and noticed that fall that I was really tired, wanting to nap on the way to school in the morning, taking 3 hour naps on Saturday and Sunday. I noticed I could not learn anything new. I had no problem solving abilities or creativity like I usually relied on. I was forgetting how to do parts of my job and I had prided myself on a good memory. Over Christmas break, I noticed also how depressed I was and that made me see my doctor right after Christmas break. When I explained my symptoms, he told me I needed to do a sleep study. It took 2 and 1/2 months to get in. They wired me up to record my brain waves, etc. and I went to sleep. Halfway through the night, they gave me a CPAP machine that they could control and I continued sleeping. Afterwards, they had a machine calibrated for my needs. They told me the reason I could not learn anything new was that I had no deep sleep and long term memories are only formed in deep sleep. My depression was because I could not dream and the mind usually goes through 3 dream cycles a night and without that, you are depressed.

It took me 3 nights to get used to wearing the mask, but I was determined. I told myself: "Others have done this, you can, too! It's just a case of getting used to the feel." After that I would wake up with a smile on my face because it felt so good to be rested. All my abilities slowly came back, but I had already tendered my resignation to retire and didn't change that. I had not wanted to become an embarrassment to the school.

I have used my machine all night every night ever since, except for 1 trip to the Boundary Waters where there is no electricity. I never returned because of that.

My new machine from February, 2015, records my sleep each night and sends in a report that I access later in the day. I have logged all the results and have ranked the scores and the number of sleep interruptions per night (AHI). The highest score you can get is 100. My most frequent score is 100, the next most frequent score is 99, then 98. You have to get at least 7 hours of sleep a night to get 70 points. It also keeps track of mask leakage. No leakage is 20 points. Any sleep interruptions under 5 / hour gives you five points. My most frequent AHI score is .2, followed by .5. If you only take the mask off once, you get 5 points. I have a large bladder and don't need to get up in the night, so I usually get 5 points. From an apnea point of view, that is what I think success looks like.

The mask leakage measure is a barometer for me telling me when to adjust the fit or replace the nose piece.

I know I am lucky compared to many because I could adjust so easily. I am a side sleeper and position the hose so it goes up the pillow and then over to the machine. I can turn from side to side and not have a hose problem. When it's time for sleep, I put my mask on, pull the covers over my head and fall asleep within a minute or so. That way, my wife can continue reading if she wants to. I'm in the dark and have all the air I need through my mask. This machine is very quiet and neither of us can hear it operating.

I do not understand the difficulties others have since I experienced none myself. My supplier has good advice if I have a machine problem, like hose leakage or something, so I can turn to them if something isn't working right.

What no one explained back in 2005 was the connection between sleep apnea and artery clogging. When you stop breathing, your heart starts going faster trying to get oxygen to the brain. Eventually, you get a jolt of adrenaline to make you gasp and start breathing again. Adrenalin irritates your arteries and that is dangerous, so your body lays down cholesterol over the irritation. My arteries were getting irritated by adrenalin and soothed with cholesterol. I got my machine in March of 2005 and in December of 2005 I was having an emergency quadruple by-pass due to my clogged arteries. That problem only surfaced when I asked my doctor in the fall of 2005 if I could try a different blood pressure med than atenolol. He said "Sure!" and put me on two other meds. When I got off Atenolol, I got pains in my right shoulder when my heart rate went up. The doctor tried a stress test and told me my EKG was not normal and that I should see a cardiologist and have an angiogram done. The angiogram found the blockages and they told my wife I should not leave the hospital and they wanted to operate that afternoon. The blockages were where the arteries branched and they could not use stents. I learned afterwards in cardio therapy that Atenolol masks the symptoms of angina--that pain in my right shoulder. I would never have known of my problem if I hadn't changed blood pressure meds.

Once I had that experience and realized how sleep apnea contributed to the problem, I became more determined than ever to use my CPAP machine faithfully any time I wanted to sleep--naps included.

Good luck on your journey!

27 posts
Was this reply useful? Learn more...
   
[-]
pattyloof +0 points · almost 7 years ago

I just started my CPAP. But my sleep study said I had 14 episodes per hour and now I have 2. That seems pretty significant. Plus I'm not snoring. I'm still having trouble with my eyes and mouth being dry but I guess that happens to everyone? That has been pretty rough at times but there are lots of articles online as to what you can try. Like I said, it's only been a week and a half but it seems as if there's progress. I'm sleeping 6-8 hours a night and I feel fairly good. Some days are better than others.

Honestly, I just don't want to end up in the ER with chest pain again. If being on this thing does that, the difficulties are well worth it.

Please be advised that these posts may contain sensitive material or unsolicited medical advice. MyApnea does not endorse the content of these posts. The information provided on this site is not intended nor recommended as a substitute for advice from a health care professional who has evaluated you.