Your Personal CPAP Success Story - Post Here

[eviltim]

Something occurred to me this morning that I thought I'd share. I have written much (yeah, yeah, I know.... too much) about how pleased I am with the therapy, my P10, my new-found ability to drive down the street without falling asleep, my ability to stay asleep at night without zillions of trips to the bathroom, and all that.

New, happy twist. I used to get up at least once and mostly twice in the middle of the night to use the bathroom. It dawns on me now I never do. I think this breathing normally thing is pretty swell!

Please...share your secrets with the rest of the class.

[Visitor]

My problems started roughly eight years ago. I felt increasingly tired, especially in the past four years, until I ended up pushing myself through the days. It was like running uphill with someone stuffing weights in my backpack. I was energetic before that, doing far too much and feeling great. The last four years were the worst, even though in the end I was diagnosed with "mild" apnea. Nose sprays had no real effect. I was pretty sure I needed APAP but only got it prescribed recently and have been on it for about three weeks. Thankfully this has started to turn my life around.

I woke a few times with tons of energy. Most of the time though I woke still feeling tired or "normal". Once I got up, I could tell the difference (eager to do stuff all day).

Some issues: adjusting to a mask, feeling out of breath at the start (during the day), a sore from mask friction, a few bad nights dealing with leaks, serious trouble breathing at min pressure 4 (at that point I could see why people might give up and I really benefitted from help on the forums). I have a good mask (the P10 is working quite well so far). My ahi, after shooting up from 1's and 0's to about 8, decreased to 1 again after the min pressure was increased to 6.5.

My life is turning around fast: I have plenty of energy throughout the day and love doing stuff. I held off posting as I was wary of the few miracle days I had and the lapses. But I feel steadily better. I'm back into sport and loving it. I'm getting through physical work without problems. My capacity to think was never seriously affected fortunately (my day job fully depends on it), but anything physical went downhill and I started to nod off at odd times.

Once I dragged myself out to do my favourite sport and seriously twisted my ankle before I got even started because I was too dazed and didn't notice the rocks on the beach. It took me a year to get the ankle in better shape and it still acts up a little at times. Things could have been far worse. I started doing more desk work outside of my day job, taking up writing as a hobby. I've always loved that, but sports and outdoors activities really were the best parts of my life before apnea started taking all of that. It's incredible to look back at the effect this has had on my life, and the adjustments I've had to make.

I've had a wonderful day sporting with my teenage son recently, teaching him a few tricks and spending every last bit of energy. I did not have a day like it in the past four years. I've kept up the sports and feel great.

I think I got this treatment just in time. I had a piercing pain in my head that became far too regular, always in the same spot. I got the scans done recently. The pain is gone since starting APAP. It could be coincidence and I'll have to wait and see whether the pain returns and what the test results say (the first one came back fine). So far so good.

On the whole, I feel positive, getting loads done, cruising along even better at the job and progressing on all sorts of projects. Before, my life had stagnated and I was confused at what on earth had gone wrong. I initially compensated with more sports, which only ended up nose diving. Not a good place to be.

A minus: I think there still is a significant margin of improvement left. Maybe I need a change in settings. I'll wait it out for a while as things are finally good and I feel increasingly better.

If anyone notices your breathing pauses too long during sleep at times, or you struggle for air, get a sleep test and push for APAP treatment. Seriously.

Life can turn in a flash and I'm grateful for a turn for the better thanks to APAP. I thought I'd share this in case it is of help to others.

[uweti]

Since starting on the CPAP in April this year, these are things that have gone away:

These were with me in spite of being on oxygen at night every night and during the day as needed:

In addition to the shortness of breath of the COPD I had all this stuff -

1. exhaustion
2. muscle cramps, spasms, muscle twitching of feet, legs, toes, calves, ankle joints, upper torso, neck, hands etc
3. feeling like I had dementia - confusion and forgetfulness, loss of focus, mental fogginess
4. muscle weakness
5. Up every night more than once to relieve the bladder
6. feeling dizzy and close to passing out a few times a day
7. very low blood pressure

I was beginning to think I had MS starting.

Last year at various times I had had a Cardiology work up, Rheumatology and Neurology workup, followed some suggestions for pretty much normal findings and still had the symptoms.

In the meantime, I changed Pulmonologists and the new one did 2 sleep studies, put me on the CPAP and after two weeks another overnight oxy. sat. test and now I have oxygen run into the CPAP.

The thing is, the first night on the CPAP was weird and unhandy but the next day I realized I had not got up in the night to walk off cramps or go to the bathroom. By late afternoon that day when I was still going strong the realization hit me that I was not tired. It wasn't something that I had a lightbulb moment over during the day's activities but at the end of that first day there was a miraculous difference in how I felt!

I had some things to work out, others to get used to, to say the least but all of those symptoms I listed were apparently due to lack of oxygen at night although when I asked all those docs if it could be related they all (except for the new pulmonary doc) said "no". They are all gone! The blood pressure was due to something else which has been taken care of.

So all through trying to get masks worked out, fighting dry mouth to the point where my throat stuck together!, and looking like Hannibal Lechter when I lay me down to sleep, and some other things I have yet to adjust to, I can't say strongly enough how this CPAP/oxygen combo has given me my life back!

I am very thankful for my CPAP and I much appreciate having this forum available, thank you for that.

uweti

[Sleepster]

I had some things to work out, others to get used to, to say the least but all of those symptoms I listed were apparently due to lack of oxygen at night although when I asked all those docs if it could be related they all (except for the new pulmonary doc) said "no".

There's more to it than just a lack of oxygen. There's also the sleep deprivation, which can cause all kinds of problems that vary from person to person.

Congratulations on clearing the CPAP hurdle and feeling better.

[uweti]

Thank you Sleepster!

[CynthiaMueller]

I don't really have a success story yet. I've been waiting until I had one to post, but I really need to share my "so far" story!

When I was 17 I told my doctor that it always seemed like I would forget to breathe. I would suddenly notice that I had no air in my lungs. I wasn't short of breath, I'd just failed to inhale. The doctor said that was ridiculous.

In 2007 I had my first sleep study (Cayuga Medical Center Ithaca NY). The sleep doctor threw a couple of reams of paper on the exam room bed and said, "This is a lot of data. You grind your teeth." Really? What about when I stop breathing? No, that's not apnea. Great.

In August 2012 I went for another study (referred to Dr. ElFeky at TX Neurology in Dallas TX). (By this time I had fibromyalgia, chronic severe migraine headaches, degenerative disc and spine disease, insomnia and I was positive I had sleep apnea. Six family members have severe sleep apnea. ) They diagnosed me with OSA. The report showed hypopneas and centrals. Within two to three weeks of receiving the CPAP I knew it wasn't working. I was having AWFUL centrals. Using Sleepyhead it was > 60/hour central (okay, clear airway) (few obstructive). Despite continually calling the doctor, I was unable to get another appointment until October 2013. (TX Neurology in Dallas -they kept wanting a new referral from the other headache doctor in the same group - she kept saying she'd send it but never did.)
Anyhow, once I finally got my appointment, he said, "You have a problem with centrals." Yay! Here I thought I would get fixed! Off to a split study that turned into just polysomnography. Then follow up and another titration and follow up. Here I think that I'm so close to getting the servo machine I need!

December 2013

NO!!!!!
The doctor only ordered a BiPAP. (I have had Lincare for this, and they are absolutely terrible. I've been calling them since 2/2014 and have never received a return phone call.)
NO! They also refused to see me for a full 30 days because they needed that much data. It didn't matter that with the BiPAP I was having over 300 CA events per hour!!!!!
At the follow up appointment, I figured that I would finally get something switched. No. The PA (because as we all know, you only ever see the doctor that one time) said I just have to stick with it. Seriously? She said to come back in six weeks. I said three. I went back in 3 weeks, and she wouldn't change anything. The end with them. Done.

Switch to Baylor (I'd actually made the appointment before my first follow up with TX Neurology, but continued to visit them as I had to wait so long to see a physician at Baylor), which is where I'd have gone in the first place if I'd chosen for myself. I see Dr. Luterman, who says that 84% of my events are central and that I need a servo machine. He looks over my studies and says that I will probably need another study to show insurance that I need it, because it didn't look like the other place did that. I had to wait another month for a study, ten days for a follow up, and then the orders were sent to DME THAT DAY.

DME

I received my first CPAP from Hope Home Medical, and I had no complaints. Now I know that they're supposed to do more than give you the machine and say, "Bye."
This time, each time I called, it was, "We haven't heard yet." The last time I called, she said lots about rental and 10 months and new deductible year and 65%. Also, she hadn't ordered it because she didn't know how much insurance would cover. I understand ALL that. Completely. More than she knows. I've been dealing with insurance DME problems for 20 years (one company tried to sue us - we had them reported for insurance fraud instead). I told her that I just wanted the machine. I don't care about the money. Insurance will pay what it pays. Get me the machine. (I've been out of work, partly due to the complex sleep disordered breathing.) I HAVE to have it, and I cannot get it any other way. She said that I had to call the doctor to find out if I could order a machine compatible with my current equipment because insurance wouldn't buy a new humidifier. Okay.

Friday

I went to the doctor's office to speak to the medical assistant. She gave me the orders so I could go someplace else. She also called the DME and told them what are you doing? This patient needs this, it's been two months, and she's going to go somewhere else. You need to call this patient! (Yeehaa!)

I called insurance now that I had the paperwork and found out that the DME had NEVER sent it to the insurance to get the predetermination completed! How will DME ever be able to know what insurance will cover if they don't submit anything?

I thought I was doing the right thing. I was calling to check to see if they had my machine or if insurance had approved it. I never asked the question, "Did you send it to the insurance company? " All along I pestered the doctors constantly about appointments, referrals, and the fact that the therapy did not work for me. My biggest mistake was waiting a year to change doctors. Part of that was because I kept thinking that I would finally get somewhere with the first doctor. I mean, I went through all the hoops - I didn't want to have to start over with a new doctor.

I've read all the problems everyone else has had. I know that I'm not alone. I have no idea how awesome it would be like to actually sleep. I got a taste of it during the last sleep study, but it definitely wasn't enough! In all of the studies, I never got stage 3/4 sleep.

Thanks for listening! Hopefully I will be able to get things squared away within the next week or so!

Cindy

[Sleepster]

Cindy, welcome to the forum. Stories like this are so sad to hear. It's too bad that in a society as advanced as ours we have issues like this. Here's to hoping you get that servo machine soon.

By the way, there are BiPAPs that treat CSA, but apparently that's not the type of BiPAP they gave you.

[billp]

Wow, I never realized how lucky I was until I read some of these stories.

Three years ago my wife finally chased me to the sleep center after years of putting up with my snoring and her fear as I stopped breathing dozens of times per night.

A sleep study revealed severe OSA with an AHI of 128.5, at one point during the study the technician woke me up to put me on oxygen as my sat had dropped to 66%. A titration study indicated a pressure of 12 cmH2O

I got a ResMed S9 APAP with the Swift LT nasal pillows, and have never had a moment's trouble with the machine, the mask or the therapy. I've literally used it every single night over the last three years and rarely have a night with an AHI of 1.0 or more. In fact this morning was my annual consultation and the average AHI was .5 with the 95th percentile pressure at 11.8 cm H2O.

I sleep through the night, wake up only to roll over occasionally and I'm no longer running out of energy or feeling tired or like I need a nap.

And the wife is over the moon happy!!

It really changed my life.

[Sleepster]

Thanks for sharing your story, Bill. We know that there are lots of people like you who take to CPAP therapy like a duck to water. It's just that they tend to not come here and tell us about it because they don't need our help.

We really are fortunate to be living in an era where this therapy is available to us. Our parents and grandparents didn't have this as an option, they just had to suffer through it and unfortunately they often died before their time because of it.

[Gabby]

Billp what a great story!
You should be the pinup boy for CPAP. You make it all sound so easy. I am so pleased you have had such a smooth journey, you are living proof that it can happen.
Thanks for sharing. Keep up the good work.

Meanwhile to you other good people who are not travelling as well, I say hang in there, take one day at a time and hopefully you will receive the help and equipment you need.
Please try not to lose heart. It will be worth it in the end.
Best of luck to you.