New to CPAP/OSA - skepticism, questions, observations

[DougalMcDougal]

Hi All

a few random questions/observations

THE BEGINNING
i was diagnosed with severe sleep apnoa from a home sleep study I ordered over the Internet 2 weeks ago.
RDI = 38 (apparently similar to AHI - is it possible to directly convert an RDI to an AHI?)
i ordered the test because I snore, my wife says i sometimes stop breathing and i have lifelong insomnia (and relative sleep deprivation because I need to wake up early for work, averaging 5-6 hours sleep per night through most of my adult life) - but I do not experience what i would consider daytime sleepiness

typically i go to bed around 12pm, fall asleep around 2pm, wake up at 7.30pm, find it very difficult to wake up and am groggy for 30 minutes then feel ok for the rest of the day, then get a 2nd wind of energy at 7pm and do my best thinking/personal work at night, a true night owl

I went ahead and bought a resmed s9 autoset with resmed Quattro FX + F&P Pillairo and was eager to start CPAP because of all the reports I'd heard of people feeling supercharged and energised after treatment

I've been doing it for 5 days now:
Day 1: AHI = 9.3 (pillairo nasal pillows)
woke up fresh and energised and felt great - i do not know if this was a placebo effect or not (I suspect largely it was)
- but i felt tired by 6pm and wanted to go to bed at 9pm (usually i am energised at night)
- adapted to the CPAP very easily, I find the sound soothing and the mask gives me a feeling of warmth/pleasant isolation
- the pillairo made my nose tip sore

Day 2: AHI = 4.3( Quattro FX): woke up moderately easily but felt a little tired all day more so than normal for me

Day 3: AHI = 8.6 (pillairo nasal pillows): woke up moderately easily but felt a little tired all day more so than normal for me
- will stop using the pillairo because my nose tip has been traumatised and bled and is sore, may try again when it heals

Day 4 AHI = 4.0 (Quattro FX): woke up moderately easily but felt a tired all day more so than normal for me, felt very very tired by 7pm

Day 5: AHI = 3.2 (Quattro FX): woke up moderately easily but felt a little tired all day and v tired by 7pm

so far, I am waking up much less groggy than I used to and probably a bit more energised in the morning, but overall after the initial morning burst of energy I feel much more tired than I used to pre-CPAP
- I will persevere for now but am much less enthusiastic about it than i was initially

INCREASING SKEPTICSIM
over the last week I have skimmed all 16,000+ abstracts on pubmed relating to obstructive sleep apnea (OSA) http://www.ncbi.nlm.nih.gov/pubmed
- basically every decent medical paper written about the condition ever published - i read in detail the available systematic reviews or randomised controlled trials that provide free online access or that i can access easily via my online academic account

- my impression is that overall there are a large numbers of small, poorly controlled studies demonstrating variable benefits of CPAP in terms of sleepiness, BP reduction, cognitive functioning but the benefits tend to be hugely overstated in the popular press and online forums and by sleep specialists and industry
- nearly all of the high quality research (meta-analyses, prospective controlled trials, systematic reviews) show minimal and marginal benefits of CPAP (e.g. you read everywhere that CPAP can reduce blood pressure but in fact the prospective studies and meta analyses show minimal effect (http://www.ncbi.nlm.nih.gov/pubmed/23066375, http://www.ncbi.nlm.nih.gov/pubmed/22618923, http://www.ncbi.nlm.nih.gov/pubmed/21106625 ) and most of the often quoted cognitive benefits do not hold up to unbiased scrutiny apart from attention (which i do not personally have any problem with and so would not consider a personal reason to continue with cpap although i appreciate others might) http://www.sciencedirect.com/science/ar ... 9212001013

- the data clearly demonstrates that OSA has important deleterious effects on numerous physiological parameters and increases morbidity/mortality (especially stroke) amongst sufferers and this seems to be what drives many people to recommend/use CPAP
- but the data is much less convincing and largely absent that CPAP actually has a major impact on reversing or preventing the morbidity/mortality associated with OSA

I'm committing my self to giving full time cpap at least 6-8 weeks but will consider ditching it if i do not see/feel any significant personal improvements by the end of that time unless i see some high quality evidence of benefit

any comments or advice?
is my experience common, should i expect to feel better soon?

thanks in advance

[Greg6657]

I would like to first say welcome to the forum.
You are off to an excellent start by becoming as familiar as you can with this disease. There are a lot of people on here that will give you great info and help with all of your questions.
You may want to go to the control panel and list your equipment even though you listed it in this post.
Again Welcome
Greg

[eeckel]

Welcome to the forum. The following is a Chochrane Review of cpap efficacy that has more diverse outcome measures. Accessed through Evidence Based Medicine Reviews database. If you would like a full text PDF just let me know. It is unfortunately a bit old and due for an update.

Continuous positive airways pressure for obstructive sleep apnoea in adults
Giles, Tammie L; Lasserson, Toby J; Smith, Brian; White, John; Wright, John J; Cates, Christopher J
Author Information
Cochrane Airways Group
Tammie L Giles; 2 Cork Street, Athelstone, Adelaide, South Australia, Australia, 5076. E-mail: tammieg_27@yahoo.com.au.
Christopher J Cates, Toby J Lasserson; St George's, University of London, Community Health Sciences, Cranmer Terrace, Tooting, London, UK, SW17 ORE
Brian Smith; Queen Elizabeth Hospital, Department of Medicine, University of Adelaide, Woodville, South Australia 5011, Australia
John White; York District Hospital, Respiratory Medicine, Wigginton Rd, York, North Yorks, UK, YO31 8HE
John J Wright; Bradford Royal Infirmary, Bradford Institute for Health Research, Duckworth Lane, Bradford, W. Yorkshire, UK, BD9 6RJ

Abstract

Background: Obstructive sleep apnoea is the periodic reduction (hypopnoea) or cessation (apnoea) of breathing due to narrowing or occlusion of the upper airway during sleep. The main symptom is daytime sleepiness and it has been suggested it is linked to premature death, hypertension, ischaemic heart disease, stroke and road traffic accidents.

Objectives: The main treatment for sleep apnoea is with the use of continuous positive airways pressure (CPAP), which requires a flow generator and mask. These are used at night to prevent apnoea, hypoxia and sleep disturbance. The objective was to assess the effects of CPAP in the treatment of obstructive sleep apnoea in adults.

Search strategy: We searched the Cochrane Airways Group Trials Register and reference lists of articles. We consulted experts in the field. Searches were current to July 2005.

Selection criteria: We included randomised trials comparing nocturnal CPAP with an inactive control or oral appliances in adults with obstructive sleep apnoea (an apnoea and hypopnoea index greater than five per hour). Trials had a minimum intervention period of two weeks.

Data collection and analysis: Trial quality was assessed and two review authors extracted data independently. Study authors were contacted for missing information. Parallel and crossover group trials were analysed separately.

Main results: Thirty-six trials involving 1718 people met the inclusion criteria. Study quality was mixed. Compared with control, CPAP showed significant improvements in certain objective and subjective sleepiness, measures of quality of life and cognitive function (parallel-group studies: Epworth sleepiness scale (ESS) -3.83 units, 95% CI -4.57 to -3.09; crossover studies: ESS -1.84 units, 95% CI -2.57 to -1.11). Twenty-four hour systolic and diastolic blood pressures were lower with CPAP compared with control (parallel-group trials). Compared with oral appliances, CPAP significantly reduced the apnoea and hypopnoea index (crossover studies: -7.97 events/hr, 95% CI -9.56 to -6.38) and improved sleep efficiency (crossover studies: 2.31%, 95% CI 0.02 to 4.6) and minimum oxygen saturation (4.14%, 95% CI 3.25 to 5.03). Responders to both treatments expressed a strong preference for the oral appliance. However, participants were more likely to withdraw on OA than on CPAP therapy.

Authors' conclusions: CPAP is effective in reducing symptoms of sleepiness and improving quality of life measures in people with moderate and severe obstructive sleep apnoea (OSA). It is more effective than oral appliances in reducing respiratory disturbances in these people but subjective outcomes are more equivocal. Certain people tend to prefer oral appliances to CPAP where both are effective. This could be because they offer a more convenient way of controlling OSA. Short-term data indicate that CPAP leads to lower blood pressure than control. Long-term data are required for all outcomes in order to determine whether the initial benefits seen in short-term clinical trials persist.

[Burkebang]

Welcome to the forum!
I'm a lot like you. I'm a night owl that normally gets way too little sleep and are energized, specially in the evening and night. What I see is that if I go to sleep before 12 o'clock and get a full 7.5 hour + nights sleep, I feel good in the morning, I have a good day and get more and more tired and sleepy during the afternoon and evening. I don't get those energy kicks before lunchtime and in the evening as much. I think this is a much more normal and healthy circadian rhythm. But my problem is that I am still a night owl and I am unable to maintain a normal and healthy circadian rhythm.

I have a theory that those who have a good circadian rhythm is those that benefit the most from CPAP treatment when it comes to quality of life improvements. Someone should do a poll on this.

Your untreated AHI is high enough that you really must stay on CPAP. If you don't, you're likely to develop high blood pressure which could lead to heart problems and strokes.
Unfortunatly not everybody gets a complete lifechanging improvement with CPAP treatment, but that does not mean that we don't need it.

It does not take any studies to say that 38 breathing stops pr. hour and the O2 desaturations and stress on the heart, while having too little O2, that this leads to is not good for you. Since you have adjusted SO well to CPAP treatment and have bought all the gear, I think it would be madness to stop using it, knowing all that you know.

You also suffer from severe OSA, is there any oral appliances that claims to successfully treat severe OSA? I have only seen them directed at sufferers of mild - moderate OSA.

Edit:
The efficiancy of an oral device is easy to meassure with a recording pulseoximeter, so you could try it and see if it works for you.
http://www.pulseoxstore.com/Downloadable-Pulse-Ox.html

[Addercatter]

Welcome

I can only speak from my own experience, and I have only been using my machine a little over two weeks.

Regarding the excess sleepiness issue: I have been told by my dr, as well as members of this forum, that my brain is finally experiencing this rest that it has been deprived of for so long, that it craves more and more. Some people use the term "sleep debt". Luckily, the brain can "catch up" to the amount of quality sleep much more quickly that it took to become so deprived of it.

My dr told my today during my appointment that it can take anywhere from a few days up to around 120 days for the brain and body to get "caught up" on the quality sleep. These numbers are different for each individual based on the severity of the SA, the duration one has gone without treatment, other health problems, and so on.

So now I am taking my fatigue as a good sign. My ASV treatment is working (I have severe complex SA, with my AHI going from 97 to 1.7 average) and I realize that I am not going to feel wonderful and have a great sleep schedule until my brain and body gets enough. And it will, as long as I am patient and don't get discouraged.

I get leaks sometimes, or wake up feeling a bit claustrophobic. These are things I will adjust to. My dr suggested wearing the mask alone for 15 minutes, twice a day, as I do normal activities such as drive to run errands or do the dishes. This will help teach my brain that the mask is ok, that it isn't some foreign object that shouldn't be on my face. Sometimes I turn on the machine and practice breathing with it as I watch tv or read a book. Using the mask while awake can also help make you aware of any discomforts and enable you to adjust the mask accordingly (things you may not notice as you fall asleep with the mask on normally).

I wear a soft cap made for cancer patients under my head gear, as well as soft padded strap covers. I have my heated hose hanging above my bed, and I clip the hose onto my night shirt, leaving just enough slack to toss and turn in bed. This keeps the hose moving along with me instead of resisting when I move and tugging on the mask, breaking the seal and causing leaks.

I also invested in a cpap pillow. Not only does it provide space for my mask (I'm a side sleeper), it also aligns my neck and spine. My usual severe neck and shoulder pain from other conditions have been greatly reduced by using the pillow!

These are just some things that have helped me along so far and have made a big difference to me since I first started my treatment. I know I still have a long way to go, but I'm willing to do whatever it takes to make this therapy work for me.

Sorry this was so long. I get carried away sometimes. Let me know what you think or if you need any info on any of the devices I use. Good luck and hang in there! Kat

[DougalMcDougal]

thanks for the cochrane review - that’s the sort of evidence that i attribute most weight to. Just looked at the updated 2008 version available here http://onlinelibrary.wiley.com/doi/10.1 ... .pub3/full

it seems in line with a lot of the stuff I've read in that there are multiple statistically significant benefits of CPAP but many of these are not what I would really consider clinically significant benefits because the magnitude of the benefit is so small e.g. the headline conclusion of a reduction in blood pressure due to CPAP relates to only an approximate 1.4 to 1.5 mmHg reduction in mean diastolic/systolic BP (even then the evidence for this marginal improvement is weakened when you consider the crossover studies showed no benefit at all on diastolic BP).

If I had high BP (which I don;t) I would not be inclined to subject myself to lifelong CPAP for a 1.4 mmHg BP reduction as there are numerous other less invasive ways to reduce BP by much large degrees

likewise when you drill down to the specific numbers, there are no compelling reasons (in my opinion) to support lifelong CPAP in that Cochrane review and when you consider that this is amongst the best evidence available it seems pretty poor

[quote="eeckel"]Welcome to the forum. The following is a Chochrane Review of cpap efficacy that has more diverse outcome measures. Accessed through Evidence Based Medicine Reviews database. If you would like a full text PDF just let me know. It is unfortunately a bit old and due for an update.

[DougalMcDougal]

that’s a fascinating idea regarding the differential effects of CPAP being influenced by your individual circadian rhythm and a great potential avenue for research!
i'll have to spend some time digesting that

my gut instinct is too agree with you that i should stay on cpap because of the clear risks assocaited with OSA, but my logical mind finds it difficult to reconcile the lack of data specifically showing that CPAP mitigates these risks. It clearly improves surrogate markers like AHI/ 02 saturation etc but that doesn’t necessarily correlate to a reduced risk of stroke/heart attack. My view is that just because i can do the CPAP does not mean i should if there is no definitive evidence for a benefit in clinically relevant direct endpoints.
e.g. from what i read, CPAP does not convincingly prevent high blood pressure although it may reduce the severity by a marginal degree e.g. 1-2 mmHg

I am really dissappointed though that I have not experienced a supercharged energy level. I was hoping/expecting at some level to wake up and perform like Jason Bourne after starting CPAP. I am still hoping it will happen

i am seeing a dentist with special interest in OSA in a few weeks for an oral exam to see if there are any obvious anatomical factors that might benefit from an oral appliance ut not optimisitic as like you, my impression is that they are for people wit mild/mod OSA

I will buy a pulse oximeter and check my sats

Welcome to the forum!
I'm a lot like you. I'm a night owl that normally gets way too little sleep and are energized, specially in the evening and night. What I see is that if I go to sleep before 12 o'clock and get a full 7.5 hour + nights sleep, I feel good in the morning, I have a good day and get more and more tired and sleepy during the afternoon and evening. I don't get those energy kicks before lunchtime and in the evening as much. I think this is a much more normal and healthy circadian rhythm. But my problem is that I am still a night owl and I am unable to maintain a normal and healthy circadian rhythm.

I have a theory that those who have a good circadian rhythm is those that benefit the most from CPAP treatment when it comes to quality of life improvements. Someone should do a poll on this.

Your untreated AHI is high enough that you really must stay on CPAP. If you don't, you're likely to develop high blood pressure which could lead to heart problems and strokes.
Unfortunatly not everybody gets a complete lifechanging improvement with CPAP treatment, but that does not mean that we don't need it.

It does not take any studies to say that 38 breathing stops pr. hour and the O2 desaturations and stress on the heart, while having too little O2, that this leads to is not good for you. Since you have adjusted SO well to CPAP treatment and have bought all the gear, I think it would be madness to stop using it, knowing all that you know.

You also suffer from severe OSA, is there any oral appliances that claims to successfully treat severe OSA? I have only seen them directed at sufferers of mild - moderate OSA.

Edit:
The efficiancy of an oral device is easy to meassure with a recording pulseoximeter, so you could try it and see if it works for you.
http://www.pulseoxstore.com/Downloadable-Pulse-Ox.html

[DougalMcDougal]

i came to the same conclusion that my new excess sleepiness may be due to my starting to pay of a sleep debt and i would need to catch up, but when my wife (who is very scientifically challenged) came up with the same exact theory it jolted me to my senses and made me think that I am probably just trying to rationalise and twist my observations to fit the (subjective) facts - I'm doubtful it’s a scientifically valid theory but will eagerly wait and see how things pan out

i feel lucky to have adapted to the cpap so well considering the bad experiences i read about. I think this was a benefit of my rationalising it. I am an optimist and when i first found i would need CPAP I instantly thought that is fantastic!, I'll reduce my risk of death, improve my quality of life and feel energised so it made me look forward to it -

Welcome
Regarding the excess sleepiness issue: I have been told by my dr, as well as members of this forum, that my brain is finally experiencing this rest that it has been deprived of for so long, that it craves more and more. Some people use the term "sleep debt". Luckily, the brain can "catch up" to the amount of quality sleep much more quickly that it took to become so deprived of it.

My dr told my today during my appointment that it can take anywhere from a few days up to around 120 days for the brain and body to get "caught up" on the quality sleep. These numbers are different for each individual based on the severity of the SA, the duration one has gone without treatment, other health problems, and so on.

So now I am taking my fatigue as a good sign.

[DougalMcDougal]

that describes me 100% too!
i feel i am missing the evening energy rush. I used to struggle through the morning, perform well at work partly on autopilot, get home and feel energised in the evening and then leap enthusiastically into my personal pursuits, but now i feel my most alert/productive hours are 'wasted' during my work day, leaving me drained at night and less able to pour energy into the personal pursuits i love (although i love my job too but just do not need the same level of energy to perform it)

it feels like i am surpressing my natural self (i.e. night owl) with CPAP and i don;t know if that’s good

Welcome to the forum!
I'm a lot like you. I'm a night owl that normally gets way too little sleep and are energized, specially in the evening and night. What I see is that if I go to sleep before 12 o'clock and get a full 7.5 hour + nights sleep, I feel good in the morning, I have a good day and get more and more tired and sleepy during the afternoon and evening. I don't get those energy kicks before lunchtime and in the evening as much. I think this is a much more normal and healthy circadian rhythm. But my problem is that I am still a night owl and I am unable to maintain a normal and healthy circadian rhythm.

[Burkebang]

my gut instinct is too agree with you that i should stay on cpap because of the clear risks assocaited with OSA, but my logical mind finds it difficult to reconcile the lack of data specifically showing that CPAP mitigates these risks. It clearly improves surrogate markers like AHI/ 02 saturation etc but that doesn’t necessarily correlate to a reduced risk of stroke/heart attack. My view is that just because i can do the CPAP does not mean i should if there is no definitive evidence for a benefit in clinically relevant direct endpoints. e.g. from what i read, CPAP does not convincingly prevent high blood pressure although it may reduce the severity by a marginal degree e.g. 1-2 mmHg

I am really dissappointed though that I have not experienced a supercharged energy level. I was hoping/expecting at some level to wake up and perform like Jason Bourne after starting CPAP. I am still hoping it will happen

I will buy a pulse oximeter and check my sats

I would also like good solid empirical data. But until it comes, I feel I have to trust the doctors who precribed CPAP even without such data.

My Grandfather had a heart attack at age 30 had very reduced quality of life until he died from another heart attack at age 50. He snored a lot and had breathing pauses according to my grandmother. My mothers father had a fatal heart attack at age 40, he also snored.
My father had a tripple bypass, mitral valve replacement and aortic aneurism repair at age 60 after 15 years of unexplained high blood pressure. After I tested him with my oximeter, he was diagnosed with severe OSA and is now also on CPAP.

So I have an idea of where I'm headed if I don't stay on CPAP. If research should show that CPAP has less effect than thought later on, I can quit then. But most research I have seen only strengthens the bond between OSA and hypertension, heart problems and strokes.

I also expected to feel supercharged, but after 11 months on CPAP I have noticed many improvements in my general health. It's just that they have come gradually over time.

A pulse oximeter is something that everybody who takes an interest in their treatment should have. CPAP machines only record events and duration, the oximeter records the effect the treatment actually has on our bodys. I reccomend the CMS-50D Plus, which you can download directly into Sleepyhead. The CMS-50F is also a good choice if you plan on using it every night, it is very comfortable to wear and fits more securely, it takes a few extra steps to get the data into Sleepyhead, but no problem. If you don't plan on using Sleepyhead, any recording oximeter with software will do.

[49er]

Hi,

Unfortunately, in spite of trying many things, I have been unable to mostly stay asleep on my machine for any significant amount of time. But during the very few times that I did have success, I could tell an immediate difference. I didn't need a study to confirm what I was subjectively experiencing.

However, I do understand your skepticism. I wish to god I had had that when I started taking psych meds instead of letting them destroy my life.

Good luck in sorting everything out.

49er

[Burkebang]

that describes me 100% too!
i feel i am missing the evening energy rush. I used to struggle through the morning, perform well at work partly on autopilot, get home and feel energised in the evening and then leap enthusiastically into my personal pursuits, but now i feel my most alert/productive hours are 'wasted' during my work day, leaving me drained at night and less able to pour energy into the personal pursuits i love (although i love my job too but just do not need the same level of energy to perform it)

it feels like i am surpressing my natural self (i.e. night owl) with CPAP and i don;t know if that’s good

I know very well what you are saying, my job can also be done mostly on autopilot. I really should not say it, but sleeping even less, gives me the rushes back. I find that 3-4 hours of sleep has me pretty much where I used to be with 5-6 hours of sleep before CPAP. Unfortunatly I find myself exploiting this a bit too often and it's definatly not good for my health. I know I should be trying to normalize my circadian rythm, but at least I'm not choking the time I actually do sleep.

[zoocrewphoto]

my gut instinct is too agree with you that i should stay on cpap because of the clear risks assocaited with OSA, but my logical mind finds it difficult to reconcile the lack of data specifically showing that CPAP mitigates these risks. It clearly improves surrogate markers like AHI/ 02 saturation etc but that doesn’t necessarily correlate to a reduced risk of stroke/heart attack. My view is that just because i can do the CPAP does not mean i should if there is no definitive evidence for a benefit in clinically relevant direct endpoints.
e.g. from what i read, CPAP does not convincingly prevent high blood pressure although it may reduce the severity by a marginal degree e.g. 1-2 mmHg

My blood pressure has improved a LOT since I started cpap. And if I skip it or have a bad night, it goes back to pre-cpap levels. Without cpap, and without medication, it was typically in the 170s over 100-106. With 3 medications, it was down to the 150s. With medication and cpap, it is usually in the 130s, and has dipped as low as 109. Before cpap, I never registered anything below 140 with my daily readings.


I am also a night owl, typically going to bed between 4 and 6am. That has not changed with cpap. When I travel, I normally have trouble sleeping in hotels at earlier times, and that has improved. I think the cpap helps me sleep better. But at home, I still stay up late and sleep late. I feel better that way.

[Pugsy]

Welcome to the forum.

I just wanted to comment on your Pilairo issues. What you are describing seems to be fairly common with that mask.
The one size fits all headgear doesn't fit perfectly on every head. Simply put it is too tight when worn where the pictures show it to be worn. It was too tight for me and I am a small woman. When I wore it where the pictures show I woke up to a nose so sore I thought I had ran into someone's fist and I have been using nasal pillow mask for well over 3 years now and never had a nose that sore. The Pilairo is simply too tight for some people. If you like the mask well enough to modify it and add a bit more length to the head strap then it won't kill the nose.
Or if you like the nasal pillow over all and just can't get the Pilairo to not hurt the nose you might consider trying a different nasal pillow mask.

I was able to use the Pilairo by sliding that strap down so that it was more level with my ears and not so much on the crown area. If it displaces the tip of the nose at all then it is too tight. I still prefer the Swift FX or Aloha nasal pillow mask over the Pilairo though mainly because of that strap issue.

[jen4700]

Welcome!

It takes weeks, maybe months, to feel the benefits of proper CPAP therapy. You are off to a great start.

I also felt more tired after starting CPAP. I posted here and learned about sleep debt. I just think your body now trusts the sleep it is getting. I used to stay up late because - consciously or unconsciously - I did want to go to sleep. I knew my sleep would not be restful. I've also learned over the last six months that I need more sleep each night than I thought I did. I used to sleep about 6 hours a night. Now I need at least 8, sometimes 9, hours to be well rested.

You should target an AHI under 5. Are you using your machine on auto? What top and bottom pressures? There are A LOT of experts here you can help you fine-tune your pressures.

I'd say give it two solid months of 100% compliance. Then go off the machine for a week. Then see how you feel. See what your wife says about your mood. I bet you'll find that you will WANT to go back on CPAP.