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Your Personal CPAP Success Story - Post Here
this isn't a personal success story , Yet ! I started this journey with my doctor after I quit smoking and gained a bunch of weight( which I couldn't afford to gain ) I discussed with my doctor about weight loss and options (I have osteoarthritis and COPD, I'm 42) . After discussing this my doctor asked my wife if I had problems sleeping and/or breathing she replied that she routinely had to nudge me to get me to breathe after a min or more . So a sleep study was booked .After the study the technician said it normally takes 6-8 weeks to see the doctor. I was contacted and had an appt within 3 days lol Lucky Me! Not so much lol First thing my doctor said to me was "how are you still up and walking around ?" He diagnosed me with severe sleep apnea and I received a diagnostic machine from proresp . I used that machine for 2 months while waiting for data . After awhile I kept throwing the mask off at night , due to breathing issues . The RT then requested a bipap and that's what I have been using ever since . Just received my ADP(Canadian reimbursement)finally and pick up my RESMed s9 vpap Auto on Friday whoohoo Sorry for being so long winded but hoping this helps others to let them know that they are not alone in their struggles .Thanks
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(05-21-2012, 12:36 PM)mjbearit Wrote: This is a strange story and I'm not sure it goes under success as much as maybe a cautionary tale. So I just found this site, so if I say the wrong thing, feel free to smack me! I was DX with Sleep Apnea back in 2003. I have had it as long as I could remember. I took the home sleep study as that is what my HMO offered at that time. After all these years I could not tell you anything about equipment used or anything, but it was a complex set of stuff with chest band, oximeter, machine, some sort of brain wave thingy, I felt like I was in the lab from some Boris Karloff movie! They decided I was to have a machine and sent me off to the supplier. I was issued the machine at that time, it is an older ResMed and without looking at it I have no idea what anymore! I started out with a nasal mask and hated it! I never could get that thing to seal and was constantly awakened by a blast of cold air in my eyeball! I worked with it and worked with it. Finally I qualified for a new mask and went to what was called an Adam Circuit. I'm told they don't make those anymore. Still I fought this thing. It seemed that while I had resolved my leak issues by going to a different style of mask, it just didn't seem to be helping. That was when I discovered that I just needed the right combination of buttons to reset the pressure. From then on, life was good! It was just through trial and error that I found my "happy place". My wife still hated that big ol boat anchor though. She said it made too much noise! Well over time I just got out of the habit of using it and years slipped by before I knew it. Along with the time, my health has been taking a beating, and then recently, within the past month or so, I have been going through the same issues of exhaustion, falling asleep while typing (it can have interesting results!), and of course the tell take, waking myself up several times a night gasping for air. So I sent an email to my doc to see if I could call the DME folks (I needed the phone number) or if I had to go through him again since it had been so long, and the nurse told me to call them and if they needed a new RX they would say so! To make a long story short, I now have an appointment for tomorrow afternoon to go for a fitting, and maybe I can talk my way into a machine from this century! Smile Bottom line, I never should have quit using the machine. But I am back onboard with the program and I am hoping that getting some good sleep soon will alleviate some of these issues I am having!
Mike
How far things have come in 2 years. I learned a lot from this board about machines and masks and sleep apnea overall. I tried adding a heated humidifier to that old boat anchor (original RemStar Plus), but it was like putting lipstick on a pig! It still was horrific! I then started looking at what vendor #2 had to offer, because since I had not been compliant for a long time, they were not prepared to give me a new machine! Well I found a good deal on my PR System One RemStar DS550 Auto A-Flex. Wow! That's a mouthful! I also got introduced to the new masks and eventually settled on the Swift FX. I've tried a few others, but I keep coming back to the FX. So here I am with 603 days of compliance under my belt and I just can't live without this machine now. When the power goes out, my sleep goes out...the window! I feel so much better since using my machine every night. Granted I still have central apneas that the machine won't fix, but getting the obstructive ones out of the way helps a whole lot! I think that getting into the 21st century helped me tremendously! I just could not live with that old anchor, but my baby now, I just can't live without!

As always, YMMV! You do not have to agree or disagree, I am not a professional so my mental meanderings are simply recollections of things from my own life.

PRS1 - Auto - A-Flex x2 - 12.50 - 20 - Humid x2 - Swift FX
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So pleased for you that you climbed on board again and got modernised but mostly pleased you are feeling the benefits, you really sound on top of the world. Good on you Mike.
Sleep Tight...
Gabby
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(02-25-2014, 01:39 PM)Iceracer Wrote: this isn't a personal success story , Yet ! I started this journey with my doctor after I quit smoking and gained a bunch of weight( which I couldn't afford to gain ) I discussed with my doctor about weight loss and options (I have osteoarthritis and COPD, I'm 42) . After discussing this my doctor asked my wife if I had problems sleeping and/or breathing she replied that she routinely had to nudge me to get me to breathe after a min or more . So a sleep study was booked .After the study the technician said it normally takes 6-8 weeks to see the doctor. I was contacted and had an appt within 3 days lol Lucky Me! Not so much lol First thing my doctor said to me was "how are you still up and walking around ?" He diagnosed me with severe sleep apnea and I received a diagnostic machine from proresp . I used that machine for 2 months while waiting for data . After awhile I kept throwing the mask off at night , due to breathing issues . The RT then requested a bipap and that's what I have been using ever since . Just received my ADP(Canadian reimbursement)finally and pick up my RESMed s9 vpap Auto on Friday whoohoo Sorry for being so long winded but hoping this helps others to let them know that they are not alone in their struggles .Thanks
Thanks Iceracer for sharing your story. I love reading these stories, they give me so much inspiration to continue with my journey.
I wish you the best of luck with the rest of your's.
Sleep Tight...
Gabby
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Thanks Gabby

Picked up my Resmed s9 vpap auto yesterday .it worked
Really well ahi down to 3.00 from an average
Of 49 -60 mask leak was 0.0 !
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(03-01-2014, 04:19 PM)Iceracer Wrote: Thanks Gabby

Picked up my Resmed s9 vpap auto yesterday .it worked
Really well ahi down to 3.00 from an average
Of 49 -60 mask leak was 0.0 !

They are great stats. I would love a nil leak reading, even though I have been told not to fret the leaks.
As for for your AHI, excellent. Are you feeling better? I do hope so.
Keep it up!
Sleep Tight...
Gabby
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I would to say I am feeling better and I think I am to a degree but
On Thursday I was just diagnosed with A.S (Ankylosing spondylitis ) an autoimmune form of arthritis so needless to say
I am a little bit frustrated to say the least however when life gives us lemons .... Right ?
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(03-01-2014, 04:37 PM)Iceracer Wrote: I would to say I am feeling better and I think I am to a degree but
On Thursday I was just diagnosed with A.S (Ankylosing spondylitis ) an autoimmune form of arthritis so needless to say
I am a little bit frustrated to say the least however when life gives us lemons .... Right ?
I'm sorry to hear that Iceracer. All I can say is hang in there and remember, one day at a time...
All the very best to you.
Sleep Tight...
Gabby
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Thx Gabby Thanks
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(02-20-2012, 11:20 PM)SuperSleeper Wrote: 1. How is CPAP therapy making a positive difference in your life? What impact has it made upon your health & happiness?

After a few bumpy spots in the road, I started feeling much more rested in the morning, needed less sleep. Once I learned the ropes, I've never had a problem with CPAP. This was many years ago.

Later on, I lost some weight and didn't need sleep medicine, so I might not have sleep apnea any more, but I now have big trouble breathing through my nose at night, because of nasal congestion. The doctor says there is nothing he can do, can't find anything wrong. So, now I use the CPAP, with nasal pillows, so I can breathe through my nose at night.

I just got an APAP with data recording, so I'll find out if I still have obstructive sleep apnea.

(02-20-2012, 11:20 PM)SuperSleeper Wrote: 2 Have you had any problems with CPAP that you solved with a positive outcome? If so, what did you do to solve the problem?

This little story is for the benefit of those who get discouraged or angry along the way and feel like giving up.

Before I went to the MD, I was pretty sure I had sleep apnea. When waking up for brief periods at night, my wife noticed I would often stop breathing for as long as a minute, possibly more. I had been feeling that sleep was not restful. I did not have daytime sleepiness, but I don't often feel sleepy during the day. I was somewhat depressed and sluggish.

I am a Kaiser subscriber. A staff-model HMO. That means all services are provided by salaried Kaiser doctors, under Kaiser's roof and according to Kaiser's rules. Normally, I am satisfied with Kaiser, and actually prefer it to other plans.

The MD didn't exactly roll his eyes. Without much discussion, he wrote me a referral to the sleep clinic. When I didn't hear anything for a long time, I called. The snippy receptionist said there was a long waiting list and I would just have to wait my turn, like everybody else. There were only so many beds available. I waited another six months, then submitted a formal complaint. HMOs try to make you think they have no staff to receive and process complains, no address for complaints, and so on. They do, but they don't want you to know that.

A couple of months later, I received an appointment in the mail. I had quite a few questions, no way to ask them. The main problem was, I was having very serious, ongoing problems with insomnia, probably not caused by the sleep apnea. More likely the other way around. I was taking benzodiazepine sleeping pills (like Xanax, Tranxene, Restoril, Lunesta, Ambien, Halcion, and so on). I can't remember which one I was taking at the time. Probably Tranxene. I found out much later that benzodiazepine sleeping pills often cause obstructive sleep apnea, or make it worse, because they are muscle relaxers.

I was told not to take any medication the night of the sleep study. I knew that I would not sleep if I didn't take my meds. How can they do a sleep study if I'm not asleep? I didn't know what to do. When I got there, there were no doctors around, only a nurse or technician in a permanently bad mood. When I asked her about taking my meds to sleep, she was rude and impatient. "Just follow the rules!" She came into the room about once an hour, demanding to know why I wasn't asleep yet. I tried to repeat my question. She didn't want to hear it, just stomped out again. I was tired, of course, miserable, but not sleepy, as expected. I snuck my usual dosage of sleepy-medicine in. Around 3 AM I just took the tablets, without water. She saw me on the closed circuit TV. She immediately wanted to know what I had done. I told her the truth. She seemed puzzled, along with her usual irritation. I dozed off. I guess at some point they hooked me up with a CPAP. Maybe I slept through it.

The next morning, I spent perhaps 10 seconds with the MD. I had "mild" sleep apnea. I found out later that by "mild," he meant, "not immediately life-threatening." He gave me a prescription for a CPAP, 7 centimeters. Well, he didn't give it to me. He said he would "Send it in." I didn't even know what that meant. He was on to the next patient.

I found out that my HMO doesn't pay for durable medical equipment, like CPAPs, and required me to get a CPAP from their contracted medical supply company. I went to see them, didn't like them at all. They were in a hurry, didn't want to answer my questions. I found out I would have to pay a hefty monthly fee to rent the CPAP. In a few years, I would have paid for it many times over.

At the time you could buy CPAPs on eBay. I got a used one, cracked it open, found the pressure setting knob -- they were mechanical back then, set it to 7 cm, the prescribed pressure.

Then there were problems with masks. The medical supply company was rude and useless. They kept saying my mask "shouldn't leak." They only offered a small number of models and makes. It doesn't help that I have a beard and mustache (both trimmed and tidy, but hairy).

Back to the internet. I found a dealer who would answer my questions over the phone. Nasal pillows were the happy magic answer to my mask problems. I've tried other masks since then, but never found anything that worked so well, and so comfortably. Also, much easier to sleep on my side.

It took awhile to get used to sleeping with a CPAP. I started wearing it for an hour or two before bed, reading, watching TV. After a few days, I hardly noticed when I had it on.

All these problems solved, I started sleeping very restfully, relieved that my ordeal was over.

Inflamed nasal passages became a problem after awhile. Heated humidifier solved that. I don't know how I got along without it.

At some point my internet dealer told me I would no longer be able to purchase supplies without a prescription. My prescription had been sent directly to Kaiser's medical supply company, so I basically didn't have one.

I went back to Kaiser. I was implacable but not rude. I insisted I had a right to my own copy of my own prescription for future use. I wouldn't leave without one.

I left without one, but returned several times, until they got sick of me. They gave me a copy of my prescription and actually wrote "lifetime prescription" on it. I don't know if that doctor hated me or admired me.

One problem occurred subsequently. Suffocation nightmares every now and then -- terrible panic, dreadful. I gradually realized that sometimes the blankets or sheets would cover the little exhaust hole in the bit of hollow plastic that the nasal pillows plug into. I guess that's a mask. Carbon dioxide builds up in the hose after awhile. I made a little plastic tent out of polymer clay, glued it in place, so that the little hole still vents normally, but the bedclothes can't cover it any more. Problem solved!

My machine is advertised as "whisper-quiet" but it isn't. I tried various gadgets and strategies. Tried to make a soundproof box, it did no good. I worried the constant humming and whining at night might slowly damage my hearing. Then one day -- Brainstorm! I put it under the bed -- there's carpet under the bed. Got a longer hose, put the heated humidifier on the nightstand, made a gadget so it's hard to knock over the humidifier, hung the hose on the wall with string and a thumbtack. NOW it's "whisper-quiet."

I don't take sleeping pills any more. That gradually got better -- a different story. But a clumsy attempt by a highly-quaified ENT to straighten my crooked nasal septum left my nose forever congested -- mostly when I lie down. My mouth gets so dry at night that it's painful and wakes me up -- every half hour. Misery! But my CPAP makes it possible to breathe through my nose at night, so I still use it.

My old CPAP is wearing out. I just ordered a new APAP with data recording. I'll find out if I still have obstructive sleep apnea. I'm kind of curious. Even if I don't, I'm tired of my mouth drying out at night, so I'll probably keep using it in any case.

As Winston Churchill said, during the darkest days of World War II, "Never, ever, ever give up!"


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