I have a question for you all. Back in September of 2004, I was diagnosed with sleep apnea. I was amazed by the number of people who have it. At work, ( I worked for a very large aerospace engineer firm) people that I never met starting coming up to me, telling me my life was going to start changing: once you go on that cpap, your life will be like night and day.
I don’t want to sound like a downer, but my life never changed. The only thing that has changed are the suffocation and drowning nightmares are gone. Also, the night sweats are also gone. It’s those damn nightmares that keep me using my bipap. I don’t want those to come back.
However, the daytime fatigue is as bad as ever, if not worse. Despite the fact that my wife and I walk with our dogs just about everyday and we eat healthy, I continue to slowly gain weight. Which I know only makes this worse.
Since I continued to fall asleep at work, I had to go on long term disability. Which might sound great, after being home for a few weeks and you cannot drive yourself any where, pretty much sucks.
I started off on the cpap, went back for another sleep study and they put me on a bipap and max out the setting 20/18. Now my doctor has scheduled me with the Mayo Clinic for further sleep studies. I have been read a lot of these type groups to hope to find someone with a similar condition.
Have any of you had this problem where the chronic fatigue has not gone away?
I don’t want to sound like a downer, but my life never changed. The only thing that has changed are the suffocation and drowning nightmares are gone. Also, the night sweats are also gone. It’s those damn nightmares that keep me using my bipap. I don’t want those to come back.
However, the daytime fatigue is as bad as ever, if not worse. Despite the fact that my wife and I walk with our dogs just about everyday and we eat healthy, I continue to slowly gain weight. Which I know only makes this worse.
Since I continued to fall asleep at work, I had to go on long term disability. Which might sound great, after being home for a few weeks and you cannot drive yourself any where, pretty much sucks.
I started off on the cpap, went back for another sleep study and they put me on a bipap and max out the setting 20/18. Now my doctor has scheduled me with the Mayo Clinic for further sleep studies. I have been read a lot of these type groups to hope to find someone with a similar condition.
Have any of you had this problem where the chronic fatigue has not gone away?
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Re: My sleep apnea has not gotten better
Tue, January 22, 2008 - 6:05 PMHey Lee...
Are you also new here? Welcome, nevertheless. :)
My therapy has change my life drastically - but only compared to where I was at. Which is huge. I can function and not fall asleep all the time and drive long distance again. But I am still tired and I know I can't keep up with those who get that elusive 8-9 hours a night.
Did you doctor suggest your apnea was directly tied in with weight? Mine seemed to be - I realized I have had apnea since I was a wee kid but it was not truly disruptive until I put on 60 pounds - and then it got really bad quick. It got to where I feel asleep at work every day for hours and if it were not a video game development company with VERY flexible hours, I would have been fired right away. I was also starting to fall asleep on 20 minute drives and nodding off at red lights. Even tapped a bumper or two because of that.
My condition is nothing close to ideal but I can function. I have accepted even with therapy, the regimen is so uncomfortable and life-changing that I might never be back to my old self unless I drop another 40 pounds. Even then, as I mentioned, I have had apnea since I was 3 or so - just didn't know what it was.
Did your doctor say you had central or obstructive apnea? I know the regimen is similar but if it is central, maybe there are issues I do not know about.
Anyway - we feel for you. All I can say is that the ridding of nightmares and night sweats are at least some progress (even if hardly affecting your overall quality of life related to work and such).
Do you know of there are machines that go higher than 20? That would be interesting to check out. I would presume that if the pressure settings are not enough, then you might not be getting the ideal therapy. Combined with the fact that sleeping witha CPap or BiPap is uncomfortable by nature, I can truly believe that even with therapy you might be feeling more fatigued.
I am hoping there are machines that go above 20.
MC
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Re: My sleep apnea has not gotten better
Tue, January 22, 2008 - 11:33 PMI am learning so much here still. I never knew that nightmares were from apnea until I read it here. One of the anesthesiologists I work with used to hear me describe my vivid dreams and said " You don't dream! You hallucinate in your sleep!" . I have even gotten up when it was really bad and tried to climb out a window to get away from whatever was chasing me. I haven't had a really bad nightmare in quite a while.
Thanks for teaching another thing
Pam
Who is going to wear her CPAP tonight even though she didn't last night
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Re: My sleep apnea has not gotten better
Wed, January 23, 2008 - 8:11 AMHey MC,
I have OSA and yes, I have been told to lose weight; however, my weight is only part of the issue (347 lbs). It is my understanding that my problem has to do more with my build: barreled chest and short neck. I was told that even if I lost all the excess weight that I would still not be a candidate for the surgery that keeps the tongue in place. In all likelihood, I will need to use the bipap the rest of my life. Of course, as I get the weight down, I am sure my setting will be reduced.
All my life I have been athletic, played HS football, weight lifted, cross country biking, scuba driving and mountain climbing; also, I spent some time in the Marines. However, I am a big guy, and no matter have much I had worked out, ever since I was a kid, I have had a pooch of a belly. No six pack for me, but my body frame did hide my few extra pounds. Not any more.
The last sleep study I had, I slept through the night without complications with my current settings. Trust me, I take great appreciation in not having the nightmares and night sweats any more. I believe in the end, they are what caused most of my anxiety attacks. Now that they are gone, the attacks have almost gone away.
While it is frustrating that I cannot get back to my peak of health, it is more frustrating that I find myself not able to do some of the things I loved the most because I am too damn tired. I miss my work, I miss driving and I miss being active. While walking the dogs a few miles everyday is ok, I want my old active lifestyle back.
My doctor put me on Provigil in hopes to rid me of my chronic fatigue. That drug put me into an emotion tail spin. My mood swings were all over the place and I was having anxiety attacks all the freaking time. Do not go on Provigil. Especially, if you have a rapid heart rate or suffer from anxiety. That drug almost killed me and for the first time in my life, I felt like I lost myself and I could not control my impulses. Stay away from Provigil. I cannot say that enough.
When I was first told that I would need to use the machine, I really thought no way am I ever going to be able to get to sleep again. The first 6 weeks I had just the nose mask and I would wake up with terrible dry mouth and air rush out my mouth. Then my doctor order the full face mask and I found that much more comfortable to wear and now I only notice when it leaks air from its sides or the strap cuts into my neck. My wife has never complained about the noise. I am sure the snoring was much worse.
Really, its not the most romantic thing in the world, so it also cuts into the spontaneity of life. Other then that, I can live with it. -
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Re: My sleep apnea has not gotten better
Wed, January 23, 2008 - 10:50 PML:"I was told that even if I lost all the excess weight that I would still not be a candidate for the surgery"
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Same here. :( I feel for you.
L:"Then my doctor order the full face mask and I found that much more comfortable to wear and now I only notice when it leaks air from its sides or the strap cuts into my neck."
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I ended up with a full face mask too. Which do you use? Curious. I am using Resmed right now.
MC
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Re: My sleep apnea has not gotten better
Thu, January 24, 2008 - 8:39 AMSame. Ultra Mirage. I did try another that I really like by them and I was surprised my insurance company paid for it, but the plastics were too thin and broke after a couple weeks. It was really sweet though... it was called Mirage Liberty. It did not have a fore head bridge. It did cover the mount and had two nose plugs. It was nice to be able to scratch your nose. Ah, the smiple things in life. -
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Re: My sleep apnea has not gotten better
Thu, January 24, 2008 - 9:50 PML:"It was nice to be able to scratch your nose."
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I want me one of those.
MC -
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Re: My sleep apnea has not gotten better
Fri, January 25, 2008 - 9:49 AMlol, but actually you don’t. Two things, first, the plastic mold design was poor. It was two thin and that was why it broke. And second, when the straps were not plugged into the mask, the mask’s connection was very sharp. The night the mask broke, I cut my face on that piece of the mask.
I wrote to the company to complain, but I never heard back from them.
The Ultra has been the best mask so far, but I am still looking. Like I said, it was very nice to be able to scratch you nose. :-) -
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Re: My sleep apnea has not gotten better
Fri, January 25, 2008 - 10:16 AMOh, man, you could scratch your nose?!!! That sounds like such a simple thing, but it's so challenging when you're suited up! I think my mask is too big for my face anyhow, but dang - that sure sounds wonderful. I have decided to attempt nasal pillows, so we'll see. I'm afraid that if I sneeze, though, I might shoot the dog.
I think my first mask was a ResMed, and I liked it but the quality was poor. I have a Fisher Pakel (I think is the name) now, and, while the plastic part is very well made, the face gasket is very poor. The interesting thing is that the Resmed and the Fisher are not compatible - so I can't cannabalize parts from one for the other. Gawd. Like we don't have enough problems. -
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Re: My sleep apnea has not gotten better
Thu, February 14, 2008 - 10:13 AMLee, have other causes been ruled out? I have the delightful combination of OSA and Hypothyroidism. Hypothyroidism is when your thyroid stops or decreases producing the hormones it is supposed to. It leads to metabolic slowdown with a whole host of symptoms you might not connect at first, but the primary one is fatigue. It is commonly misdiagnosed (often as depression, as in my case initially) but the test is a simple blood test and the treatment is a replacement hormone pill taken once a day. In my case I was diagnosed with hypothyroidism first, and the treatment seriously reduced my fatigue to where I could stay awake while driving and at work, I also lost some weight as my metobolism recovered. It was only after many months on the hormone replacement that I felt I still wasn't up to par and a sleep study revealed the OSA. I've had no luck adjusting to the masks, but at least life isn't the hell it had become before the hypothyroid diagnosis.
Good luck. -
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This is the maximum depth. Additional responses will not be threaded.
Re: My sleep apnea has not gotten better
Fri, February 15, 2008 - 6:01 PMI have had a battery of tests and I have seen just about every doctor imaginable: a couple of the tests that were done included my thyroid and my adrenal gland.
At some point you begin to doubt yourself and buy into the term slacker or lazy. However, I have an outstanding wife and I have a great pulmonary doctor. They have never given up on me and I am very grateful for that. Between the two of them, they have convinced my insurance company to pay for further studies at the Mayo Clinic in Jacksonville, Fl. I leave this Monday and I will be there for a couple of days.
What sucks about this is that, I have been waiting for a couple of months for this study and less then a week before the appointment, I caught bronchitis from my daughter. I just hope I can shack this before Monday, I don't think they will do the further sleep study when I am sick.
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