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Your Personal CPAP Success Story - Post Here
RE: Your Personal CPAP Success Story - Post Here
Full disclosure, I do not recommend to anyone the path I took in order to control my sleep apnea.

I will try to tell my story with as few words as possible.

I know for a fact I have suffered some sort of sleeping problems for at least 10 to maybe even 15 years. When I was married at 25 years old I was 5'8" 180 muscle bound pounds. I was extremely healthy playing several sports including baseball (semi-pro) and football. Right after marriage though I started gaining weight rapidly. I am now 46 years old and weigh 270 lbs. At about 32 to 35 years old my wife starting noticing that I would snore quite a bit and sometimes would stop breathing. I did not start feeling tired during the day until I was 35 to 37 years old. Just recently it got so bad that I would fall asleep in front of the computer or anytime I would sit down just to watch TV, almost instantly. The morning drive was fine but the afternoon drive I had to keep busy with a drink or eating seeds while fighting my sleep.

The final straw was something that happened at work. My boss had noticed these patterns during the day. At meetings I would fight the tendency to sleep. While driving with others as a passenger the same routine would happen. I thank my boss for setting me on the right course. He is a CPAP user and so is my division boss. We sat down to talk about it and it was the first time I had to admit I had a problem. I was in denial all this time knowing there was a health issue. I just chose to ignore it thinking one day I would lose the weight and go back to normal. My boss told me to get help not for the job but for my personal health.

So I scheduled a regular health exam with my doctor. The first one I have had in maybe 5 years. On the physical exam everything checked out fine except I did have slight high blood pressure. I explained the reason for my appointment and he asked for a sleep study referral. I thought this would be a quick process, not. The next morning I came in for a vampire appointment, they drew blood. A week later I came in for the results. My A1C was at .61 (doctor advised I lose weight), cholesterol normal, thyroid normal, everything else normal.

So now I wait for the referral. One week, nothing, two weeks nothing so I called the sleep lab in my town. They had not received anything yet, but the big shocker, they had no appointments until late October! I had to take matters into my own hands. I could not wait, I was desperate. I contacted a local medical supply company and talked to one of their respiratory experts. They recommended an auto CPAP with the ability to record results. All I had to do is convince my physician that this machine could do the same study, maybe even better, than a sleep lab. Well no luck there, the Dr. would not even consider it.

So I went ahead and bought and auto CPAP out of my own pocket with a mask. This is where I shorten the story Wink, I have used my machine without heating the tube and humidifier for two nights now. The first night my AHI was 2.0, 7.3 hours. My wife noticed that while on my side the mask would leak a little. The second night I changed the nose piece to a medium. Last night my AHI went down to 1.5 with 6.8 hours of sleep. You know how I know this miracle machine is working? I have not fallen asleep while typing this letter.
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RE: Your Personal CPAP Success Story - Post Here
Good Job, get the Sleephead software and learn how to adjust your machine.

Live Long and Prosper


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RE: Your Personal CPAP Success Story - Post Here
I was a CPAP user for 6 years - managed to get off this nightly forced habit by losing 45 lbs in weight! No more snoring, apnea, happy partner, and feeling 30 years younger!! Just do a search for 'Banting' online. Not difficult, and most enjoyable!
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New Member and New Success
Hello all:
I am pretty new to all of this, just formally diagnosed about six weeks ago, and started CPAP about three weeks ago and yes, it took so long to get all diagnosed, approved, and get on treatment.

I was pretty much at my wits end for sure just before I started therapy. MY docs initially suspected sleep apnea in April, and it took until Augst to get where I am today. The first few nights were the challenge, getting used to it all. I did not mind the mask so much, but my numbers were not so good.

So, quick version of a long story. When I was finally diagnosed, and my titration results came back, my doc called with prescription info. I then called my insurance company for the second time to learn more about how to get equipment. On the second call, I was pretty upset when I was told there was no coverage for CPAP..... WHAT??? I find it all interesting they covered the tests, but would not include the equipment. I was really at my worst at this point and was close to out of my mind. The next day, I checked out some local online classifieds, found someone local who was selling an almost new Airsense 10 Elite, and bought it the next day.

I had some immediate good results, well let's just say better than without. I am in the severe range, so AHI of about 12 I figured was a step in the right direction. I immediately started to feel better and got even better in the days ahead. I have had my ups and downs, some good and bad nights, but overall I was better. Still, my numbers were not as good as they should be. I have been reading a lot, and actually a psychologist so I am pretty knowledgeable on sleep, but not so much on the disorders. I do know that the AHI reading on the machine may not be an accurate representation of where I am at, and certainly, there is an adjustment period to it all. I have been reading up and learned that the best treatment option (well perhaps for many) is an auto pap. However, I was on the Elite.

Two nights ago, I had a message from a local DME. They called and advised that my equipment was ready to be picked up. This was a strange message, I had no idea why they would be calling. When I spoke to them, it turns out that they are an approved vendor for my insurance company, and that my machine was sitting on a shelf and waiting for me. Again, WHAT??? It turns out that my insurance does cover the equipment, and at 100%!

Needless to say that I was a bit annoyed with having purchased another machine, but I certainly jumped on the opportunity to get another... and yes, the Auto version of the same machine. I now have a spare too.

So here is the success. I had been on 9 cm, though I did increase to 10 about 8-9 days into my treatment. I did this on my own, my next doc visit is next week. When I met the RT at the DME, she looked at my numbers on my iPhone (you gotta love technology) and suggested that we get a change to the order for a range from 10-15. With my appointment next week scheduled, I thought I would speak to my doc then. However, last night was a bit rough. So, I called my doc today and asked for a change in the order. He phoned it in, the DME made the change, and now I am on 10-15 officially (have to say I was considering making the move on my own). Nonetheless, I took a nap this afternoon, and the number was 4.8. This will be my first night on the auto setting, and it is crazy to say, but I am looking forward to going to sleep tonight.

Okay, long story and small success I know, but I am excited that I am finally close to a very restful night.

BTW, I have been poking around the board for a few weeks, and some of the posts have helped me a lot in learning about this disorder. I am excited to find a place to learn and share, and I am sure you will see me around. I am just learning more about the disorder now, and indeed treatment, but know a lot about sleep, and I am sure I will catch up on the rest. The disorders part has actually become kind of interesting to me, and will be doing my research for sure.

I look forward to connecting and learning from you all.
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BIPAP -> ASV Personal Story
Warning, this is a long post.

While I am still relatively new to CPAP, the information at this forum has allowed me to make a much more rapid journey.

My wife has complained of my snoring and restless legs for a long time. When my blood pressure began to rise, I got more serious about taking my RLS medicine religiously (carbidopa/levodopa) every night. I actually doubled up on the dosage in an attempt to get a better result. Most nights I slept an hour, was up for a bit, and then went down for another hour, and so forth, until the night was over. I typically gave up at 4:00am and went to the office, worked a long day, came home and I would crash after dinner only to repeat the same pattern most nights. Weekends were for catching up on sleep, not much else. Two one week vacations were the same.

My blood pressure continued to rise (170/110), and the doctor more or less insisted on some additional bloodwork, a visit to the sleep lab, a visit to a nutritionist, and regular exercise. He asserted that poor sleep was the root cause of the high blood pressure, inability to lose weight independent of diet, and inability to commit to an exercise regime. An initial diuretic did not bring the blood pressure under control.

So I went to the sleep lab in mid-June, did not take my RLS meds, and exhibited significant restlessness. I could not wait to get out of the sleep lab. Since I was not interrupted by the tech during the night to make this into a split study to try CPAP in the second half, I suspected that there was no significant sleep apnea. In between the lab session and the report, the doctor insisted I begin taking blood pressure medicine.

The sleep study report was reviewed very briefly with me two weeks later, late one Friday afternoon. It showed very poor sleep efficiency with an AHI of 52, driven almost exclusively by hypopneas during brief episodes of sleep. The sleep architecture was completely broken. Although I had read quite a bit beforehand to be prepared for the diagnosis, when I was told that I’d have to return to the sleep lab to be “fitted with a mask,” I read everything I could as fast as I could to catch up.

I was able to return to the sleep lab the following Tuesday for a CPAP titration, and this time took the RLS meds an hour before lights out. The tech told me afterwards that she was unable to bring central apneas under control and that I might have to return for titration via ASV. The study report was prepared very quickly and I was surprised when my doctor prescribed BIPAP, but began treatment immediately with the ResMed AirCurve 10 VAuto machine with settings 14/10 and Respironics Dreamware mask. I took a lot of time to learn how to read the sleep study report, the titration protocol, and to understand where the machine settings came from. I also made an appointment with the clinic’s lead sleep doctor but that would not be for another month.

I tried the Restiffic device for RLS for a month. The doctor was skeptical but read the FDA material and prescribed it anyway. It claims to cure RLS without medication. Unfortunately, this thing did not work for me at all and was subsequently returned within the money-back-guarantee period to the company for a full refund.

Around this time, I discovered apneaboard and SleepyHead and began looking at the data from my SD card although I didn’t understand it very well.

While my awakenings decreased to only one or two a night, I did not feel more rested, my blood pressure was not going down, and I felt that my sleep architecture was still quite disturbed.

I began a major quest to find a device that could tell me more about the phases of my sleep and augment the “AHI” that the MyAir system was telling me. While the Zeo would have been ideal, the company was out of business. The Basis Peak was probably the second best alternative and their device was withdrawn for overheating problems and eventually recalled.

I settled on the ResMed S+ and began using it to monitor my sleep. I then through sheer luck found a German product called the Beurer SE 80 with technology by the Israeli company EarlySense. I had been tipped off by a friend who knew their founder. I was very lucky to purchase one of these from an amazon.co.uk seller because these are not meant to be sold in the USA. I began to try to correlate the MyAir with the S+ and EarlySense readings but was really unable to figure out why my sleep duration would not increase.

It is sad that none of the doctors or other specialists will accept data produced by these consumer devices. And it’s impossible to obtain clinical devices for one’s own use. They only accept the PSG. There is probably no more expensive way to spend a night of your life, except in intensive care. I began to spend a lot more of my own time with the SleeptyHead application and charting the nightly components of my AHI in detail. I even considered getting an oximetry sensor. I especially appreciated the detail available in the waveforms SleepyHead produces from the SD card data.

I took a one month leave from work to focus on my health and to begin a nutrition, exercise and improved sleep treatment program. By framing all of this in a one-month period, we had a good excuse to push the sleep lab, doctors and DME to act quickly if necessary. Could this be done in a month? It was anybody’s guess but the general practitioner agreed to the proposal.

Now with more than a month in BIPAP therapy behind me, I had my appointment with the sleep doctor. He reviewed the two sleep studies and the S+ data with me. My preparation paid off because we were able to speak about the results in a lot of technical detail and in a common language that we both clearly understood. He thought that a third sleep study would either confirm or change the BIPAP settings or confirm that yet another study would be required for titration on ASV.

We grabbed a cancellation to get this third study done quickly. Exercise had caused my back to ache and, despite taking Aleve, it was a rough night. The tech told me that he had a hard time and didn’t know what the doctor would do. The study was again scored quite quickly and reviewed almost as quickly by the sleep doctor (this time). The study was dominated by central apneas, so I was especially surprised to see the doctor increase the pressure to 17/13.

Instead of reducing AHI and the central apneas at this setting, the results worsened. After just three nights, the doctor lowered the pressure to 15/11. Two further nights of bad results followed. The DME produced a report from AirView for the doctor and of course it agrees with SleepyHead. I griped to the doctor that things weren’t getting better so he ordered the fourth sleep study for titration on ASV. The doctor made his decision based only on how I said I felt, not on any of the data reported from the BIPAP machine. I set my BIPAP machine back to 14/10. Interestingly my results got better.

The titration on ASV felt completely magical. The study was again scored very quickly. The doctor said that results were not ideal because there were still a lot of PLMs and quite a few hypopneas resulting in an AHI of 16.1, but the sleep efficiency was much higher at 78.4%, so a script was written for ASV with Min EPAP 5.0 Max IPAP 30.0 PS 0.0-15.0. The DME wanted me to take a Respironics System One ASV, but I was firm about the ResMed and had to actually threaten switching to another DME for them to dispense the AirCurve 10 ASV to me.

I have used the new machine only five nights. Sleep periods have varied during my acclimation but the AHI is always 0.0. SleepyHead provides great insight. I can clearly see the ASV algorithm doing its work through the night and preventing the onset of any kind of apnea. I can see the apneas trying to develop and the ASV increasing the mask pressure to defeat them.

My blood pressure is now consistently 130/80 or better. I am starting to feel better rested. The S+ and the Beurer (Early Sense) show increased REM sleep periods both in number and duration. This REM rebound first occurred in the lab on ASV titration and has continued on ASV the past five nights. While I am still anxious to see the data from the SD card in the morning, I am very confident in the ASV machine. I return to work tomorrow.

ASV is not for everybody but it is right for me. Increased pressure appears to increase the central apnea component of *my* AHI. The ASV maintains a low pressure but spikes up to higher pressure when needed to defeat the onset of an apnea event. The ASV is a very expensive machine but I am unable to put a price on quality of life and for that reason it’s worth it for me. I’m glad that the insurance contributes. I think it is as important to study the data from SleepyHead and my other monitoring systems as to continue reading professional literature and user stories.

As for the PLMs, the sleep doctor wants to get the apnea under control before changing my prescription. I will give that another few days and then hit him up for a change.

When I look back on all of this my takeaways are: (1) stick to your prescribed therapy, (2) learn how to interpret your own data, (3) squeak when you sense something is wrong, (4) don’t be afraid to push for a change when you don’t get improvement, (5) research equipment very thoroughly. The biggest takeaway is learning as much about your condition as possible. My opinion is that the field is too segmented between the sleep lab techs, the general practitioners, the sleep doctors and the DMEs. As patients we need to pull the big picture together because none of the specialists will do it for us.

Looking forward to hear from you all.
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RE: Your Personal CPAP Success Story - Post Here
G'day rwelliot, welcome to Apnea Board.

Congratulations on working this out and getting a therapy that works for you. You did your homework and stuck to your guns.

I suspect there is a lot more central apnea around than the profession generally recognises. They always speak of obstructive sleep apnea as if that's the only kind and it's only after a patient has been struggling for months or years that it suddenly dawns on them that there is a different syndrome at work. If they had been alert to this fact you might have got your ASV without the need for four sleep studies.

Good luck with your ongoing therapy, and please keep us informed of your progress.
Apnea Board Moderator


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RE: Your Personal CPAP Success Story - Post Here
Hello everyone, I’m new to CPAP and forums and I’m so glad that I found this one. I have been reading many, many posts on it.
Here is my story; I sincerely hope it can help others, so they do not do the same error I did Sad

Sorry, it is a lllllong one!

Around 4-5 years ago, I was send to a specialist in order to find out what was wrong with me. I was always tiered, in pain, gaining weight, despite good eating habits, not sleeping well, etc. etc. He asks for a lot of blood test, everything was OK. Then, he asked for a sleep study. Here in Quebec, it takes quite some time before we get to it. Therefore, when they call, over a year or so later, I thought, that I was sleeping better. I had at that time less pain…, so, for that reason, I gave my place to someone who really was in need of it… Gee, was I wrong! Today I know that I was the ONE who needed it!

I have lot of aches and pains, that, for many years now. Pains, I always refer to an injury that occurred many years ago, so sleep is not easy some times. For me, it was the reason for all that I had. Then, menopause came along with all that goes with it. Yes, I have had fatigue problems, but nothing that I related to sleep apnea. I’m not in any of the risk categories for apnea. No snoring, no choking, no drossiness, no hypertension, no heart problems, so I don’t fit the typical profile of a sleep apnea patient. Yes, I have difficulty getting up in the morning, (sometimes I have the impression that I slept on the clothesline Too-funny. I’m a little overweight 20-25 pound, (gift from menopause!) and also by the fact that, for the last years, I’m a lot less active that I use to be, as of the pain and difficulty to walk. So why sleep apnea? That’s not for me!

Subsequently, other things appear along the way. Lack of interest in things I used to enjoy, moodiness, no enthusiasm, a bit depresses, some memory loss that bothered me. Nights sweats, (not like hot flushes) restless legs, getting up to pee 3-4 even 5 times some nights, pain in my chest that I thought was because of the position I sleep in, I’m a side sleeper. etc. etc. some of them I’ve blamed on menopause, age and the fact that I have back problems and severe osteoarthritis, (waiting for a hip replacement). Therefore, problems I mostly connected with pain. Everything else, except sleep apnea.

Anyway, somehow, deep inside, I knew there was something else wrong with me.Thus a few months ago, I ask my doctor for a sleep study, done at home this time. However, no news for few months, IS supposed to be good news! In fact, now I know that I didn’t want to know it. A friend of mine urges me to call in order to get the result. She was seeing what was going on with me since a while now. The other thing I have to say, is that they had not read my test yet, they forgot to do so… that is why I haven't been notify!

So the next day they call back. What a shock I had! SEVERE APENAS! 33/hr and 42 if on my back, with many central apneas, hypopneas and RERAs, drop of my sat at 81%. My reaction to these results? They must be wrong; it’s not the right test… I cried a lot that day; then pass the shock; I look at it this way. I finely got answers to why I’m feeling so bad, answers that explained many, many symptoms and problems going on for so long. Therefore… either I’m accepting it or I don’t. I decided that I’m going for it Wink So here we go!

At that time, I was not aware of all I know today regarding the affect sleep apnea have on our health. I also realize now, that I was in total denial. I realize now that for so long I was resisting being tested, because I was too afraid to be diagnosing to sleep apnea. I was also scared to wear a mask, that the machine would make too much noise. I SO, SO regret it! All of these years going on feeling bad, what a waste of time and good life ;( I certainly would have avoided many problems encountered in recent years. Thus, if you or someone you know suspect to have this problem PLEASE don’t be as stupid and stubborn as I was. Hammer

So, in the last month, I began reading everything I could to get information regarding sleep apnea. Reviews of all kind for different machine, mask etc.,in order to be able to understand everything about it. I even told the respiratory therapist how to set the auto start on…! She was setting it to 20 minutes, I sometimes take over an hour or two to fall asleep!

I began the treatment last week. I opted for the ResMed AirSense 10 for her, here, the humidifier and the ClimateLineAir hose are included, and the DreamWear mask, but I change it yesterday for the AirFit P10 for her. The DreamWear is a great one but I had too much leaks and therefore many events. Last night was; 0.2 !!!

I also hang my hose with an elastic that I hook on the back of the headboard with a Cord Clips from 3M. I run my hose in a loop that I made with the elastic and Voilà! Complete freedom of movement! During the day, I flip it back behind and nothing is showing. When I made the titrage, (3 night) I was always tangled up in the hose, that is not to restful!

I guess that I’m in the lucky ones club, because I put the mask on and kept it all night since I began. I am so grateful for that, and I definitely hope that it will stay that way. Saying that I was so afraid of all of this.

I certainly would prefer not to have sleep apnea, but I am thankful that there is a way to help it, it may not cure everything, but has all know, the body heals itself during sleep, so I may end up by having less pain!Wink
It may not be always as easy as it is now, even if I hope so. However, I intend to stay on the positive side. I’m just starting on this and I don’t find simple to be hock to a machine every night, but there are things and conditions in life that are way, way more difficult than that! I’m looking forward to see great improvement and that I will regain my energy back and be me again!Rolleyes

I’m so glad I’ve found and gathered so much information’s on this forum. I hope I can be of some help to someone else by my story. As for now, I do not see any big improvements like some say they do, nevertheless, one thing is good, I get up only once during the night, that itself is a very good thing!
I’ll get back soon, to tell you how it goes on a longer term, I promise that it won’t be as long as this one! Bigwink

Thank you all for reading me. Moreover, keep the good works going on; it is so helpful to many!

P.S: Please, forgive any mistakes or phrasing error I’m French speaking.
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RE: Your Personal CPAP Success Story - Post Here
Let's face it. Using a CPAP machine can be an annoying addition to your nighttime routine.

However, I just returned from a 5 hour car ride without feeling ANY fatigue. I used to do similar long trips for years to visit my parents, but ALWAYS felt really tired afterwards. To try to combat this. I would have the air up full blast, and I would eat continuously to keep myself from feeling exhausted. This time, I was fully alert for the whole trip. There was no overwhelming need to eat, nor did I need the air below freezing. Wow! I never understood how people could do so much driving in one day without needing a nap or taking a break of some sort. NOW, I know.

Even though I am frustrated that I inherited a physiology that requires a CPAP machine, I really do LOVE the benefit of a deep sleep that allows me to have much more energy the following day. likelikelike

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RE: Your Personal CPAP Success Story - Post Here
We may have inherited the condition, but we are lucky to have the machines available. Our parents, grandparents, and on up the line of ancestry weren't so lucky! They were forced to live miserable sleep-deprived lives and die early of heart disease.

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RE: Your Personal CPAP Success Story - Post Here
I have waited about one year to share my “CPAP Success Story” with Apnea Board and the time is about now.

When I first began using APAP in early October of last year I noticed an immediate change in my life. Although my AHI was about 70 in the sleep study I did, my apnea was not severe enough that I fell asleep in meetings or at stoplights (unlike my previous experience in the 1980's which is a story for another time). I was having to nap a lot though, and had very low energy during the day (thank goodness I am retired and did not have to hold a job)! I also had a lot of acid reflux every night and morning. Right away after beginning therapy the reflux stopped, the napping became minimal, and I had more energy.

Initially I started out using a ResMed P10 pillow mask, with a F&P Simplus FFM as a back up for nasal congestion days. After the initial week or so my AHI was running well below 5, and mostly in the 1 – 3 range, but my leak rate was pretty erratic. I played around with EPR, and pressures for a while, and things were pretty much the same until early February 2016, when my AHI, RERA and leak rated began to trend up to the AHI 5 – 7 range. I was using the P10 essentially full time then, and I was pretty sure that mouth leakage was the major problem, even with trying several different chin straps. I was not mouth breathing, but my lips blowing open ( and no, I could not master the tongue to roof of mouth technique even though I tried diligently – as soon as I fell asleep it relaxed).

This was pretty disappointing but because I still felt OK I kept messing around and switched to the Simplus, presumably taking the mouth out of play. After trying a number of things, such as changing my buckwheat pillow for a softer one because the buckwheat one moved the mask around too much (I am a stomach sleeper), The AHI and RERA did get into a more acceptable range, but the leaks were still problematic (I even wrote a post here some months back saying I had given up on leaks) even after trying a number of Rem zz type solutions.

I will end this story by saying that I have worked my way to pretty much complete satisfaction by rigorously sticking to the following routine:

Wash the FFM every morning in warm water and baby shampoo
Wash my face just before going to bed

Those two simple things have made all the difference. AHI and RERA are now essentially always below 2, and large leaks are below 1%

Being a hosehead is still a PIA, it is much easier sleeping without a gas mask on your face, but we all know that it is not good sleep and that is why we keep at it. I encourage everyone to keep experimenting until they find a routine that works and stick to it.
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