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Machine says I'm doing great - but I still have daytime sleepiness

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psilver +0 points · over 1 year ago Original Poster

I was diagnosed with sleep apnea through a home test (insurance wouldn't pay for in-lab), and have been using an APAP for the past 6 months (Resmed Airfit N20, nasal mask). The MyAir website tells me I'm doing great - low leak rates, generally 4-7 L/min, AHI mostly in the 1-3 range, with occasional readings under 1, occasionally 3-4. Great, right? Except I'm not feeling refreshed when I wake up, and I'm still prone to daytime sleepiness at times. What's going on?

Note - I was diagnosed with sleep apnea 20 or so years ago, too, through an in-lab test, and used a CPAP for awhile. It helped immensely, and with the newfound energy I was able to get myself on an exercise regimen and lost a ton of weight, negating the need for the CPAP at all. Sadly, after several years of keeping the weight off, exercising regularly, and eating right, due to various personal changes I slowly began gaining weight again, and thus the sleep apnea came back. This time is different, though.

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psilver +0 points · over 1 year ago Original Poster

Bunmping - and also noting that last night I got over 7 hours sleep, and the machine reported an AHI of only 0.4 but I woke up still feeling tired and have been dragging today.

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SleepDent +0 points · over 1 year ago Sleep Commentator

Well, maybe the key to it might be your statement that your first bout with OSA was 20 years ago. It would be helpful to know your present age. The quality of sleep normally degrades somewhat with increasing age. On average, elderly people have worse sleep and more daytime sleepiness than younger people. If you are in the much older age group now, it might be unrealistic to expect the same sizzling results from your younger days. Never-the-less, it would not be good to use this as an excuse either, maybe it might make sense to consult with your family doctor to see if you have any other medical problems making you feel draggy. There are also other sleep problems besides OSA and further exploration with the sleep doctor could also be in order. Arthur B. Luisi, Jr, D.M.D.

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GoodVioletCrow9215 +0 points · over 1 year ago

Hi Doc, I'm wondering if people get tired from these machines because we are breathing in plastic particles from the hoses and machine itself? There have been many scientific articles over the years about the chemicals (BPA and phtalates are a couple that come to mind) in plastic containers that leach into our food and that are toxic, carcinogenic and hormone disruptive, and I wonder if anyone has studied this with the CPAP machines? If we are breathing in microscopic particles of toxins in the plastics, that could cause more tiredness and aging, as well as disease. Just sayin'.

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psilver +0 points · over 1 year ago Original Poster

Thanks - I'm 58

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wiredgeorge +0 points · over 1 year ago Sleep Enthusiast

Not sure about the sleep quality degrading for the elderly. First, I am not sure what elderly means as far as the good doctor used the term. I am about 10 years older than you and since starting therapy about 5 years ago, my sleep quality is GREAT and I feel rested after about my usual 5-6 hours of sleep. Prior, I had to hit the head every couple hours but I think that it may have been I wasn't sleeping deeply and just got into a habit that roused me. Power went down Saturday night and without my Bipap, I reverted to my old sleep habit of getting up every couple hours and feeling like I really didn't get any deep sleep. I KNOW that great sleep quality is possible for myself and many other elderly folks.

One thing that amazes me is that there don't seem to be any studies as to why folks feel lousy after effective OSA therapy. Seems that is THE most common complaint and I can't see any good answers on the horizon. Some say that a patients chest has to work harder with the forced air intake so that tires them. Some say it just takes time to "adjust and adapt". I really think these things may not be the answer and wish the medicos would look into this issue which seems the most common complaint about OSA therapy.

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SleepDent +0 points · over 1 year ago Sleep Commentator

I think that you have made a really important point here. At this point we really DON'T know why people can have effective treatment on CPAP according to the objective numbers and yet still don't feel as rested and as well as they would hope to and expect to. This is a really important research topic that should be resolved. On a personal level, I can report something from my practice that might be a sliver of a clue. There have been patients in my practice who have approached me for oral appliance therapy after continuing to feel lousy after long-term successful CPAP treatment. In those cases where the oral appliance controls the OSA well, the patient usually does eventually start to feel well. My personal theory is that, in these cases, the whole CPAP experience was just too intense and draining for those particular patients. I can't give you the particulars of why and how this would happen. I can only tell you that, for the right patients, the oral appliance experience is much gentler and seems to make them feel better. Arthur B. Luisi, jr. D.M.D.

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yawningjoe58 -1 point · over 1 year ago

i do not wish to sound harsh , but are you not promoting your own business here, i was diagnosed with severe sleep apnea two years ago had a ahi of 56 within an hour now down to between 1-4,so cpap seems to be working, still feel tired most mornings but hey dont we all even those of you out there that are not on cpap therapy, i was never even given the chance to use an oral apllication, but i can tell you this when i do get a good nights sleep i am full of energy , but the machine has become part of my life. so please help people with cpap. DONT PROMOTE YOUR OWN BUSINESS.

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Kinikea +0 points · over 1 year ago

I have a oral device and as I have said here before.. I love it! My AHI's were very high but a cpap was out of the question. I am so thankful that this device exists and that a sleep doctor suggested I give it a try. I am able to sleep soundly every night. If you still feel tired in the morning download the SleepLab app and you will be able to hear everything that goes on while you sleep.

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wiredgeorge +1 point · over 1 year ago Sleep Enthusiast

yawningjoe58, YOu are way out of line. Dr. Luisi is one of the few bona fide medical professionals who care enough to provide valuable advice from the perspective of a medical professional. This forum is greatly enhanced by the participation of the professionals who take part and not by people who try to silence them.

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NiceSilverBison1316 +0 points · over 1 year ago

Plus 1 on what wiredgeorge said.

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SleepDent +0 points · over 1 year ago Sleep Commentator

Thank you for the support. Appreciated. Dr. Luisi

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yawningjoe58 +0 points · over 1 year ago

i am not trying to silence anyone i am just expressing an opinion, i have heard a lot of stories about cpap over the last two years, been given a lot of bad advice,have you not heard of freedom of speech, if you can not have that, well whats the purpose of this site. so doctor if you are reading this i am sorry if i was offensive and wiredgeorge to you also.

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SleepDent +0 points · over 1 year ago Sleep Commentator

Apology accepted. Thank you. Dr. Luisi

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GoodVioletCrow9215 +0 points · over 1 year ago

I had an oral device and it was terrible (drooling at night, dry mouth other times, clamping down on my gums), but I persisted with it for a few years, until I was so ready for the CPAP! Then I ditched the oral appliance and thought the CPAP was great at first, but now I'm just as tired as ever even though my numbers are great. And I get headaches every night that start while I'm sleeping. Do you know why this happens? It's not fun to deal with this daily. HELP!!!

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psilver +0 points · over 1 year ago Original Poster

Thanks, wiredgeorge. I have found that I'm not getting up in the middle of the night like I used to. I was hitting the head once ever other night or so, now I go several nights in a row without doing that. I've gone as much as a month without getting up. I don't think it has to do with difficulty breathing against the machine - when I turn it on it takes less than a minute for me to adjust. I also don't think it's time for adapting - I've been using the machine for 6 months now, and pretty much adjusted after the first night.

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BGailDemko140 +0 points · over 1 year ago

Not feeling refreshed after effective treatment for sleep apnea, regardless whether it is PAP or an oral appliance, is a conundrum for science. There are multiple studies of both CPAP and oral appliances that show the improvement in how people feel does not matter between active treatment (actually using the CPAP or the oral appliance) and a placebo or inactive therapy. How can that happen? Some people feel great, others feel no difference. This has led to more studies which actually look at the various causes behind sleep apnea: how you're built anatomically, how your muscles work, central nervous system control, etc. Every person has a varying proportion of causes/ reasons behind why the sleep apnea has occurred. All it takes is one tipping point to push you over from minimal disease in to symptomatic disease. At present, physicians approach this problem by using a second approach added to the first which is hoped to treat the residual symptoms. This may be positional therapy to keep you off your back, an oral appliance, exercise regimen (better than weight loss in controlling symptoms), myofunctional therapy, medication...on and on.) One other theory behind continued symptoms is related to years and years of feeling tired might eventually rewire your brain to feel that way permanently. There is less research in this area. Just be aware that this feeling happens with all forms of therapy. B. Gail Demko, DMD

Sleep Dentist Consultant to MyApnea.Org Assoc. Editor of the Journal of Dental Sleep Medicine Expert Advisor to the FDA on Oral appliance Therapy Past President of the Academy of Dental Sleep Medicine American Board of Dental Sleep Medicine

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SleepDent +0 points · over 1 year ago Sleep Commentator

I think that it is important to reiterate that feeling less tired is just one of the MANY, MANY benefits of effective treatment of obstructive sleep apnea. Some of them could be: a potentially longer life, less chance of having a nocturnal stroke or heart attack, less chance of having dementia, better cognitive ability, less obesity, less difficulty losing weight, better sex drive, and the list goes on and on. So don't feel that it has failed you just because you still feel more tired than you would like. You are still benefiting in many important ways. Arthur B. Luisi, Jr., D.M.D., The Naples Center for Dental Sleep Medicine. Practice partner, dental sleep medicine, The NCH Healthcare System. Practice partner, dental sleep medicine, The Millenium Physicians Group.

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psilver +0 points · over 1 year ago Original Poster

Thank-you for the response. I can understand if xPAP therapy alone doesn't reduce AHIs enough and additional therapy (whether it be oral appliance, positional, surgery, etc) is required to bring AHIs down to a normal range. But if the sleep data is indicating that AHIs are in the range of 1-2/hour every night on APAP therapy, what would additional therapies do that the APAP isn't?

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SleepDent +0 points · over 1 year ago Sleep Commentator

This is a very interesting question, probably SleepTec would be the best one to answer this, but let me give it a shot. There is a huge variation between people in just how sensitive they are to sleep disordered breathing. Your AHI looks good, but there are other measures of just how effective the treatment is. If you had a laboratory attended sleep test(the better kind), someone needs to scrutinize it to see if there is other important information contained in it. For instance, there is another kind of sleep disordered breathing, Respiratory Effort Related Arousals(RERAs), which are not frank apneas or hypopneas, but can also disturb your sleep and make you tired. If you had a lot of them on your test report, perhaps you would need to take further measures to reduce or eliminate them. There are other potential things like this, but you get the drift. Arthur B. Luisi, Jr., D.M.D.

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psilver +0 points · over 1 year ago Original Poster

Thanks very much. My doctor originally ordered an in-lab sleep test, but insurance denied it as "not medically necessary" and only approved the at-home test.

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SleepDent +0 points · over 1 year ago Sleep Commentator

Regrettable, but happens all the time. Again, treatment quality is diluted out in the name of "economic efficiency" by the insurance companies. Arthur B. Luisi, Jr., D.M.D.

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Incatrail +0 points · over 1 year ago

I'm 2 weeks into use of a ResMed CPAP machine and still adjusting the variables (currently increasing pressure). I do not understand the rationale for the ResMed dashboard scoring and wonder if anyone can help. The reason for starting the treatment is sleep apnea, the primary measure of this is AHI (events per hour). This primary measurement is only given a 5 weighting out of total 100 points on the ResMed score. I'm still getting readings for AHI of over 20 per hour which gets a zero score which makes little difference on my total score of around 89, described by ResMed as "Great Results" but the treatment has failed so far when looking at AHI. How do I reconcile these contrary scoring methods.

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wiredgeorge +0 points · over 1 year ago Sleep Enthusiast

The total score is kind of pointless exercise. AHI is very important. Mask seal is an indication of how well your mask is sealing and while the machine can compensate for leaks, massive leaks are annoying. Total hours of sleep is important if you just got the machine and an insurance company is paying; compliance is normally 4 hours or more per day use. If your AHI is over 20, how were the initial settings arrived at? Sleep study followed by titration study? I would guess if the initial settings were based on a prescription, messing with the settings would only be counter productive.

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Incatrail +0 points · over 1 year ago

Thanks for the reply wiredgeorge, the CPAP machine is on a prescription after a sleep study and separate titration study. The prescription is currently being modified for pressure by my doctor - I have to wait for that. I understand and agree your comments that seal and AHI are critical measurements I just wondered why AHI in particular is given such a low weighting by ResMed. BTW, my use has been 7.5 -8.5 hours per night, with no misses. My Mask seal measurements are described as "acceptable" by my equipment provider.

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HeadsUp +0 points · over 1 year ago

Think about the ResMed MyAir score in a different way. I believe the app score is to increase odds/encourage use/promote compliance in using CPAP. The AHI score shows that one is responding to the CPAP medically....and important information for your medical team receiving the information. The hours of use and the machine being able to 'do its job' in compensating for leakage increase the odds of our bodies receiving positive health affects. Consider your myAir score as brownie points or a pat on the back for a job well done. I like to think of the myAir score I receive is on parr with the email message 'badges' my son's app sends monitoring his learning to drive hours/experiences. Hope this helps Incatrail.

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SamInLasVegas +0 points · over 1 year ago

I am in the same boat. I have been on a CPAP machine for five months now. Even though the results show I’m having barely any events per hour I still wake up tired and feel fatigued pretty much all day long. I even get dark circles under my eyes which I never used to get. I am sleeping better than I was before the CPAP, so there has been improvement, but I still feel pretty crappy, just not as crappy as I was.

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Sierra +0 points · over 1 year ago Sleep Innovater

You may want to consider using some of the tools and techniques of cognitive behavioural therapy for insomnia. You may not have technical insomnia, but could gain some tips on how to get a more effective sleep. Here is a link. There are quite a few things to check out at the site that are worthwhile. As far as I can see they are not trying to sell anything.

Cognitive Behavioural Therapy for Insomnia

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snuzyQ +0 points · over 1 year ago Sleep Commentator

If you find that you are already doing the things you can do for insomnia, persisting fatigue is something to bring up with your doctor. There are a lot of things that cause fatigue other than sleep apnea and it might be a good idea for your doctor to do some ruling out.

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SamInLasVegas +0 points · over 1 year ago

I am wondering if I might be anemic also. It does run in my family. I might call my doctor on Monday and see if I can get a blood test done

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