Does treatment make sense for me and how to get started

[halloweenharry]

First off a little summary of my diagnosis so far:

I started the whole process of getting diagnosed about 4 years ago while morbidly obese at 300lbs at 5'6 and did one of those home tests provided by a local clinic, which came back with an AHI of 16. They then asked me to come in for a sleep test in the lab after which the doc told me to just lose some weight, according to him it was not necessary to treat. I dont actually know what the AHI was on that in-lab test. I took him at his word and tried to lose weight.

Fast forward to 2017, I managed to lose about 45lbs and I was feeling a bit better (no more extreme night sweats) but was still really exhausted after a full night of sleep and occasionally woke up with headaches. I decided to get retested and came up with an AHI of 5.7. Again I was told to just keep losing weight, treatment is not necessary. Here are the results of that sleep test: https://imgur.com/a/rnBfZ

Since then, Ive tried hard to lose more weight but Ive been stuck. I keep losing and regaining the same ~10lbs. I exercise 3-5 times a week (either an hour of cardio or body weight workout) and my nutrition is mostly low carb-ish although i still have off days where I will overeat which seems to keep me from losing more weight. In my experience so far, these bad days seem to be correlated to how exhausted i am or how good or bad my sleep is.

At this point Ive given up on being treated by a doc and would be willing to try handling the treatment myself, preferrably with an APAP.

1) Does it make sense to try an APAP given these numbers and symptoms?
2) If so, are there any resources on how to get started with this whole process from scratch? Like how to choose the right machine, the right interface, how to start treatment, how to dial in the pressure range, how to maintain it etc? Could use someone to point me in the right direction.

Thanks!

[Pugsy]

https://imgur.com/a/rnBfZ

Link to the sleep study report which I can't see in the first post but could via a back door way of getting there. Posting it in case others can't see it either.

To the OP here....that's a really borderline report.
What position do you normally need to sleep in? You are marginally worse on your back which is common.

[halloweenharry]

Thanks! Just fixed it

[halloweenharry]

I usually start out sleeping on my side and wake up either on my side or my back.

The AHI itself is not that bad but there are a lot of spontaneous arousals. Could that be explaining the issue?

[Pugsy]

Some questions for you so we can get a better handle on your overall history.

How many hours of sleep do you normally get?
Are those hours fragmented by a lot of wake ups? If so, any idea why?
Do you take any medications of any kind? If so, what?
Any other physical or mental health issues that could potentially impact sleep or how you feel?

Most definitely the spontaneous arousals can have a major impact on how we sleep thus how we feel.
BUT....cpap can only fix arousals related to airway issues...it can't fix spontaneous arousals no matter how much we want it to.
So I am not so sure that cpap is going to help your sleep and other issues.
The O2 drops look more like loss of contact artifacts so that doesn't alarm me.

Snoring index isn't horrible either...snoring itself even without further airway issues can disrupt sleep.

[chunkyfrog]

You say your AHI was 16.
Well, mine was 13, and apap has changed my life!
Mild apnea can make your life miserable.
Obesity is not always the "cause" of apnea, but can make it worse.
Treating apnea can make weight loss easier--but it still takes effort.

[Pugsy]

You say your AHI was 16.
Well, mine was 13, and apap has changed my life!
Mild apnea can make your life miserable.
Obesity is not always the "cause" of apnea, but can make it worse.
Treating apnea can make weight loss easier--but it still takes effort.

It's not 16 now...he's lost weight and the most recent sleep study shows AHI less than 6.

[halloweenharry]

How many hours of sleep do you normally get?

Between 7 and 9 hours, on average I'd say close to 8.

Are those hours fragmented by a lot of wake ups? If so, any idea why?

Usually no. Occasionally, I'll get up to pee in the middle of the night but that's maybe once or twice a month.

Do you take any medications of any kind? If so, what?

I take metformin (off-label for weight loss) and I'm on testosterone replacement therapy.

Any other physical or mental health issues that could potentially impact sleep or how you feel?

Well I'm still quite overweight at ~255lbs @ 5'6 but since losing the first 45lbs, the associated issues like high blood pressure and pre-diabetes have improved. Other than that, I used to have severe depression and anxiety which has gotten a lot better since getting on TRT. Right now I feel pretty good aside from the almost constant fatigue. Occasional stress from work but nothing too crazy.

I've posted this sleep report to another forum before and there it was suggested that this may be UARS and those spontaneous arousals may be RERAs. What do you think? And if that could be it, do you think a APAP would make sense?

[Pugsy]

I've posted this sleep report to another forum before and there it was suggested that this may be UARS and those spontaneous arousals may be RERAs. What do you think? And if that could be it, do you think a APAP would make sense?

Spontaneous arousals aren't respiratory arousals....they aren't RERAs. Spontaneous means no known cause....RERAs are very obviously related to a reduction in air flow shown clearly on a sleep study of the air flow and then the arousal pops up right after it.

Now did this sleep lab actually separate a respiratory related arousal from spontaneous arousal.....???? It was a bit hard for me to get a picture of since it isn't in English.
Is there a Respiratory Disturbance Index or RERA number or index??

I have no idea if APAP will help or not but it won't hurt and we will be glad to walk you through the whole DIY process. Lots of people do it.
BUT.....APAP itself without close management isn't going to auto adjust optimally. It's designed for OSA...not UARS and certainly not going to do much when no snores or flow limitations are happening.

[halloweenharry]

Now did this sleep lab actually separate a respiratory related arousal from spontaneous arousal.....???? It was a bit hard for me to get a picture of since it isn't in English.
Is there a Respiratory Disturbance Index or RERA number or index??

It distinguishes between respiratory, motoric and spontaneous arousals here - first the total numbers over the whole sleep cycle, then the numbers per hour (index):


It seems to base that on what the report calls "pulse wave" - I'm guessing thats the sensor of the finger that measures heart rate and O2 sat?

Spontaneous arousals aren't respiratory arousals....they aren't RERAs. Spontaneous means no known cause....RERAs are very obviously related to a reduction in air flow shown clearly on a sleep study of the air flow and then the arousal pops up right after it.

I see. I'm just not sure how accurate those home tests are. Is it possible it's missing RERAs and misclassifying them as spontaneous? What else could be a spontaneous arousal caused by?

The O2 drops look more like loss of contact artifacts so that doesn't alarm me.

From what I can tell the machine seems to recognize those extreme drops as false readings and filters those out. But there are still some O2 drops in there with a minimum of 83%. Is that still within the normal range?

[Pugsy]

I see. I'm just not sure how accurate those home tests are. Is it possible it's missing RERAs and misclassifying them as spontaneous? What else could be a spontaneous arousal caused by?

Spontaneous arousal is anything other than respiratory. Dog barking, brain just deciding to wake up, wake up after end of REM cycle...anything other than respiratory. The list is miles long.
Home studies are obviously limited in the amount of data they gather depending on which kind of home study was done.
Some are more comprehensive than others.
Obviously I have no way to know just how many data channels were used.

What equipment did they stick on you? A nasal cannula I assume and obviously the pulse oximeter on your finger.
Did they have you wear some sort of chest or abdominal belt? Did you have any wires or leads or sticky things on your face or forehead arms and legs?

I need to go review the report to answer the 83% O2 question.

[Pugsy]

If I am understanding the O2 report correctly there was 1 time where the O2 went to 83% for a little over 5 minutes...I don't know how much alarm I would put to just one desat of that duration. It could have been something related to the positioning of the finger and maybe restricting the blood flow or something.
Sleep apnea event desats that are alarming are much more prolonged and more frequent.
Let me see if I can find you an example of a more alarming or definitive pulse ox graph. I don't have one handy and it may take a bit of time. If this were my report though...I wouldn't be alarmed from 1 event like this because it very well could be simply circulation in the finger related. Your overall pulse ox graph does NOT look like oxygen levels are a problem.

And I am someone who did have prolonged desats...mine went to 73% for 15 minutes and was below 88% for well over an hour.

[halloweenharry]

Thanks, I really appreciate you taking the time to look into this!

What equipment did they stick on you? A nasal cannula I assume and obviously the pulse oximeter on your finger.
Did they have you wear some sort of chest or abdominal belt? Did you have any wires or leads or sticky things on your face or forehead arms and legs?

- Nasal cannula
- Pulse oximeter
- A belt with the main device on it around the chest
- A belt around the abdomen
- No other leads or wires to face, forearms or legs

[Pugsy]

They didn't check for sleep status at all.
You have to know for sure if a person is asleep or not in the first place to measure or qualify any arousals. I have no idea how they came up with any sort of arousal reporting unless they were just relying on the air flow from the data the cannula in the nose offered.
Limited data sleep study.
Sounds like a type 3 study
http://freecpapadvice.com/home-sleep-tests

Sleep status reporting needs EEG leads stuck to the face and scalp. You didn't have those.

If we add in a potential UARS diagnosis...even the best most comprehensive sleep study isn't definitive....that's a whole other not so easy diagnosis to make unless an in lab sleep study is done with a Pes device
http://www.sleepmedicinecenters.com/Sle ... ceSyndrome

So all this brings us back to your original question....would it be worth it to go the DIY route with a cpap machine?
You feel like crap from something. We can't blame medication side effects or really anything else health wise so if it were me I would at least give it a try. It may or may not help. It does sound like you have some sort of sleep quality problem going on and if it is related to the airway in some fashion cpap very well could help. Now if you have poor crappy sleep from something else not airway related then it probably won't help. It is probably worth at least trying.

We can give you the guidance you need to do it yourself. It's not rocket science. People go the DIY route all the time.
A bit of a learning curve initially but it can be done.

[halloweenharry]

At this point I'm willing to try, not sure what else to rule out that would affect my sleep this consistently. Even though the report says I don't snore that much (maybe I had a good night or something) I've been told on multiple occasions that I snore quite loudly, and I've caught this on audio with my phone as well.

The only downside is the money lost on an APAP if it's not the answer but I suppose I can still sell it in that case.

I would really appreciate some advice on how to get started - any guide or something I can read up on? Not sure where to even begin.