[Treatment] I doubt my diagnosis.

[jato]

Hi,

First of all a big thank you to the board and those here. I have been lurking for quite some time in the background but not posting as I rarely like to bother people. I have read a lot of information, I utilised SleepyHead for the majority of my treatment (now Oscar) and constantly read here as I review my graphs. 

I am now over two years since having been *diagnosed* with sleep apnea but I trust the diagnosis now even less than I did at the time. 

I ended up being put in a sleep study due to excessive tiredness that had crept in over a period of a few years. With that tiredness came cognitive issues, irritability, day time head aches starting about 10AM and an inability to not nearly fall asleep in meetings being held only an hour after I woke up! Before the sleep study we spent twelve months on doing so many bloods and scans I lost count until finally I was sent for the study. We were trying to rule out the usual suspects like diabetes, vitamins, depress and all sorts of things that could impact sleep.

I have attached the results of the sleep study.

My takeaway honestly was "not sleep apnea" which was actually pretty exciting because at least it was one more thing ruled out and we could move on to finding the cause of my tiredness. However the Dr who referred me for the study referred me to a sleep Dr on the above report and that doctor DISAGREED with my assessment of the report and indicated that my numbers most certainly warranted CPAP treatment despite my pretend doctorate and self diagnosis to the contrary and as such since March 2017 I have been getting such treatment using a Phillips dream station which from what I can tell from my forum reading is not the worlds most amazing sleep machine but hey, it is what it is.

I tell you the above for context and also because I have never been entirely sure if the Dr who put me on the CPAP was not himself mistaken. I find myself wondering at times if everything I do in relation to this is pointless because I am on CPAP perhaps by accident.

At any rate, we reach now. I wanted to post some graphs that show where I am at currently with my last two nights of data and in addition, I have included a random night with a slightly higher than average AHI for me while treated and finally, a night I recorded my lowest AHI. The last two nights are representative of about the last month give or take with it occasionally higher.

I am hoping for the data those far smarter than me may be able to say conclusively "You do not have sleep apnea" or "you do and it is being treated about as well as it could be" or some variation. For instance all of my events might simply be garbage data fooling into me thinking I am successfully treating sleep apnea I do not have.

At some point when I started REALLY wondering if I had sleep apnea I reset the machine to its 4-20 spread which results in an average AHI of about 1.5-3 per night. My best results previously had me consistently under one with a pressure of 8+ but I do not want to go back to tuning the machine if at the end of the day everything I am doing is meaningless.

Ill work on getting the graphs posted tomorrow as I had them all in Imgur galleries (there are quite a few images, I like to be comprehensive!) but can not post links yet due to low post count and they might be hard to review if I just attach them all randomly to this post!

[DeepBreathing]

G'day Jato. Welcome to Apnea Board.

On the basis of the test results it looks like you do not have "obstructive sleep apnea syndrome". Your AHI comes out to about 3.0 (22 events over ~7 hours of sleep). The summary which quotes an AHI of 20 appears to be wrong. However AHI is by itself a pretty blunt instrument and other factors need to be considered. In particular the duration of events is important, and I notice you had one hypopnea of 78 seconds and many around 30 seconds or more (as best I can tell from the scan).

In your position I would have another sleep test in a facility, not a home test. There are plenty of clinics who will do this on a bulk-billing basis , though you would probably need your private insurance to cover the facility fee.

The other question which needs to be asked is "how do you feel now"? Are you still experiencing the symptoms, or have they cleared up? If the latter then something has made you better and if nothing else has changed then it must be the machine.

[Gideon]

Post your OSCAR daily charts. They will help us to give a better assessment.

[jato]

DeepBreathing

G'day Jato. Welcome to Apnea Board.

Thank you!

On the basis of the test results it looks like you do not have "obstructive sleep apnea syndrome". Your AHI comes out to about 3.0 (22 events over ~7 hours of sleep). The summary which quotes an AHI of 20 appears to be wrong.

This was very much my assessment at the time and has remained the issue every time I read it.

In your position I would have another sleep test in a facility, not a home test. There are plenty of clinics who will do this on a bulk-billing basis , though you would probably need your private insurance to cover the facility fee.

This is exactly what I have started to consider especially the more time I have spent dwelling on it. 

The other question which needs to be asked is "how do you feel now"? Are you still experiencing the symptoms, or have they cleared up? If the latter then something has made you better and if nothing else has changed then it must be the machine.

So this is the part that is doing my head in. I would have sworn up and down that it had helped "a little" but not really. That being said I recently had to take over a month off the CPAP on the demands of my ENT (I just recently had Sinus surgery for years long issues) and I ended up letting this become closer to three months. Things became so bad from a fatigue point of view that while it might seem like an over reaction the thought "I would rather just die than put up with this level of tiredness forever" did occur more than once. 

I had not planned on going back to the CPAP but decided to do so in the end just in case by some sheer miracle it worked and surprisingly I have picked up in terms of my daytime fatigue and cognitive function. I was coming home during those three months and was ruined by 4PM but have recently started to pick up the energy again to be able to function with my partner after hours.  

Going off and on the CPAP was the only change but it infuriates me because my own report says in reality this should not be my problem. 

I know I must seem to be showing some pretty crazy concerns here but this all started years ago because I wanted to know why my sleep was bad and I want to know I am treating the real problem, not just getting crazy placebo CPAP fixes or having random periods of good sleep give indications of a successful treatment that are actually false.

I have attached my graphs, they are from a recent session.

[WhyMe]

The AHI of 20 appears to be related to the total arousals rather than total respiratory events. Without knowing what the arousals related to, it’s hard to figure out what is going on. At any rate, having 20 arousals per hour, from whatever cause, is likely to leave you feeling unrefreshed n the morning.

[jato]

I can no longer edit my last post and I accidentally left the calendar in the shot. My apologies!

[jato]

So I skipped treatment for a night while playing my "surely I do not have sleep apnea" theory. I felt like complete crap the next day, more so than usual. I went back to treatment last night and while I am still waking up and I can feel I am not sleeping right I very much feel better than the night before without it.

Whenever I look at my zoomed in charts, my actual breath flows often look very janky. Jagged or flattening and rarely do I have a sustained period where I get nice smooth curved even flows.

[Dormeo]

jato, your on/off experimental results suggest the machine is doing you good, but it’s also reasonable to wonder why it isn’t doing you more good.

The zoomed-in look at your flow rates shows the dented or flattened peaks that are typical of flow limitations. Your machine has its own way of flagging FLs, but I bet on my ResMed machine you’d see FLs much of the night.

FLs mean you have to exert more effort to inhale. There’s a useful video here:

https://m.youtube.com/watch?v=-gie2dhqP2c

FLs can contribute to sleep disturbance and disrupt normal sleep architecture (the cycles of kinds of sleep that we normally go through).

Sometimes higher pressure can help to improve FLs, but I’m not competent to advise you about that.

My interest in this subject comes from the fact that I have very low AHIs, quite a lot of FL, and fairly unrestful sleep. Some of my problem comes from a different source (pain), but I’ll be following your thread with interest!

[Sleeprider]

Your pressure is too low for effective treatment. Even if you had no apnea, this setting would leave you feeling air-starved and with teh Philips machines, it just isn't going to get out of the hole. Let's get your minimum pressure up to 7 or 8 cm and set flex to 1 or 2 and see if that makes a difference. I would bet on it.

[jato]

Hi,

I would think you are both right. Reviewing my longer term history (ignore the gaps its time I either left the SD card out, surgery periods in which I could not use my CPAP etc) my most effective treatment period in which my breaths in the flow rate look reasonable and align with lower statistics in my summary is when pressure was above 8 consistently. The second I drop below (because I started playing doctor and doubting the diagnosis and thus lowered the pressure) is when the numbers start going up.

I attached the summary in case its helpful in showing the correlation between pressure over time.

I also attached a few more zoomed in flow rate graphs, one from what I assume must just be a strange period where I don't know, held my breath for ages or something? The other two are just from trying to find a relatively "normal" period of breathing.

I might go back to 8.5 which is where I seem to have the most consistently low numbers.