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I put off treatment for 10, maybe 15 years. That was a mistake.

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ElvisChrist +1 point · almost 6 years ago Original Poster

Hello everyone... This is my first post here. I just wanted to share my experience so that someone like me, who may be lurking (as I did), doesn't make the mistake I made. I've been aware that I probably have sleep apnea for well over 10 years. An ex-girlfriend made a video of me gasping for breath in my sleep 12 or so years ago. As time went on, I kept getting worse at things I am good at, having memory problems, feeling tired after sleeping for 12 hours, being cranky, depression, brain fog etc. It crept up on me very slowly and I attributed a lot of my physical and mental decline to aging and just accepted it. I'm a professional musician, and in that capacity, I could really notice the decline: I had a hard time learning new material, being creative, staying alert (I often don't get home until the wee hours) etc. I'm also fairly certain that, due to my crappy attitude and lack of patience, I've ruined many potential relationships that could have furthered my career. Turning down many opportunities because I knew I simply wouldn't have the energy for them or would be too tired to do a good job certainly hasn't helped either. I actually practiced my instrument (guitar) more than I ever had, but seemed to get worse. It made me begin to hate the only think I am good at. Anyhow...I kept feeling worse and worse and I finally got a sleep study done a little over a month ago, and it confirmed severe sleep apnea: I was experiencing 41 events (AHI) per hour, and my oxygen was as low as 70%. I've been on my machine since 4/13 and am feeling better every day. It's a noticable, remarkable improvement (fortunately, I've had no issues with adjusting to my equipment) and I look forward to regaining my full capacity; I think I've probably forgotten what that was after so long. Circles under my eyes are disappearing. I have dreams and don't get up to take a leak 5 times a night. I actually remember the plot to shows I watched the night before. I don't waste the first 4 hours of every day drinking coffee, waiting to get some kind of surge of energy. As a musician, I am already able to learn things much faster (like I remember being able to do several years ago) and...my singing voice is massively better (a nice side effect I didn't expect). I don't have a feeling of constant dread anymore...I am happy. So, here I sit, 45 years old, thinking I've probably wasted some of the best years of productivity and creativity due to not seeking treatment. I am lucky I am still married. I am lucky I did not suffer a more severe health problem such as stroke or a heart attack. I regret not getting treated sooner, but post this mostly to share my, thus far, very positive experience and also in hopes that someone like me...knew I had it and let it go...will get it treated and not waste their life. It's an insidious health problem...it crept up on me so slowly that I forgot how it was to feel normal.

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sophie +0 points · almost 6 years ago

ElvisChrist--I think this is the most impactful post I have ever read here. This very personal testament to your journey with sleep apnea and your commitment to adhering to treatment is inspiring. I feel somehow your best years of productivity and creativity are yet to come. Please keep us posted on your success and thank you for writing this post. My hope is that it influences others to stick to treatment.

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ElvisChrist +0 points · almost 6 years ago Original Poster

Well, thanks. During my years of lurking, I actually found most of the posts on these boards to be discouraging; most are regarding problems people are having with their equipment. I realize this is necessary and people need the help if they are having problems...just thought I'd add a positive note.

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SleepDent +0 points · almost 6 years ago Sleep Commentator

Really great story and great job telling it. I think that patients should understand that they need to be proactive and take control of their treatment. Don't accept negativity and inadequate counsel from your health care practitioners. Go on line. Educate yourself. Read the forums. Get second and third opinions when necessary. Don't give up until you get treated. Too much is at stake for you and your family. Arthur B. Luisi, Jr.,D.M.D.

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Brncos4Lyfe +0 points · almost 6 years ago

ElvisChrist, awesome post, great to hear of people taking to therapy so well/soon. You and I share very similar paths that led us to seeking help. We are similar in age (I'm 46), and have lived/dealt with the gradual decline in our ability to perform tasks we used to take for granted when we could do them well. I have been a contractor for 23 years now, and when I was younger, I had no problem putting in 12, 15, even the occasional 18 hour days to do what it took to get the job done. I've also been married for 23 years and about 10 or so years ago my wife started telling me she would see me stop breathing and then gasp for air during the night. I was also snoring heavily. Over the years it gradually got worse to the point one of us was sleeping in another room half the time. My ability to handle my normal work load continued to decrease even though I tried to counteract that through the use of high caffeine sodas and energy drinks (Diet Mt. Dew and Monster were my preferences), drinking at least half a dozen a day in some combination. At first it worked and I thought I was good. Gradually the effectiveness decreased until it had no effect at all and I was back in the same boat as before - tired, grumpy, unable to perform at a level I was used to in all aspects of life, and to top it off, I was packing on the pounds. A little over a year ago my wife did some research into OSA and insisted I get checked. Now, I wasn't one to go to any type of doctor for most of my adult life, so when I called our family doc to schedule an appointment to get a referral to the sleep doc, they said since it had been over 5 years (it was actually 7) since my last visit, I was considered a new patient and they weren't taking new patients at the time. Thus, I had to find a new primary doctor, which took some doing, and then had to wait even longer to get into a sleep doctor. Finally got in for a consult April 9, did sleep study (split study) on April 13 ( yes, a Friday lol), and had a follow up with sleep doc set for June 18 to go over the results of the study. Got a call the next Monday that they needed me to come in on Tuesday to go over the test results, so I figured it was bad. Found out my AHI for 2 hours was 105 and 106 with O2 hovering around 60. They ordered a CPAP machine which I got on April 27 and began using with no issues to this point. Even though it's only been a week, I feel like a new person. I can't believe the difference and regret taking so long to get checked. Now I have been telling everyone I talk to about it to get checked. I'm having my wife and kids checked too. It's like I'm becoming a sleep study advocate, but it has made such a difference for me already that I want others to take advantage of the therapy if it will help them, too. ElvisChrist, thanks for sharing your experience. Hopefully it will encourage others to seek treatment if they are undecided or don't know they need it.

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ElvisChrist +0 points · almost 6 years ago Original Poster

Wow...sounds like you had it pretty bad. We are probably a lot alike...I avoid doctors at all costs LOL. I'm looking forward to feeling even better...every day I feel like a new person. Today has been fantastic (and so was the weather!). It's almost like I've found a new miracle drug or something. From what I understand, for people who have had it for a long time such as us, it can take months to fully recover. If that is the case, then I can't even imagine what I will feel like. All I know, is that not feeling constant dread and living like a zombie is excellent.

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Brncos4Lyfe +0 points · almost 6 years ago

I have read the same thing about people who have left it untreated for a long time. If that is the case, like you said, I can't wait to see how I feel in a month or longer because after a week, I am utterly amazed at the results. I told my wife that I would fight someone if they tried to take my machine away!

42 posts
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Turquoiseturtle +0 points · almost 6 years ago

Thanks for something positive. My diagnosis of sleep apnea came as a complete shock. There was no gasping for breath, no snoring, seemed to sleep well, 8 hours with no apparent waking, but my concentration for reading had definitely suffered over the last several years. I attributed this to aging. I also blamed aging for my average speed as a cyclist dropping drastically. 2 and a half years ago, my heart began acting up, and over the next 6 months of testing, the PVCs became more frequent and eventually left me with worrisome chest pains. The Dr. could find no cause for the PVCs, and eventually a sleep study was ordered. A combination of OSA and central apnea in the mild range was the verdict. That's still 40-60 events per night. No REM sleep, no dreaming. (When others talked about dreams, I always commented on my complete lack of dreams.) I started treatment immediately after diagnosis. There is so much negative about those "horrible CPAP machines" that I was not thrilled about the prospect. I am happy to say, my choice of mask etc. was totally workable from day one, and (until this week*) has been used every single night. My AHI average over 30 days hovers around .5, I'm again reading a book a week and I feel better cycling, but sadly speed is not coming back. A.G.E. syndrome, most likely. *spent 3 nights in hospital with hubby, who broke a hip in cycling accident last week, when a car pulled out on us.

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wiredgeorge +0 points · almost 6 years ago Sleep Enthusiast

If you are a member of ANY type of message forum, MOST of the folks come because of problems. I am in the motorcycle business and have a vintage motorcycle forum plus I take part in other forums. People come with problem looking for a solution. Very few come to talk about positive experiences of hang around after the problem is solved; be it a solution coming from the forum or elsewhere. Human nature dictates you will see mostly low volume posters and these posters sharing problems and looking for solutions. My mask leaks. I am tired after starting therapy. This or that hurts as a painful reaction to therapy. Their post count will be very low and you never hear from them afterwards and in that regard, hopefully an apnea forum is of some use. Folks who have higher post counts who have been on this forum for a few years seem to drop off after awhile. Why? I assume they tire of the same questions and complaints and just move on. Do folks turn up with high praises for PAP therapy or dental appliances; most generally not. On an enthusiast forum such as the motorcycle forums I belong to I think there is a better chance of happy motorcyclists hanging around long term. Just an observation as to why there seems to be so much negativity on this forum. Another example of the internet and who takes part in reviews is rvt.com; this is an RV site where you can post a review of specific RVs. Most reviews are negative. Say you are looking for XYZ RV and you see 5 reviews; mostly will be real negative as they are the 5 folks who have had problems and issues with that model. Why don't the folks who enjoy their RV of that model write positive reviews? Human nature I guess.

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