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Your Personal CPAP Success Story - Post Here
RE: Your Personal CPAP Success Story - Post Here
I suppose I should go ahead and post here.

I am one of the lucky ones in that I pretty much took to my CPAP immediately, didn't have any trouble sleeping with it or keeping it on. Had to change masks due to dry mouth issues, but other than that I'm doing very well.

I'm sleeping 8 hours a day or so instead of my previous 10 and getting great quality sleep, feeling energized throughout the day, and killing it in the gym. Unfortunately, I'm still waking up frequently, but I hope it will go away or I can get it treated separately.
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RE: Your Personal CPAP Success Story - Post Here
Greetings. I am a Sleep Apnea sufferer who also has Diabetes. I am very glad to have found this forum. I appreciate and respect both points of view from the Sleep Therapist viewpoint as well as the Educated User viewpoint (which I consider myself). I feel compelled to share my story with this forum. "Disclaimer" - I do not suggest what I did to the novice user of a CPAP device. Having diabetes I have to visit my dentist at least twice a year and when I can afford 3 times a year. At my last visit my Dentist asked me about my Sleep Apnea and if I used a CPAP and how I felt about the treatment. I responded that 'I will not go to bed without using my CPAP machine and it has changed my life'. I've used CPAP therapy since 2006. Then my dentist asked me if I have had my CPAP pressure adjusted. Regretably I am not in the financial position to pay for the services of a sleep therapist. My dentist then told me he had just come from a Dental Seminar in which they spoke at length about Sleep Apnea and the benefits of proper CPAP treatment. He also indicated that I could adjust (with caution and research first) my CPAP pressure on my own. That conversation made me realize that I had no clue how to modify my CPAP pressure settings. I had also realized that my sleep pattern had changed since 2006 and I was waking up more frequently at night and not feeling as refreshed in the morning. Hence, I found the information needed to adjust my CPAP pressure. I adjusted my machine from 10 cm/H2O to 10.5 cm/H20. Last night I did not wake up at all and feel like I did when I first started my CPAP therapy. For me, making the change of only.5 cm/H2O (which is the increments I researched is a good approach in 'adjusting' your pressure in a controlled manner) made a BIG and positive difference for me. Thanks to all on this board for the good objective information. Happy sleeping all.
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RE: Your Personal CPAP Success Story - Post Here
Great country service in rural South Australia.

Six months ago, I was diagnosed with a combination of obstructive and central apneas.
The Clare Chemmart Pharmacy rented me a ResMed CPAP machine for a month. Despite almost daily follow up calls, there was little improvement - in fact, the number of centrals increased.
One month stretched into two, three... After four months (still having paid for only the one month's trial), Chemmart (with agreement from ResMed) suggested a VPAP machine. They encouraged me to try it for a couple of months at no charge. This included two trips away, including one overseas.
The improvement was immediate and dramatic. Since then, I have had one night with an AHI over 1.0 (1.8), with a vast majority of 0.0.

To say that I am *most* impressed with the service I have received does not do justice to their efforts.

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RE: Your Personal CPAP Success Story - Post Here
I think and view of myself as a sucess regarding my CPAP use.

I have been very compliant , CPAP definately helps quality of lifeCool

As compared to last year, I have lots more energy and am able to function much better!

The gracious members of this group have helped make this happen Thanks:

Last 30 days AHI is 1.29, @ 8 cm H20 only 2 percent obstructive
Last 9 months AHI is 1.67 @ 8 cm H20 only 18 percent obstructive

So with almost all my events being Central and not Obstructive, should I consider buying an ASV machine? I still have lots of daytime fatigue......... I want to be "more perfect"

Last year, I found reducing my pressure a little seemed to reduce the number of Central Events, might this be useful again?

I am also having problems with front teeth shifting back and jaw alignment / jaw catching. I have some problems with leaks with Nasal Mask ( much less leaks than Full Face Mask ) even though I have recieved new cushon for Nasal mask and checked / adjusted fit.

Last night I tried Nasal Pillows Res Med medium Swift with good results after a failure with them about 6 months ago.

Thanks again for all the support!

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RE: Your Personal CPAP Success Story - Post Here
Congratulations on your success. With an AHI under 5, I don't believe any reputable doctor would prescribe a ASV machine for you. Your treatment is considered successful. With continued use the number of centrals should drop. I'm not sure where the hypopnea index figures into this, but if they are considered "non obstructive events" then the remaining events are not necessarily centrals. I doubt that dropping your pressure will reduce the number of centrals, that strategy works for newbies while we're adjusting to the therapy. If anything, I might try slowly raising it back up to where it was, but I can't say more without knowing your hypopnea index.

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RE: Your Personal CPAP Success Story - Post Here
I know this thread is about Success Stories and while it seems otherwise, I am excited because I was able to figure out what I believe to be THE biggest health issue that has plagued my son for most of his young life. I am an exhausted mother of a 14yr old boy who has suffered from a very early age with various symptoms. in second grade, he was diagnosed with and treated for ADD because of lack of attention, inability to complete tasks, irritability, as well as other "behavior concerns". He struggled through grade school and made it to middle school. This is when the poor guy could no longer hold it together. Last year, he became so depressed and anxious that I had to admit him to a day treatment program to treat his depression and anxiety. The treatment was medication which has now caused him to gain over about 40 lbs! He was then evaluated and found to have a non-verbal learning disability for which he has an IEP. He missed so many days of school that he failed. He is repeating the 8th grade. The school year has just started and we seem to be heading down the exact same path as last year. My response to this was "oh no...neither of us can survive another year like last year!" In my struggle to find some hope and relief for my son, I began to put the whole picture together. His teachers continue to complain about his lack of energy,falling asleep during tasks, inability to concentrate, very low motivation...I began to notice very low self esteem, frustration with himself and others, anger.....the list continues. He has began to lie and look for reasons not to go to school. All the reasons are always physical... None of the multiple medications for depression and anxiety seem to be working.(Other than to cause him to gain weight!) I began to really take notice of severe snoring that seem to have developed and worsen over the last 6 months. Other symptoms include sudden onset of bedwetting, which had stopped years ago! He complained at times of awful nightmares, headache, restless legs, he was very very difficult to wake in the mornings. I began to do some web searches and there was the answer. All the pieces fit. My son has sleep apnea! Last week, when I was at the end of my rope , I called his psychiatrist's office begging for someone to please help my son. I insisted on a sleep study. He had that last night. Within the first 15 minutes, the technicians came to get me. They praised me for putting all the symptoms together and getting him help. At one point, his heart rate reached 115 and his oxygen level went down to 82%. His brain worked overtime all night just to help him breathing. Watching the print out and listening to the technicians explain that basically my son's brain was struggling every night just to keep his body alive for who knows how long brought me to tears. All this time, he/we were told he has ADD, he has behavioral problems...It makes me very angry and sad that he has struggled to try to be what or how everyone told him/us how he should be and all along he was trying ,literally, just to stay alive. I feel a great relief that his sleep apnea may actually be the root of most if not all of his problems. I also hope now that he will be receiving appropriate treatment for sleep apnea that he may finally have some peace, as well as a good night's sleep.
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RE: Your Personal CPAP Success Story - Post Here
Noahsmom, welcome, I found out what was wrong with me through Dr Goggle as well unfortunately it took 48 years and what the Drs diagnosed as depression, anyway hopefully he will be on his CPAP soon and off the antidepressants. Please keep us updated and ask any questions, you will get more help and support from us than the medical profession. He will need to be on a CPAP for the rest of his life but if he gets a good quality of life it is well worth it, we'll done on your efforts
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RE: Your Personal CPAP Success Story - Post Here
Yes, Welcome Noahsmom and congrats on what (hopefully) will be a turn-around point for Noah. Sometimes it just takes the right things to click to make a connection (whether it be you and the sleep study, Tez and Dr. Google or me and a first aid course (I all but diagnosed my own systemic / near-anaphylaxis allergy).

Here's hoping for good luck in the coming days and months for both you and Noah. Smile
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RE: Your Personal CPAP Success Story - Post Here
(09-06-2013, 02:24 PM)NoahsMom Wrote: Last year, he became so depressed and anxious that I had to admit him to a day treatment program to treat his depression and anxiety.

Hello NoahsMom, welcome to the forum. I'm so glad you took the time to post your message here.

I agree with you that the depression, anxiety, anger, and other behavior issues are caused, or at the very least exacerbated, by the sleep apnea.

I have heard and seen many many stories of the severe anxiety and other mental and behavioral problems caused by sleep apnea. And I have experienced some of them myself.

As you go through the process of getting Noah adapted to CPAP therapy keep in mind that he may take to it like a duck to water, or it may be a slow and painful process, or anything in between. Progress will happen, and things will get better.

You may have to change psychiatrists to get him off some of those meds. Anti-anxiety meds and antidepressants are sedatives and they tend to mask some of the symptoms of sleep apnea, so keep that in mind as he transitions to life with CPAP therapy.

And one last thing, make sure he gets a good data-capable CPAP machine. This is a good place to start your research.


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My Personal CPAP Success Story
Okay, it's been over 6 months with the cpap now, so it's time for my story (practically a novel!).
It starts about 6 years ago when I started to have horrible sleep problems. My sleep was very fragile and I woke up many many (many!) times during the night until I started to be afraid that I wasn't going to be able to function properly enough to keep my job. I was hoping it was sleep apnea as I did a lot of research and this seemed like it was the easiest problem to deal with, with cpaps and all. I was puzzled with the results of various 'sleepiness' quizzes I took online because I wasn't sleepy during the day and I never fell asleep during the day. I was just plain miserable, out of sorts and my brain didn't feel like it was working properly, but I wasn't 'tired' or 'sleepy'.
I decided to have a sleep study so I went to a pulmonologist/sleep doctor and the results of the study were weird. It indicated I had 'mild' OA, but that wasn't my main problem. They diagnosed me with 'atypical sleep architecture' and told me I never got past stage 2 sleep, even with a cpap on and no apnea events. I asked if I had restless legs while I slept, but they said no sign of this. I definitely had restless brain syndrome, but they said there wasn't such a thing. Yeah, sure.
The doctor told me he had no idea what to do for screwed up sleep architecture and prescribed me a cpap and ambian.
Years later I found out that the respiratory company who sold me my cpap totally messed up. First they gave me a machine that they said would change pressures as needed and it would record everything that happened while I slept. I was to sleep with this machine for a week or so and then turn in the chip. I did this, but the respiratory company said their chip reader wasn't working and just to keep using the machine. I noticed that the machine was set at 5 pounds or whatever the measurement is called. I was happy to note that the pressure never went up, because this must mean I had really mild apnea and didn't need more pressure. I used this machine religiously for a year and a half with no improvement whatsoever, but I used it anyway because I hated the thought I might not be breathing at any given time during the night. My doctor told me to just take the ambian, which I hated but it was better than nothing (not much better though with the side effects). I finally quit using the cpap because I decided it wasn't worth the hassle if it didn't improve anything and I figured that a year and a half was a long enough trial.
I'm sure you've already guess it: the machine wasn't a variable pressure one at all. It was a cflex...not an aflex. The pressure never got over 5 because it never got set to the right pressure. I'm a medical professional...I do a lot of reading and research and yet I didn't figure this out at the time!! I just took my doctor and respiratory company's word.
My sleep got a bit better over time without the cpap (I had a 'Pillar' procedure done, this may have helped) but I still slept pretty bad in general. Then finally last February of this year because of increasing issues with short term memory loss and having really weird spiky jaggedy feelings in my brain along with electrical zappity feelings in my face I decided I was either going nuts, having seizures or I was getting some sort of early onset dementia. I have horrible insurance that doesn't encourage you to see that doctor EVER, even if it would save a lot of money in the long run if you did before the symptoms got out of control.
I went to my doctor and told him I thought I had frontotemporal dementia, an uncommon type of dementia, but I had all the symptoms and more! My primary care doctor said, no I don't think you have dementia, I think you have sleep apnea. I said no, I don't, I would have noticed, I have dementia. He said no you don't. I got annoyed at him. But then I generally was feeling annoyed with everything at that point in my life. It's not nice to think you're dying of dementia.
He wrote me a prescription for a sleep study and I told him my insurance wouldn't cover it and I wasn't going to do a sleep study. I asked him to write me a prescription for a cpap so I could buy a cheap one online and he said no, he wasn't a sleep doctor. I said if you don't write me a prescription I'll buy a used cpap on Craigslist and I won't even clean it first. So he wrote me a generic prescription for a 'replacement cpap with all accessories'.
This is when I discovered this board with all the great info on how to adjust your cpap and what machines are best. I read until my eyeballs about fell out and then I started the process of buying a cpap. What a pain! So expensive! So I searched Craigslist after all and bought an older well used apap machine to start for $100. Part of my job at work is decontaminating patient dialysis equipment so I have a very good idea how to decontaminate a cpap machine, which I did.
My first night was a miracle! I love miracles! My dementia went away! My IQ went up 50 points! I discovered that I don't get sleepy or tired when I'm totally sleep deprived. I just feel weird and awful.
The machine I really wanted was a new Resmed S9 autoset, not the old wheezing farting auto-pap I was using, so I kept an eye out for one and was almost ready to shell out the cash to an online store when I found an ad for an S9 Elite on Craigslist. They wanted $400 for a new one with a humidifier. Well, you couldn't beat that. The lady who sold it to me was very nervous meeting a buyer from Craigslist and she made me drive to two different places and finally meet her in a crowded parking lot. Like I was a fat middle aged female cpap using serial killer or something. There was nowhere to plug the thing in to see if it actually worked and I told her I would give her $200 for it as I didn't know if it even worked. After a short but spectacular temper tantrum on her part, she gave in and sold it to me.
My antique auto-pap indicated my average pressure was around 8 so that's where I set the S9 at first and I cranked up the EPR as I figured expiratory pressure relief must be a good thing. I loaded up SleepyHead and the next night I took a look at my breathing. I am fascinating! I had the best time looking over my breathing. It was kind of like I was snooping on someone's most private moments, except they were my own private moments.
Well, my AHI was 2.5 and I discovered that I had a bunch of 'clear airway' events, which I really didn't like the sound of. What was my brain thinking of?? It just stops breathing?? Stupid brain. I had about an equal amount of OA events, but this seemed more reasonable than just plain not breathing for no good reason at all. I eventually raised my pressure to 9.5, but it didn't seem to make a difference but I left it at that.
So, last week it dawned on me that maybe I should do something about the weird hissing noises that my mouth made at night that would wake me up feeling really out of sorts. I read about chin straps until my eyeballs about fell out (again) and ordered one from Amazon. In the mean time I'm wrapping my head in sports wrap and what a difference! My AHI dropped to less than .5 and no more 'clear airway' events, except for one night when the wrap came off and the mask was leaking (and scared me to death because something was flapping all over my face and squealing at me and breathing in my eyes. I recommend not reading the Alien series books when you use a cpap.).
So, my sleep has taken another turn for the better. Not as dramatic as my first night with the cpap, but noticeably better.
My next adventure, when my finances are in better shape is to find a more comfortable mask. I'm using the ComfortGel Blue nose mask (you can read about my bad experience buying this online) and I don't like it a bit, except it mostly works okay. This mask is okay at first, but a few hours into the night it gets really heavy feeling, sweaty and itchy. Also, I'm a side sleeper and it's easy to get the mask dislodged. Nothing like weird farty squealing noises to entertain you at night.
So, overall, I'm happy!
I'll update you all when I get my chin strap.
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