New APAP user looking for reassurance

[gazvanz]

Hi!

I've been lurking around these forums for about a week, and have been reading lots - thank you for the tips and advice I've already received. It has really helped me a lot.

I will try not to write a novel - I promise! - but I will try to give us much context as I think you might need.

My background:
I am a 46 year old male.
I have often felt tired (need for daytime naps). Pretty bad brain fog.
I have always struggled with concentration (Psych Doc suspected ADHD in 2004, but I never really followed up on it after being told I might have it).
I have always found in difficult to lose weight, since finishing high school. Currently BMI is >35, even though I eat reasonably well.
I do moderate exercise - mostly fast walking, but sometimes some weights (I need to get back into this!).
Docs in the past said probably have a metabolic disorder.
Fatty liver for at least 20 years.
I snore like a bear!
I have a thick and short neck.
I sometimes have a short temper and easily frustrated by small things.
I feel pressure in my head when I experience frustration or anxiety.
I have GERD (I can control it by eating less of the things that aggravate it) - was on Nexium for a few years to control it, until another doctor recommended I come off of it.
I currently take 200mg of Lamotrigine for mild bipolar disorder.
Deviated septum and enlarged tongue / excess soft tissue at the back of my tongue.
When I sleep I have the feeling like I am choking on my tongue - feel like something is stuck in my mouth, and it is quite a stressful thing.
Sometimes I wake up after, I guess an OSA event, gasping for air, but it really doesn't happen too often.
I mostly side sleep, but do roll onto my back sometimes. I usually toss-and-turn left to right most of the night.
I dream a lot - often the feeling is like I didn't really sleep much, and the quality of my sleep is bad. It feels like I am half awake all night.
Frequent night time urination for the past few years. Average 2 to 3 times, but can be up to 4.
I try to get at least 6.5 to 7 hours sleep.
Currently, I am living in China with my family - we moved here 5 years ago as part of my job. I go to Hong Kong to see my doctors because in mainland China it is difficult for me to communicate - plus the Chinese healthcare system is interesting, to say the least...

My Sleep Test:
So based on many of the above conditions, I decided to investigate a little more.
In August 2012, after a visit to my cardiologist, he suspected Sleep Apnea, and recommended a Sleep Study.
ResMed came to my hotel room in Hong Kong, hooked me up, and left me (so basically a home test), but there were lots of sensors. It took around 2 hours to get me wired up!

The results from that test in Aug 2012:
RDI was 7.0/h (how does it relate to AHI?)
There were a total of 57 Apnea + Hypopnea events
50 Oxygen Desaturation events
I snored for 36% of my sleep
The mean SpO2 was 92.9%
The lowest SpO2 was 85%
The longest OA event was 32.8 seconds
The longest Hypopnea event was 75.4 seconds
REM sleep was normal at 25.3%
Total Arousals were 74, with an index of 9.1 (21 were Hypopnea, 27 were RERA, 9 were Apnea, plus some others)
No central or mixed Apnea events

The sleep study test conclusion was:
Satisfactory PSG study. There was evidence of a Mild degree of OSA.

My cardiologist said it was up to me if I wanted to try CPAP therapy, but at the time I didn't like the idea of sleeping with a mask. He suggested another path was to speak to a psychiatrist and see if there were any mental health issues to consider...

So, I did that, and I got an almost instant diagnosis for bi-polar disorder. We experimented with some different medication over the past 3 years, and I even had a try with Ritalin for a short while to try to fix the suspected ADHD symptoms. I realise doctors don't have all the answers, and we must take some control of our own journey when it comes to getting to the bottom of a ton of related or unrelated conditions.

The medication did calm me down a bit - it sort of relieved some pressure in my frontal lobe. But not enough to really say it has been effective. I don't feel any different on this medicine, and I still think a lot of my mental symptoms are closer to ADHD than Bi-Polar Disorder, but, I digress...

Recently:
For the past three years I have been fighting with myself. I want to get to the bottom of these issues. I truly believe that fixing my sleep will start me on the road to a better life. I have a very supportive family, and we all need each other.

A few weeks ago I was back in Hong Kong to see my doctor about a lingering lung infection that has finally gone away. I also mentioned that I am still not sleeping well, and he suggested I consider that Sleep Apnea - albeit mild when tested 3 years ago - could be part of the problem. He also suggested to get the ENT to take a look to see if there was a reason I get a lot of nasal infections - diagnosis 2 weeks ago: deviated septum and the tongue issue. ENT said I will have a problem with CPAP because of my deviated septum, and I should consider surgery, but it might take several procedures and still not work! No thanks - not for me, at this stage!

The same day, I went to see my cardiologist, and he pulled up my Sleep Study report, and said, well maybe your Sleep Apnea has worsened over the past 3 years. He suggested to try CPAP without another Sleep Study to save some money. The system is different here and complicated for foreigners, so I don't have insurance, and I have been paying for healthcare directly.

He recommended to rent a machine first to see if I could get on with it. So I did that - I got a "brick", took it home, and found I could tolerate it. But it didn't give me any data feedback. The medical supplier set the machine from 4 - 18 pressure (APAP machine), and sent me on my way. Cost to buy it if I decide to stick with... USD $2400, thanks for coming!

...and then I found this forum.

So after several days spent researching and learning from you guys, I felt more informed about my situation, and decided to buy a machine, and just go for it! The great thing about living in China is that it's really easy to get stuff! I found a medical supplier online, who shipped a machine to me overnight, threw in a heated pipe for free, and a mask! Total cost: USD $783. Sometimes we have to be careful here not to get refurbished products (it happens a lot), but these guys checked out ok, and the machine is wonderful, as was the service. I added the equipment to my profile below.

Even with my deviated septum, I opted for a nasal pillows mask, and honestly it's fine so far. I am still getting used to having something on and around my face, but I'm pretty sure it won't be a problem for me. Also, I am totally committed to this...

The Past Few Days:
I installed SleepyHead. I got the clinical manual for my machine. I read lots and lots here to the point that I feel I understand what I need to do to embark on this journey (even though I am a newbie!).

Firstly, I don't expect overnight miracles. In fact, I don't know what to expect. It's a journey, as I said, so I have told myself to commit to this journey.

My situation as a beginner is also different, as I don't have anyone really following what I am doing. It's more of a "try this, and see how you go" approach. I'm ok with that. I will report my findings back to my doctors, just to keep them in the loop.

So far, so good. I am experimenting with the settings. I set the pressure range currently from 5 - 12. I am using an EPR of 3, full time.

The results after the first few nights, as reported by SleepyHead:
AHI 0.00
Average Pressure: 7.5
Maximum Pressure: 10.38
90% Pressure: 8.96

However, my compulsive nature is to look for some reassurance that I am doing this right! The stats are good, and that's great. Maybe it will change over the next few week, but if I keep getting AHI's of 0.00, I should be happy right? Something inside of me wants to conduct my own sleep study - maybe I set the pressure to a low fixed pressure just to see if I can record some Apnea events (as an experiment). Or am I crazy to even bother?!

Perhaps my OSA is still mild, therefore my results are more or less expected? I definitely can't really afford to get another sleep study done, so I am seeking your advice or assurance about what I am doing. I don't expect this to necessarily "cure" me, and I will continue to work on other aspects of my health. I guess I am just asking if you think that based on the info I have presented here, if you think I should stick with CPAP (APAP) therapy, especially because my benchmark is a 3+ year old sleep study that concluded mild OSA.

Should my symptoms and this old report be enough for me to justify the use of CPAP therapy?

Thanks in advance, and sorry for the long post!

[PoolQ]

Okay you are OA and hypopnea so the machine you have is great for those. Your AHI is ZERO now so it is working. Your pressure does indeed change during your sleep so it is the machine that is stopping your apneas. No complaints about your quality of sleep so my guess is that this is doing well.

For me at least once I got over the big issues, the small ones started being noticed. Don't be surprised if some other things pop up-exhale pressure, humidity, temperature.... they may or may not.

It sounds like you are doing fine, how is your sleep quality? Feeling rested? getting more sleep? mind fog?....

[gazvanz]

It sounds like you are doing fine, how is your sleep quality? Feeling rested? getting more sleep? mind fog?....

My sleep quality is a little better. Yesterday I had a better day, and got many things done (I went into the office - it's been a problem lately) - but maybe there is an adrenaline rush going on at the moment. Mind fog was a little less, and I have been waking up naturally, instead of being dragged out of my bed to the breakfast table

So far I haven't felt the need to take a nap during the day, for the past few days, but I am not sure I would say I am totally rested yet. I only got up once last night - at 5AM, so that's an improvement. Also, I am still getting used to the machine. Exhaling is still a little challenging, and the feeling of not quite getting enough air, feels a bit odd.

I still feel like I am dreaming all night long in a sort of almost awake state. I am not sure how to explain this any better - is it a sign of good or bad sleep?

[herefishy]

I think you are doing wonderful! Few of us were so trouble free in adjusting to the therapy, and it sounds like you are actually getting benefits already. Sit back, relax, and enjoy the ride. Don't get caught up in statistics, it's the way you feel that's the ultimate goal.

[LSAT]

A constant 0.0 AHI is very unusual...especially for a new CPAP user. Just to make sure, I would pull the plug on the machine...wait a minute...and replug it. This will reboot the unit just like you do with your computer occasionally. Congratulations on your early seccess.

[gazvanz]

A constant 0.0 AHI is very unusual...especially for a new CPAP user. Just to make sure, I would pull the plug on the machine...wait a minute...and replug it. This will reboot the unit just like you do with your computer occasionally. Congratulations on your early seccess.

Thank you. I will do that just in case

[gazvanz]

I think you are doing wonderful! Few of us were so trouble free in adjusting to the therapy, and it sounds like you are actually getting benefits already. Sit back, relax, and enjoy the ride. Don't get caught up in statistics, it's the way you feel that's the ultimate goal.

Great advice. Thank you for your input, it really helps me a lot. I guess my big concern is that it might be counterproductive to embark on a lifetime of CPAP therapy, if my numbers were low. But I agree, it's how I feel at the end of the day (or the start!), so I will monitor my progress.

[Pugsy]

You mention a 90% pressure number which means at or below for 90% of the time...is this a Respironics machine? If it is then the test pressure probes will be influencing the 90% numbers a bit.

The fact that the machine increases the pressure at all means it is finding something it wants to fight...it can't tell us what it is preventing (though I understand sometimes wanting to know) and in terms of AHI it can only tell us what it didn't prevent.
If it didn't think it was sensing some sort of airway air flow reduction it wouldn't be increasing the pressure.

Any impact on the bathroom breaks in the middle of the night?

[gazvanz]

You mention a 90% pressure number which means at or below for 90% of the time...is this a Respironics machine? If it is then the test pressure probes will be influencing the 90% numbers a bit.

The fact that the machine increases the pressure at all means it is finding something it wants to fight...it can't tell us what it is preventing (though I understand sometimes wanting to know) and in terms of AHI it can only tell us what it didn't prevent.
If it didn't think it was sensing some sort of airway air flow reduction it wouldn't be increasing the pressure.

Any impact on the bathroom breaks in the middle of the night?

It is a ResMed AirSense 10 Autoset. The numbers came from SleepyHead.

For the first time in ages I didn't need to use the bathroom until 5am this morning, although I definitely remember waking a few times during the night - I felt quite aware of that. I will be so happy if I can eventually get through the night, and fight off the daytime fog and be able to concentrate. It's so difficult to live and work like this. I guess I found ways to cope over the years (barely), but certainly can't be healthy!

Thanks for your input

[Pugsy]

Nocturia is a common symptom of OSA. There's a long explanation for it but the short version is the heart under goes stress during apnea events and produces a stress hormone and when that hormone gets to the kidneys then the kidneys go into over drive and when kidneys work hard they produce urine and the end result is we have to get up an pee multiple times during the night.

Not having to get up and pee 4 or 5 times a night was probably the first symptom that went away and told me that this therapy was working.
To be honest...if that was the only unwanted symptom to go away I would still think it is well worth it.

I always sort of hold my breath when I ask the nocturia relief question to the guys because we all know that prostrate issues can also cause nocturia.

Other than the nocturia going away pretty much immediately and the lack of O2 deprivation killer headaches in the AM....I didn't have marked improvement immediately. Those 2 things went away in the first couple of weeks but the other stuff like fatigue and excessive daytime sleepiness took a lot longer to improve.

One thing that bugged me for several weeks was just the having the mask on and my brain would wake me up several times a night just to prod me with "hey....do you know there is an alien on your nose"
And I was totally happy with my mask choice back then....it was the idea that there was anything/something attached to me that made things foreign.

Frequent wake ups for any reason will really impact how we feel the next day. Sometimes there is a reason like a leak or discomfort from something that can be worked on but sometimes we just wake up for no reason other than the brain doing the "hey dude" thing.
We work on what we can if we can figure out something to work on and the other stuff we simply have to "give it time" and there's a lot of truth in the "give it time" thing. Not what we want to hear and I was as guilty as the next person in wanting to have all my unwanted symptoms to go away immediately with the cpap therapy. Unfortunately good quality restorative sleep is so much more than just a nice low AHI number. I wish it were that simple because getting a nice low AHI is actually fairly easy to accomplish.

So what do we do when we have good reports (at least on paper) and we still don't feel the "miracle" that some lucky people feel? Well we have to "give it time" for sure but while we give it time we can use that time to investigate other potential culprits for causing some or part of those unwanted symptoms.

For myself my main culprits were hours of sleep and number of wake ups in those hours of sleep.
So look at those things first...without good quality sleep it gets real hard for the cpap machine to work its magic.
Some things to look at..
Hours of sleep
Fragmented sleep
Meds...side effects that could make sleep worse or cause fatigue, et
Sleep hygiene
Other health conditions impacting sleep or how we fee
Bed comfort
Mask issues
and so on

Your ResMed machine doesn't do the test probes that the Respironics machines do so the fact that it is increasing the pressure at all is much more telling....you have something going on that the machine wants to try to fix...we may not be able to know what all it is preventing but it is working at fixing something and if you didn't need it to fix something it wouldn't be changing that minimum pressure

Give yourself some time and use that time to investigate other potential culprits...never hurts to make use of the time that you are going to have to go through anyway.
It will get better....I promise...the fact that the nocturia has greatly reduce tells me that its working and while we all want "immediate" fix...we didn't get this way overnight and this cpap machine only can fix the sleep apnea related stuff because it can't fix a problem unrelated to sleep apnea.

[poppi2]

For the first 43 years of our marriage, my poor wife had to endure my terrible snoring. Other than a few rib pokes, she never complained. For the last 5 years, she has admitted that my not snoring has been great. That is one reason I continue. Also, I can count on my fingers the total number of times I've taken a nighttime bathroom break since therapy was dialed in.

[sleepylynn]

Not having to get up and pee 4 or 5 times a night was probably the first symptom that went away and told me that this therapy was working.
To be honest...if that was the only unwanted symptom to go away I would still think it is well worth it.

This was fixed for me on my FIRST NIGHT - even before I'd switched to auto mode and dialed my pressure into a better range. I'd always thought I just had overactive bladder, but the nighttime bathroom breaks have completely stopped since starting CPAP. As Pugsy said - that alone makes the whole thing worth it.

Gazvanz - I'm a newbie, too, so I don't have any great advice for you. Just some general support and encouragement to hang in there, as others have recommended. Everyone adapts at their own pace, and you may just need more time.

[gazvanz]

Nocturia is a common symptom of OSA. There's a long explanation for it but the short version is the heart under goes stress during apnea events and produces a stress hormone and when that hormone gets to the kidneys then the kidneys go into over drive and when kidneys work hard they produce urine and the end result is we have to get up an pee multiple times during the night.

Hi Pugsy. Wow! Thank you so much for the amazing info

Not having to get up and pee 4 or 5 times a night was probably the first symptom that went away and told me that this therapy was working.
To be honest...if that was the only unwanted symptom to go away I would still think it is well worth it.

I only needed to pee once at around 4:40am. I can see how this alone is a huge improvement.

Other than the nocturia going away pretty much immediately and the lack of O2 deprivation killer headaches in the AM....I didn't have marked improvement immediately. Those 2 things went away in the first couple of weeks but the other stuff like fatigue and excessive daytime sleepiness took a lot longer to improve.

This is what I am experiencing now too. The wake-up headache is greatly reduced, and I am getting out of bed. I'm not bothering to set an alarm too

One thing that bugged me for several weeks was just the having the mask on and my brain would wake me up several times a night just to prod me with "hey....do you know there is an alien on your nose"
And I was totally happy with my mask choice back then....it was the idea that there was anything/something attached to me that made things foreign.

Indeed! It was one of my greatest fears, and probably a reason I didn't bother to start therapy in 2012. My 6 year old daughter thinks it looks cool though I ordered and received an AirFit P10 in time for sleeping last night. When the delivery guy arrived at 7:30pm, I was pretty excited. It is so light, and the fit is great. I tried the medium nasal pillows, but I might also try the large tonight. The large seemed to collapse a bit on one side, but I was using large in my Swift FX. Something to experiment with...

Frequent wake ups for any reason will really impact how we feel the next day. Sometimes there is a reason like a leak or discomfort from something that can be worked on but sometimes we just wake up for no reason other than the brain doing the "hey dude" thing.

Yes, for me I think it'll take a while until I am not frequently waking up in one way or another. I guess my body has got used to it over the years.

Unfortunately good quality restorative sleep is so much more than just a nice low AHI number. I wish it were that simple because getting a nice low AHI is actually fairly easy to accomplish.

You really have helped me a lot. I understand now that sleep disorder symptoms are wide and varied, and CPAP can provide the relief I need (assuming no other underlying medical issues).

Bed comfort
Mask issues
and so on

I have been experimenting with my pillow(s). What I have discovered is that my preferred setup of 2 luxurious (not sure how else to describe them - like hotel pillows ) is not so comfortable now. The main issue being that gravity no longer works in my favour. In the past it helped with Acid Reflux, but now it causes my jaw to drop and my mouth to open enough to expel the air. So I switched to a flatter memory foam pillow around 6:30 this morning, and the jaw / mouth issue improved significantly.

Your ResMed machine doesn't do the test probes that the Respironics machines do so the fact that it is increasing the pressure at all is much more telling....you have something going on that the machine wants to try to fix...we may not be able to know what all it is preventing but it is working at fixing something and if you didn't need it to fix something it wouldn't be changing that minimum pressure

This is my pressure graph from last night. I had my machine set to a max of 12, and it hit 12, so I will increase the maximum over the next few nights and observe.

Give yourself some time and use that time to investigate other potential culprits...never hurts to make use of the time that you are going to have to go through anyway.
It will get better....I promise...the fact that the nocturia has greatly reduce tells me that its working and while we all want "immediate" fix...we didn't get this way overnight and this cpap machine only can fix the sleep apnea related stuff because it can't fix a problem unrelated to sleep apnea.

Again, thank you so much

[gazvanz]

Gazvanz - I'm a newbie, too, so I don't have any great advice for you. Just some general support and encouragement to hang in there, as others have recommended. Everyone adapts at their own pace, and you may just need more time.

This is a very supportive community. I do appreciate it a lot

[gazvanz]

For the first 43 years of our marriage, my poor wife had to endure my terrible snoring. Other than a few rib pokes, she never complained. For the last 5 years, she has admitted that my not snoring has been great. That is one reason I continue. Also, I can count on my fingers the total number of times I've taken a nighttime bathroom break since therapy was dialed in.

I'm so happy to hear this. My first wife used to shout at me loudly in the middle of the night. I was frightened to sleep. It was around 20 years ago, and I got fitted for a dental device, but I couldn't tolerate it. Finally she couldn't tolerate me I am glad your wife has been great about it. My wife also doesn't complain at all. She just wants me to be healthy and happy.

Although, I have also received a few kicks in the back of airplane seats during long flights. I get a lot of nasal infections, and on a flight to Australia I overhead a passenger say I think that guy has more snot than brain in his head I have a thick skin, so it didn't bother me too much, but sometimes a bit of empathy goes a long way