Is CPAP treatment that good or something is off with me?

[DayWalker]

Hi there,

Long story short: I was on a journey to find out what causes all my health 'issue' i.e. mild cystoid macular edema (only <10% increase in retinal thickness but still causing a drop in visual acuity to 0.9-0.95), as my doctors were unable/unwilling to properly diagnose me and treat the underlying cause, so I ended up at a sleep clinic on my own. We've been through the whole myriad of 'theories' suggested by my ophthalmologists to no avail... None of these theories held water nor their respective treatments gave any permanent improvement to my left eye retinal inflammation. The edema disappeared only to reappear in a month, which is not in line with any of the diagnoses i.e. diabetes, kidney issues, heart issues, etc. I do not have those, although I do have insulin resistance, my a1c is below 6% anyways, so this could not be the case for the active retinopathy i.e. increased blood sugar causing hypoxia in the retina and vessel damage. I even did a 'blind' consultation with different ophthalmologists and gave them OCT scans from different dates (a month apart) to see what they will say and one would say 'completely healthy eyes', the other will say DME on the next OCT scan, the third would say I see a bit of abnormality in the topography but nothing abnormal for your age, don't bother.... It has been a circus to put it lightly, thus I started reading a lot of materials as of what could cause edema/leakage and the increased VEGF activity, so I've found a number of articles about retinal hypoxia and apnea. Several doctors claim that the increased heart rate, increased VEGF activity, and vessel leakage was most likely due to sleep apnea and/or OHS and the decreased SpO2 further compounds the issue with neovascularisation. So here we go...

After sleeping strapped with a device for a few days I started a CPAP treatment due to AHI of 26.5 on manual reading and over 35 via software automatic rating, according to the pulmonologist. Prior to starting therapy I also had extremely low saturation during the night with no normal saturation recovery until the sleep is interrupted (below or around 80%).

That being said, I was given Airsense 10 and a full mask to try, which I changed to nasal after 3 days. The first few days it was a challenge, although I felt 'overwhelmed' with energy. Then I discovered SleepyHead and Oscar and started digging into my results as I no longer have this energy rush as the first couple of days and I am questioning my initial readings during the preliminary testing.

Basically, since I got the machine (2-3 weeks time) my AHI with it has been:

Day / AHI Index
4/24 -> 3.15
4/25 -> 0.71
4/26 -> 1.81
4/27 -> 1.01
4/28 -> 0.31
4/29 -> 0.98
4/30 -> 0.82
5/1 -> 1.37
5/2 -> 0.89
5/3 -> 0.79
5/4 -> 0.39
5/5 -> 1.30
5/6 -> 1.57
5/7 -> 0.69
5/8 -> 1.70
5/9 -> 0.94
5/10 -> 0.00
5/11 -> 0.57
5/12 -> 0.43

After dealing with protocol doctors for 2 years and with so many wrong therapies and up to 20 pills per day, I am doubting anything now. 

I would like to know if these results seem feasible to you, given the therapy. Can you just drop AHI from around 30 to 0.0-1.5 effectively overnight? Is the CPAP therapy that good? Is there anyone here who has been diagnosed with high AHI, then started therapy and their index dropped to under 5 overnight?

I am yet to go do my retinal scanner in a few days, and I will have a better understanding if my retinas are deactivated now or I am still chasing windmills.. as I am wondering if I am on the right path with this therapy or not... What do you think?

[Gideon]

Welcome to the forum.
Those are excellent numbers.
It is uncommon to see such good numbers with the initial settings, though after optimizing therapy it is not uncommon. We have examples where a change in therapy has a drop of 30 ahi points literally overnight though the optimization process dies typically take longer.

Here we do like to see OSCAR daily charts so we can see what is going on.

I do suggest one change for you since you have identified oxygen desats to be related, as the least likely, to your optical issues. That is to get a recording oximeter to determine your oxygen sat levels. This is also good to have on hand in these COVID-19 times. OSCARs Oximetry wizard discussed compatible models.

[DayWalker]

Hi Fred,

Thank you for your reply. I will borrow a nonin 3150 from my pulmonologist today and see how it goes in regards to SpO2 levels overnight. I tried to find compatible oximeters on ebay but everything seems to be sold out except some Chinese seller. i.e. the CMS50I and I also see 2 different models for this one white and one blue. Anyways, I will look for one if it becomes available. If you can point me which is the right one? Blue/White?

As for the OSCAR daily charts, please see attached from last night. 

I am still doubtful if this could be 'fixed' so easy but I guess the charts will shed some light....

[Gideon]

A couple questions. Why the gap 2230 to 0430?
And how do you feel, be critical.

On Oximeters, I have the 'F' model. I'll let the oximeter experts comment on the white vs blue. They are harder to find because iof the COVID-19 situation.

Flow Limits are driving your pressure changes. They are not bad, I like to see them a bit lower, but that is not too likely to happen. I'd have you experiment and decrease your EPR But I don't want anything that would potentially lower your oxygen levels.
While EPR is considered a comfort feature it also acts therapeutically and is keeping your flow limits in check, keeping them from being much larger. Strongly resist suggestions to alter this parameter.

On your oxygen levels, it would not hurt to see you daytime levels either, this is going back to the tie to your optical health

[DayWalker]

A very valid question... The gap is due to my working schedule. I am currently in Europe but I work on CST while I am still here and I need to keep my working hours closer to my company's, so my sleep is sometimes during the day, sometimes from 5AM onwards... pretty much whenever... it happens. Not the healthiest routine but it has been an ongoing trend for the last 10 years on and off while I am here...

In regards to EPR, I guess I can lower it and see how that goes. Any recommendations on which setting? In any case, I am still unaware of my oxygen levels at night (not until a few days from now, when I get my nightly readings). You may be onto something since I have been thinking that ERP could be causing a bit of discomfort.

As for the SpO2, I can also carry the nonin during the day and see how that goes but spot checks from my Samsung Galaxy phone show SpO2 between 94 and 99 (while it mostly stays at 95-96) throughout the day and pulse in the 60s.

FYI: I removed my ramp-up feature since it was driving me nuts. I know some see it as a comfort feature, I don't, it feels like it is sucking the air out of me i.e. my muscles work harder to pump back and forth. The pressure was 4 to 20 before now I upped it 6 to 20 and from two night ago - 7-20 as otherwise, I feel like gasping... for air. In any case there is no difference in graphs... over the last 20 days as you can see..

This APAP I am using is temporary. I am renting it. I've got a BiPap VAUTO AirCurve 10 from ebay and someone will bring it to me in a month or so. I am not sure if it would make any difference in therapy, feature-wise, mode wise (APAP vs BiPap), etc

I just couldn't justify buying an AutoSense from here for 3000$ and bought a VAUTO from home for a fraction of that...

[Sleeprider]

I will add to Fred's comments, that your settings are what we would recommend for anyone with flow limitation, using a minimum pressure of 7.0 with EPR 3. It seems you are very comfortable with your therapy and it is very effective with low AHI. If the pressure changes are disruptive a higher starting pressure closer to your median pressure will result in smaller pressure swings, but other than that looks great.

[DayWalker]

Sleeprider,

I have no issue upping the minimum pressure to my median pressure. As noted I started with RampUp and setting 4-20, which was nightmare. I upped it to 6 then to 7 and I can go even to 9. Since I upped it to 7, I can fall asleep in 3-4 minutes. When it was 4, I would stay awake for an hour. 

In your opinion is it possible to see such drastic change i.e. diagnosed with AHI 26.5 manual and 30+ automatic and then dropping to under immediately after starting tharpy?

[slowriter]

In regards to EPR, I guess I can lower it and see how that goes. Any recommendations on which setting?

I'm pretty sure bonjour strongly suggested you should NOT lower the EPR, because it helps deal with your flow limitations (and should also be more comfortable).

This APAP I am using is temporary. I am renting it. I've got a BiPap VAUTO AirCurve 10 from ebay and someone will bring it to me in a month or so. I am not sure if it would make any difference in therapy, feature-wise, mode wise (APAP vs BiPap), etc

That's a great machine, and will only give you more flexibility. Good call.

[Sleeprider]

Sleeprider,

I have no issue upping the minimum pressure to my median pressure. As noted I started with RampUp and setting 4-20, which was nightmare. I upped it to 6 then to 7 and I can go even to 9. Since I upped it to 7, I can fall asleep in 3-4 minutes. When it was 4, I would stay awake for an hour. 

In your opinion is it possible to see such drastic change i.e. diagnosed with AHI 26.5 manual and 30+ automatic and then dropping to under immediately after starting tharpy?

Seeing significant improvement in results is the rule not the exception.  Results vary widely, but I remember starting auto CPAP over 12 years ago after a sleep test diagnosed very severe sleep apnea with about 70 events per hour and immediately having 2-3 AHI with a Philips M-Series Auto. Using data (EncoreViewer) I was able to get that to similar low levels.  So we often see individuals on this forum with much higher AHI than  you obtain very good results, and it is especially easy to do with the Resmed Airsense 10 Autoset.  There is considerable variation in results, tolerance to CPAP and different efficacy from different machines. Also we can help members with positional apnea issues and complex and central apnea to optimize results and get the therapy or aids they need.  Your results are very good, but they are not the exception.  I think this forum often attracts people that are having problems with their therapy, so we tend to see more problems, than immediate success stories.

[DayWalker]

Sleeprider.

Thank you for the reassurance. I know that I sound distrustful but after the last two years of 'b&lsh&t treatment' I am doubting anything and everything now. I am also glad to hear that my APAP results are the norm, not the exception.

You have to understand where this is coming from though. ~2 years ago I went to an endocrinologist due to sleep issues (insomnia), feeling hot, and essentially maintaining high blood sugar. I was diagnosed with insulin resistance due to being overweight and 'other factors' i.e. my work/sleep habits and they decided to call it and treat it as diabetes type 2 i.e. maximum dosage metformin (3000mg), then my triglycerides were at (not above) the high mark and they decided to slap more pills to lower that too, then it was that my BP was 130/85 and they decided to lower even that with 3 pills, then my TSH was a bit high (10% above high mark) and they decided to add some Thyroxine for that.... then I was sent on a routine exam to an ophthalmologist (3 months into the 'therapy') and they saw a swelling i.e. the Macular Edema. First, they called it cystoid macular edema, but for the reason unknown to me later they decided to change the classification to diabetic macular edema. It has been 2 years of Anti-VEGF intravitreal injections since then with ups and downs with no real resolution. My a1c has been ~6% for that whole time when we were treating imaginary lipidemia, diabetes, high blood pressure, and retinopathy, all of which are non-existing, but I guess it pays well from my insurance to maintain such patient. The problem I went for was resolved i.e. blood sugar lowered in 8 weeks from 8.4% to 5.9% and everything else that followed was induced by the treatment and medicine. Well, from 19 pills a day, now I am taking NONE. I decided this ain't helping me, after feeling worse compared to before I started them, so I started reading. Mind you, I am not a doctor, but I am quite familiar with a lot of topics and I have an anesthesiologist in the house who helps, reads, explains, and leads me to more information.

Anyways Metformin was causing hypoxia, sufficiently to swing me towards developing this edema in the first place. I am not saying this is the underlying cause... just another trigger. Not to mention that I had mild-to-moderate lactate acidosis episodes by the book with all symptoms and I was told it is ok and it is not LA. I will skip the part where I had persistent diarrhea, paper skin, and abdominal pain... All in all the blood sugar wasn't the underlying cause obviously, it is that only Metformin has changed the balance and helped for this Edema to develop in the first place, while the issue for all this was somewhere else. Prior to the treatment, I had no visual acuity issues. Not to mention that the 3 heart medications were causing further hypoxia with too low blood pressure and bradycardias and periods of tachycardias thus further worsening the neovascularization.

Now I got down to 0 pills ~2 months ago (nor medicine or supplements), and my BP is normal, my a1c is normal, my Cholesterol Panel is normal and my macular edema has improved somehow, but then an episode occurred in April with no reason 2 weeks after a perfect OCT scan. That is very atypical for either DMA or CMA. It is typical for a hypertonic patient, but again, normal BP and there were no cotton wool spots that suggest hypertonia. At that time I knew that this issue was not only medically induced by the BP medications and metformin, but there also is another issue too, so I got tested for sleep apnea. My guide was that after a 'longer' i.e. 11-12 hours sleep, I wake up and can barely focus... It was taking me up to 2 hours for my eyes to start adjusting. The rest you know already...

I am just hoping I got to the bottom of this otherwise I would not make sense at all if the sleep apnea and the low saturations at night are not the root cause of this.

By the way, since starting the APAP treatment, the visual acuity on my left eye is 1. A coincidence? We will see at the next OCT scan...