CPAP....What's Your Story?

[Nitro Dan]

Howdy Folks...

I'm new to the boards here, and thought I would share my CPAP experience with you all, hope it doesn't get too boring!!

I'm 47 years young and figure I've had apnea since I was a youngster. I would always get razzed by friends on campouts and sleep overs due to my obnoxious snoring. In my younger years, I was not over weight, in fact, in high school, I used to ride my ten speed on the average 25 miles a day.

I got married in 1980 and it wasn't until after we had our first daughter that things really started to go down hill, as I wasn't as active and had added a "love handle". Slow but sure, I was finding myself a bit more fatigued every day. I own a auto repair business, and towards the end, I was falling asleep on the phone while talking to customers! Talk about embarrasing! It got to the point where it took all I had just to stay awake during the day, I could barely function. The only way to stay awake was to eat, as long as I was eating, I would not fall asleep. I gained roughly 200 pounds during this process, which only exacerbated the condition. In the mornings I would wake up feeling like I had been hit by several busses, I was soaking wet, and every joint and bone hurt so bad, most of the time it took me 1 1/2 hours just to get out of bed.

It got very scary driving to and from work, it was about a 15 mile jog in one direction, and I really had to be careful, my wife was getting to be at loose ends. I started to get premonitions of death by someone holding their hand over my mouth when I tried to sleep. At this point, I went to the doctor and explained my situation.

He sent me to a sleep specialist, they did an EKG to check my heart, and then set me up for a sleep study at the local hospital. I found it there was a 1 1/2 month waiting list. I begged with them to get in sooner because I was in fear of dieing, their response was, "don't drive", I said not driving, but in my sleep. As luck would have it, there was a cancellation and I got in the following week. (Devine intervention maybe?)

The sleep lab consisted of spending 2 nights in the sleep lab, one for observation, and the second for treatment. I got there early and got all wired up, and in no time at all, I was off to sleep. (Or so I thought) Within an hour, the sleep tech was in the room and things were flying. She was hooking me up to the mask and oxygen. (This was the first night) The next thing I knew, it was 8:00 AM in the morning and they were waking me up. What a glorious day!!! NO MORE PAIN!!! I WAS AWAKE!!

The lab techs then informed me that I was the worst case they had ever seen and I had broken a few records in the sleep lab. They estimated that I was waking every 30 seconds gasping for breath, all through the night. The first hour they had to put me on oxygen because my blood level dropped to 10%, something they said was unheard of, they didn't know why I haden't already died some time ago....Now that was scarey!! I was in stage 4 sleep for over 10 hours on the first night as well. Guess I had alot of catching up to do!

Well, that was some 19 years ago, I have burned up 3 CPAP machines in that time, my pressure is at 18cm. I still went camping, and traveling, but never without my trusty CPAP machine.

I left alot of of my story out so none of you would fall asleep, any questions, feel free to ask! So what are your stories?

Dan

[Severeena]

Dan thanking you for sharing your story.

Mine is quite different. I was living in Ohio and the Sleep Doctor there said I had Sleep Apnea, but he thought it was caused by Narcolepsy since I was falling asleep during the daytime.

I asked my former sleep doctor for my chart and when I got it, I dropped my mouth open and just stared at the reports. Every result showed I had sleep apnea not Narcolepsy.

I let my future husband read the chart and he went into a rage.

My new sleep doctor looked at the chart and he could not believe what he was reading and sent me to another sleep clinic. This one came back Sleep Apnea.

[LDuyer]

Dan,

That was an interesting story.
Feel free to add more, for it's not boring at all.

I have the same pressure of 18. I've only been on this since November, and I'm still struggling with the force of that pressure. I may soon have to try something different.

Sounds like you got some great care. And I'm thrilled you were able to do something about it and it has given you back your life. I do feel better, but I still have a ways to go. ("miles to go before I sleep?") That sleep study was definitely memorable, in a not so fun way.


Linda

[NeurosurgeryNP]

Well all, I am here after over 1 1/2 months on CPAP and loving it. I have told my story before, but here's a recap - I had felt bad for as long as I can remember. I always had problems driving any distance over 1/2 hour and I didn't know why. After 9/11, I was sad. Frankly, the whole nation was sad. But, I was sleeping an awful lot. My GP put me on Paxil thinking it was depression, and it did lighten my mood a bit, but never helped with the sleepiness. I was sleeping 10 hours a night and basically needed a 1 hour nap daily. The 6 months preceeding my diagnosis, I was napping 2 1/2 hours almost every day. It was getting out of control. Finally, I had mentioned all of this to my pulmonologist, who I see for my asthma, and he sent me for a sleep study. Well, I was psyched! I finally had a diagnosis of OSA. I was not nuts. Here I am 1 1/2 months on CPAP and doing GREAT! I have never remembered feeling so good in my life. Also, I am off Paxil for 2 weeks now! Piece of cake for me to get off it (tapering it off), despite some peoples' warning of withdrawing from it. I share my story will all who will listen. I think so many of us have been pushed aside, or misdiagnosed. I am proof that CPAP really works, as may of us are.

Please share your story with your family and friends. You can help so many!

[bpoe689]

Everyone has heard my story about how I HAD to have the sleep study before I could be approved for gastric bypass surgery, but after coming to this forum, I have learned why I felt the way I did - naps, sleepiness when driving, etc. I agreed to the sleep study only because I had to to get the approval for my surgery. Little did I know what a difference it would made in my snoring and being more rested.

Now my confession - When I got ready for bed last night, I took one look at the "hoses and mask" and that "wedge" and I said "NOT TONIGHT." i crawled into my bed with my pillow, laid on my stomach and went to sleep. It was wonderful!!! Got up this morning needing more sleep than the 8 hours I had been supposedly getting, but boy did it feel good not to have all that crap in the bed with me. So there! I did it. I guess I need to be put in cpap corner and write "I will always wear my hoses and sleep on my wedge" 500 times.

Has anyone else ever done this??? I am really new to this and yall have seen everything. Is this unusual??? Please help. It is 2:30 am and I don't want to go in that room and face what I need to do.

Becky, a verrrrrryyyyy bad girl

[ddecan]

I went to a neurologist who thought I had narcalepsy because of falling asleep during the day, I hit two different cars on the way home from work in a single day one time falling asleep! I went to have a sleep study, it was to last all night and the next day for narcalepsy, but in the morning they told me it was sleep apnea, and sent me home. Things have changed so much for me with the cpap machine. I am at a mild level, but what a difference it makes! I cannot imagine what some of the people in here have gone through with the higher levels.

[Guest]

Everyone has heard my story about how I HAD to have the sleep study before I could be approved for gastric bypass surgery, but after coming to this forum, I have learned why I felt the way I did - naps, sleepiness when driving, etc. I agreed to the sleep study only because I had to to get the approval for my surgery. Little did I know what a difference it would made in my snoring and being more rested.

Now my confession - When I got ready for bed last night, I took one look at the "hoses and mask" and that "wedge" and I said "NOT TONIGHT." i crawled into my bed with my pillow, laid on my stomach and went to sleep. It was wonderful!!! Got up this morning needing more sleep than the 8 hours I had been supposedly getting, but boy did it feel good not to have all that crap in the bed with me. So there! I did it. I guess I need to be put in cpap corner and write "I will always wear my hoses and sleep on my wedge" 500 times.

Has anyone else ever done this??? I am really new to this and yall have seen everything. Is this unusual??? Please help. It is 2:30 am and I don't want to go in that room and face what I need to do.

Becky, a verrrrrryyyyy bad girl

It's called "carryover". You can actually skip a night of treatment after being on CPAP for a while, and you won't experience apnea. I don't recommend it though. In my case, I am just so used to getting "geared up" every night, it's no big deal anymore, because the benefits far exceed the inconvience!!

[Nitro Dan]

Dan,

That was an interesting story.
Feel free to add more, for it's not boring at all.

I have the same pressure of 18. I've only been on this since November, and I'm still struggling with the force of that pressure. I may soon have to try something different.

Sounds like you got some great care. And I'm thrilled you were able to do something about it and it has given you back your life. I do feel better, but I still have a ways to go. ("miles to go before I sleep?") That sleep study was definitely memorable, in a not so fun way.


Linda

I know what you mean about the pressure Linda, in time, you will adapt to it, just hang in there! I started CPAP before they had humidifiers, (shortly) and it was pure torture waking up with raw sinuses in the morning, and sneezing half the day. The unit I use now is a Remstar Plus with the heated humidifier. It works wonderful. If I'm going camping, I use a Fischer Paykel unit with a heated humidifier. I use the F/P unit because it can be operated with an inverter without damage to the unit. I learned the hard way with my Remstar, that an inverter will blow out the heater of the humidifier....

[There]

I'm another "had to have a sleep study to get approved for Gastric Bypass" case. And I’m long-winded, so bear with me

So I had the study about two years ago, got diagnosed with OSA ("mild" according to the doctor at the hospital's sleep center). Didn't matter, though, because even though I had a BMI of 54 and had been on some sort of diet anywhere from 6 months to a year since I was in Kindergarten and only got bigger, they wouldn't approve the surgery.

So, being nicely dysfunctional, I completely ignored the hospital's recommendation to use a CPAP. The mask they tried me out on for about half an hour the morning after my study was confining, medieval. I was never so glad to get it off my face in my life. I sat in my car and sobbed, the goo from the electrodes still in my hair. I swore I'd lose weight no matter what, convinced that it was all just because I was fat - even though I'd snored for as long as I could remember and came from a family of snorers.

But, life, and lack of sleep, has a way of catching up. At that point, I had at least managed to maintain about a 25 pound weight loss for a year. But, in the last 6-8 months, my exhaustion level went incredibly high and my overeating picked up to compensate. I started oversleeping on workdays - getting up while my husband was still home, pretending like I was getting ready for work - then crawling back to bed and going to work late. He'd think I was working late because I was swamped, usually it was because I was trying to catch up. Thank God for a flexible work environment, or I’d have been exhausted and unemployed, both.

In the last three months or so, I napped nearly every night and spent most of my weekends sleeping, yet I never felt rested. My clothes were all getting too tight. I started getting into the "I'm too fat to [fill in the blank]". I knew it had to stop. Something had to give. I wanted to exercise but could barely force myself into the office, let alone to a gym.

Then I read an article in my shrink's office about night-eating - a huge problem of mine. And it mentioned OSA as a potential trigger. Hmmm...the brain started working but struggled against the fear. I finally got to a point where I could admit to myself that I needed to have a follow-up and get fitted for a mask, but I couldn't stand the idea of going back to the hospital. They'd put my largesse in one of those rolling hospital beds with sides. All the wiring was done in a common room. I had been SO uncomfortable. Talked myself back into "I can fix this myself mode". Then I spent another weekend sleeping myself into exhaustion. My knees were killing me whenever I tried to go up the stairs - one got so bad I had to stop using it and limped up the stairs, breathless. It was ridiculous. I'd always prided myself on being fit despite my size, able to keep up with the skinny folk. I was a yoga nut. I did water aerobics in an actual swimsuit. No longer.

So one day while out of town on business, I went to lunch at a mall food court with the girls on my team, and the new girl - 100lbs soaking wet and just as tall as I am - mentioned having recently had throat surgery. More specifically, she'd had a UPPP to treat OSA. Color me shocked. But wait, there’s more! After lunch, with some time to kill, we did some power shopping. Most of us were plus sizes, so we had to hit Lane Bryant. I got roped into buying a copy of "Figure". It's basically a big advertisement for all the Charming Shoppes/Limited plus-size stores with some articles thrown in for credibility. But it comes with a coupon that saved me a bundle on my purchase and more than paid for itself. One night, while bored, I actually looked through “Figure" and was stunned to find an article on OSA. The coincidence was not lost on me. I decided I would have the study, but only if I could find a place that was NOT the local hospital abattoir I'd gone to before.

So I dug around online, which is the answer to most of my problems these days, and not only did I find CPAPtalk, I also found an independent sleep center that uses real beds, private rooms, and gives attention to the emotional needs of their patients instead of treating them like cattle.

I scheduled the appointment with them and got lucky, they had an opening in a week for a consult. Four days after my consult, I was in for my titration study. I'd been reading here and had already determined the mask I wanted to try. In reality, I didn’t like it, and went with something more traditional – more like the horrible mask from two years before. But the sleep center had been so kind, explained so much. I left the place EXCITED about getting my life back.

That was two weeks ago. My life's not quite back yet - it's been rough adjusting to sleeping with the CPAP, but the information I've found on this board has been an invaluable help and support. I think I'm about over the hump now. Changed masks, bought a Snuggle Hose, sorted out a good position for the hose at night, got tons of support from my husband (who made a point of cuddling me close the first night I slept with the CPAP, thus destroying my fear it would freak him out and he'd never touch me again). My boss, to whom I confided most of the story before my titration study - has been wonderful. I've telecommuted since I got the CPAP, and he asked me to just do what I could do and rest as I needed to – I was pulling 60 hr weeks for a while, it wasn’t a problem to do less for a while. I'm starting to feel more alert. Not yawning as much. I could swear the dark circles are starting to fade. So it’s going OK!