"please keep me updated about oximeters "
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Stuck after 2 years. Use: inconsistent; lack of results: consistent.
[Update: Looking at my calendar I realize it's only been 2, not 3, years on CPAP. Oops.]
Hi, I'm having trouble finding out what to do for my specific situation. I would really value some recommendations for threads on this board or original advice if you have time!
Symptoms: 10 years of steadily increasing lethargy, fatigue, irritability. Snoring.
Diagnosis: OSA, 20X/hr (sleep test),3 2 years ago.
Prescription: ResMed S8 Elite + Respironics pillows @ 5 psi
Change in symptoms: Snoring eliminated by CPAP; no effect on daytime sleepiness whatsoever. In fact, this has continued to increase over time. I now take two meds to stay awake.
Habituation: I have no problem falling or staying asleep with the machine. But I only use it about 40% of the time. I just don't want to bother with a machine that doesn't make me feel any different. It's been one of the deepest disappointments of my life. I wouldn't use it at all if it weren't helping my wife through the elimination of my snoring. She makes me.
Medical consultation: After the first few months I sent my data card into the prescribing doctor, who told me (over the phone) that the data indicated the machine was doing its job and needed no adjustment. About 6 months after that I scheduled an office visit to talk about options. I probably brought the card in again. I was told that if I could stick with the machine for another few solid months, we could then try a daytime narcolepsy study, but that this would require going off my "awake" pill for 2 weeks prior. They'll pry that pill out of my cold, dead hands. I never did it.
Thanks for any direction you may have.
Hi, I'm having trouble finding out what to do for my specific situation. I would really value some recommendations for threads on this board or original advice if you have time!
Symptoms: 10 years of steadily increasing lethargy, fatigue, irritability. Snoring.
Diagnosis: OSA, 20X/hr (sleep test),
Prescription: ResMed S8 Elite + Respironics pillows @ 5 psi
Change in symptoms: Snoring eliminated by CPAP; no effect on daytime sleepiness whatsoever. In fact, this has continued to increase over time. I now take two meds to stay awake.
Habituation: I have no problem falling or staying asleep with the machine. But I only use it about 40% of the time. I just don't want to bother with a machine that doesn't make me feel any different. It's been one of the deepest disappointments of my life. I wouldn't use it at all if it weren't helping my wife through the elimination of my snoring. She makes me.
Medical consultation: After the first few months I sent my data card into the prescribing doctor, who told me (over the phone) that the data indicated the machine was doing its job and needed no adjustment. About 6 months after that I scheduled an office visit to talk about options. I probably brought the card in again. I was told that if I could stick with the machine for another few solid months, we could then try a daytime narcolepsy study, but that this would require going off my "awake" pill for 2 weeks prior. They'll pry that pill out of my cold, dead hands. I never did it.
Thanks for any direction you may have.
Views: 55
Replies to This Discussion
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Permalink Reply by RockRpsgt on
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Apnea can, and will cover up other sleep problems. My advice to you is to find another sleep physician and listen to their advice this time. In the mean time start using your PAP device before you get worse. If not snoring and daytime fatigue are going to be the least of your problems.
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Permalink Reply by Dan Lyons on
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Matthew,
Keep the pills in your cold dead hands as it will make it easier for the medical examiner to determine what you had taken.
Why use the Resmed S8 Elite when those pretty pills make you think they are doing the job.
Part of the reason you aren't achieving the desired effect with CPAP is your intermittent use negates the therapy. A day or 2 here or there isn't going to work. Besides why bother not using it properly? It is so much easier to just swallow the pills.
Your body has a sleep debt to which must be repaid in order for the therapy to provide the necessary results to which you have done all you can do to negate.
For your wife sake, she won't have to hear your snoring after they pry those itty-bitty pills out of your cold dead hands.
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Permalink Reply by Judy on
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CPAP is NOT a cure, it is a therapy. Meaning it MUST be used EVERY time you sleep because every time you sleep w/o it you are undoing any good sleeping w/it did do.
That Resmed S8 Elite w/EPR is one h*ll of a good CPAP!!!! I had one as my first CPAP before I was switched to a bi-level due to COPD.
IF access to the SmartData (advanced/detailed patient menu) has been turned on on your Elite, pressing the Left and Right buttons and holding for 4-5 seconds will bring up the Efficacy Data menu on your LCD screen. From there on it is a simple matter of Left button to Enter, Right button to Exit, Up button to Return to the previous screen and Down button to Proceed to the next screen. You can not accidentally or intentionally change your therapy settings from this menu. The accessable data are: the 95th percentile Pressure and Leak, your AHI and AI, and if I remember correctly, your HI. If not the HI, it is a simple matter to subtract the AI from the AHI to know your HI number.
Far too many sleep doctors and even DME supplier RTs pay no attention to the Leak data. If your Leak rate is too high, for whatever reason, it can distort your data and reduce the efficacy of your therapy. W/the Resmeds it is important for the Mask Selection to be at the proper setting for the mask you are using for the data to be correct. Especially the reported Leak rate.
It is YOUR therapy and YOUR health. It is YOUR responsibility to contact your DME supplier's RRT or your sleep doctor if you are having problems using your CPAP, wearing your mask or ANY problems you may be having with it. And if they don't provide the assistance, advice and support, its YOUR health, its YOUR responsiblity to find a sleep doctor who DOES respond to your problems. However, it is also YOUR RESPONSIBILITY to make an honest effort to use your CPAP. 100% of the time you sleep.
Don't look for excuses, don't place the blame anywhere else but on your own shoulders if CPAP therapy isn't working for you and you haven't put forth the effort to MAKE it work - by finding a new sleep doctor or whatever it takes.
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" I suffered from sudden cardiac death in 2004 from not wearing my CPAP or losing the weight. Now suffering some minor memory loss and testing to see if some form of dementia is setting in due to the damage from hypoxia. I was down and actively coded for over 20 minutes it has taken a very long time to come back to 100%. I was lucky my brain actually healed."
I borrowed this post from one of C. W. Conn's post. I did this to show you what harmful effects can come from not wearing your CPAP. Conn is a 20 year + veteran of sleep medicine. If this could happen to someone that understands apnea...... I cannot stress the importance of wearing your CPAP.
Thanks Conn, I am really glad you are with us. Hope you do not mind me borrowing your words.
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Thank you for these responses, they range from the practical to the passionate, and I appreciate them.
In some cases I believe folks were rather quick to chide me over my attitude and/or motives. In response I would only encourage them to recall or imagine a time when they had very little hope. But joining this board was a hopeful act for me.
What I have done since reading the responses:
- Used my machine at least most of every night
- Looked at my machine efficacy data: Generally, AHI under 5, leaks 0.
- Revisited my decision not to schedule the latency test. I plan to schedule it, far enough in the future to build up a few months of dedicated machine use and a plan (i.e. stockpiile coffee) to survive the period without wakefulness meds beforehand.
M
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Permalink Reply by sleepycarol on
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I like your new attitude Matthew. It isn't a piece of cake for most people to adjust to therapy, but the alternative is not so good health and more health problems than Heinz has pickles.
Keep using your machine, every night. Your body will eventually thank you. It took over a year for me to start seeing that I wasn't so tired and cranky. All I wanted to do was to sleep, I felt worn out and used up. I think I had a huge sleep debt to pay off and for my body to start recognizing that I was sleeping better and would continue to sleep better with the machine.
You can do this and with a positive attitude you can succeed.
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Yeah the notion of the "sleep debt," like many aspects of CPAP therapy, is not exactly intuitive, so learning these things will help me to understand the benefits that aren't immediately apparent. Thanks.
M
sleepycarol said:I like your new attitude Matthew. It isn't a piece of cake for most people to adjust to therapy, but the alternative is not so good health and more health problems than Heinz has pickles.
Keep using your machine, every night. Your body will eventually thank you. It took over a year for me to start seeing that I wasn't so tired and cranky. All I wanted to do was to sleep, I felt worn out and used up. I think I had a huge sleep debt to pay off and for my body to start recognizing that I was sleeping better and would continue to sleep better with the machine.
You can do this and with a positive attitude you can succeed.
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Permalink Reply by D. W. Conn on
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I you were my patient I would really like to know your height, weight, neck size,diet & excercise level. A sleep diary for a few days. i know we preach it but diet and excercise is so very important. nPAP is only a small portion of treatment... trust me I learned the hard way. no for coffee use it sparingly. high dose of this can cause problems if you are not conditioned to it. those energy drinks..NIGHTMARE IMHO do not use any of them.
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OK: 5'7" @ 155 lbs. Neck about 15.5" Very sedentary.
Thanks for the advice!
M
D. W. Conn said:I you were my patient I would really like to know your height, weight, neck size,diet & excercise level. A sleep diary for a few days. i know we preach it but diet and excercise is so very important. nPAP is only a small portion of treatment... trust me I learned the hard way. no for coffee use it sparingly. high dose of this can cause problems if you are not conditioned to it. those energy drinks..NIGHTMARE IMHO do not use any of them.
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Permalink Reply by Banyon on
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Matthew,
For me there were three critical things to getting out of zombie land.
-Software for the machine to check on the therapy and get it optimized. The settings the doctors prescribe are usually suboptimal.
-Imacculate sleep hygiene including no caffeine.
-Vigorous and consistent exercise program.
Good luck.
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were you diagnosed with obstructive sleep apnea or Central sleep apnea? I just feel like something is missing...but then again i look for missing objects all the time. may not be anything missing.
Matthew said:OK: 5'7" @ 155 lbs. Neck about 15.5" Very sedentary.
Thanks for the advice!
M
D. W. Conn said:I you were my patient I would really like to know your height, weight, neck size,diet & excercise level. A sleep diary for a few days. i know we preach it but diet and excercise is so very important. nPAP is only a small portion of treatment... trust me I learned the hard way. no for coffee use it sparingly. high dose of this can cause problems if you are not conditioned to it. those energy drinks..NIGHTMARE IMHO do not use any of them.
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Good on you, Matthew. I like your new attitude!!! Members here CARE and remember their start on xPAP. Very few experience overnight relief the first time they use xPAP. Most of us struggled, some more than others. Some longer than others. You'll get good advice here. I'm delighted you are going to stick w/us AND w/xPAP therapy AND are going to go for that MSLT! You are on the right track now!
Out of curiosity - do you have a short neck?? Are you carrying most of your xtra weight above the hips?
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